Toby, around ten years ago, for a periodYou can't get a disease from watching a TV show, right? I mean, the causes of MS aren't known, but I'm sure you can't get it from watching a TV show. Still, it was during the first season of The West Wing, in March of 2000, when I had my first symptom. My left leg was numb. Just a little bit. Like when it goes to sleep, but only about 25% of the way there. Maybe partly because of TWW, I immediately had a gut feeling that I had MS. I saw a doctor, who referred me to a neurologist, who said I had a pinched nerve. I went back to the original doctor who didn't really like that diagnosis, but was willing to live with it for the time being.
of a few months, I was feeling run down
and I had a pain in my leg. They both
eventually subsided, but then eight years
ago, the pain came back, as well as numbness.
My vision would be blurry sometimes and I'd
get dizzy. During an eye exam, the doctor
detected abnormal pupil responses and ordered
an MRI. The radiologist found plaque on my
brain and spine. I have a relapsing-remitting
course of MS.
I'm sorry, sir?
I have Multiple Sclerosis, Toby.
"If anything like this happens again," he told me, "don't ignore it. Go see someone."
The numbness subsided after a few weeks. It came back for a little while maybe a year and a half or two years later. I didn't see a doctor because I was scared he would confirm my fears; I knew MS was bad and I didn't know what you could do about it, even though I saw President Bartlet taking injections. The third episode I would mostly ignore came at the beginning of my third semester in grad school; my arm was numb this time. I went to the health center. They referred me to an orthopedist, who might have figured out what was going on if I'd ever gone to see one. I met EG my last semester in grad school, graduated and got a job that summer as a puppeteer. Yes, really.
Being a puppeteer was surprisingly lucrative, but physically grueling. The setup and take down were a bitch for someone my size and I sometimes had to do as many as 17 shows a week. Other times, my schedule would require me to drive hundreds of miles. On the Monday after the sixth Harry Potter book came out, I was feeling kinda run down. I only had one show that day, but it was 325 miles away. I drove down, did it and loaded up the car. On my way home, I felt feverish and stopped at a convenience store to get some aspirin. I chalked it up to working hard and playing hard and went to bed early.
I woke early the next morning to do my shows. Trying to stand up, I noticed that I was very dizzy and still feverish. I also noticed that there were dark spots in my vision. No way could I drive. I called my boss to tell him. (He came to my house and picked up the puppets - the show must go on!) I remember that I spoke to EG several times that day. I remember that I couldn't read my brand new, much anticipated Harry Potter book because of the spots in my vision. I had no interest in food. All I had that day was a glass of orange juice. I didn't have much of an appetite, but the bigger problem was that I lacked the energy to assemble a meal of any sort.
I had given EG my keys the previous month and thank God for that. After work, he came over, scooped me off my floor, took me to his place and fed me soup. We were both pretty scared. The next day I saw an internist who referred me to an opthoneurologist. They did some tests and asked me some questions. Because I'd kinda known for the past five years what was going on, it was a relatively simple matter for me to relate the history of my symptoms. A few days later, I met my neurologist for the first time. He ordered some tests to make sure, but he didn't have much doubt about his diagnosis. It took several months to get the tests due to insurance issues, but when all was said and done the doctor confirmed what I had been afraid of all along: I have MS. (EG came with me and held my hand. I don't want to think about what it would have been like to get through this without him.)
I started taking injections(every other day) three years ago this January. The major side effect of the shots is "flu like symptoms", but they subsided after a few months. I also got some very unflattering bruises, but they too are rare nowadays. The injections themselves aren't too bad. The needle is very thin and I can actually numb the area with an ice pack before I inject. [EG bought me an ice pack with Strawberry Shortcake on it.:)] I'm holding up pretty well, though there are things that are quite different. I used to be a really fast walker; now there are people in their sixties I have to ask to slow down because I can't keep up. (EG actually prefers my current pace.) I did a show in December 2006 where I was supposed to have a tap solo. I was fine at the auditions in June, but I had an episode that September that's left me with a weak right hip flexor. I couldn't tap anymore and that bit went to someone else. These days I can't dance at all, really. I can't run either, but I miss dancing a lot more.
I've been feeling pretty good for the last year or so. Getting me darlin' man back is part of it, but I also started eating more fruits and vegetables and exercising. In June, they opened a gym with a pool in my neighborhood and it's a Godsend. My two biggest workout hazards are getting overheated and falling down, neither of which are a problem in the pool. I also take water aerobics and Pilates classes. I had a couple of months of physical therapy last year, where I learned exercises to help me with my balance and strenghthening my hip flexor to the extent that that's possible. I still walk like a drunk sometimes, but other times it's hardly noticeable. I'm just happy I can walk. Every time I see someone in a wheelchair or with a cane or walking braces, I say a prayer of thanks for my mobility.
Twenty years ago, MS treatments were almost nonexistent. These days I have several options, though they're all injectables. They're working on several types of pills, at least one of which promises to be more effective than the shots. There are all kinds of research being done. It is my fervent hope that there will be a cure for MS within my lifetime. Someday, maybe I'll even tap again.
For now, what I have in mind is a three mile walk. (EG will walk with me so I can hold his arm; we're not at all sure I can walk that far by myself.) Walk MS DC is on April 25. This will be my second year doing it. I'm so damn happy that I can still walk that I plan to do this every year I'm able. Hoping very much that there will never come a year when I'm not.
Walk MS is a fundraiser for the National MS Society. The Society uses the funds it raises to fund research as well as services for people with MS. I raised a little over $500 last year, but I started pretty late. I registered a little earlier this year and I'm aiming to break $1,000. If any of you are so inclined, you can make a contribution by clicking the link below. If you'd rather pay by check, please email me and I'll send you my address. No gift is too small (or large.) Thanks very much, guys. I really appreciate it.
Click here to contribute.