You see, exactly 10 years ago today - March 2nd, 2003 - I woke up with the strangest cramp in my right foot. I was just a few months shy of my 20th birthday, a distance runner, an ice cream server, an aspiring police officer and a college sophomore. I "stood tall" at 5 feet and weighed 112 lbs. Introverted, serious, and both physically and mentally strong, nothing would stop me from doing the things I wanted to accomplish in life. Ah, the joys of being young. But I still wonder... what if I knew what was truly going on that morning back in '03?
My right foot became useless...
The days turned into weeks. The weeks turned into months. I aced a summer school class. Clay Aiken won season two of American Idol. My foot itched inside of a cast... then it screamed uncontrollably to get out. I started to lose weight. I started having trouble handwriting. Then standing upright. Swallowing. Teary-eyed and scared, I hobbled from doctor to doctor. I changed primary care physicians. Specialist to specialist. What the hell was wrong with me?
In August 2003, I was inaccurately diagnosed with MS. I had to leave college for a semester. I saw my future, my dreams and my ambitions fall to pieces. Hadn't I put up with enough? My doctor was wrong. I had to go back to school per an agreement I had with the University at Buffalo that was based on an inaccurate diagnosis. I didn't have MS. I had dystonia and no practical means of treating it at that point. I couldn't think straight. I flunked a midterm. UB had been kind of a joke prior to all of this. I did my work, but it's not like I had to work very hard. High school had been tougher. I finished one class that semester, dropping the rest.
Dr. Thomas Guttuso. He basically saved me. After losing practically a year of school, he accurately diagnosed me with idiopathic torsion dystonia. A part of my brain was misfiring by telling my muscles to twist and contract for no apparent reason. After 13 months of pain and misery, I began taking two medications that worked like a charm. Baclofen and klonopin. Then a 3rd drug called Namenda. I started to receive botox injections. I had flare ups while under stress, but I went back to school having to work a bit harder. I finished one semester as a full-time student and did relatively well that semester in 2004. I went back to work scooping ice cream. I eventually finished undergrad as a part-time student. It took me 5 and a half years. I was ashamed of who I was and what I had become. How I had handled it. I had no idea who I was. At 23 years old I looked like a pre-teen, weighing about 90 lbs. I drank to ease the physical and emotional pain. I would have done anything legal to make the vicious contractions stop.
I landed my first job as a receptionist at a law firm less than a month after my degree was conferred. I was fired 3 weeks later. No compassion. No mercy. My hand-eye coordination sucked. I actually don't blame them for letting me go.
My second job was a temp position at UB. I assisted in planning the College of Arts and Sciences commencement ceremony. I loved it. It ended.
I received a phone call regarding an interview I'd had with a recruiter from the US Federal Government. I was offered a temporary position helping out a Federal Agency for the summer. I couldn't have been happier. Six years later, I'm still there. I received permanent tenure a year ago.
In between all of that:
- I reconnected with a young man in 2008. We'd gone to high school together.
- A sports writer named Amy Moritz did an amazing full page article featured in the Buffalo News about me. Apparently my distance running was pretty good. I guess I'd never really thought about it. All the more fascinating was that I had this rare disorder.
- I underwent Deep Brain Stimulation. The results were miraculous. I started to wean off of all of my medications and become the "old Nicole" I used to be.
- I got engaged to the aforementioned young man.
- I bought a condominium in Amherst.
- I got married.
- My symptoms returned. I went back on medications. I'm on some new drugs. I don't have much of a brain and have trouble organizing my thoughts. It's very difficult to concentrate.
- I became a coach with Girls on the Run. I worked with 5th - 8th grade girls for 3 seasons. I found a new passion in life - working with kids. They made me feel young again. I meticulously planned each lesson with pride. I had to give it up this season for a new goal - a marathon.
- I decided I would marathon train despite limited time, fatigue, and an arthritic knee with cartilage damage. I have yet to finish the 26.2 mile race.
This morning I woke up - March 2nd, 2013 - my husband and I went to Tim Horton's. I had a peanut crunch donut and a medium coffee, cream and sugar. Though I'd slept well the night before, the klonopin kicked in and I became groggy and irritable very quickly. I'd learned the President had ordered sequestration cuts. A man in his mid-30s in Florida was in bed one moment, and sucked into a sinkhole the next; presumed dead.
I ran for 45 minutes on the treadmill at Fitness 19, completing 5.42 miles. During my run, I thought about the roller coaster ride of life over the past ten years. Things I want to hold onto and memories I want to forget. Goals I still want to achieve. Tears filled my eyes as I felt stuck in a twisted situation, much like the symptoms of dystonia. Much of it actually due to dystonia. I came home and showered. I was so tired. Nate and I went to the Sabres game. I got a burger, fries and a cherry coke. The Sabres won in a shootout. Nate offered to take me out for dinner after the game, but I was just too tired by the end of the game. It was just another day in the twisted roller coaster ride of life.
Life is still good, but it could be better. I just need a little extra help, a little extra time, and a lot of sleep. I used to think sleep was overrated...
No comments:
Post a Comment