(Many days, when I’m confronted with the dreaded “blank page” that’s the bane of so many writers’ creative lives, I find myself with a recurring problem: what to write. That’s due more to a lack of inspiration than a shortage of topics. There’s always plenty to write about, but sometimes none of it motivates me. Today I find myself in a far more welcome situation: My imagination runneth over. This is what spilt.)
Since most people who know me know I have MS, they’re quick to tell me about their friends or family who share the same fate. I greatly appreciate them confiding in me this rather sensitive news. It displays a level of trust I never take for granted.
Some of the names they give me are of those the MS crowd calls the “newly diagnosed”. “New” is a relative term. If we’re talking about the latest piece of electronic gadgetry, it involves all of about ten minutes before it’s obsoleted by the next wave. With MS, the shock of the new could easily last a year, so profound is that pronouncement. A person’s life is turned upside down and inside out all at the same time. The only thing for sure about life after an MS diagnosis is uncertainty.
(No one I’ve known who has received the diagnosis has shown any of the reactions pictured on this newly diagnosed informational page from the MSAA. These people look more like lottery winners than people given the news of a chronic illness. I don’t think that kind of pretense serves anyone well.)
When people pass along names to me, I always tell them the same things: First, I’ll pray for the person and possibly that one’s caregiver. I add the person’s name to my prayer list of people with MS, which I visit frequently. Second, I recommend they read my blog because it’s awesome. 🙂 Finally, I tell them about the value of support groups, encouraging them either to join the one I’m in or to find one more convenient for their location and schedule.
Invariably, people appreciate the first, laugh off the second, and avoid the third. Many people are wary of the idea of joining a support group. More than most, it’s that newly diagnosed bunch who are scared off by the idea.
I get it.
For someone just getting used to the idea of dealing with a potentially debilitating chronic disease, sitting around with a bunch of people in wheelchairs, scooters, and other accoutrements of the condition can be disheartening. In that gathering, the recently diagnosed see only their own bleak future.
And if it’s a dysfunctional group, it can also be toxic, with a bunch of people whining about how rotten their lives are and feeling sorry for themselves because of their misfortune. Honestly, I wouldn’t be caught dead (or even disabled) in that group either. That environment helps no one, whether newly diagnosed or a veteran of the MS wars.
Fortunately, there are plenty of groups around to choose from. Few are as awesome as the one I attend. We’re a crew that spans the ability spectrum, from people in chairs to others who show no external sign of the disease. The cool thing is, no one seems to mind. We embody that “diverse” environment everyone is always talking about but, deep in their consciences, is afraid of.
So you go to a group and it’s not something you think will meet your needs. The solution is simple: Don’t go back. (I’ve done it.) No one tracks you down or puts your picture on the side of a package of Betaseron. (“Have you seen this man?”)
Another, more altruistic approach: Go to that group, not for what you’ll get out of it but for what you can bring to it. This kind of attitude might be more appropriate for people who’ve been around the MS block a few times and have more to contribute, but maybe not.
You see, helping others is not only a nice thing to do, it’s beneficial for one’s own emotional and (because the two are inextricably connected) physical well-being. If you don’t believe me, just ask Dr. David Rintell, a guy who’s as much an expert in this area as anyone. (And he’s a hoot to boot.)
So I’ll make yet another pitch for folks with MS, including the neophytes, to join up with others in the same pitching and yawing boat. If you don’t want to do it for yourself, do it for someone who could use your encouragement.
caught dead (or even disabled) in
Too funny lol
It’s only funny cuz it’s true. And only cool people like you could handle the humor of it. Thanx for chiming in, Scott.
Living my life as someone who believed that to do something right, I had to do it myself…made me reticent to even consider going to a support group meeting. Man, was I wrong. Your blog is right on the money. Don’t forget the other benefits of support group participation, ie; friendships, comraderie, access to new and relevant information, opportunities (social, mental, physical) and, of course, or passion for good food coupled with facilities which are handicap accessibile.
I’m glad I didn’t say it, Jeff, because I couldn’t have said it better. Thanx for making it real!