It's perhaps ironic that the song Just Like a Pill by P!nk was one of my favorite songs to run to during the winter of 2002/2003. The upbeat tempo combined with the lyrics were just so awesome to run to. I'm sure P!nk didn't intend for this to be a "running song", but for me, every time Just Like a Pill came on the radio that winter, I felt this rush of adrenaline and got this endorphin high that helped me push through my workouts despite below freezing conditions. My running got better and better. I set a few 5k personal records that winter. I reached two of my three goals for the Lockport Y-10 in February 2003 -- clinching my age group and finishing in the top 10 for all the women in Buffalo's toughest 10 mile race.
A month later, everything started to change. My foot cramped up, my neck went into spasm, and my body started to tremor. As I traveled from doctor to doctor, I realized no one knew what they were doing. Just Like a Pill took on a whole new meaning, and it wasn't positive or upbeat. No one was making me better. Doctors were pushing pain medications that didn't work. A neurologist put me on steroids and Betaseron for my "multiple sclerosis". I got so sick from the treatments, and I felt like no one cared.
No one was making me feel better... everyone just kept making me ill... I wasn't crazy; I just had dystonia. I was finally properly diagnosed in December 2004. But to this day, no one knows what dystonia is. It's "m!ssundaztood".
Now, nearly 11 years later, I am still "m!ssundaztood". I can't explain what's going on with my brain and my body and the brightest medical minds can only theorize and speculate each individual case as no two people with dystonia are alike.
Coincidentally, there is literally a pill that makes me ill. Unfortunately, it is one of the only pills that helps my dystonia. Klonopin slows down brain chemical activity. Some side effects of Klonopin are sedation, dizziness, weakness, unsteadiness, depression, loss of orientation, headache, and sleep disturbances. I have been on klonpoin for nearly 10 years and experience all of these symptoms along with grogginess and anger. Here's a YouTube clip regarding Stevie Nicks' dependency on Klonopin, prescribed by her doctor. She describes it as "more deadly than coke".
I'm not myself while on Klonopin. I think I function about 60% cognitively in comparison to where I was when I was 20 years old. I get so sleepy and lack creativity. I'm "m!ssundaztood" by so many regardless of whether it's the dystonia, the drugs or a combination of both.
A couple of years ago I attended a New Years' party with a bunch of people from Checkers AC. Most of them were my parents age or older. I had trouble making it to midnight. As the crowd dispersed for the evening, a number of people asked me, "Hey, are you coming to our 'resolution run' tomorrow morning?" I laughed -- were they kidding? I was beat -- weren't they? Looking back, they were serious. I was in bed the entire next morning. A lot of those folks got a few hours of sleep after a night of drinking and partying, and then went out running the next morning. I was only 28 years old. Runners in their 70's at the party didn't get me... I'm finally understanding that they can't. Dystonia and the drugs like Klonopin rob you of the person who you are.
For the past three years, I've attended the Niagara University President's Ball with my husband and his department. My husband facilitates everything for the people in attendance at our table. It's his job. The ball is held at the Seneca Niagara Casino and is a really great event. I always try to be on my "A-Game", but by the time the dinner and speeches are over, I'm ready to call it a night. I need to head to the hotel room and sleep. The folks at our table understandably want to make the most of the evening by having a few more drinks while heading to the casino. This includes the director of the department, who is in his late 50's and has MS. What do they think when the account manager's wife isn't feeling well? Nate and I retreat to our hotel room. Nate receives text messages from concerned colleagues, "I hope Nicole feels better." It's like I put a damper on the evening every year. I hate what I do to people... but at the same time it's not my fault.
The anxiety depression that dystonia and perhaps klonopin cause is the most difficult thing to deal with. I know there's an intelligent, energetic person inside me, but that person has been dormant for years now. I wish that person would come back to be the person who isn't so difficult to understand... the person who isn't "m!ssundaztood". Eight years ago I ran into an old high school classmate who did not recognize me at all. After jogging his memory a bit, he said, "I remember you! You were a runner; I remember you were really vibrant." Yes... vibrant... that was me a long time ago now. What I would give to have that version of myself back.
