June 2020
"My mommy is the sun, the water and the air to a blooming flower - and I am the blooming flower."
– William (Unfixed Community member)
This month we turned the cameras away from our own stories to talk about the people who are influencing and nurturing us in our Unfixed lives. We purposefully left the question open-ended. Care and kindness come in many forms. Globally we are seeing acts of care and compassion through peaceful protest and activism to address the history of racism and inequity in our systems. In our communities, citizens are wearing masks - not to protect themselves, but the most vulnerable. In our personal lives, we care for our loved ones through kindness, presence and a commitment to showing up and listening, even when things get tough.
Doctors, friends, spouses, siblings, parents, children, acupuncturists, medical aids - for people with chronic illness, the list of our caregiving heroes is long and diverse. But whether they wear a stethoscope around their necks or a wedding band on their ring finger, these people all have something in common - they show up and they show they care. One doesn't have to be an expert in chronic disease to be "the sun, the water and the air" to our own becoming.
As we all search our hearts for ways to bring more kindness and care into our communities and each other, let's listen to our Unfixed members and their heroes share their own hard-earned wisdom.
CLICK THE VIDEO BELOW FOR A DOSE OF LOVE AND RESTORED FAITH IN HUMANITY.
Member spotlight – Dylan Shanahan
If we are always looking out the front window in the car of our lives towards the longings we hope the future will fulfill, we tend to miss the opportunity to appreciate what we already have. Through this process of ALS I have been stripped of innumerable aspects of my previous life. I'm down to the most basic of pleasures and elements of gratitude; breathing, my communication device, and my friends and family with whom I can share my love of life. - Dylan
Between his intensive Aikido studies in Japan, goofing around with friends, surfing through Baja and leading high-school students into immersive summer camps, Dylan loved being in his body and playing with life. But just as he wouldn't want to deprive himself of the experiences of his former life, he doesn't condemn his journey with ALS now.
In pursuit of his lifelong quest to understand the nature of reality, Dylan began his studies in physics and math at Lewis and Clark College. He played football while on an academic scholarship. Following 9-11, he became unsure of his next steps and set off hitchhiking with a German surfer-turned-best-friend - traveling south down the Baja Peninsula until they set up on a perfect surfing beach north of Cabo San Lucas. What was discussed to be a week surfing trip turned into a five-month adventure. It was on that beach in Mexico that Dylan decided he would devote his life to the healing arts.
His future career and the means to achieve it - pursuing dual doctorate degrees in Naturopathic and Classical Chinese Medicine at NUMN - were laid out clearly before him. As he took the necessary preparatory steps to qualify, Dylan randomly came across a book on the Japanese martial art Aikido. Dylan was immediately hooked. He moved to Japan and through a series of serendipitous encounters became a live-in, full-time aikido student, sleeping on dojo mats at his teacher's house. Originally, he thought he would delay applying to the naturopathic university NUMN a year or two, but it turned out to be an almost five-year sabbatical that eventually qualified him to instruct under the lineage of his teacher.
Dylan returned home to begin his medical studies in 2012 and open his own Aikido dojo. He was gratified to be applying himself to a career path that was aligned with his desire to make a lasting impact in the lives of future patients. For five years, Dylan was highly active in his studies, in student government and as student representative to the board of directors.
In the winter of 2017, his fifth of the six-year programs, his father was diagnosed with end-stage lung cancer. NUNM worked with him to add a year to his program so that he could assist his father. That spring his first symptoms began. Initially it was shoulder stiffness, then gradually his right hand weakened until he couldn't use his dominate hand for anything. Dylan entered into the marathon phase of adaptations to work with what he had.
Dylan was officially diagnosed with ALS in April of 2018. He continued at NUNM with wonderful support and accommodations for his rapidly changing body. The next fall quarter he was in a wheelchair and eventually came to school in medical transports to avoid transfers. He was two quarters from graduation. His breath capacity became so low that his voice was barely audible making clinic unfeasible. Withdrawing from NUNM was one of the hardest decisions of his life. A few months later one of his professors petitioned the board of directors on his behalf and they voted to award Dylan honorary doctorate degrees for Naturopathic and Chinese medicine in June 2019. He was overwhelmed with gratitude for this unprecedented honor. He gave a speech at commencement through his communication device and was able to “walk” with his classmates.
Just two quarters from graduation, Dylan had to withdraw from his studies because of the growing complications of ALS. Months later, Dylan was awarded two honorary doctorate degrees for Naturopathic and Chinese Medicine.
Dylan has always believed that as one door closes, two open. Immobile now, he has his eyes and his eye-controlled tablet where he can write his unique experiences through the rare disease process of ALS. He is an explorer of the human spirit. It is a different kind of adventure, but he maintains the same openness and appreciation for the invisible guiding hand through his journey. Just as he wouldn’t want to deny himself the previous experiences of his life, he doesn't condemn this new adventure with ALS.
Dylan is currently writing his memoir and running his non-profit organization Life Breath that serves to help reverse climate change through reforestation.
Dylan celebrated his 40th birthday last December with friends and colleagues at a Portland brew-pub. Feeding tubes and eye-tracking communication devices don't stop Dylan from sucking the most out of life.
We're finally on Facebook!
After too many months of hearing "Why aren't you on Facebook?" we decided to put our social media wariness (and weariness) aside and go for it. So now you can follow our Unfixed journey from an entire smorgasbord of platforms. Hop on over to Facebook and say hello!
You can also navigate to our recent conversations with Dani Shapiro on her timely podcast The Way We Live Now and the wonderfully informative Invisible InCourage Show created by our partner Invisible Disabilities Association. Director/creator Kimberly and the hosts explore not just what can go wrong in a human body (or on the planet) but the love that is possible when things do go wrong. And from what we're learning from our Unfixed Community, that possibility is limitless.
Stay tuned
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With much gratitude for your attentive and encouraging hearts,
Kimberly Warner
director/producer