Nicole – Buffalo, NY

Nicole – Buffalo, NY

I was the picture of perfect health. As a full time 19-year-old college student at the University of Buffalo, part-time ice cream scooper extraordinaire at Anderson’s Frozen Custard, and a die-hard distance runner, I loved life and lived it to the fullest. I had a dream of landing a career in law enforcement. I really wanted to help people, and I couldn’t imagine myself doing anything else with my life.

I learned overnight that dreams don’t always come true. Not even for hard-working, healthy, athletic college students.

Some dates are impossible to forget. For me, that date is March 2, 2003. My foot hurt when I woke up that morning — and not because I’d run 10 miles and worked a 7 hour shift on my feet the night before. I mean, something was not right at all. It was this strange cramp that I couldn’t quite explain.

Within a few months of my foot cramping up, my entire body was squirming in discomfort and pain. I started having trouble swallowing. Tremor overtook my body and I couldn’t walk upright. Doctors either said nothing was wrong with me or that they’d never seen anything like me before. None of this was comforting in the least.

I ended up being one of the lucky ones. Only misdiagnosed a couple of times — with MS and then Lupus. Eleven months after the “strange foot cramp”, I was diagnosed with idiopathic torsion dystonia. Yes! An answer! With medications and Botox injections, I was able to run again; however, dystonia would rob me of any chance at my dream career. My condition would become more and more debilitating. It was nothing short of miraculous that I graduated from college and landed a job. No, you can’t drive a cubicle or catch bad guys with a keyboard… but I digress.

In late 2008, I was wheeled into an OR. I opted to have my whole head shaved for Deep Brain Stimulation. It’s not the societal norm for girls to elect to go bald, and here I was being given the option! The brain part was tough. Apparently it took my neurological team a little longer than anticipated because I have an incredibly thick skull, but anyone who knew me could have warned my neurosurgeon about that.

Deep Brain Stimulation saved my life. A few months after the procedure, my boyfriend proposed to me. We married in 2010. The painful truth is that I’m not cured; not even close. Recently, I’ve had to stop running, but I’m trying to keep my chin up.

I’ve become involved with youth ministry at my church and enjoy arts and crafts. I’m a die-hard Buffalo Sabres fan. I’m easily amused, love classic television, movies and love music – especially oldies groups like The Beatles, classic rock like Led Zeppelin and alternative artists like Ben Folds.

I’ve recently started taking yoga classes and enjoy watching my husband practice Brazilian jiu-jitsu. It’s incredible to see what the human body is capable of doing through practicing martial arts… but what I really hope for is the freedom to move… to move without brain stimulators, medications or Botox. We need to fight for better treatments and hopefully, one day, a cure.