Dysautonomia Awareness Series: Life Can Be Messy and Beautiful
Blog written by: Dan Davis
Since I was a toddler, I always had a ball in my hands. If you knew me in my formative years, you also knew that trend continued into competitive sports. I was blessed to excel at every sport I tried, but basketball became my passion. The only problem was that this body couldn’t keep up with my determination and dedication to the game.
For over 20 years I’ve known this body was different from most. Susceptible to injury, pain, and discomfort. For all of these years I fought through the pain without any concrete answers. I confused every doctor. My vital signs were always on point and they could never find the cause of the pain, symptoms, or injuries. They always chalked it up to my active lifestyle and participation in competitive sports. Injury after injury resulted in a season pass to physical therapy, regular scans at the hospital, strange symptoms, episodes, and injuries, surgeries, and months of rehabilitation.
Under my thick skin was a relentless will to compete at everything I did. But, there was also a sense of anger that accompanied my pain and search for meaning. Though no one saw this side of me besides my mother and eventually my spouse, it was present every time there was a setback. And these setbacks happened often. They forced me to adapt my life and miss out on things I’d worked so hard for. At first they were big setbacks, and then I could no longer participate in many normal activities. The setbacks became more frequent and more devastating.
Even though I usually had a way to turn my pain into something positive and I had a never quit attitude, the physical setbacks became impossible to overcome on my own. I had grown accustomed to ignoring the symptoms and pain for so long that I never thought I would get answers.
Four years ago when my health rapidly declined, I was forced again to start my quest for a diagnosis. The symptoms became even more serious, random, unexplainable, and confusing. Stroke like episodes, numbness, tingling, blood clots, consistent dislocations, trouble sleeping, trouble eating, digestion issues, extreme fatigue, inability to stand, headaches, abdominal pain, fevers, chills, excessive weight loss, and extreme aches and pains all over my body. Every doctor had their own way of saying, “You look healthy.” And my response would be the same, “I feel like I’m slowly dying.”
It wasn’t until two and a half years ago, I found my very first glimpse of hope that maybe someone could figure me out. One of my closest friends, Kim White, was nearing the end of her life as she battled cancer. Even during her immense suffering, she was attentive towards my declining health.
On my last visit with her in the hospital before she passed, she got very serious, asked me to pull up a chair right in front of her, and said these six words I will never forget: “I’m going to figure you out.”
You see, I was filming Kim’s documentary at the time. I started a company called Stiry 5 years ago that was designed to help people discover their own story through inspirational films. I had directed over 150 stories at the time, but Kim’ story was different. What happened next confirmed why I had been inspired to tell her story.
Within just a few months of her passing, I interviewed her interventional radiologist for the film. We had a 10 minute break during our film session and I jokingly said to this doctor, “I’m kind of a medical mystery, you should try to figure me out.” And that she did. She asked me to list my symptoms and within a couple minutes she said, “Have you heard of Dysautonomia, Nutcracker Syndrome, MALS, or May Thurner Syndrome? I’d be willing to bet you have these syndromes.” After several weeks she got me into a specialist and within a few months after that I had been diagnosed with every syndrome this radiologist suggested.
Now, without a doubt, I knew why I was inspired to tell Kim’s story. Kim led me to the answers I’d been seeking for over 20 years. Her promise would lead me to a medical team that finally understood me. A team that made me feel whole again. Like my health mattered. And also made me realize there could be a path of healing even if I have to deal with this the rest of my life.
Even though she was gone, Kim figured me out. She followed through on her promise.
I won’t pretend that these diagnoses have solved all of my problems. Or that I’ve been healed just because I have a name for my daily battle. You all know that’s not how it works. It’s still an uphill climb. However, having a diagnosis made me realize I am not alone. I have found an army of fellow warriors who battle every single day with me. I would never wish these syndromes on anyone else, but I would also never be willing to give up the relationships and army I’ve gained as a result.
This fight is unique. Most people don’t understand it. Most people never will. Those that are in the trenches with me fight every day just to see tomorrow. You understand. I feel blessed every day that I can take a shower or have a meal or go lay on the couch at work instead of being stuck in bed. I know there are some of you that don’t get to do that. I know your pain. There’s some days I’m right there with you. But just know, every day I am able to get up, I think about you. I do that for you. And every day you get up when I can’t, I know you do that for me. That’s what’s special about the bond we have through dysautonomia and other related syndromes and diseases. I believe our bodies and spirits naturally connect with one another because of the path we both walk. For that, I am grateful to be a part of this complicated and messed up club. Hopefully one day it’s a club full of answers, healing, and direction and not just symptom management. But today, it’s a club I’m super proud of. Some of the most unique and special people I’ve met in this life are a part of this club. You are my people for life. Let’s keep battling together, my friends.
You can see the inspirational films Dan has directed with his team all over the world at stiry.com/our-work, youtube.com/stiry or follow @stiry on Instagram and Facebook. If you have your own story you'd like to tell, go to stiry.com.