Saturday, November 25, 2006

My Story

I was diagnosed with MS in the summer of 2002, at the age of 44. My diagnosis was made after several neurological exams, a series of MRIs and a spinal tap. MS is often misdiagnosed or ignored in the early stages. This was the case with me. In 1991, I went numb up to my chest and the doctors couldn't find anything wrong. I was tired throughout the '90s but attributed it to my intense work and travel schedule. Then in 2002 all hell broke loose -- paralysis, loss of bladder control and weird cognitive disturbances like not being able to add and subtract.

Finally, I went
Aha! I bet I know what this is. I called the neurologist I had seen in 1991 and said doc, I think I have multiple sclerosis. How did I know? Because one of my cousins has it and sometime in the late '90s we got to talking about his case and I thought to myself, Uh-oh. And then I tried to put it out of my mind.

The neurologist didn't remember me. He has been such a nice guy in 1991 but he was a total jerk now. It was really shocking. There I am, sitting in his office scared out of my mind and he literally snaps his fingers and tells me to hurry up with the talking. I could have punched his lights out or started crying but instead I held it in because I knew I needed this guy. He did all the lab workups and lo and behold that's what I had. Then I found another neurologist who wasn't a total dick. Neurologists are some of the oddest ducks in all of medicine is all I can say. When I saw the second guy and told him about the first guy it was all I could do to keep from scraping him off the ceiling.

I said,
Doc, doc it's not about the other guy and what an asshole he is, it's about me. Finally he said yeah you're right. Now let's get you on Avonex, one of four drugs that have been approved to treat the disease. This involves giving myself a shot once a week with a needle that looks like it will go all the way to China.

MS is a funny disease. Not funny ha-ha but funny unusual. Think of a tornado that skips through a town. Every tornado worthy of the name takes out the trailer park, but from there you don't know what the hell will happen. Some of them get the church, one tavern and the school house, and others get the police station two gas stations and the stop sign at the corner of 3rd and Main.

The trailer park is usually stuff like optic neuritis (weird visual symptoms including deep eye pain that's really excruciating), walking disturbances, memory problems, heavy fatigue and numbness. Most MSers have those things to some degree. The memory stuff, by the way, is a newly recognized symptom. Used to be that it was all about the walking, but now they seem to know better.

Past those things, it can be anything. And why not when you really think about it. I mean, MS is when your body eats the covering ("myelin") off of your nerves. It's like cockroaches eating the insulation off the wires in your house. The same thing happens in each case: You get short circuits, and they're totally unpredictable.

One of my favorite short-circuits is with math. I suddenly couldn't figure out how much of a tip to leave at the restaurant. Okay, I know it's 15%-20% but the calculation is the issue. I used to be a financial analyst for crying out loud, but now I couldn't figure out 20% of $225? Come on, what gives? I still remember talking to a guy one day and telling him that 9 times 7 = eighty-something. As I sit here and write, I don't know what 9 times 7 is.

No great tragedy I guess, but it's a little weird when you're a financial analyst and your work depends on you knowing what 9 times 7 is. And it's a little humbling. Almost as humbling as discovering that you've voided your bladder all over yourself and didn't know it. Did you know that
The Wall Street Journal makes a suitable coverup when you're trying to get out of the office in your piss-stained suit?

So anyway, back in '02 when I got diagnosed I took a deep breath and said I can't work. Time to dust off the disability insurance policies and see what's inside. Turned out that I should be in the Guiness Book of World Records as the only American to ever have his insurance coverage substantially improved without his knowledge or consent. The coverage was excellent. All I needed to do was document the hell out of my case and file for benefits.

Since then, my partner Don and I moved from Boston to Seattle. We had been together since 1986 and for a while we had lived in Seattle until the firm I worked for sold to another company and I was tossed out of my job. This meant finding a different job and moving to Boston, but when we did that I managed to keep the house in Seattle and rent it out. We had always wanted to return here, but didn't think it would be so soon.

We got back to Seattle in late 2003, and soon Don's health took a drastic turn for the worse. On Sept. 22, 2004, he died of the combined effects of AIDS and chronic alcoholism. I have been on my own since then, but I'm hanging in there, full of piss and vinegar as always. I think my curmugeonhood is what keeps me going. I had one boss who told me that a different boss had been scared of me because he never knew what I'd say next. Yet a different boss said I was known for not suffering fools gladly.

All of those things are true but chronic illness and the death of one's longstanding partner, who I loved with all my heart, will soften even my roughest edges. Life is different these days, and in some ways it's better than it ever was. But there'll be more to say about that later on.


In 2006-2007, I found another partner. We live together in Seattle with our three dogs. We are one big, happy herd. In some ways he's very different than I am, but in the most important ways our hearts beat together as one. Besides, if someone wasn't different then you'd be in love with the guy in the mirror, and how boring would that be? Plus, he makes me laugh at myself, and God knows I need to!


Anonymous said...

Thanks for sharing this. I've been tired for awhile, also there are times when mentally, I just know I'm not as sharp.

I've noticed that one of my hands has been shaking when I hold up a book at night to read. At first, I wrote it off to tiredness. But in the back of my mind is my father who has Parkinson's and a cousin who was dx'ed with Parkinsons when he was only 44. I'm 46.

So I'll go to a neurologist. I'm not scared, as much as I am desperate to get a bunch of things done. Especially for my kids. Teaching them to ski, getting the renovations done on my house, having a foot operated on. I just feel like the clock is ticking.
Thanks, Willy.

Karen I. said...

Willy, I came here for my new SUV but I'll consider us square for a donation to M.S. instead and yes I did sponser my sister and nephew on the bike ride in Minneapolis as I do every year. No, don't thank me, I'll thank you as this info and inspiration are helping all those who may not make it to retirement before something happens.