This Is Not What I Ordered: conversations on chronic illness, loss + change

Today I’m joined by Brynn Saito: educator, organizer, and award-winning poet. Brynn’s latest collection of poetry, Under a Future Sky, was inspired by her visit to the Gila River in southern Arizona, the place where where her grandparents were imprisoned during World War II era incarceration of the Japanese American community. Together, we delve into that visit with her father and grandparents, and explore the family writing project that emerged from the journey. Along the way, we also discuss her personal health experience with endometriosis and fertility.

In this conversation, Brynn examines the intergenerational impact of trauma and the healing power of storytelling. We discuss the Yonsei Memory Project, an initiative Brynn co-founded to honor Japanese American elders' experiences during World War II incarceration. We also focus on Brynn’s personal health journey, navigating endometriosis and fertility challenges, and the intersection between personal and collective healing. Brynn's poignant narrative invites us all to contemplate the transformative potential of storytelling, poetry, intergenerational dialogue, and embracing vulnerability in the pursuit of healing and connection.

Episode Highlights:

• Brynn's journey to Gila River: visiting the site of her grandparents’ incarceration during World War II.

• Journey through landscapes: From internment camps to fertility struggles, Brynn navigates physical and emotional terrain.

• Acknowledging the past: Brynn's storytelling prompts reflection on honoring one's heritage while navigating the present.

• Embracing truth: Highlighting bravery in confronting and embracing personal history.

• Transformative power of storytelling: Reflecting on healing and self-discovery through narrative.

• The Yonsei Memory Project: Preserving and sharing Japanese American history.

• Healing through vulnerability: Brynn shares her journey of infertility and the role of poetry in transformation.

Quotes:

"It's been quite healing on a multigenerational kind of scale to be able to connect through the generations about this story, about what happened to us."

"It can feel scary to be curious or ask what happened…but it's never too late to open that conversation."

"Have that trust and faith that healing will continue."

"There's something very loving about inviting our family members to step outside of the role they've always been in."

"It's about bridging generational gaps and fostering emotional expression."

"Your voice is wise now, beyond kindness."

"There's something about place and returning somewhere where the energy of ancestors were."

"It taps into all these larger questions around just gender and power and social expectations and what it means to mother and be a mother."

"Using the poetry and the writing to kind of dance with all of this has saved me.”

"When you share your work with the world this way... it's almost like a relief to hear someone being open about this."

"It does feel healing... just really less alone and just feeling like, ‘Oh, this is a safe place.’"

"I think poetry belongs to all of us."

"Sometimes I think of my poems as these little creative little children that kind of live in the world and take on a life of their own."

Links:

This Is Not What I Ordered

Lauren Selfridge

Brynn Saito

This week, join me for a co-hosted episode alongside returning guest, Melissa Platt. She is a clinical psychologist who specializes in working with survivors of complex trauma, and since she last joined me, has received a Ménière's disease diagnosis. In our candid conversation, we explore the complexities of living with progressive health challenges, the impact on one's identity, and the vital role of open and honest communication. Melissa's personal journey serves as a poignant backdrop for us to understand the intricate landscape of life with a chronic health condition, and together, we share insights, laughter, and a reminder that authentic connections and understanding can profoundly influence this journey.

Examining the crucial themes of connection and communication within the context of chronic illness, we also shine a light on Melissa’s experiences with Ménière's disease and how she's adapting to progressive hearing loss, as well as my experiences with multiple sclerosis and personal identity. Throughout our conversation, we emphasize the importance of genuine support networks, and share amusing anecdotes that illustrate both the humor and hurdles encountered along our respective health journeys. As you will hear, our dialogue showcases how language, resilience, and accompaniment can make a powerful difference when navigating life with chronic health conditions. 

Episode Highlights:

• Melissa's Ménière's disease diagnosis and her journey with progressive health challenges

• The vital importance of being heard, both literally and emotionally, in our relationships

• Navigating the complexities of identity and self-awareness amidst health challenges

• Coping with the uncertainties surrounding future health outcomes

• The value of compassion and empathy when facing adversity

• Amusing miscommunication anecdotes highlighting communication hurdles

• The transformative power of non-verbal communication and meaningful connection

Quotes:

"I knew this hearing loss was going to happen, and that's why I've been taking steps to stay in communication, to stay in connection, no matter what."

"It's not forever, even though my current self doesn't believe that."

"When living a life with any kind of chronic health challenges, communication feels so important to find other human beings who you feel heard by."

"I think those are two spins on the concept of being heard. One is literal and the other is more of an emotional feeling of being known and witnessed."

“I was like, ‘I need to find my people.’"

"The power of language in shaping self-perception and self-esteem is truly remarkable."

"True connections are formed based on emotional resonance."

"Don't give up because there's probably someone feeling the exact same way somewhere."

“Everybody deserves to have people they can text and say, “Guess what just happened?” Or have a deep conversation with, or just sit with and not have to talk and just be around each other - whatever it is that you desire. I think you get to choose your people.”

Links:

This Is Not What I Ordered

Lauren Selfridge

Melissa Platt

Joining me on the podcast today is our very special guest, Shideh Etaat, an Iranian-American writer. Shideh holds an MFA in creative writing from San Francisco State University and has recently unveiled her debut literary masterpiece, Rana Joon and the One and Only Now. Today, Shideh shares an emotionally resonant narrative, recounting the day of her police officer husband's traumatic brain injury and the following six years since. 

Brace yourself for an impactful exploration of the "grief portal," a term Shideh uses to illustrate her voyage through abrupt trauma, a journey that reconnects her with spiritual insights, acceptance, and grace. In the face of seemingly insurmountable challenges, Shideh demonstrates remarkable determination, ushering healing and transformation into her own life and the lives of those around her. The episode unfolds as an intriguing tapestry of themes, including steadfast devotion, the profound impact of grief, and the remarkable strength that arises from profound challenge. Join us as Shideh unveils her extraordinary odyssey through grief and beyond, a journey that will undoubtedly leave you equal parts moved and inspired to embrace your own capacity for growth and renewal.

Episode Highlights:

• Shideh's childhood experiences, early awareness, and anxiety

• Intergenerational trauma from her family's escape during the Iranian revolution

• The challenges Shideh encountered in parenthood and healing her inner child

• Her husband's traumatic brain injury, and the resulting shock, fear, and resilience

• Shideh's shift to a deeper spiritual perspective on her husband's condition

• Mobilizing positivity and hope amid medical uncertainty

• Protective denial during pregnancy, focusing on her husband's potential

• Themes of devotion, grief, resilience, and finding meaning in adversity.

Quotes:

"I think for me at least, a lot of parenting is about healing my inner child stuff by doing things differently with my son."

"I was experiencing the situation on two levels: which was what I was seeing with my eye and what the doctors were telling me… And then I could see underneath that to the spiritual, soul-level journey of this person who I love deeply. And I felt very strongly like I was playing a role in that.

"There's always some goodness you can hold on to and try and focus on."

"The idea of comparing our journeys to those around us is so detrimental to our well-being."

"Owning your own experience as uniquely yours–that's a beautiful definition of liberation."

"I am holding life and death together. I am constantly holding opposing things inside of my body and my heart."

Links:

This Is Not What I Ordered

Lauren Selfridge

Shideh Etaat

Today on "This Is Not What I Ordered," we're excited to share a special feed drop from the podcast, "Untold Stories, Life with a Severe Autoimmune Condition", where Host Martine Hackett has real, eye-opening conversations with people living with rare, autoimmune conditions ranging from MG and CIDP to Pemphigus. This is their December 27th, 2023 episode: Prioritizing Care: Confronting Postpartum with MG 

Nicole is an epidemiologist whose life took an unexpected turn with an MG diagnosis between pregnancies. She had to prioritize how she cared for herself through postpartum depression, while also adapting to parenthood with MG. Nicole discusses how her background in public health provided a foundational understanding of the condition. But ultimately by leaning on her family and caring specialists, she learned to reapproach her life with MG. Through her thoughtful insights, Nicole shares a deeper appreciation for resilience and adaptability through unforeseen health challenges.

Subscribe today on Apple, Spotify, iHeart or wherever you get your podcasts!

My guest this week is Michelle Irving, who combines training with personal experience to offer mentorship and coaching around career and chronic illness. A gifted teacher, and a globally in-demand speaker and writer, Michelle is driven by a mission to de-shame and transform conversations around illness. Drawing upon her extensive training in somatic therapy, cancer survivorship, and women's leadership, her life's work and living legacy are dedicated to helping individuals foster positive self-relationships amidst illness, aiming for lives filled with love, meaningful work, and empowerment.

Together, we explore the complexities of chronic illness and the importance of reframing our relationships with ourselves. We also discuss maintaining hope and connection during life's uncertainties, and Michelle shares her four stages of coping with the unknown. Throughout this thought-provoking episode, we’ll explore acceptance, emotional stages of navigating illness, self-compassion, and resilience. Michelle's wisdom, storytelling, and vulnerability make this episode a must-listen.

Episode Highlights:

• Embracing uncertainty on the way to empowerment

• Fostering self-connection during challenges

• Navigating grief and resilience in life transitions

• Developing self-trust step by step

• Prioritizing curiosity over problem-solving

• Cultivating self-trust with a “future-self” perspective

• Sustaining hope and connection in life's unpredictability

• Seeing chronic illness as a journey

• Practicing self-compassion

• Understanding emotional stages

• Balancing career with self-care

Quotes:

"And the one or the couple of things we lose connection to is hope because it feels dangerous. And we lose connection to our longings because it's like, “Okay, what you want has to go in a box, and you can't even open that box until you're well.”"

"I'm nervous about traveling… there's little parts of me that are like, “But we really liked our couch.” And there's other parts of me. It's like, “Yeah, but we get to go to Rome.”"

"Can I have compassion for myself that I can't have compassion for myself? Yes, I can do that because both things get to be true at once."

"No matter where you are, it's never the end of the story."

"Acceptance is the opposite of rejection. And if part of what we're doing is rejecting some element of reality, then the most loving response is essentially what you're saying is to create some acceptance of that rejection."

"I think my purpose is to not abandon myself and be as connected to myself as possible, so that every moment, even if I don't know who I am in terms of identity, I know that I can trust my heart, and what my heart feels is the next right thing for me."

"I need to know that I can have Thursdays to lie in bed regardless, and I need to know where to get help."

"We only work with people we love. That's it. If we don't love you, and I don't mean that in a codependent way, but if this isn't a fit, it's not a fit. We don't struggle then to try and work out how to do it because it has to have some ease in the process and some delight."

Links:

This Is Not What I Ordered

Lauren Selfridge

Michelle Irving

Today I'm joined by Alison Tedford Seaweed: a Canadian consultant, author and mother who lives with hypermobile ehlers-danlos syndrome, chronic idiopathic urticaria and ADHD. Alison wrote a book called "Chronic Profit" about running a business while managing chronic pain and finds new ways to cope every day.

In today's conversation, we discuss new, creative, and hilariously uplifting ways to rethink our relationships with our bodies amidst chronic illness, disordered eating, and a productivity-focused culture, as well as Alison's definition of Indigenous inclusion and her identity as a Kwakiutl First Nation member from a family of ʼNakwaxdaʼxw ancestry. There is so much depth and laughter in our conversation and I hope you enjoy the many insights Alison shares.

Alison shares about her personal journey navigating chronic illness, and the complexities of dealing with body image issues. As our discussion unfolds, we reflect on life's purpose and the continuous journey of self-discovery, highlighting the profound importance of stillness and self-care in our fast-paced world. Alison also shares her unique journey of self-discovery, celebrating Indigenous culture, and the profound significance of reclaiming her last name, Seaweed. Join us for this very special episode where the themes of resilience and the concept of "enoughness" take center stage, and where you can always rest assured that your presence is, indeed, the most valuable gift of all.

Episode Highlights:

• The transformative power of connecting with nature

• Consulting work in helping businesses share their stories

• Navigating chronic illness and body image issues, emphasizing self-compassion and humor

• Cherishing stillness and self-care in a fast-paced world

• Alison’s journey of self-discovery and celebrating Indigenous culture.

• The importance of Indigenous inclusion and its benefits

• Alison on reclaiming her last name, Seaweed, and its significance

Quotes:

"I do a lot of work with different companies and helping them share their stories, often as they relate to their connection to Indigenous people... imagining ways to be more inclusive.”

"I went from being super happy with my body because it could do a lot of things to then feeling really frustrated with my body because it couldn't do all of the things."

"Indigenous inclusion isn't doing a favor to Indigenous people. It's a benefit to the people who are welcoming us to the table."

"In reconnecting with language, I'm getting to learn so much more about the values of my culture and my family."

"Fulfillment has been knowing that there's enough."

"When people are feeling like there isn't enough or that there's scarcity, it isn't an attitude problem. It can just be situational awareness."

"Your presence is a gift, and you don't have to do anything to earn the right to be here."

Links:

This Is Not What I Ordered

Lauren Selfridge

Alison Tedford Seaweed

In today’s special bonus episode, I delve into the topic of navigating the holidays with loved ones while dealing with chronic illness. The holiday season can be both joyous and challenging, especially when we want to connect with family and friends who may not fully understand our health challenges. In today’s episode, I discuss the importance of communication and setting clear expectations with loved ones, the power of sharing our health challenges openly, and the value of staying connected with others who understand what we're going through. 

I also share my own personal experience of living with multiple sclerosis for a decade, and offer valuable insights to help you create a meaningful and fulfilling holiday season, even in the midst of health challenges. Finally, you’ll hear about my upcoming holiday workbook, A Gentle Guide to Creating Joy and Connection for the Holidays While Living with Chronic Illness and Health Challenges,  which is designed to help you navigate the holiday season more effectively. So, let's dive into this episode and explore practical ways to make your holidays more enjoyable and inclusive.

For more valuable insights and guidance on navigating the holiday season with chronic illness, be sure to listen to the full episode. And if you're interested in exploring the holiday workbook mentioned in the episode, visit www.thisisnotwhatiordered.com 

Episode Highlights

• The importance of asking loved ones for what you need during the holiday season

• The value of sharing your health challenges openly and authentically with family and friends

• Tips on managing expectations and helping your loved ones understand your unique situation

• Strategies for staying connected with friends and loved ones who also have health challenges

• The significance of simply being present and not feeling pressured to be at your best during the holidays

• A gentle holiday preparation workbook designed to help you navigate the season with ease

Quotes

"I think if I had really been told that I could share and actually have that be a positive thing, it really would have changed my experience of showing up with a body that has its own plans and feel less alone."

"When we can share more openly about what's going on for us, I think it invites people into our world and it invites them to be in the messiness with us and helps us feel like we've got companions."

"The people who love you just want to be around you. So keep that in mind, even if you've got people who care about you and maybe they don't quite understand how to show up for you, or maybe they're feeling their own emotions."

"Just being in the room with you is significant. You may have a ton of symptoms. You may have a bad mood sometimes. You might not feel like your full self. You might just be dealing with not feeling up for quite the social interaction that you used to or that you wish you could be up for. Just know that that's okay."

Links:

This Is Not What I Ordered

Lauren Selfridge

This week, I’m joined by returning guest, April Snow. She’s a psychotherapist and author of The Empowered Highly Sensitive Person's Journal and The Mindfulness Workbook for Stress Relief. Specializing in working with highly sensitive people (HSPs), April’s compelling experience in this vocation has greatly enhanced her profound understanding of what it means to live authentically.

Together, we explore the world of HSPs, discussing how being highly sensitive intersects with other aspects of our identities, along with the necessity and complexity of pursuing justice as HSPs. We explore the themes of grief, self-acceptance, the unique strengths of HSPs, and the beauty and challenges of embracing our sensitivity. You’re invited to share in these personal stories that touch upon the depth and richness of life that comes with being highly sensitive.

Episode Highlights:

• The nature of high sensitivity and its impact on our lives

• The ongoing process of embracing one's unique traits as an HSP and finding relief in self-acceptance

• Positive effects of deep emotional experiences and empathy in the lives of HSPs

• Emotional challenges that often accompany high sensitivity and how we cope with them

• Finding resonance and wonder in life's subtle details

• Cultural misunderstandings about sensitivity

• Celebrating the gift of being highly sensitive

• The significance of modeling self-acceptance for personal and professional growth

• How high sensitivity intersects with various identities and the challenges and strengths that arise from these intersections

• What our roles are as deeply feeling activists Quotes:

"When you're highly sensitive, you process information more deeply, feel everything more intensely, and take in subtleties in your environment more than most people."

"It's really important to self-calibrate and find other HSPs. Don't look outside for how to set up your life based on people who don't experience the world as you do."

"Discovering that I'm highly sensitive and having empathy for myself, letting it be okay to be different, is maybe the greatest work."

"Seeing someone fully embody excitement and exuberance, which only HSPs can feel so deeply, is really healing."

"I see what is possible. A lot of the parts of my experience that are the most important to me are because I'm highly sensitive."

"HSPs possess a unique kind of exuberance, appreciating and savoring the beauty of the present moment."

"HSPs often aren't taken as seriously when we notice those little details or we have different experiences when we're interacting with healthcare providers."

“We do have a purpose here. We have this trait for a reason.”

Links:

This Is Not What I Ordered

Lauren Selfridge

April Snow

Learn more about the Exquisite Journey group for women with chronic illness at www.thisisnotwhatiordered.com