Handle with Care: Empathy at Work

– Susan White

I don't think people understand narcolepsy. They don't understand that. I'm sure any other invisible disability. It was hard for me to talk about because I know you're with all your colleagues your friends you're focused on work and you've got your adult daughter at home in the dark in a room that she's you know for three days maybe she only got up to go to the bathroom and eat more food. I mean it's just horrible.

INTRO

When I was in college, I was a rower on the crew team. This meant that I would get up really, really early to be on the water by 4:45 AM. Exhaustion would hit later in the day and I found it particularly hard to stay awake in afternoon Spanish class. I would doze off regularly during conjugation exercises and my friends teased me, "Tenga narcolepsy?". It was an ongoing joke and, until this podcast episode, I had no idea how debilitating and devastating narcolepsy can be on an entire family.

Today's episode of Handle with Care is sponsored by FullStack PEO. FullStack supports small businesses and entrepreneurs, expertly taking care of your people and benefits so you can focus on what matters most, growing your business. We are also sponsored by Handle with Care HR Consulting. From death to a diagnosis to a relationship transition, we equip you to support people when it matters most.

Susan White, today's guest, is many things. She is a life-time Indianapolis native who loves her corner of Broad Ripple. Susan is also a breast cancer survivor and the mother to a daughter with narcolepsy, which she says is much, much harder than battling cancer. But before we get into her story, a little bit more about Susan.

She worked for many years in the field of HR. Podcasting is a great love and hobby of hers. She is the co-host of the Joy-Powered Podcast, where I had the pleasure of being a guest last year.

- Susan White

People spend so much time at work and they put so much of themselves in it that if it is not a joyful environment it can actually really bring the bring the person to their knees. So the point of our podcast is how do you create joy in the workplace and then how do you sustain it. So, our target audience in general are business leaders and H.R. professionals.

- Liesel Mertes

Tell me a little bit about your family.

- Susan White

Sure. I'm married to Bill. He teaches at IEP. He is an architect and he loves construction management which is what he teaches. We've been married for all right don't think really quick do the math. I think 37 years. Congratulations. Thank you. I have a daughter, Erin. She's 35 years old. She works here in the broader Broad Ripple area and we have a son Grady who is married to Amber and they live in Scottsdale Arizona and they have my grand dog.

And now, to some of the hard stuff: when Susan was 49 years old, she was diagnosed with breast cancer. She was working for a financial institution as the Chief HR officer, an exciting position.

- Susan White

So I was in it for about six months when all of a sudden I went from my normal mammogram and even risk right after right after I'd had the mammogram done the technician came in and said I need for you to talk to someone because we see something on there that doesn't look right.

Susan was sent directly to the hospital for a biopsy. It was a fast moving cancer.

- Susan White

When I look back to those days I remember that I had I felt like I had inside my brain a neon light that was saying cancer, cancer just kept flashing.

- Susan White

And in the meetings I found myself unable to concentrate which was not me. I was just so distracted with this flashing neon light in my head. You've got cancer you've got cancer. So it was it was it was a real disruptor and trying to process it all right.

- Liesel Mertes

Well and then it sounds like the nature of the cancer was fast moving enough that they wanted to intervene quickly. How did that go with lining up medical leave? Did you find that your employer was receptive? What were some of the, the processes that played out for you?

- Susan White

You know, it's interesting as soon as I found out I had breast cancer I started doing a lot of reading and I read something like I think the book was Chicken Soup for breast cancer survivors or forgive me if I thought the exact title anyway.

- Susan White

It said in there that you will never feels so loved as when you have breast cancer in your whole life. And that's exactly how I felt I could not get over the outpouring of support and love almost every single person in this financial institution that I told they, they knew somebody themselves who had been affected by breast cancer and they were so supportive. My, even though I'd been in this business less than six months the CEO of the company is like oh you just go give him health is just you go give him hell we're right here for you.

- Susan White

I mean it was just unbelievable amount of support.

Friends began to bring meals, out-of-town colleagues offered support and housing as Susan considered second opinions. Her husband noted that their house began to smell like a florist shop because of the overflow of flowers. And then there were the pjs and slippers and chocolate.

After treatment, she returned quickly to work, despite the exhaustion of long days. Eleven months later, she was diagnosed with endometrial hyperplasia with atypia, a cancer that necessitated a hysterectomy. She was already weak but heading back for an additional surgery. And that is when Susan's daughter, Erin, began to display worrying symptoms.

- Susan White

But anyway, for us that was kind of building and then I realized what was going to have to happen I was gonna head back into a major surgery. All of a sudden, our daughter who had mentioned earlier she was experiencing some real problems. She was falling asleep a lot. She was not being able to get up. She was living independently she was working as a paralegal. She lived with a girlfriend in a apartment downtown and we thought she had launched for life right. Well, all of a sudden, she was like panicking a lot really high anxiety because she kept sleeping and could not wake up.

- Susan White

She was being extremely forgetful. She kind of had a history of always being a little forgetful but I mean it was it to the extreme she was becoming kind of paralyzed she'd say like I could see she would be driving as she could see like a parking lot she needed to get to and she would be so exhausted she wasn't sure she could get there. She, whenever she got off of work, she would just go and lay down and she thought

- Susan White

I'd still tell anybody now the best day of her life is when she got the diagnosis that was narcolepsy because she thought she was losing her mind.

Narcolepsy is still considered a rare disease. For Erin, the onset was quick and devastating. This autoimmune disorder can be triggered at any point in your life. The onset often happens in late teens and early twenties. Erin was just 24. And the symptoms appear on a spectrum. Some people are functional with medication and there are others that really don't get out of bed again.

- Susan White

It is so chronic and so awful.

- Susan White

Erin is on that spectrum. But she at least initially without drugs is really, really bad.

- Liesel Mertes

Well and what is that like? So you're in the midst of your own health like cesium which is pretty complicated. What was it like for you as a mother to be absorbing this news from midtown Broad Ripple about what's going on with your daughter?

- Susan White

It was, it's devastating. I often have said that I wish that God had given me the narcolepsy and that Erin I know how to organize myself through things. I'm a really good cope-er. And I just hated it. I'm not good at coping watching somebody I love suffer and she really, really suffered. She lost her job very quickly because she could not stay awake just kept she was to fall asleep standing up she fall asleep there. They moved her to her less intense role from paralegal to like the front desk receptionist.

- Susan White

She couldn't stay awake there. I kind of get why you can't have a in a law firm. The receptionist asleep but unfortunately for her she lost her you know was not able to stay in an apartment. She had no money coming no money coming in so she moved home with us. And so, I was recovering I actually started back to work before she moved back in with us but it was a long journey of her living with us for about five years.

- Liesel Mertes

And what are the emotions that she's having to make these transitions like are there or are there moments that are that really stand out in your mind as her mother of just how you felt walking with her on that journey?

- Susan White

Erin we would say things that would just crush me about what she was experiencing and I I could feel it for she.

- Susan White

This was not the life she'd intended right. She had a life that was not living in her old bedroom in the dark. You know, it's trying to get capture enough sleep. She'd say to me, Mom that is where I go for my dreams to die. I was just so sad. And I think that she had a really she went through several years of understanding the life she knew it was gone and her new life was going to be on her best day and a best day with all the meds that are very powerful harmful types of drugs. But to get her to about 80 percent of what you and I have. So, I think that for me watching all of that was just the most disruptive thing in my life.

- Susan White

You know I'll take, I'll take cancer tomorrow. I will. I'll take you know if any more work gets to get rid of female workers I'd give them up. I would do anything I could not to watch her go through that.

It was a challenge for Susan and her husband to know how to support Erin well.

- Susan White

Yeah. I tell you it was really hard those first few years especially when Erin was living with us because we were almost empty nesters our son was finishing up college and so we had a lot of time to ourselves and then to have somebody in the house who's not well was really tough. And my husband often said you know he was trying to figure out where you know how much of this was the illness how much of it was Erin like. Is it laziness that she's not doing these things or is it she's incapable of doing these things.

- Susan White

So that was a really tough time through that because I am, I tend to believe everything is the illness. And Bill believes that there's always a personal accountability so we can. I think we're in a good place now figuring all that out. And she lives independently which is superb but we're very involved in zero a lot which is I think really good. But it was I think there was a there's a road to walk there and you're never going to have both on anything in life. I think see things exactly the same way.

- Susan White

But in times of trouble and times of angst it can really test your mettle.

- Liesel Mertes

I imagine that to care for your daughter was asking a lot of you. How did you find that that intersected with your world of work and the time and space you needed?

- Susan White

I don't think I did it very well. I know I did do it very well. We big at work all the love and support you get when you're sick. It's not what you feel when you've got an adult child who has something horrible happen to them. I think if it's all invisible. Right.

- Susan White

If Erin had been in a terrible accident or if something physically had that people could see and understand. I think it would be different. I don't think people understand narcolepsy. They don't understand that.

- Susan White

I'm sure any other invisible disability. It was hard for me to talk about because I know you're with all your colleagues your friends you're focused on work and you've got your adult daughter at home in the dark in a room that she's you know for three days maybe she only got up to go to the bathroom and eat more food. I mean it's just horrible. I used, I for the first couple of years I know I walked around with a big lump in my stomach that I couldn't figure out you know how to lessen it a little bit of time I did have outside of work I would try to research like what's going on at this what is this about.

- Susan White

We found that narcolepsy network which is a wonderful national organization that help people and caregivers of people with narcolepsy. They have national conferences. We started going to national conferences. It was so helpful because it helped us learn what was happening what causes this disease which is they still don't know but they have different ideas of what might what you can do with it. How do you manage to live around it is incurable. They're working very hard to find a cure but may not be in our lifetime. So, it was also good for me to meet other parents of people who had narcolepsy and for Erin to meet other people who have narcolepsy because it's hard to find people who have it.

- Susan White

That was very helpful. But around the world of work it was tough because people didn't know I mean I'd share it but I don't share it widely because it's a hard thing to bring up. I just I had kind of a kind of a dark cloud over my head for a number of years.

- Liesel Mertes

Did you feel like that had an effect on your presence with your colleagues or within your projects?

- Susan White

You know there's that aspect of a cloud hovering.

- Liesel Mertes

How do you feel like it came out in your interactions in a particular way?

- Susan White

I know that I felt like I realized that the medicines you have to take are extremely expensive. Of course, Erin wasn't working and she's 24 and she. Back then it was we didn't have the Affordable Health Care which you could stay on your parents insurance to age 26. So we didn't have that option. And so we were paying for medical insurance for Erin and we were paying out of pocket incredible amounts of money for drugs. We were paying thousands upon thousands of dollars. One time that sounds horrible. What time it was to Costco to fill out order one of one of her prescriptions and it was $1125 and I wasn't expecting $1125 at that moment I just remember crying there I was across Costco and I had to figure out at that moment to get $1125 for one of her prescriptions for one. So anyway, it was just it was I felt as though with work I needed to work even harder because I didn't know if Erin would ever be able to work. I didn't know if Erin would ever have insurance again other than what we could provide. So yeah, it rocked my world. It certainly did not let me keep my eye off the ball because the ball working was extreme more important than it ever had been you needed to me.

Susan is a self-described optimist…and even in these trying times, she channeled her energy into helping others within her organization. She joined a working group as the global co-chair, devoting herself to making space for people with disabilities.

- Susan White

But we grew by thousands and thousands of employees in Australia and India and the Philippines and we'd already had a chapter in England and several in the United States. But it was so great. And I got a chance to talk to people who were caregivers and people disabilities who said I never felt comfortable talking at work about my disability until access ability started becoming really popular and it was OK so I got a lot from that.

- Susan White

It was something I could do in the world of work to try to speak to the pain I was having in my personal life.

However, after 35 years, Susan got news that her job was moving to Chicago. Unwilling to leave Erin, Susan left her job instead.

- Susan White

But so, my job was eliminated and it really, I often say was the best thing in my life. That disruptor was great because I needed to be pushed out of that nest. But it gave me time to focus on Erin and to really figure out what type of insurance was the best one for her as opposed to what we would just get thrown. It helped me really help Erin get back on her feet and I think it also helped Erin when she realized that I was losing my job and has expensive as medicines doctors insurance was she realized that she needed to do to figure out how to work around this disease.

Erin went to a vocational rehab program and got a job working with Goodwill, part-time.

- Susan White

So the last five and a half years, Erin has been working the value that she gets in her life being able to work just brings me joy every day. I try to remember to start every prayer with thank you Lord for Erin being backups upright in the world and getting a chance to work.

- Liesel Mertes

What do you think, it's a two part question: first part, what is the greatest misunderstanding or thing that you wish people could know about narcolepsy in particular?

- Susan White

You know narcolepsy has been written up about it kind of in a joking way and in movies it's kind of funny. I got to tell you it's the least funny disease I've ever heard of.

- Susan White

It's so sad. So I think that's it. That's probably the number one thing to be aware of with it. And I guess second of all is that it is not only is it physical and that although it's that appears to be invisible because people can't see you've got it is that it also kind of it, it messes with your cognitive abilities when you don't get enough sleep. Now people realize this you don't get to that level of rest that you need you're not restored and your brain is functioning right. So, a lot of people's narcolepsy will tend to be very forgetful.

- Susan White

It's hard to concentrate. There's a lot of things that go to person with narcolepsy they have a hard time maintaining friendships or relationships because they're in bed most the time they can't make a commitment that they're sure they're going to be at sometimes until the day of the hour before. So that's a tough thing. So, if you happened unfortunately to have narcolepsy enter your lives please be patient with those individuals. They've got an awful lot they are trying to plow through every day.

- Liesel Mertes

Mm hmm. And in a more global sense as a working parent who had a child who was going through something pretty intense and it's not just episodic, this is an ongoing sort of thing. What do you think the average workplace is, what would have been better support for you or what do you think was a misunderstanding that your workplace had and how you were doing or what you needed in the midst of that?

- Susan White

Yeah. You know, I never know blamed anybody. I own what I shared with people didn't share with people. I think that people don't appreciate when you are an adult but when you're the parent of an adult that you're a parent forever. First of all. And just because your kid isn't needed to get a softball practice or have homework to do that night you know you still feel extremely responsible especially when it's an adult that you know is not well.

- Susan White

I think that would be really helpful is if a colleague shared with you that they have an adult child maybe who's got any type of a bad thing in their life.

- Susan White

Maybe they're addicted to addicted to drugs. Maybe they have a mental illness. Any of those types of things. If someone to share that with you that it's good maybe just periodically check in with them. Ask how here he's doing. You know ask if there's anything new with Joe. Just let them know. Kind of validating so that the person who's carrying that load doesn't feel like they're just carrying it alone in the dark.

- Liesel Mertes

It's just not very popular to, to have probably, that I'm struck as you say that there could be a thought of oh how can I remember all this. But we, we remember when we interact around things that we feel are important or they catch our interest. I could note your favorite sports team is and want to razz you about it every week for you 16 weeks of football season. It's there's a gap, that actually we either don't feel comfortable in knowing how to talk about it or we're not giving it that level of mental importance to think, I'm gonna remember this about Susan and I'm gonna ask her about it because it matters to her and that it's exercising a different element of intention and discipline because I can remember things about a co-worker you know it's just we remember what was.

- Liesel Mertes

Yeah right. Which interest us and it's switching gears to, this is important. I'm going to I'm going to remember and I'm going to check in around it.

- Susan White

I think if it's an uncomfortable topic people really like to avoid it and I get that, but I and I would say to you that sometimes people who do care about me and care about here and we'll say how's Erin. And I'll say you know good days or bad days doesn't mean I necessarily need to share but it's so validating that somebody even asks that they recognize how much a part of your world it is.

- Liesel Mertes

Exactly. So asking and checking in is meaningful. Are there other things that you think you know even and like me, I would have I would have appreciated this that come to mind?

- Susan White

Mm hmm. You know, I have some very dear friends who really make an effort at reaching out to Erin on her birthday or just doing really kind things for her she's loves to do art and like you know buying her art or her little note cards or they just do things that are so validating for Erin and they know her world is so small. It's sleeping or working and it's just so appreciate. I so appreciate the fact when anyone very close to me makes a point to kind of brighten her life to care for your daughter.

MUSICAL TRANSITION

- Susan White

I think if I could do it all over, I think I would take a leave of absence and really take a breath and instead of waiting till I'd lost my job to do a lot of the research to figure out what what's the right type of insurance and medicines and she would issue what the right neurologist is so and so forth I think I would have I wish I had no regrets except for the fact that if I to do it all over again I take the time to make sure we were on the right path as opposed to just reacting and learning on the fly in the moments that I could hear that.

- Liesel Mertes

Susan, is there anything else that you feel like is meaningful in your story or helpful to someone who is perhaps walking with someone whether it's narcolepsy or a different disease that you did not get to say you'd like to? Mm hmm.

- Susan White

You know I, I do believe that we all have to have hope and positivity. And it's sometimes like in your darkest days where you can't see it. You just kind of have to remind yourself you know what a gift that person is in your life like Erin is such a gift in her life. And you know you, you do the best you can in each moment. So, I just, don't be too hard on yourself. It's really important that as a caregiver you take care of yourself.

MUSICAL TRANSITION

Here are three key takeaways after my conversation with Susan

• It can be very isolating to have a sick adult child.Susan talked about how isolated she felt, how co-workers did not know how to reach out. Susan reminded us of the importance of checking-in. If you know that a co-worker has something hard going on in their personal life, it can be immensely meaningful to periodically ask how they are doing. If you are prone to forgetting, and many of us are, take time to write it down in a file do that you can remember to follow-up. Your intention and care will help to remind them that they are not forgotten.
• If you have just absorbed hard news, it could be helpful to take a leave of absence.Susan reflected that stepping away earlier would have allowed her the space to breathe and get things like insurance in order. Does your company offer this kind of support and space to employees during times of disruption?
• If someone on your staff is experiencing a rare disease, or supporting a loved one that is suffering, the expense and the process of information gathering can be immense.Susan spoke about her Costco breakdown and the many hours she spent researching and participating in support groups. Your friend or co-worker is likely navigating complex support systems and financial concerns in the midst of work and other life commitments. Be patient with them.

A special thanks to our sponsors. Are you an entrepreneur or small business owner? Does the thought of navigating health insurance and benefits make you a little queasy? If so, FullStack PEO is there to help, providing benefits for your people so you can get back to work.

Do you want to attract and retain the best talent by being an employer of choice? If so, Handle with Care HR Consulting has services to help you provide support when it matters most. Through targeted, interactive sessions, we empower you to respond with empathy and compassion during disruptive life events.

Thanks for joining us for this first episode of the new decade on the Handle with Care podcast.

OUTRO

Link to the Narcolepsy Network: https://narcolepsynetwork.org/

And at the end of the day it felt like these are the people I spent 50 hours a week with. I was in the office seven something every morning always wanting to do my best for the people I worked with. And at the end of the day I left and only heard from one person ever again. And these were my friends for years. The people I spent the majority of my life with

INTRO

Today's episode is sponsored by FullStack PEO. You are a small company, an entrepreneur that has just hired your first staff and you have big plans for 2020. Let FullStack take care of your benefits so you can take care of growing your company.

On Handle with Care, in some interviews, we get to hear about companies that care well: the manager that comes with a hug and encouragement, the employees that struggle but come out better on the other side. This is not one of those stories.

My guest is Jennifer Merrell. Jennifer is a hard driving achiever who gets sick. Her illness is prolonged, mysterious. She gets sicker and sicker. There are misunderstandings and deeply painful misses before the sad collapse.

But before we get into that story, a little more about Jennifer. Jennifer loves to climb and to hike, particularly down in Clifty Falls, where she would travel each year with her boys.

Jennifer Merrell

Outside of work I spend a lot of time I try to work out so I'm also a certified pilates instructor so I try to substitute teach pilates where I can.

Life is busy, helping to chauffer her 16 year old between track and orchestra

Jennifer Merrell

Yes. I feel like I drive for work every day whether I'm on the road going to one of our members locations or I'm driving downtown to our main office and then I come home and I drive some more.

When she is not driving, Jennifer works at Techpoint.

Jennifer Merrell

Techpoint's role is to accelerate the growth of technology as an industry sector in the state of Indiana. I manage our university members and about 17 corporate mid-sized tech and tech enabled companies. And our role is basically to connect them to one another to do business or to collaborate to share best practices to connect

– Liesel Mertes

So what we wanted to discuss today was within that professional journey whether at Tech point or previous to it you had some disruptions with your health that led to some major detours and kind of unexpected twists and turns in the path. Tell me a little bit about some of the disruptions that your health had and how it affected your professional development.

- Jennifer Merrell

Sure. I've had it in reality probably three major health disruptions. One in my thirties read horrible stomach pains and all kinds of problems with that for several years.

Those pains continued and found a culmination in a dramatic, life-threatening encounter with a crab lobster roll in Omaha. Jennifer went into anaphylactic shock on the street and was later diagnosed with a profound gluten allergy. Jennifer then went on to have female bleeding problems, which led to a tremendous loss of blood.

Her life and work are affected for a couple of years. Jennifer can't go to the gym or sit through long meetings without having an embarrassing problem. It is uncomfortable to talk about to male coworkers and managers and is emotionally and physically stressful. Finally, she has a hysterectomy

- Jennifer Merrell

Now I'm in a leadership position and fast forward three four years and things are going pretty swimmingly along.

- Jennifer Merrell

But I started you know if we look backwards I probably was very sick for many many many years and maybe these things contributed maybe they didn't. The doctor says they don't but I'm like I don't know. There's a lot of things in there. And if you talk to my therapist she'll tell me that's all stress related.

At the close of 2017, she starts to feel suddenly weak, out of breath. She loses weight all at once and her hair starts to fall out. Dark circles appear under her eyes.

- Jennifer Merrell

I had hit my leg with my car door in the parking lot at Kroger actually and made like a little slice and it just had not gotten better it was still real dark. It wasn't a scab anymore. It is real dark and weird.

My knuckles were really dark to the point that one of my friends said What is wrong with your hand. And it's like I don't know maybe it's always been that way. So this strange thing with strange things happening.

- Liesel Mertes

Give us a little bit of a context. You mentioned stress as a contributing factor. What did your pace of life look like?

- Jennifer Merrell

Hard and fast hard and fast. So I probably I was in a relationship that wasn't probably very healthy for me but probably not necessarily recognizing that at the time I was working a lot because I really wanted to perform I was a high achiever in and in our culture we tend to equate high achieving with working a lot right.

- Jennifer Merrell

Are you busy. Yeah. Are you busy. I'm busy and busy and busy and we tend to reward or think there's importance attached to being very very busy. I wanted to achieve.

- Jennifer Merrell

I wanted to make more money I wanted to have more title I was running two kids around still and I was trying to be supermom. I wanted to be at all their events I wanted to volunteer I was a teen mom for the soccer team and doing travel soccer and my other son was in Boy Scouts and I wanted to go on a few camp out every year and help volunteer at all the meetings and trying to put it all in. So I would say like on a Tuesday I would go to work.

- Jennifer Merrell

I would pick up my younger son. Actually this is this is the sad part. I would go to work and I had a high school girl I paid to take my younger son to soccer. I would go to the soccer field and I would watch practice. I would pick him up I would pick up a sandwich on the way and have him eat and change his clothes into his boys got uniform pick up my older son take them both the Boy Scouts I would go run two or three miles while they were at Boy Scouts then come back pick him up now it's nine 15 nine thirty go home help them with homework clean up the house catch up on any work go to bed.

Her fingers and toes are turning blue and, at this point, she is down to 100 pounds. She goes to the doctor, who thinks that this could be manifestations of depression after her break-up.

– Jennifer Merrell

I said well I'm sad about that breakup and I said I know I'll get over that and I'm not depressed because I know these are all symptoms of depression. So she put me on antidepressants and the first one made me want to kill myself literally I called her I said I want to kill myself every day this is not OK.

The mystery continues; Jennifer cycles through three different anti-depressants and is going to physical therapy for the strange spasms in her legs.

- Jennifer Merrell

So I am now missing a tremendous amount of work I'm at a doctor's office every two weeks I'm in physical therapy twice a week and I'm seeing a mental therapist every two weeks.

– Liesel Mertes

And how did that communication go with your workplace? What were you sure. Were you saying I'm depressed. I just needed to. How much are you letting them in or not?

- Jennifer Merrell

Not a whole lot. They definitely knew something was going on and I was definitely articulating that. I'm tired I'm weak. And by now I'm shutting off my light at lunch time and I'm taking a nap on the sofa in my office. Because everybody's lunch because I'm exact I cannot stay awake.

- Jennifer Merrell

I can't focus so my work product is definitely suffering but I'm trying so hard. I mean it was it was so mentally anguishing how how hard I was trying to do well you know trying to still succeed in the box by which we define success in the box by which people were used to me achieving.

- Liesel Mertes

So yeah. How did it feel to be tried so hard but to still feel like you were not producing the way.

- Jennifer Merrell

It was horrible. That made me cry.

- Jennifer Merrell

It was horrible it felt like I was failing at life where I had always succeeded at life. I was used to being the star performer right and I was failing and I was doing everything I could not to the pressure was mounting. I was too tired to attend my son's track meets.

It was really it was really horrible. I really and I really did feel like I was dying but I'm gonna beat this right because I I when I beat things I overcome them whatever the problem is I solve it but yet I'm seeing all of these medical care providers and no solution is coming.

Jennifer had planned to take her boys to Paris for spring break. It was a trip she had promised to her now-senior-in-high-school son when he was in 8 grade. She had saved and planned and, despite her deteriorating health, she felt like she could not miss the trip.

She pukes all the way up to Chicago, trying to multitask on the road. She is tired over those first days, but soldiering on.

– Jennifer Merrell

We start walking down the Champ de Elysees and I go wow I don't feel very good. And we sit down on a bench and I vomit literally all over my shoes which began a very very rapid decline. So after that I struggled for us to get to the train. My kids were sort of holding me up. What do I do now? I'm in France and I've got two kids with me and I've got to survive.

She ends the trip in a wheelchair and, when Jennifer arrives Stateside, she has set up an appointment with a new doctor.

– Jennifer Merrell

Two days later I was in Dr. Tara Land's office with community health systems and she looked at me and she goes, "What's going on?".

- Jennifer Merrell

And I said I am dying something inside me is killing me. And she looked at me and the first thing she said is I believe you. And she started looking along over she was I believe you and I need you to go to the emergency room right now.

Maybe it was a stomach bug? She gets treated and goes home after some days in the hospital. Jennifer goes back to work and returns for more blood work.

– Jennifer Merrell

She the nurse called me. You're gonna love this. She says we need to go the emergency room right now and we're looking your blood work and I said I don't have time I've missed too much work. It was evident to me that there was a general unhappiness for quite a while in my office with maybe my work product but probably my lack of being there and how sick I was.

But she deos go back to the hospital. Her blood pressure is troublesome and her heart is struggling. There are biopsies and chest x-rays.

- Jennifer Merrell

They ran tests all night. The next morning I really thought when I went to bed that night I was not getting up. I said goodbye to my kids. I had seen my mother. I had not seen my dad but I was so out of it my brain was completely gone but the next morning they gave me the shot and it was like a computer turned on.

The shot that Jennifer got was of cortisol. Because the doctor's had diagnosed her with Addison's Disease.

[00:47:48.130] Most people have heard of it just because JFK had it that was it revealed after his death. But it's a very rare disease where basically your brain sends way too many wrong signals to your adrenal glands

Addison's Disease is an immune reaction that can be triggered.

– Jennifer Merrell

And what it does is it destroys your adrenal gland the outside of your adrenal glad which makes the cortisol. Some people damages it. Mine was so far it's destroyed so don't make any cortisol on my own at all. And people you know they see commercials cortisol makes you fat. No no cortisol controls your blood pressure regulates your kidneys regulate your metabolism allows you to balance your salt and your water in your body. So I can't maintain any of that on my own or I will die. And it's called in Addison's crisis and it can be triggered by stress mentally physically emotionally.

- Liesel Mertes

And what is the treatment. You mentioned getting an injection.

- Jennifer Merrell

So they injected me with cortisol straight up cortisol. So now the good part is to maintain this to stay alive is pretty easy and cheap.

- Liesel Mertes

Did you see, immediately start to feel improvement?

- Jennifer Merrell

It took a while. And actually the doctor and this is this is the next interesting part she said you need to take four or five months off of life.

- Jennifer Merrell

And accordingly she goes no working no working out. She goes I want you to lay around and we should be lazy because what your body has been through probably for years you know it's basically everything was failing in my body. I mean it was a full body failure inside outside everything. So I felt very, very weak for quite a while. It was almost like learning to walk again. I had to just walk to the mailbox first then I walk down the street. It took a long time. This is all weird things that still happen.

- Jennifer Merrell

So it's been a year and a half. But she said take four or five months off. Right. So the next thing I did was go to work because you know that's what you do.

- Liesel Mertes

Why did you go to work?

- Jennifer Merrell

Because I felt like I would lose my job if I didn't. So that leads to your single mom. You have had all of this unexplained stuff. You've taken a trip you've needed to take time off. What was the implicit workplace norms or culture that you felt you needed to live into. You can't miss work. You just can't. You but has to be in that seat.

- Liesel Mertes

How was that said to you explicitly or, or how did you come to internalize that we can't have you out of the office this much another person in leadership actually.

- Jennifer Merrell

Guys what was it that person said to me because it was really stuck with me for a long time. I can't believe I'm going blank right now. It was said.

- Jennifer Merrell

Oh I actually had somebody tell me to get my shit together, like verbatim. You need to get your shit together. We also had somebody say I also had somebody come to me and say you know we all have things that happen to us in life. I have a thyroid problem. So you just need to get over it. And it was like not at all the same situation.

- Liesel Mertes

Yeah in real time so like you're hearing this how, how do you feel and what you saying that I'm hearing this a few days out of the hospital?

- Jennifer Merrell

So I actually I went back to work like he did. I was allowed to work some of the time in the office some time at the office and I did that for about three weeks and then I really felt like this is this is it's clearly becoming a problem. There were people that were actually being sort of angry to me. I was also told that they're trying to build a business here we don't have time for this. Yeah we're trying to run a business. We don't have time for this.

- Liesel Mertes

And what did people's anger, how were you perceiving that? Was it spoken?

– Jennifer Merrell

Yeah it was spoken. It was spoken. Yeah. Well first of all not being able to produce any cortisol for likely several months leaves you only producing adrenaline which is what creates fight or flight. So the only physiological reaction my body allowed was fight or flight. So there legitimately I probably was being reactionary. I probably was being defensive at times. So there is a fault of mine in there. Now I do have a legitimate reason. I actually did not have the hormones that allow you to handle things appropriately at all.

- Jennifer Merrell

It was a burden to the rest of the company for me to be out. That was what was said. It's a burden to the rest of the company for you to be out

- Liesel Mertes

Did you feel like there was a foundation of organizational trust that you could call back on or even prior to this what sort of an environment that felt safe or unsafe was present.

- Jennifer Merrell

Well that particular culture was definitely not one of trust. And then then there was there was an ongoing joke within the organization for several years after I started several years that well I'm going on vacation this week. Every time I go on vacation they fire the person in that seat prior to me. Nobody had really been in that seat more than a couple years. So there was always sort of this feeling that it was temporary in the eyes of upper management.

– Liesel Mertes

Anyways when I hear there's that organizationally there was a particular culture that was in existence that corruption and disruptive life event did come. It did not make you feel like you were operating from a place of safety or support in general in general in general.

- Jennifer Merrell

And then as I got sicker and lost the ability to be anything but fearful I think that that initial experience coming in and that cultural that awareness of that cultural peace in there I think was amplified. Mm hmm. And yes. Yeah. So I do not I have. And reality was I had already missed a lot of work and I was not performing at my best. How how how does an employer accommodate that in a small business? I'm sure it was a burden. I don't have the right answer.

- Liesel Mertes

So you mentioned anecdotally but just in a mental level what are some of the biggest ways that you feel like you were missed in your work environment or in your support community as a whole. There you go. This was just really painful.

- Jennifer Merrell

I was extremely loyal extremely loyal and that sort of thought process for me now is gone. I will probably not quite feel that way again about an employer because of that experience because I felt like at the end of the road even though they did make some accommodations for me for sure I felt like at the end of the day somebody who has worked that hard and been that loyal I just felt like some of the things said to me about you know getting your act together and you know you being gone is a burden to this company. Things like that are very hurtful to somebody who's really giving it their heart and who already feels like out of control.

- Liesel Mertes

So were there things that other your workplace or people in your community did that were really helpful and beneficial that you were like this was a this stands out as something that was really meaningful and there was silence.

- Jennifer Merrell

You know I think I think the biggest helpful now you know I actually there's a lot of things like I think about like you know we would have a client have a baby or be sick and we would send them card and everybody would sign it. And I was there literally on my deathbed. No I heard from them as have they figured it out yet. When do you think you way back. Nobody sent a card…

- Liesel Mertes

That sounds disappointing.

- Jennifer Merrell

This sounds you know I had some friends by myself. It's really sad. Well I think what it was was an epiphany. That you are an employee if you're in a company that thinks of you as more than that. That's awesome. Congratulations. I think that's gonna be a rarity because at the end of the day you were there to produce something for them and when you can no longer produce it they will question your value and as an employee that feels like they're questioning your worth as a person. Now maybe I lost my worth as an employee. That's you know I get that you know they're they're trying to work. Dollars and cents.

This is a business. I get it. But to actually be told I've got a business to run. Don't have time for this. Is very heartbreaking when you think you know what. I've got a family to run. I've got kids to feed. I don't have time to be sick. And that's kind of how I treated that illness is I have time to be sick. My family doesn't have time. My employer sure as heck doesn't have time now. Could they have done better. Yeah. Could I have done it better. Yeah. An earlier diagnosis the right doctor. A million puzzle pieces that have to fall into the right order.

– Liesel Mertes

I hear you the pain of that and and the shadow that that experience can create. As to how you want to engage or not engage in our actions towards each other have powerful effects especially in this moment of crisis.

– Jennifer Merrell

Yeah I felt like the people I worked with were my friends. And at the end of the day it felt like these are the people I spent 50 hours a week with. I was in the office seven something every morning always wanting to do my best for the people I worked with. And at the end of the day I left and only heard from one person ever again. And these were my friends for years. The people I spent the majority of my life with more than my family more than my personal friends.

I spent them with my work peers. And at the end of the day and maybe it's because they didn't understand what was happening with me. They didn't know how to handle it. But felt like you weren't cared about as a person. You have now lost your worth. And especially when you are that tied to your job and care that much about and do a good job and care that much about the success of the company when you are no longer able to do it at the the way they expect to ahead or was used to even if it's gonna be temporary. To find out that that's all that mattered to them. Think really was disheartening because to be honest with you I've worked several places and that's the only place that I left and felt like I was rejected by a group of friends when you felt like you were trying so hard to do everything you could. I was trying to do everything well even though I knew I wasn't. And I was trying to get better at the same time. Ultimately I needed to take that time off but I truly felt my job was in jeopardy.

I think that here's, here's the answer. I think that if that employer would have been able to say to me I know you have to take this time off and I'm going to make you take this time off and we're gonna figure out some way that you can still pay your mortgage and feed your children during this time.

I hear that and I feel like if my employer maybe maybe would have sat down and said let's brainstorm some options. I don't want you to be afraid to throw anything out there you know I know you're coming from a place of fear right now. I know you're scared but I also know you've been here a really long time you've done a great job and I know you can't do that right now.

– Jennifer Merrell

The reality is when a life crisis comes along that your employer is unfamiliar with whether it's a rare disease or just something they've just not had any experience with. It's scary for them to I had that empathy but your employer has to realize it's terrifying for the employee

- Liesel Mertes

And they're in a position of they're in a position of power. It's an imbalance of power.

- Jennifer Merrell

It's an imbalance of power and that just drives fear.

- Liesel Mertes

It does to you have you in fact. Yeah. Those were lots of words of insight you have any additional words of insight that you would say to a younger version of yourself or that you would say to someone who is maybe going through something similar Wow.

- Jennifer Merrell

I think. To be honest with you I'd say cover your own ass. They'd be my experience as an employee as you figure out how to cover your own ass because I didn't and I didn't because I felt like I wanted to be completely honest and upfront about everything but who I wasn't honest and upfront with was myself I wasn't honest about how sick I was to myself and I wasn't honest about needing to take that time off in order to get better to myself. You that's that, that would be my advice then to an employee.

- Liesel Mertes

Is there anything else that you did not get a chance to say that you would like to add?

- Jennifer Merrell

Well I mean I don't I don't want to say anything bad about a previous employer at all because there's so much more good than bad. So many more good things than bad. As I stated there's issues on my side and the other side and I don't think that that's unique to any one company. I think that this happens many, many places and I think it's really a couple things. I think it's lack of knowledge lack of trust lack of communication and lack of empathy. I think that employers they have got to produce and make money and revenue to pay bills. This is this is a fact right. These, these wheels all have to turn and every employee has a wheel they're turning.

- Jennifer Merrell

And when one is down it messes up the system. That's a reality. But somewhere in there there has to be a space for empathy because we are not just worker robots numbers on a page. Line items on your balance sheet. These are people and at the end of the day we all die and that money is gone. The company may come and go. Products come and go services come and go.

- Jennifer Merrell

At the end of the day when people are stealing you're talking about you. Do you want them to talk about how much money you made? How much impact you made to the economy? How big your house was or do you want to talk about how much you cared about the people around you?

MUSICAL TRANSITION

Here are three takeaways that emerge from Jennifer's story.

• Is the right answer, in Jennifer's words, "to cover your ass" as an employee?I hope not. Yet, her response makes sense, based on her experiences within a company culture. Which comes to my first take-away. Your culture matters! What kind of a culture have you created? Culture has to be purposefully shaped during times of stability so you have something to offer in times of disruption. If not, your employees will be exist in a sort defensive crouch, perpetually covering their collective asses because they don't believe you have their back. And your business will never ultimately thrive when your employees don't believe you have their best interests in mind.
• FMLA can be hard.It is difficult for an employee to have the resources to take six months off of work while still paying expenses. Some companies have a philanthropic outreach that exists for these situations. What sort of resources, if any, do you have in place to help employees as they face the prospect of being off of work for an extended amount of time?
• Disruptive life events are messy.As Jennifer acknowledged, there were mistakes the company made, there were mistakes that she made. Both the company and Jennifer were facing tremendous uncertainty as a result of her illness. But, the company exists as the more powerful partner. And this means that they way the choose to treat someone, regardless of outcome, has an outsized influence. Whether you decide to keep someone or let them go, do you make sure that they are being treated with respect and care?

I close with a thanks to our sponsor, FullStack PEO, where they care about people and are proficient with benefits and to Handle with Care Consulting, where we train your managers to give support when it matters most.

OUTRO

Is it, really, the most wonderful time of the year? With all the holiday greetings and everybody, telling you to be of good cheer? Maybe not. Maybe its not the most wonderful time of the year. And that is why today is a special holiday edition of the Handle with Care podcast.

INTRO

Cookies bake. Fires crackle. Familiar Christmas favorites play over the radio. There is holly and family gatherings and everything can seem to take on a glow of glad tidings.

And yet, this time of year can be a challenge, especially for those that have lived through a disruptive life event in 2019.

As I begin today's podcast, it is with a special thanks to our sponsor, FullStack PEO. There are so many demands on a small business. That is why the men and women at FullStack manage your employee benefits so you can get back to business. We are also sponsored by Handle with Care Consulting. Through interactive, impactful sessions, Handle with Care empowers you to give support when it matters most.

MUSICAL TRANSITION

Today is a special holiday edition of the Handle with Care podcast, in honor of the most wonderful time of the year. The focus of the podcast is empathy, showing others that we care, that we recognize their pain and make space for it. And so, I want to take a few moments to give a glimpse as to why this time of year could be particularly hard for people you care about and how you can be a supportive, caring, coworker or friend when they need it most.

For some, the close of the year is a reminder of the person that is no longer present at the table, the relationship (once warm) that is now cold and estranged. Or of the dream that simply did not come to be. On top of that, time with family can be strained and uncomfortable even in the most stable of circumstances, the shared table becoming a place of dread.

In the course of my work, I come across a lot of hard stories. Let me set the stage with a few of them:

• Michelle found out she was pregnant this spring. This is her first child and she was so excited, planning for her December baby. She and her husband had picked out names and started to move out furniture for the nursery when she miscarried. The snow and the lights are a reminder of the baby that she was supposed to hold this Christmas. The party dresses and events remind her of the maternity dress she thought she'd be wearing. She feels tired all the time. Tired and sad.
• Angie is getting ready to celebrate her first Christmas after the divorce became final. She gets the kids on Christmas Eve but they will be with her ex's family on Christmas Day. Angie dreads waking up to a quiet apartment on Christmas morning. She still feels angry about how the whole divorce went down. And the questions from her kids only make it worse.
• Mark's dad is in hospice this month. He's been there for nearly a year, Parkinson's can be a relentless disease. But now, they think that he's near the end. Mark never really had a strong relationship, but now he wonders if he should be visiting more. The end of the year is crazy at work and he doesn't want to take time off, but what if this really is the end.

These are just a few of the stories of people who don't feel all that jolly this year.

The holidays can be hard.

Everyone is supposed to be happy. Hallmark movies and parties and the marketers want to show that everything is OK. But, for those who have lost someone, their entire interior universe has been rearranged. Familiar rituals might be painful.

Tremendous pressure, everyone from the television to the guy with a bell outside of Kroger to your Starbucks cup is wishing you glad tidings and you wonder if you will ever be alright again.

In my own story, the first major holiday that followed Mercy's death was Easter, a time of celebrating new life and renewed hope. The trappings of the holiday could not have felt further from my reality. I remember the dread of the holiday, we were alone, living in Bloomington, and Easter could not have seemed further from the truth of my existence. We used a left-over gift certificate to pick up food from MCL Cafeteria. That was our holiday meal, unpacked from plastic containers. I just wanted the holiday to go away.

And grief, it can hijack you at the most unexpected moments. A familiar smell, a song, you can be going about your business, feeling fine when out of left field, you are powerfully sad all over again.

MUSICAL TRANSITION

There are a range of good resources on the Internet if you are someone in grief encountering the holidays, but there isn't as much for those of us who are supporting our friends and coworkers that are grieving. So here are three tips for the holidays

• It is not your job to fix someone or control their situation. This is a particularly American temptation: we want everyone to be happy and we are profoundly uncomfortable with grief. This can be further complicated in the workplace, where managers and coworkers want to get someone "back up to speed". Yet, the word "bereaved", sometimes applied to mourners, means to be torn apart. Mending takes time. Rushing someone through their grief or causing them to stuff their feelings will only backfire in the end. Alan Wolfelt uses the term "companioning the bereaved". Being with someone in their sadness and resisting the urge to fix them. What this looks like in a practical sense: allow people to skip the holiday party or the gift exchange. Let them know that their presence would be welcome but you understand if they can't come. This could sound something like this: "The Office Christmas party is next Friday. I'd love for you to come; you are an important member of our team. But, I realize that this could be a hard time of year for you. If you don't feel like coming, you don't need to come. Feel free to make the decision that feels best for you.
• Take time to acknowledge their loss. This might mean saying the name of the person that they have lost: "I know this is your first Christmas without John; I imagine that could be really hard." Or noting the reality of a new life situation: "This is your first Christmas since the divorce became final, I want you to know that I am with you as you find your way through this new reality." Maybe you don't even know what to say. What you say is less important than showing that you remember and that you care. If you feel at a total loss, say something like, "I have no idea what to say; I've never been through a divorce but I want you to know that I support you and am here as your friend/coworker etc.
• Send a card, give an ornament, fill someone's car up with gas, bake some cookies, or make a playlist of meaningful songs. Any of these meaningful gestures show that you have not forgotten.

Thanks to our sponsors: FullStack PEO, providing turnkey HR for emerging companies and Handle with Care Consulting, we help you attract and retain talent through holistic employee care.

A closing thought: there is no set timeline or progression of grief. Your heart can still hurt years after a loss. Knowing you are not alone is always meaningful. Connection is an essential part of stabilizing and surviving after loss. So, this holiday season, take time to remember those that have suffered disruption. Sit down for five minutes and think of people in your organization, your friend group. Write down their names and, over the course of the next few weeks, reach out. Your kindness matters.

OUTRO

- Julie McCorkle

I didn't allow myself to be as vulnerable as I probably would today because there are a lot of great people out there that do truly care even if they don't understand or don't know what you need. I think I would have voiced that a lot sooner.

INTRO

Today, I welcome Julie McCorkle. Julie is the head of HR at PERQ, a tech firm here in town. She shares about the difficult, embodied journey of infertility, and three years of IVF treatments, and how she and Chis welcomed Declan into the world.

This episode is sponsored by Fullstack PEO, where you can get Payroll, Benefits, and Peace of Mind. We are also sponsored by Handle with Care, HR Consulting, empowering your company to respond well when it matters most.

Julie, her husband, and their one-year old son, Declan, recently moved to Indiana from the Washington, DC area. They love to hike and explore the outdoors…as well as wineries.

- Julie McCorkle

We were in Northern Virginia and going like a little farther south and a little farther east it was just beautiful. I mean, the mountains, the Blue Ridge Mountains are incredible, great wineries which we probably went to a little too often. And you know great mountain top wineries. So as a little anxious moving to Indiana just the mountains are left right.

- Julie McCorkle

Yeah right. Like as flat and cornfields. But I have been pleasantly surprised that there's a lot of beautiful area here.

Julie came to Indiana to be the head of HR at Perq. Julie has been in HR for a long time, she likes to say that she stumbled into it. A summer stint with Huntington Bank in Ohio was her first foray into the world of HR.

- Julie McCorkle

They told me I'd be working in H.R. and I literally googled what H.R. stood for. No idea my parents are small business owners I had no concept. And I just stuck with it.

- Julie McCorkle

I mean I kind of started out in the benefits field and started moving more on the H.R. management side doing a lot of employee relations and just kind of expanding my wings and just kind of found my path so in time anybody asked me about H.R. and I would just say I'm like a glorified problem solver.

Julie brings both a commitment to problem solving as well as a deep care for people to her work in HR; it is one of the reasons that she is on the Handle with Care podcast today: her own experience with loss has deepened the role that she sees HR playing within organizations.

- Julie McCorkle

One of the things when I started opening up about fertility the amount of other people that were experiencing as well. I was blown away by and I don't think until you start having the conversations that you recognize how many people have suffered like a child loss whether it's a miscarriage whether they're not able to get pregnant whatever it is. I mean every person that I would talk to had somebody in their life that has experienced something similar right or were experiencing something similar. And I think just there's, there's work that's being done, a lot of the work that you are being done in the workplace itself so many people put on masks and different personas to survive to get through the day and don't necessarily recognize the impact that it is having on them or those around them like with work and aren't willing to have the conversations or are in a spot where they can't have the conversations and if they can't have the conversation then shame on that workplace.

- Julie McCorkle

Yeah right. Then it's time to move you're probably way too valuable for them anyways. So for my fellow colleagues like H.R. professionals we are the we're in the profession where it's our responsibility to navigate that for people. There's there's really strong structures that have been built within corporations over her years. Right. That's hard for people to understand and recognize and navigate and that's what our our responsibility is. And you're good. H.R. professionals they're gonna do that for you. So if you are experiencing it if you do need support talk to them.

Julie is an HR person that you would want to talk to, because she has gone through her own story of loss. And to understand that story, let's back up a little to her husband, Chris. Julie had finished school. Although Chris was older, he had done a stint in the army and was in his junior year. They were set up in a bar.

- Julie McCorkle

He bought me a beer. I was about it and when we started dating it just just went very quickly very very quickly. Yeah I mean we were, I think we were dating for probably about six to eight months when he accepted a job in D.C. and we had a whole year before we moved.

- Julie McCorkle

But Chris technically never asked me to move with him. He told me he accepted the job was like Oh OK great, I'm going with you. So, I didn't have a choice.

- Liesel Mertes

You declared your travel plans.

- Julie McCorkle

He said That's right. Well great. Charlie ready for the next adventure. All right good. We're going now.

- Liesel Mertes

You and Chris have added Declan to your family and I know that that is one of the things that you're here to talk about because that wasn't as straightforward as you would have liked. Tell us a little bit more about how long you and Chris had been together and when you decided that you wanted to start a family.

- Julie McCorkle

Yes. So our, I think everything in our life, Chris was far more relaxed than I am. And I definitely have I don't I mean there definite not stringent plans but I normally have my five year plan and we were both finishing up our masters and I always knew that at the point of finishing up our masters that that was at the point that I wanted to start a family. So, we had kind of had the time in line and you know we had been together.

- Julie McCorkle

So, the infertility journey was about three years. So we had been married for five had been together for about seven and half years and I think we were both very much ready.

- Julie McCorkle

And honestly, I just kind of expected it would be easy. It sounds terrible not that everything in our life has been easy. But you work so hard your whole life to not have kids and at the point when you want to have kids and start a family you just kind of expected to happen. Yeah I mean I definitely did it.

Julie and Chris start trying…a few months go by and Julie goes to the doctor. She gets some tips, and then there is testing, and then talking to a fertility specialist. By now, six months have gone by. But Julie is a problem solver, which is what led her to the door of Dr. Leilani.

- Julie McCorkle

She was she was very open and very honest in her communication just setting expectations from the beginning just from the initial just meet and greet and deciding if we wanted to go there and understanding all our options and what the process for testing and you know kind of, just all the cost and everything that goes into it and the time commitment and you hear everything you're like OK.

- Julie McCorkle

Yeah we can do this. I mean this is gonna be a significant commitment but we can do this. This is fine. And then as you go through the process you're like Do we really want to keep doing this? Do we really want to keep doing this? There's a lot more than you really expect. Right. It's hard to actually process all that until I think you're in the middle of it.

- Liesel Mertes

When I hear that is that perhaps there's initial decision to go down this path. But then there's lots of other decision points along the way. Do we want to continue doing want to keep doing that? Does that feel accurate to you?

- Julie McCorkle

Yeah absolutely.

- Julie McCorkle

And I think I don't know how similar other couples have experienced it but you know based on other conversations I've had it's probably pretty much the same. It's very incremental. So really, just understanding what the problem is in the first place and whether there's anything that can be done with it is of course the first step. So there's this whole slew of testing that needs to be done. And then there's there's like increments of certain treatments that can be done to see if they work and then it's kind of like just to wait and see.

- Julie McCorkle

So we had decided to do like two eyes right before going down the full IVF path and neither one of those work and that's a five thousand dollar investment and that's about a six month time frame like, Well that was like a total waste of time. Right. Total waste of time, total waste of money but otherwise that's significantly less expensive and less invasive than IVF. So, if we have done that I'm not sure we would have gotten to the same point. Right so there's a lot of back and forth like did I just waste six months of our time?

MUSICAL TRANSITION

- Julie McCorkle

The IVF investment for us was thirty thousand dollars. Yeah. And there are ways like and I had a very honest discussion about it like this is gonna be a significant investment. This is what we have to do in our family and our household to make it happen. Are we willing to do that. And the question for both of us is yes absolutely right. There's no reason why we want to do it.

- Julie McCorkle

We can make it happen. So we're going to. And I think there's a lot of coupling that couples that don't have that and I was also very fortunate to have a lot of support and just the time right to be able to go until late late to work every single day. So I have to stop for lab tests every single morning for a blood draw a lot of the way to start with the emotional social.

- Julie McCorkle

You get to know the nurses really well so least you've got great relationships. The traffic wasn't bad. No I was in a great, great fertility clinic. The traffic was terrible. Nice to see you this. It's always it's always vogue but there's a lot of people that do not have the ability to change their life for what they're going through.

- Liesel Mertes

Yeah well yeah I hear I hear in that. I mean that is an interesting consideration in the landscape of it not it not that it's like a privilege to walk through something that hard but it's not an option for you know some people that are like it's a hardship but it's not even an available hardship for some people who are like No. Like we don't have the financial resources to give to that right.

- Liesel Mertes

I'm struck that a journey with infertility is a very physical journey for a woman and lots of like logistics and scheduling. Would you tell us a little bit more about for someone who's not walked through that journey and give us like more of a sense of the physicality? Yeah what it is to go through fertility treatment?

- Julie McCorkle

Yeah you're actually right. So I think the physical ness was atrocious really atrocious. There's there's a significant amount of time commitment with scheduling; I mean I was in the fertility clinic every other morning just for bloodwork so just constantly making sure that you're eating the right thing staying away from alcohol which, I love my wine, constantly hydrated right just in order to get a good blood draw is something that it's it's always on your mind it's and it always has to be I think just in order to go through it. So the time commitment of itself is an impact on work, it's an impact on your personal life because it just takes over.

- Julie McCorkle

But the physical ness that you go through just from the medicines and just the side effects from, you know at one point when before they do the retrieval like an egg retrieval you're on a significant amount of fertility meds and my doctor described to me of like having a bushel of grapes sitting outside of your ovaries. So you just feel huge and gross and you can't move and you can't button your pants almost like being pregnant but you don't get the the great resource for it.

- Julie McCorkle

So in general I mean when I responded my body like I was about 30 pounds heavier. I was exhausted like absolute exhausted all the time and I just felt. GROSS definitely didn't feel like myself and when I actually got pregnant the first time in three years that I felt healthy again I felt normal felt more like myself and I loved being pregnant because of that there's a lot of people I think absolutely have terrible pregnancies. But for me my body had already processed a lot of the and just the changes in the hormones. So it's the breeze was great.

- Liesel Mertes

It's a long time to be feeling not outside of your body but ill at ease. Yeah your body just and all of that emotional stress.

Oh yes with that.

- Liesel Mertes

Tell us a little bit more about the emotions that accompany that physical journey. What would someone who has not gone through that what would they not understand that would be important for them to know?

- Julie McCorkle

So I think the journey and of itself like everything that you go through with the testing and just working through the process of fertility whatever treatments you decide that in and of itself is all consuming right: the time, the physical, the money, the financial commitment. Mentally, it was all consuming for me. So there was probably not a moment of any day that I didn't think about it. It was consuming of my dreams every single night when I would sleep I would have some sort of dream about our fertility journey and it's all I thought about.

- Julie McCorkle

It's all I thought about and it's you know for me. I mentioned how stubborn I am of like you know I'm not really somebody where you tell me I can't do something and then think that I actually can't do it. So, just starting to recognize the possibility that I'd never be able to have kids was very that was the most emotional part because I never had kids so I didn't necessarily knew what I was missing out on. Now I have Declan, I cannot ever imagine life without him. Right. But we were at that phase yet so

- Julie McCorkle

I think it's just the possibility of not having that and not living up to what I thought my life would be. It was hard to process.

MUSICAL TRANSITION

- Liesel Mertes

What were ways that people in your wider community really supported you?

- Julie McCorkle

Well yeah. So, I think my work team was actually by far the most supportive that I ever experienced. I mean they were incredible. I remember going to my boss really at the point that we started doing some of the testing because I was out significantly and I didn't want him to think that I was leaving right. I didn't want him to think I was randomly scheduling all these appointments and that I was interviewing. So I sat down his office and like, I just want you to be aware I don't know what the time commitment is but we're having some fertility issues.

- Julie McCorkle

And I just lost it. I just started sobbing and he got up and gave me a big hug and he's like, I don't, whatever you need, whatever you need. Don't stress about it and that. And I was very close with my former supervisor always he's a dear friend of mine. So I knew, when he said, like whatever you need, he actually meant it.

- Julie McCorkle

And I leaned on him a lot. I mean throughout. It was about a three year journey. So throughout that time frame just mentally and physically not being at work. I mean there's a lot that he took on to do that but it wasn't just my boss.

- Julie McCorkle

but the larger team that I worked with. I had two employees that reported directly to me at the time that I wasn't necessarily there couldn't be there were frankly if I didn't have the mental capacity to deal with something they did. So that team in of itself was incredibly supportive and it's just a question.

- Liesel Mertes

When you say that. So those moments in real time because this and they hear like not having the mental capacity to deal with the problem. Yeah. Did you have the self-awareness act like those moments to be able to say, I'm like I'm kind of overwhelmed right now? I need you to take this. Did they sense that? How did that communication go?

- Julie McCorkle

No I definitely didn't. OK. And that's one of things that I, after the fact, like after Declan was here and I kind of look back and reflect on that time frame. I like to think that I handled it pretty well. But I'm sure I didn't handle it nearly to the point like to the extent that I thought I did. And I knew that I was stressed and overwhelmed. But I'm one of those individuals where I just take it day by day. Right.

- Julie McCorkle

So if there's too many things on my plate I'm I don't like to pass off work. I don't like to say that I can't handle this. I just take it day by day. So I didn't recognize it until after the fact and until really until Declan was successful like successfully conceived. I guess I didn't realize how much the stress was impacting the fertility and kind of our issues and the last implantation they did. That was when my boss Ken mentioned to me, he's like, you need to get out of here like I do. And I told him I was like Yep I agree. Let's get out of DC.

- Julie McCorkle

I'm just gonna work from home. He's like, No I mean there's certain things I know you're going to do because you're stubborn you're still gonna do it but I don't want you to focus on a thing. So the team recognized it more what I needed than what I did right. And they were very good at kind of calling into attention of like I'm just gonna take this off your plate just gonna take it and handle it and I'll let you know how it goes. And you were able to release that to the eggs. I trust them immensely.

- Liesel Mertes

That's what I hear in that the importance of an underlying trust that's established in those moments where you can actually believe like oh they're not seeing me as incompetent. They're trying to care for me. I mean, there's a lot of underlying elements of culture that have to be in place for that to be possible. Yeah. Yeah for them to say let me take it. And for you to say OK. Absolutely do that.

- Julie McCorkle

Absolutely. And there was. You know, before I even started on the lab journey I had a great working relationship with my boss. I had a great working relationships with my team anyways, and we've always had really open honest communication. So it's a no brainer for me to just talk through it right and just talk about it and they knew my own little personal working style my own quirks and needs. So when they saw me get stressed or saw that I was running around a little frantic and probably not operating at my full capacity, that's when they stepped in and just did it.

- Liesel Mertes

Did they have any other particular awareness is or considerations for you within the years of that journey? I know that we had talked about things like baby showers in the office place. How did you feel like that transpired in your workplace and how you felt in the midst of those dynamics or how other people were caring for you?

- Julie McCorkle

Yes, I think the individual team around me was incredibly cognizant of those needs and you know, when I was going through the fertility journey you see others that get pregnant and you're really excited for them but frankly you're mad at them at the same time right. And there's there are individuals and then I was surrounded with both my personal and professional life that we'll get pregnant immediately and I became very sensitive over listening trying I don't even know if I want this child I'm like I just want to smack you excuse my violence I you know and my team understanding what I was going through was very cognizant of those conversations and would just just kind of pull me away or you know immediately change the subject whatever it may be. Just recognizing it before I would even recognize it.

- Julie McCorkle

And there are a lot you know there's a lot that happens in the workplace. I've mentioned to the colleague of mine she's struggled with infertility for 10 years and I'm not sure if her and her husband will be able to have children they still struggle with it. And she was at a place where she had just tried every avenue possible. There's really nothing else for them to try. Possibly except you know surrogacy and that was kind of the next steps. But there is a baby shower in the workplace and she had just suffered from a miscarriage.

- Julie McCorkle

I don't think anybody recognized why she was out but she was out on the day there was a baby shower. There's all sorts of baby things in her office they're just using her office to kind of organize and store things before the mom could put him in a car and she just shut down right.

- Julie McCorkle

So I knew her journey not many people did but I knew of her journey and I grabbed her that day when she she called me up and was extremely emotional in telling about it, like OK you need to go home. I'll tell your boss why you're home just just leave right, like this is what you need in this moment. And I think it's really important to have individuals in your life, regardless of what circumstances either personal or professional, that know and understand and can, you can recognize that that maybe pushes you for something that you need that otherwise you may not do yourself to be able to acknowledge that and give voice to it and give yourself permission to take that space.

- Liesel Mertes

What were some of the worst ways that your community like intersected with you or the things that you look back on and you think that was just so dumb or that was so painful?

- Julie McCorkle

Yeah. I think the worst honestly was my mom. It sounds terrible; I've got an interesting relationship with my mom anyway and I certainly recognize the things that she's not great at and I know why she is the person that she is and I recognize and I respect that. But, it's very different than me. And we process things in a very different manner. My mom's deeply religious. So everything to her goes back to the Catholic Church the Catholic religion and her beliefs and I'm honestly not so there's comments that she made to me all the time that just really dug into me and a lot of times I just kind of chalked up to, Well that's Mom being Mom right. I had a couple of times like for example she made a comment when I was going through the first surgery was home for a little going away party for my sister and she made the comment about essentially making sure that I'm going to church or leaks at the time they do become they're pregnant. The devil was gonna steal the soul of my baby and I just looked around and I just walked away right. And I mentioned it to my husband who completely blew up and he and I'm sure mom heard him blow up because we were having conversations like I can't understand why she'd make a commentary like that knowing everything you're going through right now and when he said that Mike you're asleep right.

- Julie McCorkle

You're absolutely right. Why would she make a comment like that? Why would she not be supportive? And just, the individual that's in my life the most that should recognize what I need right now.

- Julie McCorkle

I don't need you to say anything sometimes I just need you to listen. She wasn't able to do that but she's not who she is. So, there are points and there's a lot of my siblings I'm very close with. There are points that I think they have the same moments like giving advice and you just need to pray more you need to go to church.

- Julie McCorkle

Yes sir I don't think so. You. Where that was that shut me down. And you know after mom made that comment I didn't talk to her for six months and it got to the point when I actually got pregnant I'm like, well you know I actually want a relationship with my mom because I want my son to have a relationship with his grandparents right where I just kind of got over it. But I have now going through that journey recognize the people in my life that I know that I can't live on.

- Julie McCorkle

There are people in my life that regardless of what I go through I will be able to lean on and they will always be there and recognize what I need. And there are others that just won't. And that's OK.

- Liesel Mertes

It's interesting as we age how we how we feel like on a deep level those things that you just feel like you know like if you're not safe or these are people I can depend on as you think about those people and you say yeah you're someone that I can depend on. Are there are there characteristics that are common across them where you say yeah they're marked by this?

- Julie McCorkle

Yeah, I think just the capacity to listen and not just listening to let somebody talk but listening to actually understand what they're saying. And this is so much of what I do in my work in H.R. where people will come to you and they'll bring some sort of issue to mind. And normally, what they're saying is not what they need it's not what the issue is you have to understand the underlying there's definitely people I found in my life that can look below the surface to really truly understand and just just care. And those individuals are the ones that I think you can lean upon.

- Liesel Mertes

I love that that carryover from what your personal journey has been into your professional life because, a lot of times you know that such a divide there's work and then there's your life. I think that's binary in a way that is false. Yeah, but expound on that a little bit more because of what you have experienced. What do you bring differently to your role in H.R.? You say you have the Julie in 2019 has grown beyond the Julie of 2010 in these ways whether that's dealing with infertility specifically or just with anyone who might walk in your door having gone through a disruptive life event.

- Julie McCorkle

Yeah absolutely. So I think I think they're great. H.R. professionals out there some that can really understand the balance between supporting and advocating for employees and still looking out for the best interests of the company and there's others that kind of skew one way right through there too far in the company where most the time they don't have the trust of their staff or on the other side like two supportive of staff where they can't actually support the interests of the company. That balance I think I've always done pretty well navigating it and maintaining a healthy balance.

- Julie McCorkle

But I don't think I without going through this journey. I don't think I truly had an understanding of the impact a disruptive life event can have on somebody. I mean I've always think I've been able to listen to them to understand to get to the root of the issue and do my best to help them and especially just navigating management structure right to help them whether it's additional time off or just telling their supervisor they need to be out because their supervisor is not going to react well and they don't need that reaction.

- Julie McCorkle

But truly understanding what that does to somebody going through this journey I've never had that understanding and it's hard to I'm not sure if I ever would if I haven't experienced it myself because it's really hard to understand what somebody is experiencing.

- Julie McCorkle

You can listen to them you can have empathy you can care but you have to you have to almost put it in your own context in your own experiences to be able to feel it right here that

- Liesel Mertes

Do you have any words of insight to someone who is listening and right now they're in the midst of their infertility journey? Or another way of raising it. Any words that you would give to a younger version of yourself. From what you know now?

- Julie McCorkle

A younger version of myself, I think I definitely would have opened up quicker than what I did. I mean, I think I had great conversations great support from the individuals around me

- Julie McCorkle

I didn't allow myself to be as vulnerable as I probably would today because there are a lot of great people out there that do truly care even if they don't understand or don't know what you need. I think I would have voiced that a lot sooner. Yeah and I think I would have allowed myself to recognize I need to be away from this.

- Julie McCorkle

I need to be away from work. I need to be away from D.C.. I just need to be in an area that is stress free where I just keep my mind off of the journey itself. What I'm going through and allow myself to voice that I definitely never allowed myself to voice that. And in hindsight I wish I would have. I'm just very fortunate I had people in my life that voiced it for me. And I think recognizing if you do or if you don't have those people allowing yourself to to utilize the help that somebody is willing to lend.

- Liesel Mertes

Mm hmm. And for anyone who's listening that says Oh yeah I have someone in my life who is in the middle of this when I have an employee who, this is part of their story, where do you give to someone who finds themselves in those support roles?

- Julie McCorkle

I would say to reach out to if you have somebody in your life and you've already developed that relationship where you can start the conversation just starting the conversation of itself is a great place to start. And just reach out to ask them what they need. Just let them talk. And then once they talk truly listen to what they're not necessarily saying. And those are the ways in which you can find to make a difference for that person.

MUSICAL TRANSITION

I want to close with a thanks to our podcast sponsor, FullStack PEO. The good people at FullStack focus on your people so you can scale your business faster.

And we end, as always, with three take-aways…

• Julie spoke about how important it was to have individuals in her life that pushed her to "take her space", to acknowledge the pain and stress of this season. Like the boss that encouraged her to take time away from DC. Julie became that person when she encouraged her coworker to go home after the baby shower debacle. When people are going through stress, they are oftentimes consumed with the needs of the moment. Perhaps you can be that friend or manager that encourages a friend dealing with infertility to take some necessary space and time; it can mean a lot.
• Julie was able to be open about her treatments and receive the help and advice of her managers and coworkers because there was a robust culture of trust and respect that was already present in her workplace. Is this the sort of truly supportive workplace that you are a part of? If not, what are some proactive steps that you can take to build trust BEFORE hard times come?
• IVF and infertility treatments can be tremendously taxing on both a physical and emotional level. As you can, give flexibility and understanding to the women in your organization going through IVF. They are managing tremendous stress in their bodies as well as their schedules in addition to doing their daily work for the organization.

OUTRO

Jennifer Magley

I was I was grieving the loss of of this person of this role in my life and really just more of grieving the life that I thought I was going to have and that that was actually which may be not a great sign but that was actually more painful than even just becoming a single mother it was. Oh my gosh this is my life, I'm this scarlet letter

INTRO

Jennifer Magley is a talented entrepreneur and speaker. She claims the stage in engagements across the nation and coaches executive leaders. Her role as an executive coach is fitting; Jennifer was a professional tennis player and then a NCAA Division 1 head coach.

You know when Jennifer enters a room. She is tall and striking, confidently claiming her space.

But, that confidence is not born out of an unbroken string of successes. This captivating coach and speaker has dealt with her own share of disruption. A few years ago, betrayal left her reeling; her marriage was over, she had a newborn and suddenly became an under-employed single mom of two small children.

We'll jump into her story soon, but, as we begin our episode, I want to introduce two sponsors for the podcast. FullStack PEO offers turn-key HR for emerging companies. Glad to have them as part of the podcast because, beyond being good at administering benefits, on a personal level, I also really like the men and women behind FullStack.

We are also sponsored by Handle w/ Care HR Solutions, offering empathy coaching and manager training so you can give support when it matters most.

In today's episode, Jennifer shares her story of disruption. She talks about the unrelenting days, the economic challenges, and the misperceptions she regularly confronts. Jennifer also offers a particular, important nuance to the conversation. She is a woman of color, and this means that she faces additional challenges and hurdles along her journey of single parenting.

We had to reschedule our initial recording session because Jennifer's car came to a grinding halt in the middle of a busy, northside intersection on her way to the studio. The tow service was taking forever and traffic was whizzing by. I met her on the corner of Meridian and 96 Street. I can't fix cars, but I did bring her a little carrot cake in a mason jar. This roadside crisis is the context of the start of our interview.

- Liesel Mertes

Jennifer I'm so glad to have you in the studio today. Thanks for coming.

- Jennifer Magley

Thank you for coming and for saving my life a couple weeks ago bringing me cake on the side of the road when my car broke down. Yes. You were my hero and are my hero.

- Liesel Mertes

Well nothing says comfort in the midst of an auto crisis like baked goods.

- Jennifer Magley

That's true. That was it disrupted my entire day. So, it's perfect to start the podcast the show with it. Yes.

- Liesel Mertes

Well so you didn't…you had this like minor disruptive life event but you're stuck on the side of the road and I think you guys were headed to like a pumpkin patch or did you get to do day's activities with your kids.

- Jennifer Magley

Yeah it's kind of the story of life. You get ready to go. And it's actually always a wonderful plotline because you've got your protagonist and then the disruption happens. Right. And you're hoping for the best and you helped me that moment because it turned into a picnic on the side of the road. I just chose to think it out. Think about it as a picnic rather than my car broke down and it's completely totaled. And you know in front of moving traffic. So yeah, I'm grateful for that. But I made it here finally made it here which is good.

- Liesel Mertes

Yeah. And you are headed out a little bit later to elementary school.

- Jennifer Magley

Yeah.

- Liesel Mertes

With your son who is a celebrity.

- Jennifer Magley

Today is definitely a celebrity of the day which concludes celebrity of the week. So that's all it is I get to be his plus one his his ultimate groupie his number one fan today at lunch for life. Yeah, yeah, Mom, Mom is the number one fan manager maybe I can be as mom and what they call them now.

- Liesel Mertes

Well OK, so that's perhaps a good segue way number one fan. Your parents behind you, you have a backstory that brings you here. Tell us a little bit about your growing up right.

- Jennifer Magley

So, I'm the oldest of four children and it's been an honor to be their, their oldest sibling I actually just had a little niece named after me with her middle no middle name is Rose. So, my middle name is Rose and I have another niece who is gonna be named after me too, which is Rose, which I'm beyond honored considering I'm such an intense older sibling. So, as I know they're all this for I know. Okay. Go get it.

- Jennifer Magley

It's terrifying. So I'm grateful for that. And so that's kind of I guess a testament to the fact that they still love me after all these years.

- Jennifer Magley

But I grew up in a loving home wonderful home. You know, we've got generations of married folks that are still married and it's been something that I've been grateful for. So, my whole life I kind of thought that my life was going to track theirs right. And so, I did everything that I could to prepare myself for this future life including just like what we call staying pure till marriage. That's like the biggest stance that I took and I went to a very will say liberal college fun party school and I stuck with that all through those years because it's my own personal conviction. And the reason why I share this part of my story is because it's kind of like putting in all the ingredients for a chocolate cake and into the oven and you pull out a cactus because I thought by doing all of these what I thought were right things for me my life would turn out the way that I was expecting.

- Jennifer Magley

Which was the way of my parents in the way of my grandparents that I would have this particular life.

- Liesel Mertes

And in the midst of, I hear that the sense of, oh this wasn't the way it was supposed to go right and you were also very busy in these years as you were going to college. Yeah. And this was a huge part of your world.

- Jennifer Magley

Yes I was. I'm a former professional athlete and division one head coach and so I love to have fun and work hard but really you know DONE is my favorite four letter word d o n e like so accomplishing things that is something that was a big deal to me and in a sense getting married and having a family was this bizarre kind of accomplishment. But it's hard to put that on your list of things to do. Yes. On the top of the list get married like you can't force that or find that. And so when I did meet someone through my family I was so excited about it and we knew each other a short time and then we ended up getting married and I thought this was just I was so excited.

- Jennifer Magley

Everything in my life was lining up all the pieces were coming together and go through a fertility journey and you know lose ,lose one early on and end up having kind of this miracle healing where I get to now be the mother of two small boys. It was just really a unique story.

- Jennifer Magley

And I've been everything, you know, I've been the breadwinner in my marriage for when I was married for the majority of the time I've been a stay at home mom. I've been I work from home mom or work from work because we all know it's extra work being home. And then now I will just on one day overnight I basically became a single mom and that was completely unexpected.

- Liesel Mertes

It sounds like an emotional journey with so many inflection points

- Jennifer Magley

I was in my 20s and I was just had the dream wedding everything was beautiful. My mother planned, dad and, I think the biggest part of any relationship and anyone that has a large wedding is that you're standing in front of every single person that means anything to you and you're making these vows. So then when you know you're told the actual truth about your life which was this person had been having there's no other word but just sex with other people from them since the moment he match you over the entire duration of the relationship.

- Jennifer Magley

When he confessed this to me in front of our two small children you know that's just the kind of a first thought that comes to mind is the first off for me was oh gosh I'm not crazy.

- Jennifer Magley

And then the second part was, oh wow, you know you kind of really have to work through your own ego of, Geez everyone that I have ever known was there and I'm so embarrassed that I didn't see this and I'm so embarrassed that I didn't. How silly of me not to see this coming, I suppose, so that was really those backstories of you know staying air quote pure until marriage just believing in these, these core truths.

- Jennifer Magley

For a lot of people and then having it unravel in one moment was definitely a disruption to the life that I thought I was going to. Then I was in it and ever since that moment it has played a huge part of every part of my every moment of my day because I went from being a stay at home mother; I had quit working and actually I was launching my business from my first business then. And that happened two days before a huge piece in The Indianapolis Star came out with both of our photos on it. And so. I had a choice. Am I going to move forward with my business and with my life and becoming a single slash independent mother or am I just going to fall apart in my world fall apart meant to quit and kind of curl up in a ball in your bed and not not get out?

- Liesel Mertes

How did how did that decision or those moments unfold? Because, you're in such crises right? You've got these young kids you have this external thing. What did that look like did you have people or resources that you remember and you're like that was that was a game changer for me?

- Jennifer Magley

It definitely I'm, I'm so blessed so fortunate that my mother dropped everything like she got that call same day and I'm so kind of articulate the types of varied reactions that people have and everyone's different but in the moment that you realize you've been in an unhealthy relationship where somebody has been taking advantage of you and that's taking advantage of your trust or fill in the blank. You have basically one of two polarizing options. The first is to stay and realize that I am in symbiosis with this person. So I'm, I'm dependent on them and in order for me to stay in this marriage or stay in this relationship I have to change.

- Jennifer Magley

So I have to go to the therapy if that person is willing to try to understand and navigate their lack. And I've got to, I've got to be the one to change because it's impossible for me to be myself and stay in this situation. And then you have the other option which is to just say, this is enough, put your foot down and pivot because the longer you stay in an unhealthy very unhealthy situation the harder it is to get out. If that makes any sense. So, to that point, when I made that I put my foot down and I pivoted.

- Jennifer Magley

I was fortunate to have the resources of my, my mother who dropped everything and actually came to live with me for a while to help me navigate what became a very challenging gosh for years of being a single mother entrepreneur here in the state of Indiana.

- Liesel Mertes

So there's so many levels: I imagine there's the logistics there is just like that the energy level of caring for your two kids. What did you find were some of the biggest misconceptions that people had as you were going through that journey and were it like what were some things that people said?

- Jennifer Magley

Well, at the time I lived in Hamilton County. So, Hamilton County in Indiana has 4.5 children per home. So it's kind of the incubator of the Midwest. So, if you want to get pregnant walk through Target and fishers target and yeah there's nothing but kids there.

- Jennifer Magley

And so, I lived on this very ideal like street in Fishers where everyone was married and there was only one single mother and she was a bit of an outlier you know within the neighborhood. And the moment I became a fellow single or independent mother as well say I felt like everything changed. And the biggest kind of misconceptions that I had to face were the ones that I had. So, I found myself having to feel I felt as though I had to explain how I became a single mother to people as though there's some type of hierarchy for example oh well this is what happened to me and this is how I became a single mom.

- Jennifer Magley

I was married as though it makes a difference. And that's when I kind of face my own conviction or maybe faulty perceptions of what it meant what it meant to go on your own. And now I don't feel the need to explain my backstory to people I'm just a single mom. Like, what difference does it make if I was married or not.

- Liesel Mertes

It's so interesting and just the that unsaid expectations seem to form behavior in really powerful ways. Did you find that navigating you were your family or your social dynamics suddenly felt different? Were there people that really stepped up to bat and were there and were there people they just faded away?

- Jennifer Magley

Yeah I feel that crisis reveals a lot of the backstories of people. So, you know there were a few people that said can you make it work like is that you know I know I know this was happening for nearly eight years and you weren't aware of it.

- Jennifer Magley

Can you make it work for the children? And that's really revealing. For me, it was a fundamental trust that was broken an identity that of a person that didn't exist basically the way that I saw it that was created and so yeah. There are a lot of people that really just revealed their, their views through their questions or through their ways of wanting to help.

- Jennifer Magley

But overall, I would say that I just had a lot of we support your decision because it's a bit like when you hear about the old lady the old lady who's on TV that, I've been scammed you kind of don't ask them to, was there any way you can kind of forgive that scammer and that took your life savings and you go on a date with them. People don't really ask those ladies to do that and it's interesting that in the case of marriage when there are children people ask you to do kind of unthinkable things because nobody is saying to that 90 year old lady like well what role did you play in this scam.

- Jennifer Magley

You know, I did open the yeah you did open that door and, and again there's people that shun women for running in a sports bra. And so, there is that mentality out there but I didn't encounter a ton of it at all with my own family I over how to just loads of support and they essentially became more of a village for my kiddos to raise them.

- Liesel Mertes

What were some of it… so your mom dropped everything and came.

- Jennifer Magley

She did and then moved into our into my house. My mom and my dad they made that their HQ for a while.

- Liesel Mertes

Yeah. What were other things that you look back and you think of people on the way that you go in those immediate stages that was so good, I really appreciated that?

- Jennifer Magley

Yeah gosh I would say that it was really my mom. So I've been asked, like OK did you do therapy? Like what did you do to cope? Because what happens and this is a lot of times what happens with grief is the same thing that happens with deception. You your good memories are also painful. So when you look back and it's like oh oh this is what was going on when it was my birthday and I was pregnant. Oh this is where you were actually after the wedding the wedding reception for my family. You were out doing your extracurricular activities so then every single good memory is tainted because of that.

- Jennifer Magley

And so my mom really was the one that stepped up and I didn't have therapy but I had like 24 hour intense support and my mother. And it was a lot of extreme moments for me because I think like grief, I was I was grieving the loss of of this person of this role in my life and really just more of grieving the life that I thought I was going to have and that that was actually which may be not a great sign but that was actually more painful than even just becoming a single mother it was.

- Jennifer Magley

Oh my gosh this is my life is the scarlet letter. You know within my little suburb community in the Midwest I'm suddenly and actually that phrase hot to trot. You've heard it comes from like the 50s when women started getting more and more divorced, divorced the guys at the barbecues would elbow each other and say oh look at her you know she's Miss Smith now she's hot to trot. So, there is definitely a stigma that comes with being.

- Liesel Mertes

Yeah. Did you feel that ever reflected back to you like that sometimes we have fears and then there's that awful moment where you're looking and you're like oh yeah you are perceiving me that way? You are giving off that vibe right?

- Jennifer Magley

So as it's really a that's a good question because as a woman of color in a lot of different industries that I've worked and I've just really used to dealing with perceptions that I don't even identify mostly that they're happening. I just think, OK this person doesn't know enough information about me and that's not my default setting because my father is white. My mother is black. So and also the way that I'm being perceived is is highly predicated on this person's point of view. Like where they're coming from what they view me. So that just kind of added another layer to an already set expectation that people have. I think I think.

- Jennifer Magley

I've actually heard more comments about the fact that I was married because 80 percent of children of color are born into single mother households. So, there is this perception that I would be and I didn't know that people were perceiving me to be a single mother already. Even when I was married. So I think it was a bit of the reverse awakening of, oh wow I didn't I didn't realize people were seeing me as a single mom even when I was married.

- Liesel Mertes

Yeah. Tell me is kind of odd. Tell me a little bit more about that. That the expectations of being single and being a multiethnic background what are what are the different things that you feel like. Oh yeah. People who are like single parenting baseline is hard but if you're a white single mom like you don't actually have to field this sort of stuff.

- Jennifer Magley

So, what I can speak to about that is awesome question and very brave question because not everybody wanting to have these kinds of conversations. So, I think in the state of Indiana we are the second worst in regard to the gender pay disparity the wage gap. So, it's something like seventy nine cents on every dollar. That's how much a woman makes in Indiana like we're second worst in the nation. And so what that means is that a woman of color only makes 54 cents. So, the way that plays into my world as a single mother entrepreneur is that I essentially have to work sometimes three or four jobs to make ends meet because I'm statistically not earning that full dollar as opposed to my male counterpart parts or as opposed to people that are of different ethnicities. So the statistics within Indiana make my demo a little bit harder.

- Liesel Mertes

Yeah I hear that does it. Do you feel like there is you've built a community of support of like other people that are living this sort of a reality that you're like Oh man I can talk with them about stuff and they just get me in a way?

- Jennifer Magley

Yeah I know. So, it's really interesting it's kind of like belonging to a secret society. Right. And I didn't know that this existed until I became it. So I'm sure and certain with your journey you tell them what you've gone through and if they've been through it you immediately have an understanding just it's right in the eyes. You're like OK we're here. So I feel that way with former student athletes women that played sports in college or professionally. And I also feel that way about single mothers. It's, it's an immediate sisterhood. Now that said it's not always a continual sisterhood because of the demands on our time. So I find that I have very quick intimate connections but then sometimes we're always just going we're just going especially when you have multiple children and you have full custody of them as I do right now and so you know you just you're just going so quickly

- Jennifer Magley

And it's hard in general to find people who have been to where you're going and finding that like single mom mentor or that person that you call and say oh my gosh how did you make it? I haven't found her yet but I know there's plenty out there

- Liesel Mertes

What are the what are some of the hardest daily moments or like in the rhythm of a week can make you think this is just a particular challenge to being a single mom and an entrepreneur? Yes give us a little window.

- Jennifer Magley

So looks like I will break it down with within 24 hours. So I think that I actually wrote a piece about this how I'm calling it the equal time fallacy that people tell you Oh you've got to same 24 hours as fill in the blank you know tycoon or talk show host. And the truth is we don't; we don't have the same 24 hours as other people because we don't have a team of people or even a partner that's 24 hours with you that can do things. So because I have that fallacy

- Jennifer Magley

I get up at 4:00 or 5:00 in the morning every day and that's the only time I have where I'm by myself and if I don't get up at that time and do my habits and my rituals. I don't know I just I haven't actually not gotten up at that time during a weekday for years so I get up at four or five get the kids off to school on that bus by 7:40 the other little guy off to his childcare and then I'm just going until the moment I collapse in the bed at 10:00.

- Jennifer Magley

So those challenges are, you know, you've got the stress of being what this male classically male stress of oh well he's gotta provide you know he's, he's stressed out. Let him go off for let him let some steam off. I have that then I have the invisible work that fairplay talks about this new book fair play that's out about the amount of home work life work we have to do at home. I have the invisible work of emotions and having to navigate and go into school and handle everything and raised you know kiddos full time.

- Jennifer Magley

So I feel like I have become this hermaphrodite of responsibilities. You know where I've got the demands and responsibility of a man. And but and also supposed to nurture as a woman.

- Liesel Mertes

Yeah.

- Jennifer Magley

There's so much to juggle in the midst of a given day and starting that day at 5:00 o'clock in the morning with zero guaranteed dollars in my bank account. Right. And that has been something that I'm always transitioning and oscillating between because I mean I say zero guaranteed because when you do your own thing it's not until somebody pays you that it's real. They can sign an agreement. They can say yes come speak in Hong Kong but until you've got that money it's not a real thing until they're all signed on the dotted line.

- Liesel Mertes

Right. Yes. You touched on a little bit, but we've talked about ways in which people have been supportive. Mm hmm. The support that you need. How is it changed from those immediate stages of like oh my gosh everything is falling apart right now to a stage right now that's different but I imagine you still need support systems? What does good support look like for you 2019?

- Jennifer Magley

So this is not going to be politically correct but when everything first happened there was a woman actually in my neighborhood that had cancer and I thought to myself and then there was another friend of mine who lost her husband and he died and I literally and my self-pity was like, boy they've got it good because in my mind when you had cancer I saw everybody signing up to bring meals and watch the kids and rally for her because she has no strength her hair is falling out and she was receiving some kind of support.

- Jennifer Magley

And then when my other girlfriends husband died. Same thing. They're setting up college funds they're doing go fund me and they're raising all kinds of money for this very sad story of a young mother who lost her husband well when I became a single mom. None of that happened for me and no one rallies in that public way and says, Boy let's set up a fund for these two young children that now have parents that are split up because they, they are thinking well there's some fault here. And I just think that in general sickness and death garner more support initially than anything else so back then the support that meant the most to me was some friends sending me money.

- Jennifer Magley

Actually, initially to help me move forward to be able to separate myself and kind of disengage from that unhealthy relationship. And then now what that looks like is just a friendly ear now and then so I can vent and just kind of brainstorm how do I continue to co parent with in this difficult relationship. You know ,for the next, I mean I'd like to say it's only 14 years but we all know that that's not real life. You know you've got. How do you navigate the difficulty of this partnership that's not really a partnership?

- Jennifer Magley

So that's challenging. So, it looks different. You know the immediate monetary needs are there. Just as any crisis requires that.

- Liesel Mertes

Right. Yeah that's a great point. How some things there, there just seem like more of a universal signal home like, like we should rush in and give care. And there are other things where because of the assumption of blame or because of, oh man that would just be so messy and I don't know who to side with. I'm sure that affects how people show up or how they don't show up.

- Jennifer Magley

And to kind of, if I'm looking back and to kind of give a bit more perspective. Yes. In the aftermath of this I have cast myself as the protagonist as we all do. But when I look at it and I say, how did I even end up in this situation where I was married to what I jokingly call my number one hater? It's because I essentially, I think may have been my number one hater. You know someone can't mistreat you unless you think that that's OK.

- Liesel Mertes

I'm sure that there is a lot of actual personal work.

- Jennifer Magley

Oh my gosh you had that. I think afterwards, I kept dating people and thinking gosh all men are like this. But what was the common factor? Me. So I think that it requires any traumatic event where there's a revelation or separation or death. You kind of think how could I have avoided this?

- Liesel Mertes

What is one of the things that you like best about who you are becoming over the last four years?

- Jennifer Magley

I'm a completely different person than I used to be and a lot of respects. So, what that tipped off was me actually having a story. So I'm reading a lot and my major was English about what does it mean to create a story and write and essentially nothing happens until your life is disrupted.

- Jennifer Magley

The character wakes up in the morning and they don't know that aliens are invading in the afternoon while that doesn't mean anything until you know the backstory of that main character. So, Lisa Kron actually wrote a great book about how to storytelling. So what I realized is that that has this has created my story of my life which requires transformation and the transformation for me has been learning how to represent myself learning more of who I am.

- Jennifer Magley

Figuring out how to make magic and, and kind of also figure out how to have leisure and when I say make magic I mean transform. Whether that's consulting or speaking or coaching and how can I fit the need with a service that's being brought to me for that day or for that time and how do I monetize that? How do I maximize every moment that I have? So, it's required me to become a different or better version of myself.

- Jennifer Magley

Yeah, I think you know this show is about disruption than about difficult things in life. And it's really not until we encounter that that all of the things that you believe are tested you know for the longest time. Firs,t how this played into me was my even my relationship with faith and my belief in God and, you know I a lot of these relationships and talk and the United States is about you know how much you love God and how you know prayer is about your, your encounter with God you what you are saying to God.

- Jennifer Magley

Well, when you go through something like this and kind of your air your testimony as it's called within the Christian faith is made a mockery. It's a total joke like my life testimony became almost like a joke. What I've had to do is take a step back and say, you know, what if God it's not about how much we love God what about if it's about how much God loves us unconditionally, how God is always faithful to us in whatever way you can find. What if it's about instead of talking to God if it's about listening?

- Jennifer Magley

So, my prayer life has been over the last few years. Just when I'm waking up at 4:00 or 5:00 in the morning I'm just listening because why do you have to say hey you know this isn't a Santa Claus. And even if you give me what I want look what happened in my life like I got what I wanted and it was a an explosion. So when you don't know what's best for you that's really humbling.

- Liesel Mertes

Do you have any words if there's someone listening who is in there really journey with him needing to read script life you know marriage is what they're being confronted with like this was not what I signed up for. What would you offer to someone who's at that place?

- Jennifer Magley

Well the first thing I would say is if you are being mistreated. If that is any kind of abuse sexual mental emotional physical and really the first abuse that as women ish we should all be aware of is financial abuse because that's where it starts. Is the money. So, if financial abuse: know what that looks like. That's anywhere from not having control over your full finances not having your own personal account having to ask for permission to do things. Yeah be aware of that. So, the first thing is if you were in that unhealthy situation get out. The sooner the better get out remove yourself from this situation.

- Jennifer Magley

I'm not saying end your relationship or and your marriage but find some space where you can reflect on the events that have been going on in your life. And truly, if there's smoke there's fire. The number one thing is you're going to feel like you are crazy like, I'm crazy to think that or if you're always asking yourself what did I do wrong here. Jeez I keep messing up; I don't know what I'm doing wrong. Well this is the language of someone who doesn't realize they're in an unhealthy relationship because it's not that you are doing necessarily anything wrong.

- Liesel Mertes

Yeah and if there's someone listening that they go oh my gosh my my sister or my high school best friend or my uncle they're going through this divorce right. Oh gee it feels so awkward. I don't know what to do. I'm not going to bring it. What are words that you would give to someone who's in that support role?

- Jennifer Magley

Yeah just, so I would say text messages. Just want to let you know I love you because the other thing is is, like as a person on the outside. The last thing you want is for them to call and like vomit on you all the time because that is a tendency for somebody who is coping as they just don't know how to have that internal conversation. A lot of times for me I was like, oh gosh I just need someone to listen. And I would say support them really if you're not wanting to hear all the details set a boundary like I would encourage that person to say I really love you, but during the day I'm working. And can I give you a ring. Like next Wednesday. And just set that firm boundary with that person because they're in a lot of pain. And so, it's OK to tell the person who's hurting no, I think that's another thing that is not encouraged because you're like I'll just be there for them and it's OK to say, like oh no this is going to support you and I want to support you in this way. I appreciate that there is a little different problem. Well there's some there's some good wisdom in that because it's, it's something I can be free. I can be for you in these settings and it makes you available in ways that you can be available right. This is a little nuance.

- Liesel Mertes

Is there anything that an employer should specifically in our business to say like this is something to be aware of for single moms and why not?

- Jennifer Magley

Yeah. You need to hire them. You need to hire single mothers and here's why they are doing more than you can even begin to imagine. And you always want a busy person to complete the task right. They say recruiting whether it's for a board whether it's for a job like hire a busy person to do it. And I would say just because someone is a single parent because a lot of single dads out there sometimes I feel like they get a few more medals then when they're in the car line and you're like oh he's a single dad it's like how is that sexy I'm a single mom. Come on. And you know like but. But anyways I would say hire them hire the single parent and know that that hire might mean even more than you can fathom because they're going it alone. So I would say hire them.

- Liesel Mertes

It's a good word. Any other things that you would like to add that you didn't get a chance to say?

- Jennifer Magley

I I think that the biggest, the biggest thing with telling my story is the era that we live in which is the digital age and knowing that every time I tell my story it's possible that it's going to outlive me because it's going to be on the internet and trying to have this sensitivity knowing my son's, well, you know may or may not have their avatars listen to as they you know deal with becoming part robot in the future.

- Jennifer Magley

But I think, when they do hear this, I always want to try to have like a sensitivity but also speak my truth because the things that we go through in life. This is a cliché, but they're not just meant for us. You know, think everything you went through you now have a platform and you're sharing to inspire and encourage other people.

- Jennifer Magley

I just want to tell anyone that's listening: don't be ashamed of speaking your truth. Go ahead and know that you have the power to, to share what you believe in because of what you've experienced. People cannot argue with your experience. You can be the expert of your own experience and so that's the one thing that's fascinating is you can say what you believe and people will argue with you but if you share what you've been through. People respect it and connect with it.

- Liesel Mertes

That's true. We're made to connect with those stories. Absolutely.

MUSICAL TRANSITION

This important conversation was sponsored by FullStack PEO. With experience in payroll and benefits, they take care of your people so you can take care of business.

We are also sponsored by Handle w/ Care HR Solutions. We all fall down, but empathy coaching through Handle with Care HR Solutions helps you create a community where people survive, stabilize, and thrive after life knocks them down.

I come away with many, many takeaways from my conversation with Jennifer, but I will close with just three.

• Jennifer said that she needed friends that were just available to listen, friends that sent text messages and were present with her as she worked her way through pain. Be that friend…but don't be afraid to communicate your boundaries. If it is a difficult time for you to talk, communicate your constraint. "I'm so sorry that you are going through this and I'm glad you reached out. However, I'm at work right now and can't talk. Can I give you a call tomorrow night to hear more?" A statement like this shows care while still communicating your limitation.
• Unlike a diagnosis or a death, men and women that go through a divorce often don't receive an outpouring of support.Friends and coworkers can be afraid of taking sides. But, divorce can still turn your world upside down and leave you reeling. So, if you are a friend or a coworker, consider sending a card, writing a check, or bringing a meal. It could mean so very much. '
• Disruptive life events are universally hard...and they can be even harder if you are part of a minority. Talking with Jennifer widened my perspective in an important way. As a white woman, there is a lot that I am still learning about what it means to be a part of a minority in America. Jennifer offered us a window into her experience: the economic hurdles of making less and the social hurdle of people's assumptions because of her skin color. I want to keep learning, listening to stories and doing the grinding work of taking a long look at how I make these assumptions and how I help to perpetuate these hurdles in my personal interactions.

OUTRO

If you want to learn more about Jennifer, check out her work here:

• Jennifer Magley Introductory Video (30 seconds)

• Recent WISH TV Segment: The One Word You Should Never Use Again (5 minutes)

• Quit Saying Sorry All The Time (LinkedIn)

• How To Start A Business With No Money (Foundr Magazine)

• Jennifer Magley Website

How do you support families living under the shadow of a long-term illness? Parkinson's disease is relentless and degenerative. There is no cure. Jason Berns remembers his dad, Don. Don was diagnosed with Parkinson's at the age of 33; Jason was just 8 years old. Jason reflects on the challenges of living in the shadow of Parkinson's, the importance of honesty and community, and the power of hope.

– Jason Berns

As my dad would say you know Parkinson's has been extremely hard it didn't create the life that we would have imagined and in on disability at 41 and but need, neither he nor my mom would say I wish it hadn't happened. I think it shaped us into who we are. It allowed us to be more of who God has created us to be empathetic sympathetic, caring, driven, gritty, persevering, and and joyful again.

INTRO

In 2019, official US estimates stated that 40 million Americans were caregivers. This means they were helping family members with the tasks of daily living or with their medical needs. These caregivers oftentimes juggle their own families, careers, and personal needs while caring for their loved one.

My guest today is Jason Berns. Jason knows what it is to love and care for a parent with a lingering, debilitating disease. Jason's father, Don Berns, lived half of his life with Parkinson's disease.

But first, a little bit more about Jason. Jason is a realtor out in California. He is married to Laura, who is also a co-owner of the business. After a season of infertility, marked by miscarraiges and doctor's visits, they were delighted to have three girls: Charlotte Caneel, Alexandra Adele, and Elizabeth Dawn.

Jason is also my big cousin; his father, Don, was my Uncle. In my childhood memories, Jason looms large, swooping in from California for a midwestern holiday visit.

- Jason Berns

And boy I've had the blessing of growing up in a loving family. You'll hear a little bit more about that and some of the things that have shaped me through that grew up in I was born in Indianapolis and moved to California when I was one spent most of my young adult life growing years and La Canada and then walking out to Southern California.

- Jason Berns

Then I went to college in Santa Barbara at the opportunity to work overseas in Romania right after the communist regime was overthrown in the orphanages over there.

- Jason Berns

And then I studied in Israel moved back and got my degree in elementary school for about seven years and had an opportunity to go travel and watch tennis around the world and get that in Hawaii in the Caribbean. And that took me all over the world.

- Jason Berns

And then in 2006 moved back knowing that my, my dad probably mom probably needed me to be a little bit closer than living in Hawaii at that time to help care for my dad and to be present.

- Liesel Mertes

My uncle Don Is your father and I know that his health and his presence in your life is really important forming force. Tell us a little bit about his journey with Parkinson's and when as a child you first became aware that your dad had this disease.

- Jason Berns

Yes so I was born in 1973 and was my dad was a college athlete and an engineering major so brains and brawn. He played tennis in college at Duke University and again growing up even as a little kid.

- Jason Berns

I always wanted to be out playing sports throwing a ball hitting the ball kicking a ball whatever it was when skiing.

- Jason Berns

My dad was the youth pastor for our church here in locking me up for a number of years and being with the youth was always very active and I got the benefit of being involved and around those the youth group and seeing dad play basketball or see him play tennis against the varsity tennis players and going and watching it was in March of 1981. We were, my dad led a ski trip every year for the youth group to go to Utah to ski for five days over spring break and in 1981, I was eight my sister was four and we weren't going to ski Utah I'd been going since I was about three so I'd been about five times and I love skiing and was told that we weren't going to be going to ski Utah this year because Dad had to go to the hospital and have pulled off.

- Jason Berns

And didn't think much of it myself other than mom said that there was a little bit of actually no that wasn't the case. So he went to the hospital. It was probably several days of tests and then I remember them coming home and saying that we think Dad has been diagnosed with the disease called Parkinson's disease. Parkinson's, prior to Michael J Fox and his notoriety, was really a disease that most people associated with people 65 and older, people who were just getting older and it was part of getting older for people. And here was my dad: a vibrant active 33 year old a wonderful ministry and very athletic and he was starting to have a little shaking on the left side of his body

- Liesel Mertes

For people who are not familiar with the symptoms or progression of Parkinson's what how is that affecting his day to day? You mentioned the hand tremor and sweating. What did it that look like beyond those symptoms?

- Jason Berns

So, Parkinson's Disease is a neurological disease. They don't really know what causes it. There are there's still lots of research going on out there but it's a progressive disease. It is not something that is, there's no cures. There's no cause. There have been examples of people who have a head injury head injury and later end up being diagnosed with Parkinson's because of a head trauma. So that has, there has been some links to that but most often it starts with a tremor a shaking on one side of the body.

- Jason Berns

There are lots of different strands of the disease but you just slowly lose the ability to do some of the basic life functions. From feeding yourself cutting, cutting meat buttoning your own buttons you'd speak. There are times where you your body sort of freezes and you can't really move there.

- Jason Berns

The disease you're lacking dopamine which is a neurotransmitter which the brain sends out. It's the little messenger that when you want to move your finger the little neurotransmitter that goes from your brain to your finger that sort of allows you to move your pinky finger and it's your lack in the dopamine. So it could be slurred speech. It could be slowing down. Difficulty walking.

- Jason Berns

And I remember when I was in high school having a wheelchair ramp built into the house for the possibility of him being on a wheelchair. My dad was never one who was going to give in to that and was going to continue to function but there were times where he basically froze and couldn't move and you just had to wait.

- Jason Berns

I think one of the things you learn early on in this is you don't want to rescue these people. You may you may just have to be patient and if they're having trouble eating a bite and the tremor in their hand is shaking. Just give them time to get that bite. Don't don't take the fork and put it in their mouth. They're still humans that just is going to take a lot longer especially as the disease progresses. In his mind, there was a documentary done on dad years ago and one of the videos is of him sort of in the middle of the night getting a glass of water because he has to take these medicines to sort of allow him to manage the disease. And again he kind of get the cup of water to his mouth. He just sat there and the whole bottle full glass of water just kept shaking and shaking... sorry I kept shaking in the water all spilled.

- Jason Berns

Again it's not sad because of that but it's just it's a humiliating disease that allows you to lose the basic functions of living in said. My dad had some wonderful friends and finding support. There's a gentleman named John Ball who's now had the disease is his disease for 40 plus years was a similar age bracket as my dad and he still is running marathons.

- Jason Berns

So I think one of the huge things is you have to be able to manage your expectations you have to manage your body. My dad was committed to exercising and continuing to go to the gym up until about probably a year or two before two or three years before he passed away where he was going to the gym and exercising and again people would be afraid that he could hardly walk and could barely get there and yet he'd be pumping iron.

- Jason Berns

And there was no quit. And I think that makes a big difference having that attitude of I'm never going to give up, I'm going to be able to persevere through whatever may come and again so many life lessons in that. So, it's a progressive disease. It's a disease without a cure it, it doesn't necessarily kill you but it certainly defeats your spirit if you allow it.

- Jason Berns

I remember with much gratitude my parents again. I don't think they chose to hide it from me or in our journey from anyone. I think one of the challenges a lot of people have Parkinson's can be a pretty humiliating defeat disease especially as it progresses and I think for better or worse people want to hide it and we end or let bosses or not other people know because you never know what people are going to say. I remember clearly a couple of years later my mom was also a pastor at the church and part of a dream for my parents was to have their own church and be able to be co pastors of a church and they had dear friends who were doing that.

- Jason Berns

And I think that was a dream and I remember going down that journey a little bit and watching and there was a church member where forty five minutes away where they'd gone through the process and were looking seriously about hiring my parents and then discovering he had Parkinson's that they could never hire someone in that situation not knowing his future and I think that dream for my folks sort of was let go. And I think the reality of just sort of the disease continuing and having some people at the church say in the youth group it's a little distracting to have Dad speaking up there...Sorry, I miss my dad.

- Jason Berns

So he was someone with great strength and I again the blessing of how he and my mom chose to live life with Parkinson's was the people, people saw the struggle. People saw that it wasn't easy. As the disease progressed over the years he lived victoriously with the disease for 36 years.

- Liesel Mertes

And what was it like for you as an 8 year old and growing up to, what was your emotional journey like watching your dad have his capacities reduced like that you know it was?

- Jason Berns

As a young athlete, I identified a lot with him and just what would it be like for me not to be able to go play basketball or tennis or whatever and that was so it was hard to see it as we did some family counseling to process it all realizing that everyone handles trauma and stress and challenges differently as we sort of looked at it.

- Jason Berns

My dad, the four of us in our family my dad was sort of the one with the very positive enthusiastic nothing's going to defeat me I can handle it. God's gonna give me strength and we're gonna be okay and that optimistic perseverance is what allowed him to overcome for so many years. My role was probably the one that I took on the worry took on the concern: what's, what's the future hold? What does this mean for him? What does that mean for our family? And how I didn't know and so not being able to control that, that's something that shaped me and later on in life as I've interviewed for jobs.

- Jason Berns

I remember interviewing for a tennis pro job and again where they staff tennis pros at high end resorts around the world and they said Is there something interesting that we need to know and I just sort of said, it's really hard for me to know to not know where I'm gonna go because I could have been sent anywhere and I wanted there certain things you can't control but those are the things I really wanted to control.

- Jason Berns

My mom was probably the one who is the most healthy and letting out some of her disappointment and anger in it and being able to express that which was healthy. And my sister from that time she just she didn't remember dad without the Parkinson's. This was just who Dad always was; he was diagnosed when she was 4 and again I think as she once said Dad was always a little weird, he was always shaking a little. For me, it was, I knew him before and knew what he could do and there was that loss and , I think I really identified with that and what that would be like.

- Jason Berns

I think that's shaped me a lot into the person I am today and having a heart for those with special needs.

- Jason Berns

There was just an ability to be empathetic and understanding to people who were sick and people who may be struggling to do the basics of eating dressing so it's again my life.

- Jason Berns

I would say most definitively in the last 10 years being married that shaped me as much as anything. But prior to that the, the effect of Parkinson's and how that has shaped me in my life and our family is probably a significant event as any

- Liesel Mertes

You talked about returning to the U.S. because you realized that your mom could use some additional support in caring for your dad as he aged and as his Parkinson's progressed. What has it been like to, you know, in his final years have a parent who had those needs as you are establishing a business and raising a young family. How did you feel that that affected your daily rhythms?

- Jason Berns

Daily. As I reflected especially in his passing for 30 again the most for my mom there wasn't a day for thirty six years where she didn't have to think about, I wonder what Don needs and how can I help with that? And I would say, I wasn't as extreme, that there probably weren't many days over the last thirty five years where there wasn't a thought, How's dad? What does Dad need or how can I help? And again he was it wasn't because he was asking for help. It wasn't because mom was saying you need that but there was just sort of the awareness of wanting to be there and be present

- Jason Berns

When I moved back in 2006. He was 60 so it had the disease for twenty five, twenty six years and at least since it had been diagnosed and so those first six months, I lived in an extra bedroom in my parents home that they were in at that point to be present. It was it was intense.

- Jason Berns

As he as the disease progressed and he wasn't able to make the best choices. In some ways, he still wanted to be independent. But things like driving, when it came it became clear that there was a need to take his ability to drive away.

- Jason Berns

That's really painful season of having to be that adult to your parent when your parent's really not that old and be a part of that and help my mom in that process.

- Jason Berns

I remember driving down the street when I was living, living with them and seeing him run two red lights just as he as I was driving the other way. And it just became clear, OK ,this is not safe; his life is in danger and other people's lives are in danger.

- Jason Berns

And then again being able to be be there to lift him up. When Lenny and fallen again as I got, while my dad played tennis golf became the one sport that he could continue to do beyond the young and working out at the gym we could get him in a car we could drive him up next to the ball we could get him out of the cart we could hold him from behind and then he could be shaking, shaking, shaking and then with all the strength and I mean focus and then swing and then he'd fall.

- Jason Berns

And I remember in those us five to 10 years it would not be unlikely that he would fall one hundred twenty times in a round of golf and again falling once is hard on your body but literally going from standing to falling as a 6'4 person, that's a pretty big fall. And the last couple of years or probably the last year the last three or four times we played, he would often pass out and he would fall and pass out and his eyes would roll and then we'd lift him up and carry him back to the cart and then he'd come to be and wouldn't know that anything happened and yet it gave him so much joy to be out there and be able to continue to do things and have that can do attitude even though most would say you're crazy Why are you doing that? And we were able to do that up until the end.

- Liesel Mertes

As I hear that. I mean that's it's an exceptional and painful memory. Like it is exceptional. But how did you, how did you find the strength to do rounds of golf with him? Was, I imagine an that's hard as a child. It's hard to see your dad like that?

- Jason Berns

Yeah. Certainly it was hard, again, developing all sorts of stomach problems from way back in high school and learning how to cope with my own ways. Again, when I worried I had to learn how to be healthy and how to how to deal with that and not just internalize and I've always said as long as I can remember, I've always had a weak stomach because of all the stress and pressure I put on so. But there was the one side of just this is hard but there is always, again, he by his leadership with my mom was you know this there's joy in this.

- Jason Berns

There so much more than the suffering and his, his story is marked by a joy that is not dependent on circumstances. And you know I think there's often that just what I've witnessed from him and learn from he and my mom is that there's a real significant difference between happiness and joy and happiness is circumstantial where you know I can be real happy because my I got this job promotion or my daughter won this award or etc..

- Jason Berns

But the joy is something that joy is something that can't be taken when it walk anymore or when you lose a leg where you where you have to have surgery where you're diagnosed with cancer again circumstances we can't often control and yet joy is something that again as a person of faith comes from something deep within, that is of the Lord and is something much, much more much deeper. So I I think there was there the reality of being willing to say this sucks this is not fair. But I've still got joy in life is good.

- Jason Berns

And the grand scheme of things we are incredibly blessed. And I was fortunate to be able to have been able to see a lot in this world and as challenging as things sometimes have been.

- Jason Berns

We're still far more blessed than we are struggled in the challenges we've, we've, we've faced and

- Jason Berns

Yet, as my dad would say you know Parkinson's has been extremely hard it didn't create the life that we would have imagined and in on disability at 41 and but need, neither he nor my mom would say I wish it hadn't happened. I think it shaped us into who we are. It allowed us to be more of who God has created us to be empathetic sympathetic, caring, driven, gritty, persevering, and and joyful again.

- Jason Berns

But I think life experiences we all will face those challenges and we can get better we can get stronger we can grow or we can sort of shrink and we can get angry and bitter and we'll be in a number of people where Parkinson's has destroyed the family and where debilitating illness has broken things apart or addiction.

- Jason Berns

And we were just on the phone with a client this morning and a marriage of a number of years but addiction and an illness that came from that has broken up the family and I'm very fortunate. My parents made a commitment and shared that with me that my mom promised my dad and lived it out every day that she would never leave leave him no matter how hard it got. And in the same light my dad made the commitment that he would never take his own life no matter how hard it got. And they lived out those commitments they lived out amongst many others

- Liesel Mertes

Thank you for sharing that. As you think about a community of people that come alongside you in this what were ways in which you would really meaningfully supported?

- Jason Berns

Boy. I think that's the power of community. My, my parents had a small group that they were able to be real with and real in the challenges. And I think the call to do life with others is something I witnessed and have observed and certainly tried to emulate and put into practice.

- Jason Berns

I look back at our family and we I think one of the questions that I read before is how did people miss me or misunderstand or miss me in the caring and I feel overwhelmingly that people got it and people helped us people loved us. The church for years they had meals that were prepared that were dropped off at the church for our family not because we're asking for it but it was just a tangible way for people to sort of ,let's drop off a meal at the church anonymously or not anonymously and it would be there for the Berns.

- Jason Berns

My mom; I don't know how she did all that she did but, I mean, those meals that were dropped off, having people just care. There was a gentleman name again as my dad being an athlete and me being an aspiring athlete growing up. A good friend of my father was Brad Holland, who had been a star basketball player at UCLA and drafted by the Lakers the same year as Magic Johnson and was on the Lakers and after his career was cut short because of knee injuries and things that Brad said to my dad as was relayed to me, "Don let me step in and be that father in this sporting arena that you're not able to be and be able to do some of those things so you can." In eighth grade, he coached my all star basketball team and this was someone who would later coached at UCLA coached teams that went to the NCAA tournament and yet he was given his time to coach this little seventh and eighth grader and worked out with me independent individually just to so that there was ways to feel loved and where my dad's disease didn't leave me without. I have gotten so much more.

- Jason Berns

We were cared for we were. We knew that we were not alone in this journey. And that makes all the difference. I think it's hard when I see people who are isolating when they're struggling in the in a journey of debilitating disease because they don't know how to do that. I'm very fortunate that Mom and Dad chose to live out there and the stories that the ways that touched other people as we shared about my dad at his memorial service the person who was ready to commit suicide and then my dad a picture of my dad flashed in front of their eyes and just his ability to struggle in front of other people and be OK.

- Jason Berns

This person chose not to take their own life because they knew that they could persevere.

- Jason Berns

And I think when we allow ourselves to be real and transparent and I think similar to what you're doing Liesel in this podcast on facing the hurt and the sadness that you've experienced in your life and yet finding a way to bless others and let other people hear that life's not real clean and life is messy and life hurts but we can get through it and we we need to do it with others we can't do it on our own.

- Jason Berns

There's just so much truth and richness in that. I've been blessed with incredible fellowship of your friends my entire life. My closest friend from the time I was with Sean Whiting he and I 44 years of doing life together and there's been times where we've been little closer than others. But couple years ago we were in India Lebanon kids at these orphanages together.

- Jason Berns

And I have a group of guys in college who was the discipleship group where we lived together the year after college and yesterday literally as I was in a matter of 15 minutes I had text messages from six of these guys who twenty four years ago we were pursuing life purposefully together on what it means to be intentional about life and as I said to each of them this is so amazing to have twenty four years later after college to have all of us still in touch and being purposeful about living life and we're not in touch all the time but we can connect

- Jason Berns

And about a year ago, I met with a group of guys on a weekly basis for the last 17 years and doing life and walking the challenges of life of stillness of divorce of loss and yet sharing the incredible victories of success personally and professionally. And vacationing together. It's it's just so rich when we can share life with others and yet it it can be really isolating when not in the contrast and I know my life having shared it with others and being pretty transparent about it.

- Jason Berns

Again as you evidenced by this time I've already teared up multiple times I'm pretty emotionally in touch but will not intentionally but will we'll tear up because I care so deeply and that's just part of my makeup and I don't think that would be who I was if I hadn't been through what I went through and been able to see that you know, it's okay for men to cry.

- Jason Berns

I know a lot of men who don't feel like that's OK; it wasn't modeled and my dad certainly wasn't like pretty much more than my dad ever did. But there was the freedom to be real that in the victories and in the, the defeats moving forward through that

- Liesel Mertes

I've, I've teared up a couple of times listening to you. Did, were there as some of this relates specifically to the working environment, did you find yourself, as your dad's disease progressed, needing to be called away from work to help come and care for him or having to put workplace things aside in a particular way? And how did you communicate that to your organization and the people that you worked with? What did that feel like for you?

- Jason Berns

So, I've had three main careers since I graduated high school or college in ninety five. I was an elementary school teacher for seven years and loved it and found it incredibly rewarding and meaningful and I was a tennis pro and running tennis programs around the world and then the last 12 years have been running this real estate business.

- Jason Berns

So yes there were times where I needed to be step away and I was fortunate to have understanding principals when I was an elementary school teacher. Sue Wilson and my first all when I was in Santa Barbara and then Lily Ogden when I was in La Canada you and I were both wonderful and I think people got to know my story. I think I wasn't afraid to share it.

- Jason Berns

And they knew that my values and my priorities were family was going to be of greater importance to me: God, family, business has always been how I've strove to live my life and was modeled and family needs to come first.

- Jason Berns

Now, as the owner of a company I've learned I have work to live that out and encourage that in our in our team members and allowing them to live out that faith and family are of greater importance. Obviously you've got to get the work done and to run a big business. There's there's tasks that need to be done but people need to go be with family because their sickness or illness; being able to be understanding of that as a, as a boss, as a team member, as a I experienced that grace from others and I think that's hugely important to be able to again

- Jason Berns

1. I wanted life to be very black and white. I think I saw things pretty black and white. I still think I think I still has things more black and white. If the reality is there's just so much gray and I think as employer or employee it can often be black and white. We want to see it black and white but it's gray.

- Liesel Mertes

So, do you have any words for someone who might be listening and they are right now caring for a parent who is in the midst of something debilitating in their walking that journey again.

- Jason Berns

I just I have no regrets from the, the time I did I think it's important to know your own needs and not be afraid to ask that. Ask for your own needs to be met.

- Jason Berns

I think as a caregiver, my natural caregiving was to help, support, rescue, I the most obvious example of my and I went through a pretty painful divorce when I got married young to someone who there was lots of a lot and dealt with depression and I thought, well I'll just leave her and I'll help her and all rescue her and that did not work. As a caregiver and someone who gives, I need someone who really gives to me as well. And again, there were lots of other things I didn't mean to put any blame but I, as someone who is a caregiver you need someone who cares for you as well someone who digs into you and it's a support.

- Jason Berns

Again it can be pretty overwhelming not knowing how long this how long the caregiving can go. Being willing to ask for help. I'd say get involved in a community of support for my dad and his Parkinson's. One of the things again I learned from watching him was he started these groups with other Parkinson's patients where the other Pakis could speak about what was going on and being able to understand that have that support group where other people who are caregivers are talking to you about the challenges they face other people who are going through the journey of sickness and illness and just a not a real optimistic future looking.

- Jason Berns

My dad often gets a lot of the credit for how he lived his life. But who my mom was and standing beside him and loving him who my sister was as his daughter and the way she sacrificed and gave him again as a dad was struggling. He still wanted to ride bikes. And so we got him this three wheel bike and it flags all over just so he could ride his bike to the to the gym and we'd get calls from people across town who would be concerned.

- Jason Berns

I saw Don riding across the freeway intersection and he got stuck and yet somehow he still got home enjoy going out and picking him up on this three wheeled bike in the middle of nowhere. And again, it was just sort of dad you just sort of. He needed to have those outlets he needed to have that ability to do that you needed to let him do that.

- Jason Berns

But there was also those times of Dad and again he hated it when we wanted him to be safe because in his view being safe isn't there was going to be no quality of life. Yet there was finding that balance of safe and yet risk again.

- Jason Berns

Life is gonna throw curveballs and hard stuff at us. But there's so much more purpose in whatever that may be. It's easy for me to say never give up but I think when people saw my dad in his life it spoke a little more powerfully because he to get out of bed to make, make the decision to live for many years was more than most would ever have given. And it would have been easy to just give up. Yet he continued to. And so two of my three girls know him because he fought and Elizabeth Elizabeth Dawn is named after him.

- Jason Berns

You'll know him by her name and by the stories we tell and the lives that have been impacted again after his passing the number of comments and notes of sharing about his life and the purpose he had and the joy that he and my mom exhibited. You just never know. So never give up. I think those would be his words and I will resonate with that. And there is a joy in this journey that is not dependent upon circumstances and we can persevere and get your tribe. Get your people who you can do life w who you can be real with and who aren't afraid of you asking the hard questions on because we need that.

- Jason Berns

We're not called to do life on our own. And relationships are hard. Marriage relationships are hard. Parents parent children relationships are hard work. Relationships are hard. But we've got a pretty strong call to stay reconciled and to be right and there is no greater love than the one that you lay down your life for one another and being able to do that.

- Jason Berns

Again some ways that you can see it real transparently what that looks like and other times it's going to be more in the subtleties and I'm thankful for my dad. I'm thankful for my mom I'm thankful for a wife who who gets me and supports me and we get to pass on these lessons to our children and to the children we get to love and Pasadena in Monrovia in India and around the world as we're trying to impact and improve the lives of others through our through our purpose.

- Liesel Mertes

Thank you for sharing those reflections. And I agree. Don Berns was exceptional. I'm so glad that my life intersected with him. And I'm so thankful that you took time to share about him and his influence in your life today.

- Jason Berns

You're welcome. I hope that there is value to those people out there somehow some way.

MUSICAL TRANSITION

A few take-aways emerge after my conversation with Jason.

• Community was essential for Jason and his family. In his words, "We are not called to do life on our own." The Berns family benefitted from meals deliveries, from men that stepped in to coach basketball teams, and from friends that have been with them to share joy and sorrow over the years. If you are a friend or a coworker with someone that is a caregiver, don't shrink back. Consider the ways that you can come alongside them with friendship and meaningful gestures? If you are a caregiver, what support groups are available in your area for both you and for the person you are caring for? Find people that will pour into you.
• At your company, it is alright for people to step back from work as a result of life circumstances? Jason talked about his supportive principals and the way that he now manages his own real estate business. Jason seeks to model his values of God, family, business and encourages his employees to do likewise. What values are explicitly or implicitly being modeled in your organization?
• Faith and hope can be a tremendously important part of what helps men and women survive and thrive in the aftermath disruption.Even in the midst of a relentless disease, Uncle Don maintained this remarkable grit and hopefulness that transcended personality. He believed that his failing body was not the final reality, he believed that there was more. If you are in the midst of a darkness that seems overwhelming, may a glint of hope find and surprise you today.

OUTRO

Today, I share a part of my story of loss. Elaine Brenner is my guest host as I move behind the microphone, telling the truth of my collision with death and surgery. As I listened to this episode, I still felt the loss; there is so much more that I would like to tell or share, the ways that Mercy and Moses and pain have impacted and changed me. But I offer this glimpse into my story, hoping it will help you as you live through your own challenge or help a friend through theirs.

11:01 – Liesel Mertes

But once you bury your child it's like. Oh there's nothing more to be done. You know there's nothing more to be done and you're just left at the finality of it all. It's hard because I feel like grief is such a profoundly isolating emotion. You know everybody's grief is singular to their experience.

INTRO

Today, my dear friend Elaine Brenner is guest-hosting, interviewing me as I share my story. I talk about the death of my daughter, Mercy Joan, and the multiple open heart surgeries for Moses. I consider on the limited tool-kits that we have for grief, the fear of forgetfulness, and releasing myself from the expectation of doing grief "well".

- Elaine Brenner

So tell me a little bit about yourself please. Well how do you spend your days?

- Liesel Mertes

Well, I'm the mom of four busy young kids. They range in age eleven down to almost five. Moses has a birthday at the beginning part of June. So that's Ada is eleven. Magnus is nine. Jemima is six and Moses is almost five. So, they're busy in their own kind of way. Luke is my husband; we have a rescue dog named Tozer who he's been running away this summer but is hopefully going to replace the battery on his electric collar so hopefully he'll spend a little bit more time at home.

And we love the outdoors. We love hiking around Indianapolis. We're big fans of paddle boarding and kayaking. These are some of the things that we like to do around the city backyard bonfires.

- Elaine Brenner

And do you stay at home with the kids? Do you work outside the home?

- Liesel Mertes

Yeah I'm in the midst of launching this new entrepreneurial venture. For about the last year or so of which the podcast is one part of it.

What we want to do is to be able to Handle with Care create a software based tool that really helps managers and co-workers be able to know what to say and what to do as people go through disruptive life events. They feel usually pretty overwhelmed and under equipped in that kind of deer in the headlights moment where they say, oh no I have no idea what to say. And to be able to provide like targeted real time instruction of just behaviors that communicate care you know somebody who's come back from a funeral and their manager is going to see them in the next five minutes to be able to watch a little two to four minute micro learning module that says hey here two good things to say here.

Three things that you should never say and they can chance to practice and to be able to go in and then confidently be able to say something that communicates care and that's something that's really missing. Yeah.

- Liesel Mertes

As I talk with people around town you can just see it in their eyes you know I was with a woman over coffee who's a prominent lawyer here in town and, and she goes: Oh yeah, you know the year where my mom and my only sibling died within six months of each other and nobody knew what to say or what to do.

So, I think there is I think there is both a market need and a human need.

- Elaine Brenner

I think there's a human need outside the workplace too. I don't think there is a lot of expertise or knowledge around what to say what to do how to handle when friends or family go through times like that.

- Liesel Mertes

Yeah. And that I mean most of us have had that experience at least at some point of even you reflect on the comfort that you've just offered and you go Oh my gosh, I said the wrong thing too, shoot.

- Elaine Brenner

Yeah yeah. So tell me about your own experiences with the grief where you crossed paths and that same way.

- Liesel Mertes

Yeah, well I didn't really have that many people die or super sad things happen in my youth. I had a grandmother die which was sad but expected until it wasn't really. You know my major intersection with a disruptive life event first happened it was I was getting ready to start a grad program down at the Kelley School and they, they offered me acceptance and a week later I found out that I was unexpectedly pregnant with our third child.

- Elaine Brenner

And how old were your first two?

- Liesel Mertes

They were three and one, so little at the time, they were little. And I thought that's OK. We can manage it well we'll figure it out. I was even prepared I was gonna lead a student trip to Ghana in the second semester and I remember pitching to the student services and saying, I will have delivered you know this little girl a couple weeks before but I'm sure that she can come I've travelled internationally with babies before like they're super easy. Like, I had a very blithe sort of an idea of how the young having a baby in grad school and all the things I was going to look at that was in 2010 but my 20 week scan they saw that Mercy.

- Liesel Mertes

That's what we named her, Mercy. Joan had a pretty profound gall hadn't closed. There's a category called a neural tube defect. So, if it's lower its spinal bifida if it's higher it's anencephaly, which is always terminal. But with this encephalocele, she had this large fluid filled sac on the back of her head and the doctors weren't sure. They said there's a range of outcomes we could be able to do surgery. She could have know mild disabilities all the way to this could be terminal. So, we were meeting with neurosurgeons and hospice and still going like to finance class and traveling out from Bloomington.

- Liesel Mertes

And I had taken care of two small and taking care of two small children. And Luke, Luke was helping. I delivered her on February 15th in 2011 full term full term. And it was it was clear that doing anything would be doing things to her and not for her.

- Elaine Brenner

But you didn't know that priority for those 20 weeks you're operating kind of limb right.

- Liesel Mertes

Just waiting and her spinal column was hollow and she had this lack of connectivity. She couldn't breathe on her own she had to be intubated right away.

So, so they, they took her and got an MRI right after she was born and they came back and they said you know she's not a candidate for surgery which is horrible. I mean it's horrible. We spent two, she lived most of her days in the hospital. It felt important to not have her be alone. We had we had a family that had come from all across the US. She was always being held we had people take different night shifts and everybody knew that what her diagnosis was. So my sister would play the ukulele for my brother.

- Liesel Mertes

He wanted to show her a clip from Last of the Mohicans because he felt like no, no one should that's an important life experience, just seeing this. And she died after eight days of life. We were able to take her to a home hospice.

- Liesel Mertes

And then like you wake up the next morning to your still two living children and you know that the life that extends beyond that moment is

- Elaine Brenner

So for you as I've been thinking about this one thing, I wondered there is a particular kind of grief that happens when you're faced with the unknown. For those 20 weeks of maybe it could be mild disability maybe it could be death. And then the grief of post mortem you know post Mercy having died. How did those times differ for you?

- Liesel Mertes

That's a good question. As, as she was still in utero you know we had a reason to be hopeful. You could still, I mean I remember like pray and every time going for these scans we had to come up to Indianapolis and thinking like maybem maybe it's possible maybe she could just be, she'll just be right. You know maybe she'd be OK. Which was profoundly disappointing. You know in its own way although, although I didn't necessarily think like it's gonna have you know every time it's like now it's still there.

- Liesel Mertes

Right. Still there. And there's also that time is full of still a lot of like planning and logistics and you figuring out like care for your older children and hospital visit. So, there's something like distracting in its own way of all the things that need to be done. But once you bury your child it's like, oh there's nothing more to be done. You know there's nothing more to be done and you're just left at the finality of it all. It's hard because I feel like grief is such a profoundly isolating emotion.

- Liesel Mertes

You know everybody's grief is singular to their experience. Luke, my husband, um you would want to think you're the other parent like you've shared this thing with me if anyone can get me in this. It should be you. But he was so compromised in his own way that you realize like the support you can offer the other person is really limited. And his grief journey was colored by his own moment. Like, I would have moments where I would feel like I can't do anything I can't go on. I'm so sad.

- Liesel Mertes

And he would feel important for him to be like, no I need to just get a house we've got to do something we need something normal. And like the way that you miss each other in those moments I think it's hard.

– Elaine Brenner

I think it's hard in any relationship but especially in a marriage relationship. It has to be hard to allow the other person to do the thing that they need to do. If it is absolutely not the thing that you yes. To be able to grant that like OK this can be your journey.

- Liesel Mertes

It also necessitates, I find for me, like finding supportive people who were they can sometimes talk about like circles of grief like people who are most closely impacted and then as you get out then there's like OK family there next and then there's maybe like friends and then there's acquaintances and the further out you are from the circle, like that interior circle, the more you have a capacity to actually offer care because you are not going through your own stuff in the same kind of way.

- Liesel Mertes

And there are definitely people that really stepped out for me in that and I realized how much I needed that like I couldn't just if I was just depending on like Luke. You have to be something for me. I would be profoundly disappointed and I would be disappointing. And the question like you asked about their grief afterwards. I was just I was tired.

- Liesel Mertes

I'm someone who, something I like about myself as I have a pretty wide capacity to like take on tasks and relationships. I like that I can handle a number of things and to just know in a physical sense like, no I can't, like I can be a fraction in all of these roles of what I was and to set with like I'm not like in my mind I was like I'm not a good daughter right now. And like I'm not a good mom I'm not a good student. Like, compared to what I was I felt like I was, just operating on like, two cylinders and that was more of an internal thing would be like I don't like myself right now.

- Liesel Mertes

All right I feel like I'm such a I like shadow version and to wonder like do other people like being with me because I don't even really like being with me right now.

- Elaine Brenner

Well it takes grief takes up so much of the margin in your life capacity wise emotionally physically everything else but there's just so little left right to take on anything else.

- Liesel Mertes

Exactly. I was like I'm, I'm so much less,

.

- Elaine Brenner

So this really is the best version of myself.

- Liesel Mertes

Right. And I don't like, I don't like it and I'm sure you don't like it. Yeah yeah. So.

- Elaine Brenner

So what ended up happening from a grad school standpoint? And how did you continue with the program?

- Liesel Mertes

1. I did. So, Mercy was born. I don't know if it was a serendipitous timing. There's never a great time for a child to die but it was right at the beginning of spring break that actually my water broke and I delivered her so is this interesting time in that there was this totally intense week. And then for us, I was in the midst of grief; you just feel things really, there I felt in my experience the things I knew I wanted I wanted very strongly and there were lots of things I didn't know I wanted but it felt really important.

- Liesel Mertes

I was like, we have to get out of town like we have to. So, I called the woman who was, she didn't know me that well, she was my mentor within the program and I said, Can you please use your house in Arizona? And my daughter just died. It's just hard to say no to that. So, we went to Arizona for a week but then we came back and it was time to start the second semester

- Elaine Brenner

And talk about the challenges there.

- Liesel Mertes

I'll step back for a second. Something that was that made that return to what was ostensibly my place of employment easier was actually, I you really I look back in this work that I'm doing and think, I was well met by people there, they um they had a director of Student Services Gayle and Gayle had just, you know, kept her abreast of what was happening but she she showed up like in the hospital room in Indianapolis She had with her a handwritten note from the Dean of the business school and again.

- Liesel Mertes

She she said at the time, she said you know, is it would you be OK if I let all of your professors know just so you're not having to explain it all the time. She functioned as something of a point person. She got all the news of like funeral details. I had a number of people for my MBA cohort that showed up actually to the funeral of the Dean of students was there. Gail was there all of which I didn't actually change like the horrible reality that she had died. And it was super hard but it did make me think when it was time to return of like OK.

- Liesel Mertes

Like people have seen me. It's not gonna be this orphaned experience but still there were the challenges coming back because I'd been so visibly pregnant and some people had known like that it was kind of a complicated pregnancy other people just knew I was pregnant right. So, I come back and I'm not pregnant. And, of course, you know people are like you had the baby and like they're excited.

- Liesel Mertes

Right. And that you know it's just passing in between classes and then is that choice of like, I feel like I have what. So, it's and it's a strange thing that can happen then you find yourself like managing their response because they're obviously like devastated they thought they were just going to finance class.

– Elaine Brenner

Right now I'm the person that asked a woman and child and then you find yourself sometimes uncomfortably.

- Liesel Mertes

I mean I had to I had to actually coach myself to not do that because you can get in the mode of being like No it's okay. I know you didn't know.

- Liesel Mertes

And then that's like doubly emotionally draining to me. So, I had to be like you know it is not my job to manage them but I mean that was exhausting some way. And some people were like some people did find I just remember one, one woman in the bathroom and I told her and she's trying to care for me and she's just like she's, she's running through her mental database. And when she came on she was like You know I read this this story and I think I was like a Maori tradition that dead children become butterflies.

- Liesel Mertes

And she just left it hanging there. I just remember like I wasn't so much I was deeply offended but I was just like, I don't, I don't even know what do I do. To say it and I was like well there's a lot of butterflies this time of year.

- Elaine Brenner

Let's get back to class. I got it.

- Liesel Mertes

I decided I was taking a fuller load. I was taking an Excel spreadsheet modeling class that everybody said was like a super great class to take. And I remember, it was like two days before classes were about to start. I remember looking at my schedule being like, I don't have to take that class and I I'm not going I'm not going to take that class. Same thing, the summer internship is a big thing in business school and I'd had it like all lined up I interviewed and I remember taking stock and thinking, you know there are a number of reasons this would be good to do but I don't actually have to..

- Liesel Mertes

And that took its own, I mean, I felt for me and wanting to please people and do the right thing it took its own amount of courage to be like, I'm not actually going to definitely I'm not I'm gonna like have some time to be a year to be present with whatever is going to come up so that that summer and that spring like I made time to like, I'm just gonna go for super long walk and be with myself and try to distract myself.

- Elaine Brenner

So when I think something that has always, always impressed me about you or I've always noticed about you is your intentionality around grief that I didn't know you at that time but I think I met you pretty shortly after that and the way that you honor your grief and probably your family's grief too. And Mercy and how that even all these years later it's still a mark for you. You know you still come back to it and you honor it. You don't push it away. That was a long time ago. I don't need to worry about it.

- Elaine Brenner

I don't need to feel it but you allow space for it. So, what types of things do you do now that allow you to kind of visit that and give it the space it needs?

- Liesel Mertes

So, it is something that we've tried to, to build into our family rhythms to talk purposefully about with our children we wanted to you know that's a that's a that's another like, very broad and important you know conversations like, how do you how do you do that with children?

- Liesel Mertes

I've gone through the loss and you know how do I attune myself to their grief was still in the midst of my own and honor that it's been important to talk about with our children our two children that have come after Mercy of understanding like this. She is a part of our family her picture, so we have pictures that are up in our house and a prominent sort of a place some tactile things. My mom, she makes beautiful quilts. She had made to she, she felt just in in her spirit like that she would die. So she, ahead of time, it just felt important to her that we're making these two little quilts to bury Mercy.

And one for me to have so that's still like I'm very prominently atop my desk in my room. So it's important to see things. And that's something that people gave us like different gifts. There was photographers. We have a friend who is, he is very artistic photography is one of his expressions, Mark. And he came down from Chicago to take pictures of Mercy while she was still alive. So I treasure those thinking and to have them.

People give us things like shawls or, we have a box that has like her physical memories in it. And I can't quite bring myself to like, I still I think I have I think I wrote a note on the back of a receipt that I taped to the door in the hospital of like hey I went down to get food. You know if anyone visits but even that like it is just like a physical marker of the time right. Can't quite bring myself to like get rid of this scerawled note that I got the receipt right.

- Liesel Mertes

But year in and year out from the time of year February is um, I still feel it like physically in my body the anticipation of it. Those days feel momentous. Luke and I for a while we, we would go away together around that time which was its own mixed bag.

- Liesel Mertes

Sometimes when you're missing each other then there are years where I feel like I was I just got away by myself. I tried to share this with you not so much about him but about right. I don't know, I never quite know what I need or want right because and I've had to like learn how to release that in an annual way.

- LIesel Mertes

So we've tried a number of different things. What I have to release emotionally is that no matter what we do it never feels good like it never feels right. And I can get into this cycle of like

- Elaine Brenner

I haven't quite scratched that itch.

- Liesel Mertes

I haven't done it like especially from my personality like I haven't executed well the grief. I want to honor a lot of. And I just it was like I don't know maybe six years ago or seven that I really like it's always gonna feel bad because she's always dead.

- Liesel Mertes

That's sad. And like you can't ever get around that like it can be the day that like touch it you know checks all these boxes and I will always feel like exhausted and incomplete because it is incomplete like right then it isn't right. It's not right isn't right. And it feels like

- Elaine Brenner

Cupcakes don't make it right.

- Liesel Mertes

Cupcakes are great right. You get it from a good place. But yeah they they don't touch that reality anymore.

- Elaine Brenner

I'm wondering after Mercy died what ways because part of your job was school and part of your job was mom. And so, what ways did you find or looking back do you find that you were missed and those capacities? And did people tell you or did you just intuit it because you're you?

- Liesel Mertes

How Mercy's death intersected with aspects of like faith or purpose or who you know I was in the universe or who kind of like those were major themes like me you have something horrible happen. There was a lot of those things called everything into question. And there is a certain way that people of faith can talk about death which can, can feel really packaged and switching. Kind of like cliched and it was out of a number of well-meaning places but like well there's, there's a higher purpose in all this.

- Elaine Brenner

And I made an angel.

- Liesel Mertes

Oh that was one of the worst statements like that God needed an angel just those like pat phrases that I felt like flattened out the reality of like you're seeing me like you just saying a thing even if I might come around and like the thing you're saying like that deliver you right. It felt abrasive and it felt like there was no great way to respond to that. Like even if I was at a place where I just thought like, That's crazy, you're like you, you can't really say that somebody is dumb.

- Liesel Mertes

So you left to the position of just like nodding kind of I and maybe, maybe if I had a little more chutzpah. I think it's I think I would artfully say that now to people who like who I observed saying those things, you know, I might pull him aside after that think, like, I do really want to imply what is being implied in that?

- Elaine Brenner

Right. Yeah. So I think it's it's a lack of those ways and lack of knowing. Again, I think this speaks to the work that you're doing the lack of knowing what to say right in the void of options. People pick the thing that's most palatable to them. What was recently said to them right.

- Liesel Mertes

They have a limited toolkit. Yeah. Like I've got a hammer, I've got a wrench and I've got God has a purpose. So and like, the upside people who did things well I mean I am what I really I didn't even know what I wanted.

- Liesel Mertes

I can't even say like I wanted this and people failed. But something that felt meaningful was that people were just like, that's really hard right. I can remember telling someone and, and he was he just drives like that's just one of the worst things I've ever heard. He, he, he dropped an expletive he was like, Yeah. And I felt like resonant in its own way.

You know it is physical gestures. I remember like I'm Mercy died, she died around maybe ten thirty p.m. And then there was this like process wanting to like spend time with her body that felt important and you know we wanted to do things like get footprints or handprints, where you didn't wanna do that while she was alive.

- Liesel Mertes

So my mother and father-in-law and I were doing that, but by the time the undertaker came, you know it's such a strange thing you know this person who arrives at like 3:00 in the morning in a black suit. And he came with like a quilt that they put, I have always appreciated even that little attunement. I got him to say waking up the next morning…

- Elaine Brenner

And you'd given birth giving birth eight days beforehand. So, all of this like regardless of the outcome you're still a person who has recovery

- Liesel Mertes

Um but I remember waking up and you don't even know like having encounter that day and my sister came downstairs just kind of silently with an English muffin. And I was like, yeah, I do just like one in English you to eat and eat um and, and especially in the immediacy, like people showed up to clean my house or detail my car right give us gift certificates. Easter was not so long after and I just felt horrible, it felt horrible to be doing like Easter. I felt horrible, like the weather was crummy and, you know, we had an MCL gift certificate which at least I was like, well at least we can get something that's you know we can eat.

- Liesel Mertes

So those, those physical gestures felt like deeply meaningful and right it somebodies frames couldn't quite hit the mark.

– Elaine Brenner

So and talking about those kinds of gestures and talk about say the ensuing months were there things that people did. You've talked about Gail and Mark from student services and the photographer to me. Those things strike me as things that only that person was able to do or that that person specifically was able to do maybe that, you know, Gail couldn't have shown up and taking great photographs you know. So what were things, what are the things that stand out now as you look back over the ensuing months that people did to support you that were unique or specifically very helpful?

- Liesel Mertes

That question makes me think of people who gave out of there, like you said, people came out of a specific skill set, like the person in detail my car and I'm like, he was just really good at cleaning out cars. So, he felt like, you should have this. I could do it. You should have a clean car when you drive to the funeral, which I never would have thought of asking for.

- Liesel Mertes

I didn't I, I in my mind, didn't think I cared about my floorboards and I probably didn't you know notice that but to, to ask yourself, what what am I good at doing that I can give freely because sometimes people offer help to people in grief like, let me know if there's anything I can do and what if someone says to you I'd like for you to watch my children and you think I hate children and

- Elaine Brenner

You don't want me to watch your children.

- Liesel Mertes

Right. So, to be able to think specifically like, I am really great at mowing the lawn and I do it on Tuesdays and Thursdays.

– Elaine Brenner

Well plus, I say the hard thing about when someone says, let me know what I can do I'll do anything. Then you're just putting the onus back on the person that you know barely has the energy to shower much less put together the schedule that they have or whatever.

- LIesel Mertes

Exactly so to be able to do it what you can offer meals were great. As I as I said we were living in Bloomington. So, there were people who drove down you know the like clean our house. I. It was later, I mean Mercy died in February, by Christmas time that you know even that next Christmas time, I felt still it's like such a low ebb. My mom was like, I'm going to decorate your house for Christmas like, which was great. I always appreciated people checking in. I think sometimes there is this fear of like if I bring this up you're gonna be sad.

- Liesel Mertes

And I remember even, you know, just my, my business school classmates who would who would ask like, hey you know, how are you doing with your sadness? And even to the level of people who were insightful enough to say, I know this can be like hard on your marriage how are you doing with you and Luke. And there were sometimes that I didn't want to talk about that like that's also it's good to ask those questions.

- Liesel Mertes

You also should be prepared that sometimes people want to talk about that and sometimes they might not and not be offended and be like, you didn't want to I asked you this. So, people who can like take that with an open hand. And also, I think something that was helpful was like there were times where I was I was just doing my work like I was facilitating conversation or preparing for a presentation and like doing a good job and to be able to just recognize that like you did a really good job in that presentation. I think for me and a lot of people you you can doubt your competence and capacity. So for people that come alongside and be like that's a great point.

- Elaine Brenner

So you then had Moses and the experience with Moses could potentially have been similar. So talk about that a little bit.

- Liesel Mertes

Well so, it's this totalizing thing to have a child that we knew when I have children after Mercy. Jemima was our next little baby. She's delightful she's almost seven. Thankfully, I actually didn't feel like that was a pregnancy that was overshadowed by a lot of apprehension or fear. It could have been it just wasn't, in my experience. There was something that I felt was different with Moses. We were we were going to go on vacation over with, with extended family over New Year's. And I remember feeling as we were down on this beach just thinking like, and I had a 20 week scan coming up in January and just the sense of, I just, for whatever reason, like I can't wait for that to be over. And it was just this like kind of like hang, hanging I haven't felt that with Jemima, I just want it to be past that in a roundabout way. That felt like aspect of confirmation as we went in. And once you've had a complicated pregnancy, they tend to take you for a more in-depth scan and that the doctors were up in Indianapolis. They said it's a boy.

And um and they left and Luke and I had maybe five minutes of sitting there and we actually said to each other isn't it so great to be in this space so many people are getting such hard news. Isn't it great. Just not. And look we're going to have sons; he'd always wanted a brother. So this was gonna be the second boy. And so, then that moment where the doctor comes back to tell us about Moses his heart condition, which is unrelated in any way to what Mercy had to say.

He's he's entirely missing one of his valves. Tetralogy of fallot with pulmonary atresia. It's, it's different in the last 30 years what they can do with the heart is staggering, that I heard someone say I think was my father. The brain is much more like a complex computer. If something goes wrong with that, you know just the impact is huge and very complex. Whereas the heart is much more it's like a pump, you know and how they show this condition actually and Riley specifically is a fantastic hospital doctor John Brown pioneered some of the cutting edge procedures and he was Mo's surgeon.

So all those aspects of prognosis were better. You know if you're going to paint a rosy picture of like, well this is better

- Elaine Brenner

But 20 week scan 20 week scan.

- Liesel Mertes

Right. Right. And the horrible thing of just being confronted again with like there's something I can't control for my child and I'm so sad about that. I didn't, somebody could very legitimately feel like, why me like I, that actually, I felt occasional aspects of that but it was more this sense of like, oh I've stepped in the world of now like I've heard so many stories like this complicated things wrong miscarriages disabilities young children dying. If anything it felt like, it is a crapshoot. And totally random. Why not me again.

- Liesel Mertes

It's a different journey with surgeries and medical intervention and preparing, you know Moses had his first surgery when he was six days old so I remember like, again, delivering a baby. We couldn't even be in the same hospital; he was taken by ambulance I delivered him at Methodist he had to be taken by ambulance to a different hospital down the road with Luke. So, we're not even in the same building. I'm having to get chauffeured over there by taxi. He's gonna have surgery five days five or six days later.

So I'm figuring out like logistics for my other kids. Magnus is having preschool graduations. I'm three days postpartum bringing cupcakes to Magnus and then going to Riley where Moses is in surgery and just all of these like moving parts. And Moses has had subsequent surgeries, he's had a couple of catheterizations and few open heart surgeries. The support around our family of like preparing for surgery again. Meals, help with children. Something that was so particular is we have had a group of people who have stayed with Moses through the night at the hospital. You Elaine are one of those lovely people because we can't stay 24 hours.

- Elaine Brenner

But I think that speaks to your again your ability to kind of honor what the needs are in the moment because I think there are many people who certainly could benefit from having people around them do that and probably have the people around them willing to do that. I mean I know I felt both I don't know. Honored and sort of special that you would trust me to stay with this baby you know and in the hospital and while you could sleep and liking to be asked and liking to be able to do it. But I think there are a lot of people who don't know themselves well enough to know that they would need it or even if they know it feel that they couldn't write well

- Liesel Mertes

And maybe, maybe that circles around to like I don't remember ever feeling shamed by asking for help although that was a fear right. Like, I think if anybody would have done that to me it could have caused significant shut down like, if somebody had met me and been like why do you need. Like, shouldn't you be with your baby through night.

Which maybe gets to like the importance of healthy people if somebody does actually ask try not to make them feel like a burden. I can have its own, but yeah I feel like people honored that and it was super helpful and important. And then there's, like you just need this new support in the aftermath of you know like after heart surgery he, you're kind of homebound for a while because he can't get sick. He can't go out. So, having people come and visit and or take the other children out there are people who is a great thing to be able to do.

We had people friends of my parents who they've taken upon themselves that anytime Mo's having surgery like they're going to bring a bunch of food to the waiting room because we're usually there through lunch.

I think you've been there and so you know I think in the past we've gone. Indian food delivered or brisket. It was great like the last time we had this fantastic barbecue and the physicians came out these this surgeon and the attending surgeon and they gave us the news and it was this gift that we've been given to have food but we're able to actually extend that to them. Dr. Brown would you like to have some? Yes he does. I'd like to do that before. So there's things that we're good.

I like cards; I like it when people check in. You didn't ask this, but I think sometimes, especially people who are far away and they wonder how they can be supportive. I've had friends likes and Starbucks gift cards or just emails and I always appreciate that.

- Elaine Brenner

So do you think your experience with Mercy when you got the news about Moses. Were there things that you thought you know. Again not not the same but you were sort of dealing with that limbo feeling of, of what's going to happen here and just the grief of I know this isn't going to be smooth sailing from here on out. So were there things when you got the news about Moses that you thought, OK I know I need to handle this differently I know I need to do this?

- Liesel Mertes

Yeah I think that I, I feel very refreshed by being outside by moving like to be in like to go on a walk or to be on a trail run or paddle board feels it's something that fills my cup in particular ways. So, I think I knew that about myself in a different way. That's, that's not a selfish thing. That's an important thing. So, I should honor that. I think I knew I knew more about that stage of life how I, I wanted a community of people that were like in it.

I had realized actually that to be able to talk about your struggles or the hard things actually I had found opened up a vulnerability in other people. And like, they move towards me and support, like I had found, whether that was in a women's study group that I was in or just like friends at that stage of life had actually been a really true way of connecting. So, so I was much more comfortable like putting that out there and expecting that people would meet me right.

- Liesel Mertes

I, even though we anticipated it. I mean, it's hard on your marriage and there's a reason statistically, I mean, people will quote anywhere from 60 to 80 percent of marriages where a child dies end in divorce. And it was, even though I anticipated it would again, be super hard and stressful in my marriage in a way that you know, we've, we've had to revisit in subsequent an important marriage counseling. And even, even like knowing that I would actually say that the stress of there was the stress of Moses but like the stress that it was in my marriage and in my relationships only like compounded and exacerbated that I don't evenm, I mean maybe if we had had better self-knowledge and counseling prior to that we'd had counseling but yeah, I'm sure it was impactful. We've had more targeted better counselling since then.

- Liesel Mertes

I wish that could have been different, but it almost felt like inevitable because for both Luke and I so value our parenting. You know, we will take our stress out on your kids, but there is this sense of like, I am so stressed out there's so many things I shouldn't take it out on my children I'm gonna really try hard not to. And they're just relentless. Children are relentless. They, they kind of know, they kind of have a sense but they just need a lot because they're kids. And so, you can spend all day keeping it in check and trying to do a good job. But then when it comes to the other adult in the household if they need anything or step out of line it can feel so like deeply offensive like you to like how great you need something or how could you drop the ball.

And that is its own, you know I don't want to be that way in any of my relationships like that begrudging of like, there's no space for you to be weak but in a roundabout way, like that would be the outplay of it. So, I wish I could have been different. I'm, I'm glad that we weathered it enough but that was like a painful aspect of something that even I could see coming. But almost like it couldn't stop the train right because it was so immediate.

- Elaine Brenner

You're just surviving better.

- Liesel Mertes

We don't do that as much. But then again, we don't have a child like in medical crisis. And our kids are a little older. It changes it.

- Elaine Brenner

So so, given that now you've gone through these two in some way similar but very different kind of grief inducing experiences, what insights do you have to share with someone else going through something similar?

- Liesel Mertes

It's going to be really hard. It's just really sad, especially if it's touching on the health of your children. I mean it is. You never think that you would have to bury a child is horrible, horrible. It's universally recognized as horrible.

I, I felt, you know for me again like God and purpose, like I felt God as gentle towards me in the midst of that. And especially like there are people that might encounter like someone might be listening and you might not have a great community you might be surrounded by people who are like rushing you or don't have time for your sadness. And that's really hard. I hope that people can be gentle with themselves to allow themselves the space to be like a day might be full of so many complicated emotions.

You know, you might be like sad detached happy over like, in the space of an hour and just, like give yourself the space to have grief be messy and nonlinear. But I have also experienced that there were chapters like beyond the immediacy of that grief. And that's not to paint some rosy picture like oh it's all gonna be better because I mean sometimes it's worse or different but just that like it will not it will not feel the same as it does right now.

- Liesel Mertes

Knowing, knowing things that are life giving you might not know much. You might only know like I love eating french bread right now. Or like I just I really need to go for a walk or you know I, if, if you know it like, it's good to pay attention to your gut and what is leading you in. And that there's like, I don't know there's different ways to carry it. There is a hardness but also a sweetness to like…I, I am, over the years like integrating Mercy a lot more into my life. But like my, I think that fear is like, that this person will be forgotten like no one might, my child will fade.

I don't know. I don't even have something like that a real thing. But I find, year in and year out like, she continues to be an important part of our, our family and our, I think and this is like a roundabout way for, for anyone who is in a caregiving position like, you work with someone or you care for them, that that with a child who has died like that is a real fear: no one, one I will.

I, I mean, I was even feeling this last year. It is important to be able to carry that memory with them, you know, if you're someone that remembers their name and they remembers their birthday that is willing to speak that it's always meaningful to me.

- Liesel Mertes

It like, even people who, you know, maybe they read like the blog I was keeping at the time and they told me years later and it feels like, well it feels like one more way that Mercy is made real in the world. But even this last year I was I was reflecting on my, my parents died, like I was picturing myself as an 80 year old woman, should I live that long. And I was like, right now my kids like, I take them to remember Mercym like we do things but I'll probably be living their whole lives like when they're in their 50s or 60s like, will this day still be important to them?

Like I hope they still remember, but like my mom will be dead, my dad will probably be dead. You know, all these people. And I was like, I'm going to be like celebrating Mercy's birthday all by myself. So, I called to my sister, I was like well you do like little road trips with me? We could do that because from your entire life know that might still be the case but I'd love to just hope that I have the necessary resilience to deal with that.

MUSICAL TRANSITION

It is a particular thing to really listen to and reflect on your own story. I can hear some themes that remain the same over the years and others that have shifted and changed with time. We are always in the process of becoming alongside of our stories. But for today, here are a few key takeaways that I have, after listening to my story.

• When you offer help to someone that is hurting, give specific examples of ways you want to help instead of a vague, "Just let me know if you need anything." This statement puts the pressure of imagining tasks and organizing logistics back on the grieving person and sets you up for failure if they ask you to do something that you can't or don't want to deliver on.
• Be purposeful and careful with your language around purpose and meaning, especially well-meaning clichés. Take a moment to pause before you speak. Trite turns of phrase are rarely comforting and often hurtful. Instead, offer a hug or a sincere, "I am so sorry you are going through this." You don't have to make meaning for a person that is hurting.
• A real fear for parents of dead children is that their child will be forgotten. Take time to write down important dates like birthdays. Remember the parents around Mother's or Father's Day. Take time to say the child's name or ask the parent to share a memory. These acts of attention and intention are so meaningful.

OUTRO

Disruptive life events linger; they cast a long shadow. Years afterwards, you can still be surprised by sadness or fear. Magnus knows about living with pain and uncertainty; his sister died when he was just one year old and his younger brother has needed multiple heart surgeries. Magnus shares about how pain can bring us closer to people, what kids really want from their parents, and how a note or a song can be a powerful gift to those experiencing sadness.

– Magnus Mertes

He was born at Methodist but he had heart troubles so they had to quickly get him over to Riley because Methodist never had the equipment. So he was taken into Riley Children's Hospital, I remember when I heard about it I felt a little shaky inside and I thought, am I going to lose another sibling?

INTRO

Today, we finish our three-week miniseries on childhood disruption. Over the last two episodes, we have considered how disruption particularly affects children. By extension, we are also talking about the adults that care for them. If a parent goes through disruption, whether that is a divorce or a move or a death, they are also interpreting and explaining and shepherding their child. I know, from my own story, how important and exhausting this role can be.

I hope that these reflections help in three potential ways.

• They help you better companion the children in your life that have experienced or are right now experiencing disruption.If you don't remember, childhood can be hard. There are scraped knees and neighborhood bullies. Someone is always deciding when you go to bed and what you have to eat for dinner. Now, factor in a divorce or a cancer diagnosis. It can all feel pretty overwhelming, for both kids and adults.

• These episodes help you show more empathy to friends and coworkers that are parenting children through seasons of disruption.These adults are not only managing their own sadness and exhaustion, they have little people that are looking to them for direction and guidance…and that is a really particular burden to carry.

• Maybe these reflections help you to encounter your own childhood disruptions through a different light, to reflect on the ways that you were met or missed and how that empathy (or lack of empathy) might still be affecting you now.

Magnus Mertes is my guest today. Magnus was only seventeen months old when his younger sister, Mercy Joan, was born. Mercy had a birth defect called an encephalocele, the base of her skull did not close and she only lived for eight days. Magnus held Mercy, stroked her face, and ate bananas at her funeral. A few years later, a younger brother, Moses, was born. Moses has had to undergo multiple open heart surgeries over the last five years. Magnus talks about what it has been like to live under this shadow of death in today's episode.

Magnus loves to laugh. He is a good friend, creative, sporty, he loves to draw and tells a great story.

- Liesel Mertes

So tell me a little bit about yourself.

- Magnus Mertes

So I'm Magnus and I have had a little sister pass away, great Uncle pass away. Yeah I've had some kind of hard things throughout my life.

- Liesel Mertes

Yeah you have. And we're going to talk about some of that today. But how about you tell me a little bit just about you as a 9 year old. What are the things that you really like?

- Magnus Mertes

Well my favorite sports are football and soccer and my favorite book series is Lord Of The Rings and I really like playing outside and being with family.

- Liesel Mertes

Yeah. You do. What grade are you in this year?

- Magnus Mertes

I'm in fourth grade, Miss Wilson's class.

- Liesel Mertes

And tell us about what's coming up this week that's really exciting for you.

- Magnus Mertes

This week is my very first track meet and it is also my birthday.

- Liesel Mertes

You mentioned you've had a couple of hard things happen. Tell me about your little sister, Mercy.

- Magnus Mertes

So when my sister was born, and she was three and I was 1, my mom got pregnant and I felt so excited like, I was going to have a little sister. But then, when the diagnosis came in that she would have some troubles, I just felt really down because I didn't want her to die. And when she was born, I felt so happy and I thought, oh she's going to live through this. She is. And I only got a short time with her, only eight days, and then she passed away in my mother's arms at my grandma's house yeah.

- Liesel Mertes

Do you remember much about how you were feeling at that stage or how you feel as you remember it now?

- Magnus Mertes

I feel right now, You feel sad because I really would have liked her to have been here, no offense my little sister Jemima, but I felt like I would have liked to have another sister in the house

- Liesel Mertes

Yeah I know that it affected some of how you've thought about death. Could you tell us a little bit more about that?

- Magnus Mertes

Yeah I was kind of affected the, I feel like when we die when I feel like you go up to heaven and there's just this blooming city of gold. And when I was little I used to imagine that I would meet Abraham Lincoln there yeah.

- Magnus Mertes

I also really. Why. The thought of how we're going to be made again made me feel really good inside and made me feel cozy.

- Liesel Mertes

Yeah. What. Tell me a little bit about Moses and what has happened with him and how that has made you feel.

- Magnus Mertes

Well, Moses. I always wanted a little brother, one I could play with. And when I saw him for the first time, I just, went over and just couldn't keep my eyes off him and I thought my head, This is my little brother now. But he was born at Methodist but he had heart troubles so they had to quickly get him over to Riley because Methodist never had the equipment. So he was taken into Riley Children's Hospital remember when I heard about it I felt a little shaky inside and I thought, am I going to lose another sibling?

- Magnus Mertes

But I felt really great when his doctor, Ben Ross, felt really great that they were able to do they're able to take out one of his organs and replace it with a cow organ. And now we kind of joke around like he's the only person in family whose 1 percent cow.

- Liesel Mertes

This is an ongoing joke in the family. And, in the interest of accuracy, Moses' doctor is actually the immensely talented Dr. John Brown at Riley Children's Hospital. He pioneered this procedure called a bovine tricuspid valve. Basically, a particular valve is harvested from the neck of a cow and is now keeping Moses alive. Hence, he is "part cow".

- Liesel Mertes

We do joke about that. Are there things that have scared you or made you worried about getting sick or dying? What has that been like?

- Magnus Mertes

So, one time I got a concussion and I felt like really, really, really scared because sometimes, concussions can be fatal. They can damage your brain in all sorts of ways and there's this famous boxer who died of concussion. And I was so scared at that time.

- Magnus Mertes

Other times. On Memorial Day 2018, there's a huge log that was on the White River that just toppled over and like it was stuck there and I decided since it was making all these rapids and we were getting blown away by them in front of the log. I decided to go up around the back and float down and have a little bump fall and get pushed away. But what happened was when I got there right next to the log about a meter away I got sucked under by an undertow and I was just sucking, sucking, sucked and my life jacket that neared on a branch. Those like factor for about three seconds and my mind was, I was thinking, OK I'm going to drown, I'm going to drown, a minute I'm good I'm going to drown. But then what happened, it was like a miracle because that part snagged ripped off, that was pushed the way that my life jacket cause you know how they are, they pop you right up. Once I got out of the undertow about, 14 seconds later, I popped back up and I felt so relieved. But then I heard I saw of it. My older sister Ada and her friend, Scout's, face. They were like so worried and I went over and I said, What's wrong? They said Moses followed you. He got sucked under. And then I thought, Oh no no no no. This almost happened to him, he almost just died when he was a little boy. He almost died. I don't want him to die; I don't want my little brother to die. And he was under for about thirty two seconds after that and I felt so, so scared they drowned. Then finally, the same thing happened to him. It snared and then he popped right back up and I felt so, so overwhelmed with joy and happiness and relief that he didn't drown. And I just felt like God did the miracle for us yeah.

- Liesel Mertes

That's a scary story. I'm so glad you guys were OK.

This story captures my attention for two reasons. First, it horrifies me because I and three other grown-ups were standing right next to the river, eating oranges and chatting, and we didn't have any idea what was happening. That is how fast these childhood traumas can happen. In Magnus' story, I also hear the immediacy of his fear and anxiety…and the reality that disruptive life events don't fit into neat, discreet boxes. The river, the surgery, the threat of death, they all cascade into each other.

- Liesel Mertes

Do you find that, like do you talk about Mercy much with your friends or with teachers at school?

- Magnus Mertes

Like, with my best friends who, like Sebastian Falconi. Yeah, I'd tell them about it.

- Magnus Mertes

Because I feel like I've gotten a good friendship with them and that they tell me about stuff. Like my friend, his parents got a divorce yes. So he it felt really, really hard on him. And I comforted him through that. And then later I told him that Mercy died and he, he just said, like, wow, you've been through the same stuff as I've been through this. Yeah. And that helped our relationship and now we're best buds.

- Liesel Mertes

Yeah. What are things, when you tell people, what are things that are really helpful that they say to you or help you with?

- Magnus Mertes

Last year, when I got my concussion, what happened was, when I was in my bed in a dark room, my mom opened the door and said I got a visitor. And it turned out to be one of my friends, Forrest, who was actually there when I passed out and he came there. He wrote an encouraging note to me and I kept that hidden in my bed. And every day I would read it and I would think, I can get through this.

- Liesel Mertes

Are there other things that grownups do or that are helpful to you when you're feeling sad or scared about Mercy or about Moses or about anything?

- Magnus Mertes

So when I was afraid of death, my mom would play a song that I really liked called High Noon by Andrew Peterson and it just helped me feel really good, I feel really good and think that God knows what's going to happen to me and he's taking care of me and he loves me.

- Liesel Mertes

You tell me a little bit more about that being afraid of death. What was that like?

- Magnus Mertes

So, being afraid of death. I can get, like, a shiver down my spine that I would have to like leave my family and my siblings my Nana and Pa. And in fact, my great grandma and June, she was put in the hospital at age 92 for pneumonia and I felt scared, really really scared, and luckily she recovered and she's in a nursing home now. She recovered but she's really weak.

- Liesel Mertes

Yeah. Is there anything that you feel like grown ups don't understand about kids when they're sad?

- Magnus Mertes

I feel like kids. They get like depressed and it really like breaks them up and they say like, nothing's wrong, but like, I don't think parents understand that when they say it like that, that now they just kind of like leave them alone. But what they mostly need is to engage and be comforted

- Liesel Mertes

Sure. If there's somebody listening who is going through some of the hard things that you've gone through. Do any words of wisdom or encouragement that you'd give them?

- Magnus Mertes

I would say that you guys can do this that you guys, and if you're going through a rough time, I'm sorry that you're going through them but just know that God is going to help you and he's going to give you the best thing that he can do possible.

MUSICAL TRANSITION

Here are three take-aways that I have after my conversation with Magnus

• Magnus reflected that sometimes, kids say that nothing is wrong when bad things happen. Parents, in response, will just leave them alone. In Magnus' words, "what they mostly need is to engage and be comforted." This is a good reminder, for both kids and adults, that people crave the support of relationship and community when disruption comes.
• Don't overlook the pain and the process of young children. Magnus was only seventeen months old when Mercy died. And he was in preschool when Moses was born. In the midst of our overwhelming pain, it would have been all too easy to overlook Magnus, to think that he was too young to process what was going on…to just hope that he would be fine. Yet, these experiences have profoundly shaped him.
• Music can be a great form of comfort for adults and children. There have been times where the fears were so big and words found their limits. During those times, we found that it was really helpful to have a playlist of meaningful songs that he could listen to that helped to ground and reassure him.

OUTRO

A hug, a nap, a kind word: each of these actions can be really helpful for those that are going through hard times. Jemima Mertes, age 6, shares these insights and more on this episode of Handle with Care. Jemima is no stranger to sadness. As she speaks about her safe place, breathing techniques, and how to remember well, Jemima offers wisdom for anyone walking with a child through tumult as well as for those that support parents during times of disruption.

- Jemima Mertes

I get kinda get all sad in my stomach and then my eyes get watery. I think sometimes I say that kinda because I'm kind of feeling sad about Mercy but I don't want to admit it.

- Liesel Mertes

Why don't you want to admit it?

- Jemima Mertes

Cause I'm kinda scared. I don't know why.

INTRO

Today, we continue our miniseries on childhood disruption. If you missed our last episode, we are talking about how disruption affects children. By extension, we are also talking about the adults that care for them. If a parent goes through disruption, they are also interpreting and explaining and shepherding their child. I know, from my own story, how important and exhausting this role can be.

I hope that these reflections help in three potential ways.

• They help you better companion the children in your life that have experienced or are right now experiencing disruption. If you don't remember, childhood can be hard. There are scraped knees and neighborhood bullies. Someone is always deciding when you go to bed and what you have to eat for dinner. Now, factor in a divorce or a cancer diagnosis. It can all feel pretty overwhelming, for both kids and adults.
• These episodes help you show more empathy to friends and coworkers that are parenting children through seasons of disruption.These adults are not only managing their own sadness and exhaustion, they have little people that are looking to them for direction and guidance…and that is a really particular burden to carry.
• Maybe these reflections help you to encounter your own childhood disruptions through a different light, to reflect on the ways that you were met or missed and how that empathy (or lack of empathy) might still be affecting you now.

My guest today is Jemima Mertes, my six (almost seven year old) daughter. Before she was born, Jemima's older sister, Mercy, died at just eight days old. Jemima is the child born after our great loss. Jemima has also experienced real-time sadness. Her younger brother, Moses, has had numerous open heart surgeries. Jemima has been my hospital companion, coming along to cardiologist visits and holding Moses' hand during blood draws. She exudes care and comfort. Jemima is the one that always remembers to pack snacks for sporting events, bringing extra applesauce and Cliff bars just in case someone else gets hungry too. She is not readily overwhelmed, steady and competent and deeply attentive to the needs of others.

- Liesel Mertes

So, tell us your name and how old you are.

- Jemima Mertes

My name is Jemima Mertes and I am six years old.

- Liesel Mertes

What grade will you be in next year?

- Jemima Mertes

First grade.

- Liesel Mertes

Jemima, tell us some of your favorite things to do. What do you really like?

- Jemima Mertes

I like watching movies. I like going to the store. I like swimming. I like going on slip and slides.

- Liesel Mertes

Totally. Do you have any favorite foods?

- Jemima Mertes

i like pizza. I like popcorn. I like ice cream. I like M&Ms. I like candy.

- Liesel Mertes

And tell us about where you fit in your family. Who are your siblings?

- Jemima Mertes

Magnus, Moses, Ada, Mercy.

- Liesel Mertes

And who is Mercy?

- Jemima Mertes

My baby...uh, my older sister.

- Liesel Mertes

Tell me a little bit more about her.

- Jemima Mertes

She lived only for eight days. She had a big bump on the back of her skull inside her skull was cracked in two pieces and

- Liesel Mertes

What happened to her?

- Jemima Mertes

She died.

- Jemima Mertes

Yeah. How did you hear about her dying? When do you first remember becoming aware that you had a sister who died?

- Jemima Mertes

I don't know.

- Liesel Mertes

What is it like being a sister to a sister who died?

- Jemima Mertes

Kinda sad.

- Liesel Mertes

Yeah. Tell me more about that.

- Jemima Mertes

Cause you can't really play with them and you kind of think of them feel sad.

- Liesel Mertes

What are times that make you feel sad?

- Jemima Mertes

When I get hurt

- Liesel Mertes

When you get hurt. When you think about Mercy, when you talk about times when you're sad about Mercy, what are some of those times like?

- Jemima Mertes

Uh, it kind of feels sad and I kind of cry a little bit.

- Liesel Mertes

Are there certain times of year where that happens more than others?

- Jemima Mertes

Mostly when I am in school.

- Liesel Mertes

What is it like when that happens in school?

- Jemima Mertes

Kind of sad, but my teacher helps me.

- Liesel Mertes

How does your teacher help you?

- Jemima Mertes

She makes me feel better, gives me a hug.

- Liesel Mertes

Yeah. Anything else she does to help you?

- Jemima Mertes

She sometimes gives me a snack.

- Liesel Mertes

Oh, snacks can be really helpful, can't they?

- Liesel Mertes

You've been talking lately, you've said, "Sometimes I just feel like crying and I don't know why." What does that feel like for you?

[00:04:24.560]

I guess kinda get all sad in my stomach and then my eyes get watery. I think sometimes I say that kinda because I'm kind of feeling sad about Mercy but I don't want to admit it.

- Liesel Mertes

Why don't you want to admit it?

- Jemima Mertes

Cause I'm kinda scared. I don't know why.

- Liesel Mertes

When you get really upset about something, how does it feel on your insides?

- Jemima Mertes

My brain kind of gets, my brain kind of makes me eyebrows go down on my eyes. And you kind of start shaking. And then my hands kind of want to move a lot and so do my legs.

- Liesel Mertes

What are some things that are important for you to do to remember Mercy? Are there are things that are important as a family that we do?

- Jemima Mertes

Yeah we go, we sometimes go places for her birthday. We go to Great Wolf Lodge for her birthday sometimes. And we also go to her grave and I like taping stuff on it was kinda funny when that picture blew off the grave and then Daddy had to hop on it.

- Liesel Mertes

I remember that you put a picture on her grave and it like blew away didn't it? I remember that

- Jemima Mertes

It was a picture that I had made with hearts and squares.

I like it that Jemima can laugh at this funny memory from the gravesite: we were trying to tape lovingly handmade pictures on Mercy's grave on one particularly blustery afternoon when a blast of wind caught a picture and sent it spinning. Luke had to run a good fifty yards in hot pursuit and make a diving leap. It was hilarious. And we strike this balance as a family: how to remember Mercy well without too much heaviness. My father remembers having to go to his mother's grave on every holiday as a child, how oppressive the cemetary felt in his starched suit. I don't want that for my kids. We try to have visits remain short, they are allowed to roam and explore. When we lived further south, sometimes Ada or Magnus would just ask to drop in after school for a casual visit. Another thing that we do as a family is to try to do something really fun in honor of Mercy during February. We have spent a couple of years going to Great Wolf Lodge, riding waterslides and eating pizza, so that Mercy is more than just a graveyard presence.

- Liesel Mertes

What do you what makes you most sad when you think about Mercy?

- Jemima Mertes

I don't know.

- Liesel Mertes

What do you wish that you got to do with her?

- Jemima Mertes

Play. Get to go on the slip and slide with her. Get to go to Great Wolf Lodge with her. Watch movies with her.

- Liesel Mertes

Do your friends know that you had a sister who died?

- Jemima Mertes

Yeah, I sometimes tell them. I don't really want to cause kind of makes me feel sad.

- Liesel Mertes

Yeah. What did they do when you told them?

- Jemima Mertes

Say, Oh I'm sorry. And one day when I said, for announcements, this was the day my sister died, yeah, they were like, I said death day and they were like, what's a death day?

- Liesel Mertes

Yeah. Did you tell them more about it?

- Jemima Mertes

Yeah.

- Liesel Mertes

And how was that?

- Jemima Mertes

Uh, good.

I want to interject an observation. I am thankful that Jemima felt comfortable letting her teacher and her friends know about Mercy and her death day. I think that it can be difficult for children to find the space to bring up their sibling that died. Mercy is very much a part of our family. Even as a grown-up, I can find it feels socially complex to bring up my dead daughter. At what point in relationship is it appropriate to let you know about this integral person that died, this little girl that has shaped so much of my story? If I reel that, my children probably feel it too. So, a few years ago, we decided to host a birthday party for Mercy Joan. Ada, Magnus, Jemima, and Moses all invited friends. There was cake and a showing of Big Hero 6. We wanted to provide the children with space to introduce their friends to the reality of Mercy in a way that felt organic. I hope it helped…

- Liesel Mertes

We were talking about Mercy, but you've also had another one of your siblings who has had some hard times with their health. Who's that and what's wrong with them?

- Jemima Mertes

Moses. He has a heart problem.

- Liesel Mertes

Yeah. And with Moses what has had to happen for him?

- Jemima Mertes

He's had to have his bones cracked open and fix up his heart and have wires to patch up his heart.

- Liesel Mertes

What has that been like for you as his sister?

- Jemima Mertes

Kinda scary. I like when I get to visit him.

- Liesel Mertes

You go to the hospital and visit him?

- Jemima Mertes

Yeah, I like getting sometimes ice cream and I like having fun with him cause I don't really get to see him when he's in surgery and I like watching movies with him in his bed.

- Liesel Mertes

Yeah you're really good at watching movies with him on his bed. How does it make you feel, as his sister, when he has to have surgeries or more tests?

- Jemima Mertes

Very scary. Cause I don't know what's gonna happen, what they're gonna say.

- Liesel Mertes

Yeah, is there anything that helps you when you feel scared like that?

- Jemima Mertes

Kind of breathing in and out..

- Liesel Mertes

Totally. That breathing a great thing to do. Anything else that helps you?

- Jemima Mertes

You smile, take a breath, and relax.

- Liesel Mertes

I like that

- Jemima Mertes

I have a lot of breathing I can do.

- Liesel Mertes

Did they teach you that at school? Yeah they do I like that.

- Jemima Mertes

And also going to bed makes me feel better.

- Liesel Mertes

Oh. Going to bed can make me feel super better when I have hard times too.

- Liesel Mertes

Tell us about your safe spot.

- Jemima Mertes

My safe spot is a place I made out of wood, blankets, and straps. I put the stuff in it, like putty, that I can use when I am really angry and then I can remake the stuff and keep ripping it.

Sometimes the emotions of childhood are so very big and scary. The anger, the sadness can seem totalizing. This is why we helped Jemima build her safe spot. It is a place she can go when she feels flooded by emotion. As she mentioned, she has some meaningful objects in her safe spot. Pictures and thing that calm her, paper to write on, a calculator (she loves math) and putty. Putty by request. Jemima found that she could tear and destroy putty when she was really angry, but, unlike other objects, it could be put back together again. Especially in a busy house with four children, I have really appreciated how the space spot gives her a physical space that is out of the way to regulate and return.

- Liesel Mertes

I think sometimes grown ups don't really know how to help kids when they've gone through a hard time. What are good ways that your friends could help you or that grown ups could help you?

- Jemima Mertes

They can tell you it's OK and sometimes give you snacks and give you a hug.

- Liesel Mertes

Anything else that helps you?

- Jemima Mertes

I don't know

- Liesel Mertes

Anything else that grownups should know about kids?

- Jemima Mertes

That they love candy

MUSICAL TRANSITION

A few reflections on my time with Jemima

• There is great power to a tasty snack, a warm hug, and a good night's rest for both adults and children.
• Providing children with a safe spot can help with unruly emotions. Putty can be a great resource; Jemima found particular comfort in a tactile expression for her large emotions. There are also companies like Generation Mindful that provide Time-In Toolkits. I am including their information and a link to our favorite putty in the show notes.
• When you are feeling scared and overwhelmed, take time to breathe. Jemima demonstrated a few techniques in our podcast. I love that they are teaching these techniques in school…and it is great insight for adults as well. Deep, rhythmic breathing communicates safety to your body and helps to stem the cascade of stress responses in the body.

OUTRO

Here are links to the resources mentioned in today's podcast

1. Crazy Aaron's Thinking Putty: https://puttyworld.com

2. Generation Mindful: https://www.genmindful.com/?rfsn=654637.ab95e

When tragedy impacts in the life of a child, it can be difficult for adults to know how to help. Ada June, age 11, had a sister die and a brother undergo multiple open-heart surgeries. She shares about death, the power of remembering, and the importance of being able to self-advocate in the midst of pain. There is wisdom here for anyone who is walking with a child through sadness as well as for those that support parents during times of disruption.

- Ada Mertes

I remember telling you and Daddy when I was younger that I was afraid that my grandparents were going to die or that you were going to die or that I was going to die. I was afraid because it was, now something that was going to forever be a part of my life. And it's, it's something that actually really stays with you. Not like the fear but just like the feeling of loss. And there's always a slight feeling of, there's always something that's never going to be perfectly right because you know, something, a part of everything's not there.

INTRO

My daughter, Mercy Joan Mertes, died at just eight days old in 2011. In the coming weeks, I will share more of my personal journey with grief and mourning. The sadness of her death affected every area of my life: my graduate studies, my marriage, my friendships, and my parenting. Parenting. I was still the parent of Ada and Magnus…and part of my role as their mother was to help them navigate their loss. This was not always easy. I was exhausted, wrung out by the emotional challenges of my own day.

And yet the task of translating and interpreting loss, of listening to children as they go through their own grief journey, is so important.

So today, I am beginning a mini-series to talk about childhood disruption. Over the next three weeks, you will meet three of my favorite people: Ada, Magnus, and Jemima Mertes.

It is my hope that these reflections from children help in three potential ways.

• They help you better companion the children in your life that have experienced or are right now experiencing disruption. If you don't remember, childhood can be hard. There are scraped knees and neighborhood bullies. Someone is always deciding when you go to bed and what you have to eat for dinner. Now, factor in a divorce or a cancer diagnosis. It can all feel pretty overwhelming, for both kids and adults.
• These episodes help you show more empathy to friends and coworkers that are parenting children through seasons of disruption.These adults are not only managing their own sadness and exhaustion, they have little people that are looking to them for direction and guidance…and that is a really particular burden to carry.
• Maybe these reflections help you to encounter your own childhood disruptions through a different light, to reflect on the ways that you were met or missed and how that empathy (or lack of empathy) might still be affecting you now.

But first, some context. In the fall of 2010, I had just started business school and was pregnant with our third child, a little girl named Mercy Joan. I found out, at the 20 week scan, that she had a birth defect called an encephalocele: the base of her skull had not closed. Doctors were unable to gauge the severity of her condition…they wouldn't be able to tell until she was able to have an outside the womb MRI. Mercy was born on February 15, 2011. She could not breathe on her own and she died after eight short days of life. Ada was three and Magnus was seventeen months old.

Two children followed Mercy: Jemima and then Moses. Moses was born in 2014 with a serious cardiac condition called tetralogy of fallot with pulmonary atresia. Let me put that in layman's terms: an optimally functioning heart has four valves…and you need all of them to survive; Moses was only born with three. Without surgical intervention, he would have turned blue and died. He has needed multiple open-heart surgeries.

When I was a child, I remember that out postman died. Apart from this tangential loss, nothing really horrible cast a shadow over my childhood. This is not the case for my children: they have had a sister die and a brother need significant medical intervention. Along the way, they have asked deep questions and found meaning in the midst of pain.

Today, I'd like to introduce you to Ada, my eldest. Ada is 11. She has one of the most active minds I have ever met, she is always analyzing, assessing, and making connections. She is kind and vibrant. She loves to read and run and she began Middle School this year. Ada is the big sister in our house.

Ada Mertes

1. So, I have a younger brother who is 9 years old and he he's really funny. And he, he's really, he's just a fun guy to be around his name's Magnus. I have a 7, 6 year old sister, Jemima, and she's she's really really perky but she's she's always doing all these different things and she's always doing something and she likes crafts and Moses who is five years old now. Yeah. And he he's really rascally. But he's also he can be really, really sweet and then Mercy who would be eight. And yeah.

Liesel Mertes

So talking about your siblings is one of the reasons that we're here today. Could you set the scene for us a little bit about how old you were and what point you're at in life when Mercy came into your world?

- Ada Mertes

I was three years old and I was expecting a baby sister. And when she was born, she was born with a birth defect in her brain. And so, I, there was my little sister and I was three years old and Magnus was one.

- Liesel Mertes

What do you remember about finding out that I was pregnant about your sister about her arrival? What really sticks out in your mind about that time?

- Ada Mertes

I was thrilled when I found out I was going to have a baby sister. I remember planning to have tea parties with her and teach her how to sing and to read into walk and into talk and I remember, I was finally going to have the perfect girl playmate and she could dress up with me. And that was something that Magnus could do but he just couldn't do it in the same way that a sister could. And I was just so thrilled I was going to have like a little, a little version of me that I could take under my wings.

Liesel Mertes

So do you remember finding out or what it was like to find out that it was not all going to be as you expected?

Ada Mertes

I think I was I was kind of shocked, but I think I also was kind of in denial a little bit. I thought, you know things are gonna be OK and I held onto that hope for so long that things were gonna be OK and that everything was gonna work out in the end like a fairy tale kind of and things didn't work out that way.

- Liesel Mertes

Yeah, tell us a little bit more so when she was born.

- Ada Mertes

She, she had a lot of problems, not only she had a hole the back of her skull and she also had some problems with her spine. And so she stayed in the hospital for several days and we came and visited her a lot and she had to be hooked up to a machine. Then you decided to take, you and Daddy decided to take her off of the machine and you brought her home. Well, actually to my grandmother's house but to home and that was she lived for a few days and then she died there.

Liesel Mertes

What was it like being 3 and having a sister die?

Ada Mertes

Well I remember it was I it was kind of hard because in all of the stories that I've read there were fairy tales they used to read me and the Bible stories and they would go through hard stuff but in the end everything would work out. And I think I had my fingers crossed in a way and I was just hoping things are gonna work out. I would tell myself, you know don't worry, we'll overcome these things just like you know, Robin Hood and all of these these characters that had been some my best friends when I was little and I like, till the very end, I just hoped you know things can still work out. There's there's this magical way to save her and it's it's there.

Liesel Mertes

The hope that everything will work out in the end. I want to interject a memory here, the recollection of the awful moment when we told Ada that Mercy had died. We were sitting in the basement, Mercy's small body in my arms. And I told Ada, your sister is dead. Ada was perplexed, after all, her sister was there, in the house, no longer at the hospital. "She's not dead, she's home." "No," I replied, "she doesn't have any more breath." I could see her mind working, "Then I will get her breath" Ada declared, coming over to give Mercy her breath. She continued, with a hint of desperation, "I will feed her." "No," I reply, "she is dead". There it is, that magical hope that the much loved sister would somehow be saved.

Liesel Mertes

What do you remember of what it was like after she died?

Ada Mertes

At It, I think it did affect me a lot. Even today, like the way that I talk and just act is affected by that. But then I remember I was told after this, like a few years ago, that at the playground sometimes I would pretend that I had a pretend sister and I'd play with her, it affected my play and just everything about me. I don't think, like, I don't know if I really understood what was going on. But the loss was definitely rooted within me.

Liesel Mertes

Indeed, the loss rooted down deeply. This is an excerpt from my journal, just a few weeks after Mercy died:

In the mornings, before we are out of bed, Ada June often arrives with requests for milk, snuggle bugs, and changed diapers. She will snuggle in between the sheets with us to chat and squirm before the day and her brother fully awaken. Lately, we have been playing "Baby Mercy". Ada lays in her diaper, because babies come out "naked and slimy". For the first few times, we would play overshadowed by the reality of Mercy's death. I am designated to be Ada, and I would stroke her face lovingly, telling her how glad I was to have Mercy and how sad I would be once she left for heaven. However, the game has taken a different, more painfully reflective turn. Baby Mercy (aka Ada), now declares that "I am going to stay with you! I am going to grow up!" We then play that Mercy dresses up with Ada, they play games, they eat together, and do all of the things that sisters who have years together will do…all of the things that will never be for Ada and Mercy. A dull ache.

Liesel Mertes

How did it make you feel about, an apprehension about death of other people in your life?

Ada Mertes

I think it was definitely a lot more a lot more paranoid and scared because this thing was like something that had been talked about, death. But after she died, it became like a real thing to me, it became like something that could actually happen. It wasn't just something in the distant future. It was something that was here and now and a reality in such a very different way. And I think I definitely I worried a lot more about it.

- Liesel Mertes

Tell us a little bit more about that worry.

Ada Mertes

I think not only was I worried that like my grandparents, my parents were going to die, because I knew it could be something so unexpected, but I think I was also worried that I was going to die in a different sort of way. And like, just, I kind of, I was a lot more aware that there was like a true, sad, very sad reality to that.

Liesel Mertes

Was that worry something that was just inside of you? Or did it come out in different ways?

Ada Mertes

I remember telling you and Daddy when I was younger that I was afraid that my grandparents were going to die or that you were going to die or that I was going to die. I was afraid because it was, now something that was going to forever be a part of my life. And it's, it's something that actually really stays with you. Not like the fear but just like the feeling of loss. And there's always a slight feeling of, there's always something that's never going to be perfectly right because you know, something, a part of everything's not there.

Liesel Mertes

Was there anything that was helpful for you when you were feeling like that?

Ada Mertes

So, the thing about it is it always stays with you. The sadness and a lot of times when I was younger, I didn't know just ways to get my mind off of it. Like I remember making play dough with you or just like being able to try to be a child again in a different sort of way. Not having to think about that. And as I got older, when I would feel sad about it, just having someone to talk to, one of my best friends, like I could just tell them, you know, I'm feeling sad about Mercy today and they, they remembered and they're like, Yeah, I know that that must really be sad. And they were just able to say that it really, it really hurts when people don't remember when, like, say like I'm feeling sad about Mercy, you could say that to someone and they're like, who? And you have to explain over and over again and you've explained it to this person several times before but they just don't remember, yeah.

Liesel Mertes

Tell me, tell me more. Was there anything that people did that was particularly unhelpful or hurtful?

Ada Mertes

I remember once I was writing a story about Mercy and I was particularly, particularly, particularly sad that day and I was telling them, like, I'm, I'm so sad about my sister and what they said to me in response was, "Well, you know, my my sister, she once fell and she split her chin open and she had to get stitches. So you know what happened to you was not that bad." And that just, like it really hurt because she's comparing her sister having to get stitches to my sister who died when I was 3 years old. And it just felt like she didn't even care, that all she cared about was like her pain and that she didn't really even like acknowledge any of what I was going through.

Liesel Mertes

On the other side, are there things that people have done that have been really helpful for you?

Ada Mertes

Like I said, just people being able to remember or if like, sometimes I'll be not able to focus, especially like on a day that's like her birthday or and the day she died. Or just like, just I'm feeling sad one day and I can tell my teachers sometimes like it's kind of hard for me to focus, like today was Mercy's birthday or something like that and just saying Yeah that's OK, I understand. Just having people to talk to and be able for people to understand how I'm feeling is really, really helpful.

Liesel Mertes

And I'm struck that, you know, you're talking about that sense of apprehension or wondering could this happen to me. Could this happen to someone else? You did have another disruptive life event that came with your brother Moses. Tell us a little bit more about that.

Ada Mertes

Moses was born with a heart defect. He was born without one of the valves in his heart. And so he's had to have numerous open heart surgeries and just heart surgeries over the past five years. I think four or five of them and they've been very serious procedures and I think the first one was the case. I'm 11, now five years ago, I was seven or eight. Probably something like. So yeah, that was, that was hard too because I'd already had a sibling die and of a birth defect too. And it was definitely very worrisome. Is, is this going to happen again? Is this going to to be the same all over again?

Liesel Mertes

What do you think are things that grownups misunderstand about kids and their grief or sadness?

[00:11:52.910] -

Sometimes kids don't actually, like for me, I'm very verbal, so I like talking about it but sometimes kids just don't want to talk about it and I feel, like, sometimes people are led into having, like making kids talk about it, like, oh how are you feeling? Are you okay? And like, saying, like that sometimes kids don't want to talk about it. Maybe they just, like want a hug or say, I'm feeling sad and they don't like, want to be pushed into talking about it. Or sometimes kids say, there's a lot of stuff that happens at school and it's just like, so much stress sometimes. And with all of that, it's sometimes, it can be too much and sometimes when they are asking like, hey it can be hard to like have the courage to go up and ask, Hey could I just like have some time off to just be quiet and read or like yeah, I can't really focus today. Is there anything that I could just like do. You know, sometimes it can be hard to have that courage but. And then, if adults are like, well and then they can just, it can kind of feel like they're judging you because of that but it just can be really hard to focus when you have other things on your mind and your mind can be swirling all around, you can't focus.

Liesel Mertes

What is helpful for you when you want to be able to focus or deal with some of those emotions?

Ada Mertes

Well sometimes I listen to music that really helps. And I can't sometimes. Just talking to people not even about it, just like making conversation with others can really help. Or just being able to read a book or take a nap can really help. But sometimes it's hard to like do that within the chaos of everything that goes on in our everyday lives. And it's really good to take the time to do that when you feel like, Oh I'm feeling really sad or really stressed about this. I want to be able to have self care and that's something that people can really struggle with because they're like, but I have to do this so that they can't. Sometimes they don't understand their own emotions. But what really helps is just to take a moment to say, what can I do to help myself feel better? And then maybe be a self advocate for yourself. Ask an adult and if they they don't help you, then ask another adult. You need to be able to advocate for yourself when you're feeling sad like that you.

Liesel Mertes

Do you have any, those were some great words of insight for people who are going through something similar, but as you think about, if there's anyone listening who has a child who is going through grief or who is a child going through a disruptive life event, what words of insight would you offer to someone in that situation?

Ada Mertes

What I would say to the children is, it's not your fault and it's OK. You are, you're always still loved by God. And no matter what happens, God is always going to love you and your parents are always going to love you and just keep believing in the power of hope. Things can feel really, really hard at times, but just keep, keep believing that things can get better and just, if there's a time where you're just feeling super overwhelmed and you can't get this sad thing out of your mind, be able to self advocate for yourself or just be able to say, you know what I'm going to take a break from this homework, it's really stressful and I'm really, I can't focus on this because of something else and I'm gonna go and take a nap where I'm going to go and take a walk or go for a run. Be able to be vulnerable. Sometimes to be able to tell people, I'm feeling really sad because sometimes that really, really helps to be able to, to let people know that you're feeling. And for parents, I'd say just be able to to give support. And you don't always have to bring it up. Sometimes that can be hard to talk about, but be able to, be able to find fun things for you and your child to like, say look, let's go on a bike ride.

Ada Mertes

You know it doesn't have to be something big. It can just be like going for a bike ride or reading a story together because sometimes those are the most meaningful moments, just being able to sit down take a break from all the busyness or all the, the grief and everything that's going on, just being able to do what you did before everything happened. Being able to just be a child in a different sort of way.

Liesel Mertes

You, you spoke about that feeling of feeling overwhelmed or for a child who might be listening to that. Could you tell us a little bit, could you describe like what that feels like inside of you when you know that that is coming or when you're in the midst of it?

Ada Mertes

Sometimes it can be just like you just can't focus. You're like working on a math sheet and it should be super easy. It's something you know or you're, you're reading a book but these thoughts just keep nagging at you like, Oh I'm so sad that my moms have has cancer or I just my siblings really sick right now. I I'm really worried. I can't, I don't know what to do. It can feel like that. It can also be like, it can just be like, I can't take it anymore. I don't know what to do. And sometimes, it can just be like you can't, you just can't think about anything. Your brain's overloaded.

Ada Mertes

You really don't know what to do and in that moment I'd say, like talk to me and I'll ask them like I want I can't, I don't know what to do. And I'm really, really stressed and I'm really, really sad. Is there anything that you know to do or you could ask like, can I just have a break from whatever you're doing or could I just like go and ride my bike. Or, if you're doing homework, like can I read a book or listen to an audio book or something.

Liesel Mertes

Have you needed to take time like that. I'm struck that you have been in school like on days when Moses is having surgery, have you needed to take moments like that in a day?

Ada Mertes

There was one time where I was doing math in class but I just could not focus on it. It was I think it was Mercy's birthday and I just couldn't focus. I was really, really sad and I just I went to my teacher and I said, "Mrs. Wilson, I really, I can't focus today was my dead sister's birthday. Do you mind if I just take a break from math for a little while?" and she said, "Sure Ada, that, you can totally do that," And just being able to be vulnerable is really, really helpful. Or sometimes on days where Moses is having surgery, I can go down and talk to the school counselors or just like play a game with them and be like, you know, Yeah he's having surgery today think thanks for caring about that. Thanks for noticing. Thanks for being there.

Liesel Mertes

I'm so glad that you've had adults that have been able to be there for you like that. Is there anything else that you have not gotten a chance to say, whether it's a story or something that you thought of? And we can edit it and put it in a certain point.

Ada Mertes

Well just like I said before, just being able to remember people's grief is really, really important because if you forget, it can feel really really sad to the other person. I know many people have forgotten about Moses his condition or about Mercy. And I've explained it to them, like I've lost count, I've explained it to them so, so many times and they always say, oh I'm sorry, but I never say any more about it. And then I talk. I try to talk to them about it, hoping they'll remember because I've told them so many times but they they never do.

Ada Mertes

And it feels like, in the in the hubbub of and the busyness of all of our days, remembering something that's kind of insignificant that doesn't affect us. But you know, really is important to your friend, being able to remember that, in being able to acknowledge that throughout your life daily basis on a daily basis is really, really, really, really helpful. It really, really makes me feel supported and loved when people can remember that.

Ada Mertes

And I really just remember, remember when someone's going through a hard thing. Remember and be able to say, like, hey are you OK? I know, I know that what you're going through is hard. And if they say, yeah, then you don't have to bring it up but if they say, no, I'm actually feeling really, really sad and you can ask them if they want to talk about it and just be able to be there and remember don't forget because they feel like that's the worst thing it can do.

Liesel Mertes

I'm struck with one more thing that you talked about as I was thinking, you know, for kids who are experiencing disruptive life events, oftentimes their parents are also going through disruptive life events. What is it like being a kid watching your parent go through something hard?

Ada Mertes

It can, it can be kind of scary. And also really sad because you see parents vulnerable and they're supposed to be the ones taking care of you. I'd say that sometimes, if you see your parent being vulnerable, maybe not in the moment but a little later, be supportive of them supportive of them too. You can have the entire family can help. They can support each other and be able to build each other up, give each other just encouragement throughout the day. Pray for each other be able to be there for each other. Can really help to have a safe family and a safe school and workplace can really help.

Ada Mertes

Just be able to remember and be able to support your family. And like, if your entire family is going through something, be able to be vulnerable with them because they, they probably know how you feel more than anyone. Also be able to be someone in your family who can be able to be like a bright shining candle in your family in a moment of darkness, when your siblings are stressed and you're having a fight with them. Just don't get angry because there's more going on. Be able to just give them a little bit of, a little bit of leeway or make your parents coffee in the morning or just be able be able to be there for, not only your family but your friends when they're going through something and be able to be vulnerable. Sometimes that's what you need.

Ada Mertes

You need to self advocate sometimes and then other times be able to know what you need and just be able to take that time to talk. Maybe it's you just need a good cry. Sometimes you just need to cry and when that happens, just be able to give yourself that chance because nobody's going to judge you; they don't, they don't know what you're going through in the same sort of way. And sometimes you really, really just need to be able to give yourself that.

Liesel Mertes

Thank you Miss Ada June Mertes for joining us.

Ada Mertes

Thank you.

MUSICAL TRANSITION

Here are three closing thoughts from my interview with my daughter, Ada June Mertes.

• It is meaningful to remember with someone that is grieving. Ada talked about the pain of having to explain, again and again, about Mercy's death or Moses' surgeries. As you remember with a child, resist the urge to make comparisons or rush them too quickly to a resolution.
• It is OK to cry, it is OK to be fragile, it is OK to need a hug, even years after the death or the diagnosis. There is no set timeline for grief.
• Kids (and grown-ups), learn, in the words of Ada, to self-advocate. Are you feeling overwhelmed? Let someone know. Would you benefit from a break from your homework or class? Let someone know. Do you need a hug or a kind word, don't be afraid to ask. There are people who can and will help you. And to all of the school guidance counselors and teachers and bus drivers that have cared well for my children over these tear-stained years, let me take a moment to say thank you. Thank you for making the space for my children to hold their grief instead of hide from it.

OUTRO