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?
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).
On the way out, in the waiting room filled with patients, he said, “Maybe you should consider DBS.” “DBS” in this case stood for “deep brain stimulation.” I said innocently, “Is that invasive?” He replied, “Yes, it is brain surgery wherein they drill into your brain while you are awake.” Great, doc! He said it like he was offering me a lollipop as I was paying my $35 co-pay.
Liz and I headed straight for an Italian restaurant. We ate spaghetti and meatballs, split a bottle of Chardonnay, and did not discuss the appointment. We laughed a lot and chatted up the very sweet waitress who did not mind that I was reclining in our red booth.
Other appointments were had. None impressive. None worth writing about. All worth exposing. I created a system for how to vet the many doctors I met: I studied their shoes and their watches. Their cars, if possible. Black Gucci loafers + chunky Rolex + Boxster = not good. When a very expensive doctor is touching me, I do not take kindly to having his cold Rolex brush across my back. In the interest of full disclosure, I only wear sneakers and a Timex.
It wasn’t until I finally told my parents about my condition that we finally made some real progress. They, of course, were dismayed, but they were also very proactive. They got a referral from a specialist at UT Southwestern who suggested I see Dr. Mark Lew at USC Medical Center. I called his office and was told he was not taking new patients. So I tracked down his e-mail address online and begged him to see me in the most eloquent letter I have ever written. I got a call the next day and had a two-hour appointment with him the next week. The two-hour detail is worth noting. That is a long time for a busy specialist.
I gave him my history and described my journey that had led me to him. Dr. Lew confirmed that, yes, I had been injected in the wrong side of my body. But I had to move on. Dr. Lew could not treat me with Botox for three months—otherwise, one builds up antibodies and the treatment does not work. That meant three more months of pain due to an incompetent doctor. I went on some medications that were helpful, but Botox is key in healing, so it was a significant blow to my quest for wellness. Also, he was the first specialist to bring up getting me some pain relief with medication. Why did the many other doctors (aside from my general practitioner, Dr. Sourpik Avakian) not think that I needed help managing the pain?
For many months, self-medication was my only avenue for relief. I have expressed this before on a widely viewed television program, and it is common in the dystonia community: Chardonnay, Merlot, whatever it takes to feel like you are not at war with your body. No letters about this, please, from dystoniacs who do not want to be honest about how many of us use alcohol to have a break from the struggle.
It was Dr. Lew who finally made the dystonia diagnosis. It’s a chronic neurological disorder in which the mechanism that makes muscles relax doesn’t function properly. There are many types of dystonia. The NPR host Diane Rehm, for instance, has spasmodic dysphonia, also known as laryngeal dystonia. My variety is called spasmodic torticollis. As described earlier, it causes the twisting and tilting of the neck and torso. I felt as if my ribs were separating from tendons and muscles. I could not get into a comfortable position, and since it is a movement disorder, I was always moving and always in indescribable pain. Sorry, this part of the story is not humorous at all.
But after getting an actual diagnosis from a capable and well-respected doctor (who wore sensible shoes and no gaudy wristwatch), a funny thing happened. I felt happiness. I would even go as far as to say I was giddy. I felt a release. Everything in my life that was unimportant (but at one time felt important) fell away. It was instant. I felt elated. It was like, “Oh, hey, my glasses are foggy. I think I will wipe them off so I can see better.” So I wiped them off, and I could see everything clearly. I could see life and my priorities from a perspective that I’d never had.
By the way, I do not wear glasses. Hopefully that does not ruin the image for you. I do wear sunglasses all the time, though, so maybe that counts. You get my point.
Anyway, I knew I would win. This was not based in fact or on my prognosis, but there was no other option for me.
I had so many thoughts in my little noggin and knew that I had to organize them to be able to make a difference. One morning, I was lying in bed and an interview on The Today Show came on about dystonia. For treatment options, the story said there was really only one: surgery. That was my call to arms.
I had never thought of writing a blog, but a friend suggested it. So on New Year’s Day this year, I began to write about my struggles and life in general. It might sound odd, but for someone who represents writers, I’d done very little writing myself, at least not since school. Now I realize I was depriving myself of a very cathartic practice. I wrote and wrote and wrote, and then people started to read and read. Turns out some of those people were the sort who make decisions about who appears on television shows.
Six weeks after starting my blog, I was on the phone with a client when my other line beeped. The caller ID read “Harpo Productions.” I clicked over and was asked if I would like to be on the show. I responded, “Actually, I am on the other line with a client. May I call you back in a bit?” Not sure the producer was used to that, but, hey, a girl’s gotta work, right? Eventually, I called them back and was booked for a show in March.
Since dystonia and Parkinson’s are related, I was on a show with Michael J. Fox. We had one of the best hugs in the history of hugging. We related on so many levels. Oprah was a true pleasure. She was warm, interested, and such a sweet hand-holder, petter, and hugger. That’s really all I can say about that, owing to the insane non-disclosure agreement I had to sign. But you can find the video of my appearance online.
Then, after being exclusive to the Oprah kingdom, I was able to work with The Today Show and was very interested in having Meredith Vieira interview me since she deals with chronic illness in her family. My sister Kate, Liz, and I were off to New York. Live television. Yikes. But once again, I felt peaceful.
That brings us full circle, back to the green room. I hope Jean Chatsky has recovered.
Since those two shows, I have received almost 25,000 e-mails and have responded to almost all of them. I cannot ignore an e-mail that has the subject heading: HELP, I AM DESPERATE.
I responded to an e-mail like that recently and called the writer immediately. He went into detail about how he was going to end his life that night. He was going to start his car in the garage, place a hose in the tailpipe, insert it into one of the windows, roll up the windows, and lie back and wait for his pain to go away. I said, “Please don’t do that. You are stronger than that. You can get through tonight. Take it day by day.” He seemed to hear me, and I started asking him about his favorite television shows and movies. We chatted for quite some time, and his mood changed. He had never spoken to anyone else who had dystonia, so I think he finally felt less alone. We are friends now and talk a few times a week. We mostly laugh and we discuss his pain—no talk of ending his life since that night. We spoke yesterday, and he was, dare I say, chipper.
That’s been the good side of the media exposure, being in a position to help people. But there’s a downside, too. I’ve now been called a spokeswoman for dystonia. There are some people who have suffered far longer than I have, and it has been upsetting to them that I came out of nowhere. I can’t quite describe what it’s like to get nasty e-mails from other dystoniacs who are—what?—jealous that my dystonia is cooler than theirs? Here I am just wanting to get the message out, to educate the public about this disorder and to let other dystonia sufferers know that invasive surgery is not the only option. Too, there are people out there with dystonia—potentially millions—who don’t even know they have it. They haven’t been diagnosed, or, worse, they’ve been misdiagnosed. They’re desperate, sometimes suicidal. And for trying to help them, I get hate mail. Maybe I will get into therapy to help me with that. Sounds like a good idea. Mental note: call therapist in the morning.
For now, I will take my medications as prescribed, I will eat when I can, I will look forward to many shots of Botox, and I will do better with my physical therapy.
Oh, and the Chardonnay. Which, now that I think about it, is a lot cheaper than a therapist.
Or write to [email protected].