How the Disease Dystonia Bent My Body But Not My Spirit
Last summer, my body went to war with itself, contorting uncontrollably and for reasons that were a mystery. It was the best thing that ever happened to me.
LEAN TO THE RIGHT: At its worst, Rogers’ dystonia caused her neck and back to twist so severely that her head touched her shoulder, and she had to look at the world sideways.photography by Barbara Green
There I was, sitting in a small, unadorned room, staring at a crudités platter. Three Midwestern ladies who had been plucked from the outdoor crowd for the Ambush Makeover sat across from me. I could have been in any city. I was in New York.
Oh, hey, Matt Lauer. A warm hello back. Jean Chatsky! I asked her, “What do you do if you don’t have a stock portfolio?!” A polite and slightly alarmed smile sent my way as she grabbed some crackers and left the room. Natalie Morales popped in for a banana.
Then it was off to hair and makeup. First, I do not want anyone styling my hair, especially when the word “ringlets” is involved. And makeup. I don’t wear it.
The woman to my right asked me why I was there. I told her, “Oh, ya know, disease of the week crap.” I, in return, asked why she was there. And she very politely said, “Oh, well, um, I am Kathie Lee Gifford.” Then, of course, because this is how I am, I said, “I didn’t recognize you without your makeup on.”
She laughed and gave me a book about how to have better sex. Then we sat in polite silence as we had our hair and makeup done. No ringlets, no way. So I was pleased enough.
How did I, a girl from Dallas, get here, on The Today Show, minutes from being interviewed on live television by Meredith Vieira. What would she ask me? How would it go? Would people be waving through the window in the background? Might I have to hug Al Roker?
YA THINK SO, DOCTOR? That’s me waiting my for my first Botox injections from Dr. Mark Lew. A priest just walked by and said to a nurse, about me, “Well, he sure looks comfortable.” Meanwhile, I’m in intense pain—and, you know, not a boy.photography by Barbara Green
The short answer to how I got there: I got sick. A rare neurological disorder had physically and spiritually changed my life. Somehow I’d become the spokeswoman for a group of people from all over the world. A week earlier, in fact, I’d gone on Oprah with Michael J. Fox to talk about my disorder, called dystonia.
But there’s a longer answer, about how a sickness actually made me better. Or happier, anyway.
Two years earlier, i’d woken up with a stiff neck that wouldn’t go away. It mostly bothered me at night when going to sleep. I named it restless neck syndrome. No matter how many pillows, no matter how many sleeping positions, I could not get comfortable. And as you might imagine, that caused me anxiety. I had anxiety from my neck acting up, I had work anxiety, and I had relationship anxiety. All-around anxiety. Something did not feel right, but I assumed it would fade, as most things do.
On the work front, I did not like the company I had joined after working for myself for many years. I felt trapped. I blame no one but myself. I should have departed when things started to physically manifest. I confused being strong with being tough. Now I know the difference.
I am a manager and producer in film and television. I grew up in Dallas. I went to Hockaday and then to the University of Texas at Austin, where I studied radio, television, and film. When I graduated, I had my wisdom teeth removed and then packed up my Honda Accord and moved to Los Angeles. I landed a job with a high-end boutique literary agency and learned the business of representation from an interesting man named Geoffrey Sanford, who let me sign clients when I was only 20 years old. I am now 38.
So back to the neck. I took my sweet time getting to a doctor. I was happy to learn the other day that it would not have mattered if, at the time, I had rushed myself to the E.R. I always threaten to rush myself to the E.R., but no one thinks it is funny except for me.
One night, my girlfriend (read: partner) Elizabeth and I attended a friend’s birthday party at a favorite frozen yogurt hang, and as I walked up, I noticed the expressions on my buddies’ faces. I could tell that no one knew what to say, but someone piped up and said, “Um, Rog, you are so crooked. What is going on?”
I said, “Really? It’s that noticeable?”
Elizabeth and I saw me every day, so neither of us had noticed the progression, the tilting of my head and the twisting of my neck and torso. And in Elizabeth’s defense, I think she got tired of telling me to go see a doctor. We can call her Liz now since you have gotten to know her a little better.
I had a mortal fear of doctors, white coat syndrome. My blood pressure would skyrocket. But the stubborn me finally had to acknowledge how bad my physical deformities had become, and I began the journey of seeing a series of “highly respected” doctors in Los Angeles. Turns out, they were all inept. They had no idea what they were doing, or they had such a hideous bedside manner that I would leave shaking my head, even though I could not really shake my head.
So we are still at the part when my neck had gotten more than restless, and the pain was increasing. My head just kept tilting more and more to the right. I did not discuss it with friends or family. I could not look in the mirror, and for me that is a big deal. I have always been a bit of a mirror person.
In the summer of 2008, in a matter of weeks, my neck officially hit a 90-degree angle. I could not drive. I could barely let my dogs, Lincoln and Wesley, out in the backyard. Liz was traveling for an extended period for work, so I was on my own and had to rely on a grocery store delivery service to eat and drink. I didn’t want to ask for help or even tell people what was happening, because I didn’t want clients to know that I was working from bed. I feared that they would question whether I was able to do great work on their behalf. I did not want my friends to see me in such a weakened condition. And, finally, I did not want to worry my parents.
Soon Liz returned from far off lands to help in my search for a doctor. She and I went to see a highly regarded neurologist for my first Botox treatment. Botox is used as a nerve blocker. At this point, we still didn’t know what was causing my contortions, but the plan was to stop my muscles from twisting me in knots by silencing the signals being sent to those muscles. We asked the doctor many questions because his plan was to inject my neck on the left side when it was clear that the muscles on the right side were the ones that were misfiring. Liz is a physical therapist. She pressed him, and he insisted that the shots should go on the left side. He injected me with two vials of Botox (10 to 15 shots).