September 2020
"The moment that is the most powerful is the point of surrender - the point where you’ve been battling so hard to stop the feelings, to stop the pain, to stop the emotional barrage of stuff just hitting you constantly - and you just surrender to it. And in that moment you create yourself a little bubble where you can breathe a little bit and you just relax. Instead of trying to fight it off and instead of trying to understand or fix it, you just stop."
- Unfixed member Stefanie reflecting on her wise and essential lifeline this month
As autumn 2020 begins with record-breaking wildfires and apocalyptic smoke, gut-wrenching social divisiveness and a pandemic that continues to upend lives, communities and our sanity, there is something urgent and pertinent for everyone in this month's Lifelinevideo. We've all hit rock bottom at some point in our lives and perhaps more than ever, we're globally hitting the bottom all at the same time.
How do we survive when we're drowning? What brings us back to life when we feel like we've reached a point of no return?
Those living with chronic conditions have a lot of practice figuring out how to survive adversity. For most, it's not a one-time event but a daily exercise in opening to the opportunities within hardship and choosing life over and over again.
Some members reflected this month that surrender and acceptance are key to survival. Others turn to service and advocacy, the arts or stream their favorite stand-up comedy routines. Sometimes our inner-coach is strong enough to shift our thinking and other times we need to reach out to a loved one, a friend or even a supportive online community. And when all else fails, it's the abiding act of putting one foot in front of the other and trusting life that eventually brings us back to shore.
What are your lifelines?
WATCH OUR IMPORTANT VIDEO THIS MONTH AND ADD A FEW NEW LIFELINES TO YOUR SURVIVAL KIT.
New member spotlight – Elizabeth Jameson
"I feel incredibly powerful in my life despite my disease and limitations because my advocacy and my ability to be of service to others has been my lifeline. It’s been so critically important to me and I’m more ambitious than I’ve ever been. And I love my life."
- Elizabeth speaking about her lifeline in our most recent Unfixed video.
Elizabeth spoke at Stanford Medicine Ted-X in 2017 about her experiences as an artist living with Multiple Sclerosis. She used her own brain scans with the intention of celebrating and honoring what it means to live with an imperfect brain. Since then, her disease progression has made it impossible to use her hands as an artist, but Elizabeth is a force of resilience and adaptation. With each new challenge, she embraces change and has only grown more ambitious.
Elizabeth Jameson is an artist and writer who explores what it means to live in an imperfect body as part of the universal human experience. Before her diagnosis of multiple sclerosis, she served as a public interest lawyer representing incarcerated children; she later represented children living with chronic illnesses and disabilities in their attempts to receive medically necessary care.
As her disease progressed, she began using her MRI’s to create art as a way of reclaiming agency of her own medical data. She transformed the unsettling, clinical images into work that invites people to open up conversations about what it means to have an illness or disability. Her work is part of permanent collections both nationally and internationally, including the National Institutes of Health, major universities, and medical schools.
Coronal view of the Elizabeth's brain stem, cerebellum, and lateral ventricles. She calls this piece Valentine for its display of the heart-like structure that appears in the brain, in all its warmth and mystery.
- Solarplate etching on paper
In Celebration, the blood vessels in the brain are dancing and holding hands in joyous celebration. The image is another example of discovering romance and beauty in the brain.
- Solarplate etching on paper
She now writes personal essays and speaks across the country sharing her experiences living with illness and disability. Her essays have been published by The New York Times, British Medical Journal, WIRED magazine, and MIT’s Leonardo Journal. Her essay, “Losing Touch, Finding Intimacy,” was included in the New York Times book, About Us, released in September 2019 by Norton Publishing. In her most recent article in the New York Times, Elizabeth discusses the joy of food, the challenges of being unable to feed oneself and the never-ending lust for a bag of lime-flavored tortilla chips.
Many of her lectures at medical schools and symposiums have been recorded and shared, including her TedX talk, “Learning to Celebrate and Embrace Our Imperfect Bodies.”
Click the links below to view her recent talks:
Story of Impact - Stanford Medicine X 2017
Learning To Embrace and Celebrate Our Imperfect Bodies - Stanford TEDx 2017
We feel so fortunate to be on this Unfixed journey with Elizabeth. Her spirit is effervescent and overflowing with the beautifully complex truths of what it means to be human. Welcome aboard Elizabeth!
Now streaming on the Disorder Channel!
Unfixed is thrilled to now be streaming on the newly launched The Disorder Channel!
For patients with rare diseases and their families, life is sometimes isolating. It can be difficult to explain your condition. At the same time, it is incredibly important to find ways to amplify patient voices. Now, these stories – and other educational films – are available for streaming on “The Disorder Channel.” If you have Roku or Amazon Fire TV, you can now stream rare disease films straight to your home.
“The Disorder Channel” is the brainchild of Bo Bigelow and Daniel DeFabio, both fathers of children with rare diseases. This year, the Disorder: The Rare Disease Film Festival was postponed due to COVID-19. But DeFabio and Bigelow knew they needed to get these stories in front of viewers somehow... as a result, the channel was born. It features many previously unseen rare films and original videos. It also includes some films intended for this year’s festival, as well as favorites from prior years.
While millions are stuck at home, anxious about the future, and hungry for content, the Disorder channel provides stories of hope and inspiration.
Thank you for your kind, empathic attention and belief in this on-going journey. Wishing you all clear skies and peaceful hearts in the weeks ahead.
Kimberly Warner
director/producer