I remember a different me.
I remember this incredibly active agent, manager, and producer in the film and television business. I remember effortlessly walking my dogs, Lincoln and Wesley, while they sniffed everything imaginable. I remember playing softball and tennis. I remember shopping up a storm.
In April of 2007 I woke up with a crick in my neck. It didn’t seem like a big deal, I was just feeling not quite right. I assigned stress as the culprit and expected it to dissipate after a day or two. It did not. The crick lingered like an unwanted houseguest and began to affect my torso, as well. Before I knew it I was tilting to the right at a ninety-degree angle.
After months of struggling with difficulty standing up straight and walking, and a lifelong fear of doctors, I finally sought treatment. It was a long road that I could have never foreseen. No one knew what was wrong with me.
Following a litany of indescribable cognitive tests and blood work, I found a specialist who was able to pinpoint my condition. I was diagnosed with Dystonia.
Dystonia is the disorder version of Parkinson’s. I did not view it as a life sentence; I viewed it as a takeaway—an opportunity. An opportunity to grow and help others.
I learned quickly that millions of people have Dystonia, but were not diagnosed. This came after appearing on Oprah with Michael J. Fox, and then the Today Show with Meredith Vieira, whose husband also has Dystonia. Mike Fox has Dystonia, too, but his platform is Parkinson’s.
It was then that I realized that I had become The Dystonia Girl, the poster-child for something I knew nothing about mere months prior. Fortunately, my sense of humor was still intact, so I thanked God I was not also donning an eye-patch and hook for a hand.
I immediately founded the non-profit organization: BEAT DYSTONIA. Only to discover that some of the non-profit world was often corrupt, vicious, and often for profit. I refused to go that route.
My goals were to support others, refer them to specialists, and raise money for research through the National Institute of Health. I did not want that money going toward trips overseas, or extravagant events that often just offset the costs of what could go to scientists in the labs. I wanted to be on the ground floor of beating Dystonia. This did not go over well with many. But I did not care.
Physically, I fought my way from walker to wheelchair to cane to no cane.
Mentally, I fought my way from the comfortable realm of who I once was, to the terrifying uncertainty of what I was to be. Adding to the three-ring circus that was my life, was the overwhelming press that had ensued following the Oprah and The Today Show appearances—hello, huge new hat collection accompanied by large sunglasses.
In the midst of all of this, my partner ended our relationship abruptly. I was devastated, but picked myself up again.
I had no choice but to view life—literally and figuratively—from a whole new angle. And I aimed to get through a meal in public without people approaching me to inevitably tear up. I was not tearing up. I was eating my sushi and enjoying a glass of Merlot.
In spite of all of this, I managed to remain positive. I knew I could beat this “incurable” brain disorder that afflicts so many worldwide. The outpouring of those who wanted my story, advice, or other attentions was unbelievable. I could not keep up, but somehow I did. From talking people out of suicide to simply listening and relating to others’ pain, helping them to feel heard in a healing, often humorous way.
I began to compile a list of outstanding movement disorder specialists from all over the world. To my amazement, I got many of them on the phone and explained to them what I was doing, and expressed my impression that far more people have Dystonia than is recognized by the US government. I became the go-to gal for referrals and advice about how to forge your own path to wellness. I feel strongly that you should work WITH your doctor making them your teammate. Ask questions. Express your truth. Take notes. Take a friend, friends, or family members.
In my own life, I was still championing the daily battle of wellness. This took commitment. Physical therapy was grueling—beneficial—but grueling. Yoga and meditation also helped physically, as well as helped to maintain an overall positive attitude.
I realized that I had begun to laugh more than I ever have in my life. If I hit my head, I laughed, and the pain dissipated much faster than if I were to take to my quarters and sulk. I left the pain behind. I took my lumps and moved on.
I had to be in touch with reality. I had Dystonia and there is no cure (yet). So, there it was. The way I decided to see it was,
YOU CAN’T ARGUE WITH RAINDROPS, so what is the point?
Dystonia was a part of my life, but I would not let it define me. I deeply refused to curl up into a ball and cry about it. And trust me, it is painful, but if I focused on the pain I would be headed down the wrong path. I had witnessed so many people who were headed down that path, and I did all I could to point out the road less traveled. I encouraged people to find the humor in the ridiculous situations that many “Dysto-friends” were experiencing. So, you fell getting off the escalator—let people help you get up, and laugh your ass off while doing it.
At one point, I fell into the bushes outside of my local pharmacy. It was in the dark of night and no one could hear me calling for help. Without hesitation, I started laughing and just lay there in the shrubs. At the time, I did not know I had broken my leg and I walked around on it for two full weeks. My leg looked like something from a monster movie, but my pain threshold was so high that it never occurred to me that I had a major broken bone. Finally, I had my millionth X-ray and was in a boot for months. I didn’t care—I thought it looked rather Star Wars-inspired and, most importantly, it fit with my naughtily large collection of jeans.
Every day has its challenges as I learn to adapt and redefine myself. I continue on my original track and do my very best to help others who need a turnaround in attitude, and it seems to work. I have stayed in touch with everyone, and have met many of the people I have helped, and will continue to help, from around the world. Because the healing goes both ways. When they feel better—I feel better. That is the great side effect of helping others.
Oh, and like everything else in life, my broken leg healed. And ever since, unlike most actual meteorologists, I can tell you when it is actually going to rain.
They should call me.
Rogers Hartmann is a longtime literary manager, and now producer, writer, and activist. She has appeared on OPRAH with Michael J. Fox, THE TODAY SHOW with Meredith Vieira, TED, and countless other network programs. She speaks to kids and adults alike across around the world about her journey to wellness while battling Dystonia.