Spooning with Spoonies
By Noa Porten
Spooning with SpooniesApr 27, 2021
14. Writing & Portraying Chronically Ill Love Stories in Theatre | Ali Hardy
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/
13. Closing the Communication Gap with LCSW Kristine Hoestermann
Kristine Hoestermann is a Licensed Clinical Social Worker, and the CEO of RARE, a clothing brand raising awareness for rare diseases. Kristine, who lives with EDS , POTS, and Autoimmune Small Fiber Neuropathy Secondary to Unknown Connective Tissue Disease, first became ill towards the beginning of her relationship.
Kristine shares what it was like to come out at the same time as becoming ill, the communication workbook that brought her and her wife back together, the importance of making space for reflection before response, and her and her wife’s “bachelor style” intentional date nights!
Quote: “Both of our lives are now different. We're both different people. And it's not a matter of love or anything like that. It was a matter of us finding a way to communicate what we were trying to say” - Kristine. Episode Transcript: otter.ai/u/Jy-FKS10mCwlwLX9NGDmxkNBriA
Links:
Spooning with Spoonies IG: www.instagram.com/spooningwithspooniespod/
Rare IG: www.instagram.com/findyourrare/
Shop Rare: www.findyourrare.com
Because We Are Strong Podcast: www.bwspod.com
12. Pregnancy, Motherhood, & Marriage with IBD | Melodie N Blackwell
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
11. Asking for What you Need Amidst Mold & Lyme Disease | Lauren Keller
“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/
10. Redefining Masculinity in Relationships | Ijmal Haider
“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/
9. Helpful Humor for Dating w/ Chronic Illness | Caroline Rock
“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
8. The Intimacy of Caregiving Relationships | Jessi Smith
“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
7. First Date Fashion & Other Statements w/ Disability Fashion Designer | Keisha Greaves
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”
6. Dating Yourself & Discovering True Self Love | Nitika Chopra
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
5. Traveling with your Partner While Managing EDS & Co | Katya
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"
4. Moving in & Planning a Future Together w/ Chronic Illness | Jake Mayers
When COVID-19 hit, Jake Mayers, a musician and chronic illness coach, and his gf Jess' relationship accelerated fast when they moved in together to keep each other safe while staying together. In the 2nd part of this 2 part episode, Jake shares the joys and challenges of bringing someone onto your team with chronic illness. From finances, to treatment, to planning the future Jake emphasizes that they approach every situation as a team, what helps one of them helps both of them.
This teamwork was especially crucial for Jake and Jess when navigating intimacy with chronic illness. Noa and Jake grapple with the uncertainties surrounding protecting their health and their fears about sharing germs with a partner. Jake explains that like everything else, him and Jess handled the situation with open communication and teamwork.
Despite the difficulties of Lyme Disease Jake describes how him and Jess’s dedication to each other and building a life together has made them able to stay in the present and enjoy the ride, having fun and enjoying silly moments along the way.
*Disclaimer: The content in this episode is not intended to be medical advice in any way. The information shared are our own perspectives and experiences and should not be relied on as facts. If you’re having questions about these topics we suggest you reach out to your medical team.Links:
*Note: This episode was recorded in the spring of 2020 during lockdown
Transcript coming soon!
Pod IG: @spooningwithspooniespod
Jake’s coaching IG: @jakemayerscoaching
Jake’s IG: @jake_mayers
Key Quote:“Its an unconditional love, which in its definition means that. Regardless of the conditions of our health or really anything in our lives, we love each other for who we are”-Jake
3. Accepting Life w/ Lyme & Inviting your Hinge Match into it: w/ Jake Mayers
Join Noa as she chats with Lyme Disease coach, drummer & 10+ yr Lyme warrior Jake Mayers from Jake Mayers Coaching! Similar to Noa, Jake spent years pretending to be healthy so that he could still “achieve”, and convince himself and others that he was worthy and capable. But living a secret life full of after work IVs, running back to the car for allergy friendly snacks, or constantly thinking up new excuses to hide your illness, like canceling because your brother is having toe surgery, is exhausting.
In part 1 of this 2 part episode, Jake & Noa explore how being open and vulnerable, with a few laughs along the way, transformed their relationships. Jake shares how mindfulness, self acceptance, and radical honesty allowed him to get comfortable enough with his chronic illness & with communicating it to meet his now girlfriend & to build such a strong relationship so early on.
Tune in next episode to hear how Jake and Jess’s relationship has progressed since he asked her to be his girlfriend!
Note: this episode was recorded at the beginning of quarantine.
Transcript coming soon!
Links:
Pod IG: @spooningwithspooniespod
Jake’s coaching IG: @jakemayerscoaching
Jake’s IG: @jake_mayers
Key Quote:“because of how open and vulnerable we had already been and laying it out from the start hey this is what i'm dealing with, it strips away all of those surface level resume things that you were talking about that people view who you are as”-Jake Mayers
2. Embracing your Poops & Procedures as a Couple Even When your Community Doesn’t: with Tina Aswani Omprakash
Tina Aswani Omprakash is an award-winning patient expert, health advocate, and Public Health Masters student who has been living with Crohn's Disease for 14 years now. Tina works to create awareness for IBD as well as support affected women and minorities through her blog and advocacy platform, Own Your Crohn’s .
From the beginning of her relationship to her husband and throughout her marriage, Tina has navigated the cultural stigma around life and love with IBD. Throughout all the awkward holiday dinners, non chronic illness friendly wedding customs, and even community criticism of her husband’s choice to be with her while she was undergoing surgeries, Tina and her husband managed to grow even closer.
But the journey wasn't simple or without challenge. In today's episode, Tina shares with Noa how she adapted cultural wedding customs to accommodate her bowl disease, what communication strategies she used with her husband to overcome that external stigma while maintaining mutual respect for each other, how she became so open about Crohns with friends and family and even with nosy strangers at community gatherings, how she stayed connected and confident post surgery and more!
Links:
Pod IG: @spooningwithspooniespod
Tina’s IG: @ownyourcrohns
Tina’s blog: https://ownyourcrohns.com/
Squirmy and Grubs (interabled youtubers discussed in episode): https://www.youtube.com/channel/UCdomP1JqhnyBQGaBmfDl4KQ
Quote: “Here's the thing that I always tell myself and tell other people, and that goes back to the self talk again. We can only do so much when we are chronically ill. Sometimes its really important for us to ask for that help and take that help”-Tina
1. Telling Cute Strangers you're Chronically Ill: with Natalie Kelley
Natalie Kelley is the CEO and founder of Plenty and Well where she is a full-time chronic illness blogger, podcaster, and IBD mindset and lifestyle coach. Nat, who has been living and thriving with Ulcerative Colitis, is passionate about shifting mindsets around chronic illness, and helping people accept and embrace their new normal, all of which helped empower Nat to realize that chronic illness doesn't mean she’s any less deserving or capable of romantic connection!
In today's episode Nat and Noa sit down as 2 single ladies and spill all the tea on dating with chronic illness! They chat about dating in quarantine, how and when they talk about chronic illness on dates, packing a Marry Poppins bag for a date, letting go of control without the ever looming fear of flaring, and more!
Note: This episode was recorded during lockdown, but since there is still a pandemic, it all still feels relevant!
Transcript coming soon!
Links:
Pod IG: @spooningwithspooniespod
Nat's IG: @plentyandwellwithnat
Nat's Website: https://www.plentyandwell.com/
Key Quote: “Be confident and go in with a really strong foundation of self worth and self love and know you’re not responsible for how they react to you telling your story about chronic illness”- Nat
How Do I Date with Chronic Illness?
In this bonus pre launch mini episode, host and founder Noa shares a little about her chronic illness story, her journey with dating, and what happened when she googled "how to date with chronic illness" ! Stay tuned for the official Spooning with Spoonies launch next week on October 20th!!
IG: @spooningwithspooniespod
Transcript coming soon!
Trailer
Get a sneak peak of this season of Spooning with Spoonies! Launching 10.20.20! Follow along for updates @spooningwithspooniespod .
Transcript coming soon!