Spooning with Spoonies

What’s a chronic illness storyline you wish was shown more in the arts or on TV? The confident chronically ill teen who’s dating? The nurse who just happens to have a picc line and a chronic illness?

In this episode Noa chats with Ali Hardy, the co founder of Reckless Theatrics, a theatre collective made up of chronically ill artists with a mission of inclusion, intersectionality, and using art for social justice. Noa and Ali discuss Reckless Theatrics upcoming play “Fail Risk”, about a couple finding their way when one partner is sick, writing and portraying authentic chronically ill love stories, what it means to create an inclusive theatre space, and storylines they’d like to see more of in theatre and the media.

This episode wraps up season 1 of Spooning with Spoonies!!! Thank you so much for your support and for coming on this journey!

Quote: “I also want to see someone with a picc line. or a port, or a feeding tube or something like that, let's normalize it. Lets start showing this because there are people who really do have that stuff and are out running businesses and being parents and everything else. And I want to see those brought into the arts.” - Ali

Transcript: https://otter.ai/u/x5KHqIPia4hCZQfmpdW6hiIElhE

Links:

Spooning with Spoonies IG: https://www.instagram.com/spooningwithspooniespod/

Reckless Theatrics IG: https://www.instagram.com/recklessthtr/

Reckless Theatrics Website: http://recklesstheatrics.com/

What would parenthood with chronic illness look like?

For Melodie N. Blackwell, wife to a cancer fighter, mom of 2, serial entrepreneur, health advocate, & founder of Color of Crohn's and Chronic Illness Inc, parenthood with Crohn's disease looks like: playing action figures from bed, navigating pregnancy and miscarriage, including the kids in the conversation about chronic illness, teaching acceptance, disability pride and compassion through leading by example, and finding kid free, pain lowering ways to connect as a couple.

Throughout it all, Melodie emphasizes that being a parent is hard with or without chronic illness and chronically ill parents or people wanting to be parents are no lesser and no less equipped!

“If you really feel like you would like to be a parent. Don’t disqualify yourself. Just because you’re battling some challenges that might not present for others”- Melodie N. Blackwell

Episode Transcript: https://otter.ai/u/j5_39W7nn-I2jFg9Hq_MywlR4CM

Links:

Pod IG: @spooningwithspooniespod

Melodie’s IG: @melodienblackwell

COCCI IG: @colorofcci

COCCI:https://www.cocci.org/?fbclid=IwAR3BA42MscfqLrlY_QE4p-YikROFycBefwElPfWIstaEOafiBZ6gp9w2Zu4

Flex: Reinventing Work for A Smarter Happier Life by Annie Aurbach (mentioned at the beginning of the episode): https://www.barnesandnoble.com/w/flex-annie-auerbach/1137264351

“All you can do is ask for what you need , and if the response isn’t what you had hoped for, that’s fine too because you still get information from it”- Lauren Keller

In this episode Noa chats with Lauren Keller, a chronic illness and detox expert NP who was diagnosed with chronic neurological Lyme Disease and Mold Toxicity, among other chronic illnesses, around 8 years ago, and is now on a quest to help patients find their way to wellness in her clinic Two Purple Carrots. This episode was recorded a year ago and Noa asks Lauren some of the deep questions that made her want to start this podcast in the first place like how do you ask for what you need, can millennials meet anywhere other than dating apps, what do you do when you’re living with your partner and you find mold in your apartment!

Lauren shares her journey from heartbreak to love and most importantly, self acceptance through chronic illness. From getting diagnosed with Lyme disease whilst in a serious relationship, to healing from heartbreak, to entering a new serious relationship after an unexpected Tinder date, and then navigating mold and moving as a couple, Lauren emphasizes the most important lesson she learned was how to communicate and ask for what she needed.

*This episode was recorded in March of 2020

Transcript: https://otter.ai/u/qK2vj81FcPXiG_XHDcN8scJbw5U

Links:

Pod IG: @spooningwithspooniespod

Lauren’s Insta: @twopurplecarrots

Two Purple Carrot’s Website: http://www.twopurplecarrots.com/

“Being a man is just being comfortable in exactly who you are.” -Ijmal Haider

What does being a man really mean? Today Ijmal Haider, a man living with Ulcerative Colitis, wears his heart on his sleeve proving that there doesn't have to be a defined answer to this question. Every person gets to decide for themselves what or who they like, how deeply they connect and communicate with their partner and how much pain they outwardly display, even if this strays from traditional societal prescribed gender behaviors.

Ijmal an IBD + mental health blogger and advocate, and the founder and host of Hidden Spoons, shares how he has used vulnerability to break down toxic masculinity in his own life and in his relationships, making him able to communicate openly with his partner about his mental health and chronic illness. Ijmal and Noa chat about gender, sexuality, relationship roles, vulnerability, therapy, and of course a funny IBD dating story!

Episode Transcript: https://otter.ai/u/6-SitIi2k2x7XuY_JFi4EHZXCFA 

Links:

Pod IG: @spooningwithspooniespod

Ijmal IG: @raziblog

Hidden Spoons IG: @hidden.spoons

Listen to Hidden Spoons: https://open.spotify.com/show/3P0bwsPdwOc8c8BXLhnC5B?si=OfAe_JniTdeDDML6SxjrbA

The Mask you Live In: http://therepresentationproject.org/film/the-mask-you-live-in-film/

“That lightning the mood can be so so valuable when you’re dealing with this really heavy depressing life long incurable illness that you’re carrying around with you”- Caroline Rock

Laughter is the best medicine right? From explaining your pills and sporadic food allergies on dates, to navigating poop anxiety during intimate moments, to keeping the romance alive without “traditional” spontaneity, humor can be a great way to diffuse the tension of chronic illness especially when dating!

In this episode Noa Interviews Caroline Rock, a University of Texas School of Design grad working at Nokia software and living with Ulcerative Colitis and OCD, who is passionate about bringing awareness to chronic illness on her IG and Youtube Channel “Caroline Rock”. This episode is full of laughs as Caroline shares her experiences dating casually with a chronic illness, funny dating stories, and the joys and challenges of being in a committed relationship. 

*This episode was recorded in the summer of 2020

Transcript coming soon!

Links:

Pod IG: @spooningwithspooniespod

Caroline IG: @hi_caroline_rock

Caroline’s Youtube: https://www.youtube.com/channel/UCLf9A1hVelTDV8znv8JpRqg

“Relationships that involve caregiving, require a type of intimacy that a lot of relationships between able bodied people don’t ever have”-Jessi Smith 

You don’t often see relationships between disabled/chronically ill and able bodied people portrayed positively or even shown at all in the media. You don’t see the intimacy that comes with caregiving, the teamwork, the fun and silly moments, the strength of the bond between two people facing challenges together, and, what may surprise some, the normalcy!

 In today’s episode Jessi Smith a disabled, queer, non-binary, writer, activist, musician, composer, performer and the advocate behind @disablednotdefeated on IG, shares their love story with their husband Elliot. From the not so subtle way their husband asked them out, teaching Noa the art of picking someone up at a coffee shop, to saving spoons to create intentional moments during their wedding, to finding moments of joy together today, and to how Jessi and their partner Elliott see chronic illness and the subsequent challenges as growth opportunities for their relationship. 

Jessi chats with Noa about the fun and funny aspects of caregiving like leg shaving and chair transfers, what a typical date night looks like for them, and their attitude and approach towards intimacy with chronic illness. Most importantly, Jessi and Noa talk about the importance of being loved with, not despite chronic illness and shifting/fighting ableist mindsets and narratives telling chronically ill people that they are burdensome and are “lucky” to be in a relationship and be loved. 

**CW: This episode contains mention of sex trafficking and abuse** 

Transcript coming soon!

Links: 

-Pod IG: @spooningwithspooniespod 

-Jessi’s IG: @disablednotdefeated 

-John Gottman reference: https://armchairexpertpod.com/pods/john-gottman

You’re using your carefully allotted spoons to get ready for a first date. You survey your closet. Jeans or bloatproof joggers, which do you go for? In today’s episode, Keisha Greaves, a disability fashion designer, podcaster, motivational speaker, and founder of Girls Chronically Rock, an inspired, and soon to be adaptive, fashion line celebrating Muscular Dystrophy and other chronic illnesses, answers the hard hitting questions. How do your clothes affect how you feel on first dates? Why is adaptive fashion important? And what statements should your shirts be making other than advertising bands you’ve never heard of? Tune in to hear Keisha & Noa discuss GCR's black disabled lives matter line and the importance of intersectionality within the disability community. Listen as Keisha, who lives with Limb Girdle Muscular Dystrophy, shares how she has navigated dating with a progressive disease: from finding adaptive shirts that give her independence, to her feelings about having personal care attendants come to dates with her, to making asking for help on dates flirty. 

Transcript: https://otter.ai/u/3WEEqXoG-SrVzMnrE3tjpKBno3k 

Links: 

Pod IG: @spooningwithspooniespod 

Keisha’s IG: @girlschronically_rock 

Shop Girls Chronically Rock: https://girlschronicallyrock.com/collections 

Key Quotes from Keisha:  

“we just want to look fashionable and of course fabulous. But we just want to have certain functions on our clothing that make us get dressed easier and not make us feel like we just finished running the Boston marathon” 

“Take your time, feel them out, feel the energy”

What is self love really beyond the facemasks, and green smoothies? Nitika Chopra, a chronic illness advocate, podcaster, former TV show host, blogger, and founder of Chronicon, who lives with Psoriasis & Psoriatic Arthritis, has been on a lifelong journey to find out. After getting divorced, and exploring the NYC dating scene, Nitika decided to take some time off from dating to be intentionally single. Today Nitika shares with Noa how she’s embraced this time alone and how it’s furthered her personal growth and self love journey. Nitika and Noa delve into the root of feelings of otherness, codependency and chronic illness, sitting in the messiness, embracing loneliness and the shame associated with it, combatting the ex text hole, and having compassion for their inner child. *This episode was recorded in the summer of 2020* 

Transcript coming soon!

Links: 

SWS IG: @spooningwithspooniespod 

Nitika IG: @nitikachopra 

Chronicon IG: @chronicionofficial 

Sign up for Chronicon Community: https://chronicon.co/ 

Key Quotes “A lot of it wasnt that profound, when I was feeling frustrated about being single, it was messy.“-Nitika “The partners and the friends, the people that i love that are gonna be in my life, get to add to the work that i'm doing, get to add to the joy that i'm able to experience, but they don't have to be the entire source of it, i think that's where the real work starts.”-Nitika

Katya, a chronic illness travel blogger, sits down with Noa to share her experiences traveling the world, pre covid, with her partner while managing Ehlers Danlos Syndrome, Chronic Fatigue Syndrome, Fibromyalgia, Migraines and other various chronic illnesses. She describes her recent trip to Indonesia and Thailand from start to end, from planning the trips to accommodate her illnesses, to navigating finances with her partner, and asking for help with tasks that would flare her conditions.

Noa shares her struggle with allowing herself to take rest days while on vacation, and Katya explains how planning them purposely and changing her mindset around them has improved the quality of her trips immensely. Katya emphasizes that it's okay to spend time apart from your partner while traveling and shares the self care activities she does on a night in to combat fomo. Lastly, Katya and Noa connect on how mindfulness has positively changed their lives and Katya delves into ways it’s helped her cherish quality time with her partner while traveling.

*Note: This episode was recorded at the beginning of the pandemic and the travel experiences discussed took place before the pandemic. We do not encourage traveling during this time.

Transcript coming soon!

Links:

Pod IG: @spooningwithspooniespod

Katya's IG: @positivelychronictravels

Katya's website: https://www.positivelychronictravels.com/

Key Quotes:

1.“It’s really really important to make sure that you’ve both discussed being flexible before going away. And if you can’t go on an activity, they just go without you and that's fine”

2.“mindfulness helps you focus on where you are with that person and making sure you’re putting your all into being with them"