May 2020
Good days, bad days. We all have them. But how do humans living with chronic illness make this distinction when our moments are often mash-ups of joy and pain, insight and suffering?
It's human nature to judge our experiences. When something hurts, we call it "bad." When something brings us pleasure we want more. When we feel relief, we say "good riddance." We long to be untethered to the discomforts of flesh. But when relief is out of reach, how do we learn to navigate the world with pain in one hand and gratitude in another?
We're not separating the good from the bad because it's all part of living Unfixed. There is a term in the disability and chronic illness communities called "toxic positivity." And while most of us agree that positive thinking is an essential part of our wellness, we also agree that if we ignore the hard stuff, or only talk about our members when they feel inspired, we are sending the wrong message.
To be Unfixed is to be liberated from expectations of how a life should be lived and how a body should feel. Instead of judging our experiences as good or bad, we are learning to allow them to into a more inclusive definition of what it means to be alive. Ultimately at the end of every day, we want to feel that love outweighed the pain but we're not always successful. And that's ok.
This month we created an audio-visual dreamscape that illustrates the full spectrum of our days. Our members recorded footage of their own experiences and are becoming quite the stellar filmmakers! Our clever and resourceful editor Mia Allen mixed in a little of her own introspective b-roll and I pulled out a few shots from pre-COVID Unfixed location shoots and we are quite happy with how it all came together!
CLICK THE VIDEO BELOW TO WATCH OUR MEMBERS NAVIGATE THEIR EVER-CHANGING CONTINUUM OF GOOD DAYS, BAD DAYS.
Member spotlight – Shayla VanTassel
I’m living but I don’t feel alive
These meds just feel like a lie
Patches on my broken parts
And tell me, is this really a life?
Pain getting worse, waiting here to die
Then I look into my daughter’s eyes
And I have to fight.
- lyrics from Shayla's song titled Better, written while at the hospital during one of the many life-threatening episodes that can accompany Chron's disease
Shayla is a young musician, artist, mother and wife living with the daily challenges of Chron's Disease. Anxiety and depression are a normal part of her condition so she uses these emotions as fuel for her creativity.
Shayla is a passionate singer songwriter as well as a gifted visual artist. Art and music have become an outlet to help Shayla through the daily challenges of living with Chron's Disease. This incurable autoimmune condition attacks the lining of the digestive tract and can sometimes cause life-threatening complications.
These traumatic events are not unfamiliar to our talented Unfixed member Shayla. The unpredictable nature of her condition combined with heavy medications have affected every aspect of her physical, mental and emotional well-being. Yet she often reflects that the disease is fostering an inner strength, resilience and creativity she may not have known so intimately without it.
Shayla draws inspiration from the pain she endures and instead of candy-coating her experience, she brings her listeners and viewers into the heart of her struggles. Her ink drawings often depict a little girl in a red dress going on demon-slaying adventures, her black tentacled adversary looking not dissimilar from the tangled ribbons of an anguished digestive tract.
Her creations are an arresting collision of innocence and struggle, darkness and tenderness - an illustration of someone striving to be curious about and embrace the full spectrum of emotions that are at the core of living Unfixed.
Battles with her monster sometimes leave the little girl in the red dress feeling a little less than whole.
Unfixed - Unedited
Want to dive more deeply into the stories of the Unfixed? Our new channel on IGTV shares in-depth, unedited clips from our Unfixed members' monthly videos so you can experience the full range of human emotion that is at the heart of being Unfixed. Subscribe now and you'll get a weekly dose of raw and radiant truth.
Stay tuned
Next month we will learn about the people who have been important and helpful in our Unfixed journeys. We all have one or two (if we're lucky) who have brought some healing and kindness into our lives. We will learn what helps, what doesn't and hopefully even hear from a few family members or friends on what it's been like caring for someone they love.
Please forward this newsletter, visit our website to read previous months' newsletters, subscribe to our Youtube and new IGTV channel, follow us on Twitter and spread the word about our project. Are you an Executive Producer who wants to help us achieve our funding and distribution goals? Click the email icon below and introduce yourself!
With much gratitude for your attentive and encouraging hearts,
Kimberly Warner
director/producer