November 2020
"I’ve survived and flourished in the COVID times because of peanut butter. I’ve rediscovered peanut butter as so nurturing and sensual and every morning I’ve learned that I need to ask someone to feed me exquisitely slowly, so slowly it’s painful for other people, but that’s the way I really love to enjoy my food, really slowly. So I take a spoonful of my crunchy peanut butter, then I take a sip of hot, bitter coffee, and I just let the peanut butter melt in the roof of my mouth. It's so weird, a very personal ritual and I love it. It feeds me so much. The texture, the thickness, the sight. Everything about it is a total, sensual experience." - Unfixed member Elizabeth Jameson
Let's talk about food.
Food and chronic conditions, that is. And I know what you might be thinking. This is going to be yet another episode about nutrition - an anti-inflammatory, rolled in chia seed, kale manifesto. And yes, it's crucial to address the role nutrition plays in our well-being. It is one thing we can somewhat control amidst the unpredictability of our symptoms.
For the Unfixed, food is also community. Food is comfort. Food is ritual, meditation, communication and joy. But it can also be isolation and pain - a plastic bag of nutrients administered through a feeding tube or a burrito that sends us to the ER. For some, a trip to the grocery store requires a nap in the parking lot before safely driving home. For others, restaurants with bright lights and noisy crowds can be nightmarish. And of course, we can't talk about food without addressing our culture's obsession with it. Our dysfunctional ideals of beauty. Our food dogma. Our privilege. In this month's video submissions, we heard it all.
The Unfixed members dug deeply to courageously share their experiences and evolving relationships to food. Many of you have already entered into a pared-down and to some, diminished version of the holidays. Covid is stripping us all of our usual comforts - in many ways, it's like the entire planetary population is experiencing a chronic illness right now. So I invite you to open your senses to all that flourishes and nourishes you amidst this relentless chaos. It still exists. We may have to mine a little more deeply or more quietly or more earnestly. But if there's anything I've learned in these past ten months with the Unfixed Community, it's that this two-headed monster of adversity is intrinsic to our vitality. One head spits fire. The other, sings. The agony can't be severed from the ecstasy. So let's break bread together and find ways to honor and celebrate this paradox of our existence. Starting with food.
(And then tune in to the Unfixed podcast on December 15th for a deeper conversation on sustenance between award-winning author Elissa Altman and Unfixed member Elizabeth Jameson!)
So without further ado, we present this month's video - FOOD: THE AGONY & ECSTASY.
Bon appetit!
A few highlights
I sit at the table for Thanksgiving and Christmas dinner, but I don't participate in the meal. The conversation tends to change topics quickly and I type relatively slow. By the time I finish typing my comment, I'm two or three topics behind the conversation. If I am not there for the food or conversation, what am I there for? I am a presence. I am present with the people I love, that is enough. My formula, although not glamorous in plastic packaging, sustains my presence. I choose to focus on what my food enables me in the fulfillment of my purpose, and not the dopamine that my burgers and fries used to provide me. That is saying a lot when you consider how good the food scene is in Portland Oregon. - Dylan, ALS
I don’t do drugs. I don’t do alcohol. I don’t do women. I don’t do men. I don’t do barnyard livestock. But I do love food. That’s the only pleasure I have left in life. - Brian, Traumatic Brain Injury
Lifestyle choices like what you eat are things you can control maybe one of the only things you can control. Although I have no proof of this, I do believe that my eating habits are one of things that has had some measure of positive impact on this whole game. Janet - Multiple Sclerosis
A lot of times when you’re chronically ill and you’re losing weight, you get positive reinforcement because of the western ideals of beauty. On the inside you just want to scream at somebody because the reason you are losing weight is because you’re nauseous, or because you can’t hold food down, or because you’re too sick to get out of bed. That’s one thing that can make cultivating a healthy relationship with food, especially as a person with chronic illness, really really difficult. - Brianna, Ehlers Danlos Syndrome
I live in Boulder, CO and Boulder is one of the most orthorexic communities in my opinion, anywhere. People really care about what they put in their bodies here and people are really dogmatic about it. What I find frustrating is this dogma around being super healthy and then shaming ourselves for not eating just the right thing to maximize our health. - Jeneye, Transverse Myelitis
With narcolepsy there are times when an attack occurs and you go into auto-mode basically, where your brain is asleep but your body is still moving. I’ve actually had that with eating before where I’ve been so exhausted at the end of the day and I finally get food in front of me and start eating and my brain shuts off and my body keeps eating. - Bethany, Narcolepsy and Cataplexy
To chew hurts. If it’s gonna hurt do you think I want to waste that pain on salad? I’m going to pick something I’m going to enjoy eating if I’m going to be in pain. I had to stop thinking like that. I had to embrace broccoli. Rene - Trigeminal Neuralgia
Despite the pain that food causes me, after my operations, after eating... well... drinking and slurping soup and milkshake and watered down fruit juices for a period of years, I was really able to start enjoying food again. Food turned into more of a mindfulness practice for me. It was more of a therapy than just getting just eating food. I fell back in love with it again. - Stefanie, Facial Pain Disorders
Big News!
If you haven't already heard, Unfixed is now a podcast!
We’ve teamed up with Beyond My Battle to bring you a unique new show. The Unfixed podcast will share stories of two people creatively contending with adversity. One is someone living with a chronic health condition. The other is a professional on the topic or facing their own unique battle.
It is an invitation to lean into curiosity and compassion while recognizing our shared humanness. This is not a show of people with illness talking to each other. It is a universal dialog and testament to the challenges we all face and how we can live powerful lives despite (and sometimes because of) them. WHO’S EXCITED???
Episode 1 airs tomorrow so click the big button and subscribe! We will be sharing episodes every two weeks for six months. To read more about the exciting show lineup visit Unfixed or Beyond My Battle. Below are our first two episodes airing this December.
Episode 1
A few months ago, Martel interviewed me for the Beyond My Battle Podcast and it was clear after our conversation that we had only just begun our work together. Fast forward a few months of passion and cross-country collaboration, and here we are with episode 1 of the relaunched show, now bearing it's new name, The Unfixed Podcast. In this episode I'll share more about my journey living with the rare, neurological condition called Mal de Débarquement Syndrome. But mostly, we'll talk about why I needed to find others in the world who were learning to thrive with their incurable conditions and make a film about them. Future episodes of the podcast will take on a bit different shape than this introductory episode. While Martel remains host, she will relinquish her role as interviewer and guests will converse with one another on the topics at hand. So without further ado, welcome to the Unfixed Podcast! - Airs December 1st, 2020
Episode 2
Webster dictionary defines sustenance as a “something that gives support, endurance, strength.” In this episode, award-winning author and speaker Elissa Altman joins writer, speaker and disability advocate Elizabeth Jameson as they discuss the role of sustenance in their own lives. It is safe to say, this bedrock of support has been stripped from both of them in unique ways throughout their lives. Elizabeth, through the disease progression of MS that has her now living as a quadriplegic. And Elissa, through a contentious and traumatic relationship with her mother's mental illness. Together, they both reflect on what it takes to transform lack into abundance and bitterness into generosity of spirit. - Airs December 15th, 2020
Wishing you a very peaceful and restorative holiday season. Thank you all for riding the storms of life with us.
Kimberly Warner
director/producer