MS Musings

For most people, New Year’s resolutions go the way of fleeting fame, re: the Man with the Golden Voice—they start out with the best of intentions and then after a few weeks (which as the formerly homeless radio announcer discovered may or may not include a visit to Dr. Phil and a trip to rehab) they crumble into fine dust and skitter away in chilly late January winds. There has to be a better way. It turns out there may be: announce your intentions, say researchers. In particular, tell strangers, like those on an internet forum, about your designs for a better you. Studies have found that the more folks who know about your resolutions, the more folks you’ll have in your corner to root you on to accomplish your goals… and the more pressure you’ll put on yourself to make good on your commitments. And why strangers? Unlike a skinny family member who might relish being “the thin one,” compatriots like those on the message board of ActiveMSers (http://activemsers.wssnoc.net/index.php) don’t have hidden agendas. Better yet, you share that common bond of having multiple sclerosis and understanding the daily challenges involved in fighting a chronic disease. So you might not know me, and your resolution might have already moved back to a shelter in Ohio by the time you read this, but know this: I believe in you. After all, you’re here, right? Sometimes that first step in turning a new leaf is more of a shove from behind. So get your a$$ in gear! You can do this. Absolutely you can. Just let me and your virtual friends help you out.

Oh, and how do I guarantee my resolutions stay intact every year? Easy. I always make a resolution not to make any more resolutions other than the one resolution not to make any more resolutions. Works like a charm every January 1st.

People say lots of silly things when they hear you have multiple sclerosis. “It could be worse… you could have Lou Gehrig’s disease.” Um, okay, I suppose MS usually doesn’t quite rank up there with ALS in terms of nasty neurological diseases. Wow, I feel so lucky. Maybe today I should play the lottery, too. “I know someone who has MS and she just climbed the Seven Summits.” Her name is Wendy Booker, she’s not your normal MSer, and I’m pretty sure I’m not seeing the summit of Everest unless it’s in an IMAX theater. (Okay, technically I did see the summit… from an airplane flying from Bangladesh to Bhutan a few years ago, but seriously.) “I have a couple friends with MS, Stacey and Madison. And Madison is doing great!” I know this may come as a shock, but even with MS I still have the powers of deductive reasoning. What the hell happened to Stacey? Wait, don’t tell me. “My aunt had MS… she died.” Oh, my favorite. I know someone who had MS. Thanks for sharing.

People mean well, they do (and I’m sure most are clueless as to what to say), but there has always been one comment that, at least until recently, had grated on me more than most. “At least you don’t have cancer.” When I was diagnosed I would have disagreed with that statement, indeed argued. Unlike with MS, with cancer you have a chance to beat it. I have a few friends my age who have beaten it, even from the depths of Stage IV, and are living pretty darn normal lives. But I also know those who have lost that fight far too young. It’s devastating. Permanent. Those individuals almost certainly would have chosen our fate. Trust me, you don’t want cancer. At least with multiple sclerosis, there is ongoing cutting-edge research (beyond the ever-talked-about CCSVI) that could change the face of this disease. And unlike cancer sufferers, time is on our side. One day we’ll beat this. Yeah, I said it. We’ll beat this. Until then, when I tell people I have MS, I personally prefer hearing the simple “That sucks, sorry.” Yes, it does. For now, that is.

Sounds strange, but my having MS benefits others close to me. To wit, one of my best friends was having a tough time with a trifecta of life hassles: his job, his impending out-of-state move, his kid in the terrible twos. But every time he gets down on himself, he thinks of me: “I remind myself it could be worse–I could also have MS.” Funny, I do the same thing when I get down. Only I substitute MS for things a bit more dire, like “terminal disease,” “quadruple amputee,” and “quadruple amputee with a terminal disease.” Stuff like that. It oddly works.

As you might be able to tell from what you’ve read on this site, most everything is upbeat, and that means fun stories. But this entry is not fun. One of my dearest friends, Brandon Crotty, recently took his own life. He was 36. In the best shape of his life, Brandon fell to his demons on one tragic night. And I was powerless to stop it. Brandon had helped me through the rough times early on in my MS diagnosis—he told me life would be okay. I’ll never forget that. This whole situation reminds me that sometimes having multiple sclerosis can be so incredibly inconsequential.

It’s funny how sometimes my friends forget I have MS. We had just finished a snorkeling adventure in Huatulco, Mexico, and we’re standing at the docks. Sand was stuck in every corner of my Keens. I decided to dump out my sandals, so I took them off and started shaking, putting my bare feet on the presumably hot pavement. “How hot is it?” they asked. “I’m not sure,” I said. They kept insisting I tell them. I just smiled and waited for them to remember that my feet lacked a good bit of feeling. Fortunately I didn’t burn them!