Spooning with Spoonies Noa Porten

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/

People are not mind readers... today’s episode explores communication between partners throughout the chronic illness journey and is full of tips on ways to reconnect when your normal shifts.
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: https://otter.ai/u/Jy-FKS10mCwlwLX9NGDmxkNBriA
Links:
Spooning with Spoonies IG: https://www.instagram.com/spooningwithspooniespod/
Rare IG: https://www.instagram.com/findyourrare/
Shop Rare: www.findyourrare.com
Because We Are Strong Podcast: www.bwspod.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