It Takes a Village

by Dean Kramer 
June, 2003


As I visit the message boards at MSWorld and continue to participate in chat I become increasingly aware of how many people there are still anxiously awaiting a definite diagnosis. I also read postings where people already diagnosed anxiously question the results to be obtained using various vitamins, ointments, and other alternatives as a way to treat MS. In chat and on the boards as well both groups of people write anxiously of appointments with their doctors and the array of tests they’re undergoing.

Anxiety seems to be a major auxiliary to whatever is going on with us. Is it like this for you? When I experience a symptom I feel anxious. Is it a flare up? Is it transient? In the California of my neurologic system, is it The Big One? There’s an awful lot I don’t know and no one seems able to give me any definitive answers. Over and over in chat the hosts say, "Everyone with MS is different and meds that work for you might not work for someone else. Experiences you have might not be the same as someone else’s...", and blah, blah, blah.

There’s so much information to process, much of it fairly technical, medically. Doctors often lack the time to explain well. Websites offer materials I don’t always have the background to assimilate. I feel pressure in my relationships to get well, to BE well or, at least, to not get worse.

Ads for MS therapies show happy people living undisabled lives while I, despite my medications (or, for some of us, even because of them) feel lousy. Like an underground river slowly dissolving the limestone of my defenses, there’s an internal voice murmuring, “Gimme control! Gimme reassurance!” And the main reassurance I want is for it all to be fixable before it’s too late. Our anxieties are real, normal, and we’d be nuts not to have them. Not only is any health-threatening situation fraught with uncertainty, but MS, difficult to diagnose or predict the course of, is particularly so.

I’ve written before about the ways I cope with my own anxiety and uncertainty, the meditation, the adaptation, the slow movements toward adjustment and acceptance made over the years. But communication with others who have MS has been a true soul-saver for me. Based on what I hear in chat and on the boards, it’s been the salvation of others, too.

It doesn’t matter whether we’re bashing our docs, empathizing over rocky marriages, describing ways our disability entertains friends, or sharing advice about treatments. To me, it’s simply reassuring to be able to speak of something as ephemeral as a symptom often can be and, with very little description, evoke enthused response from people who have felt just as I have.

Even while one is waiting in MS Limbo-Land, caring neurologists may recommend support groups. Many doctors do so after the diagnosis is confirmed. At the very least they often point patients to the National MS Society for more information. In my own experience, though I was reluctant to have contact with others at first, such interaction has been as helpful as any other therapy available to me. It’s given me the disability point spread. It’s helped me get a feeling for the odds. It’s put me in the midst of a community where, the longer I linger the less anxious I need be. People with MS are out there having lives. They're having fun. People with MS are so—normal!

In my life with MS I’ve sought my share of certainty—safety may be a better word, from a very self-centered point of view. Community has altered my perspective. I’m never going to be safe from MS. Some days I’ll feel good and some days I won’t. Sometimes I’ll have a positive outlook. Other times I’ll be afraid. Some symptoms will probably get worse as the years pass while others may disappear. But hanging out with my MS buddies makes it easier.

There will always be someone doing better than I who can offer me consolation. There will always be someone not doing as well whose anxiety I can relieve. I’m never going to be at the bottom or the top of the heap or, anyway, not for long. I’ll mostly be tucked neatly in the middle somewhere. The middle is a reassuring place to be and I don’t have to work too hard to stay there. So let’s all sing, “It’s a Beautiful Day in the Neighborhood” and those of you out there in the MS community…thanks for sharing!