1st March 2003
Real Living with Multiple Sclerosis
IT STRIKES ME AS ODD that there's so much "information" about MS available to those with the disease. I say that because, in my opinion, so little is really known about MS. We're left with theories and opinions about what causes MS, how it might eventually be cured or prevented, and what it may do to each of us in the meantime. I'm not trying to be critical of or cynical about medical research: We need it and should be appreciative of the massive effort under way that may help us and future individuals with the disease.
Meanwhile, are you aware of where things stand scientifically? Virtually every medical article I read starts out by stating that MS is "believed to be [autoimmune, genetically determined, environmentally influenced, and so on]." Some experts think that MS is a disease; some think it's a syndrome (a collection of symptoms). Not surprisingly, some see primary progressive MS as something completely different from the other forms of the disease-- perhaps another disease entirely.
So much for defining the subject! I think the best we can do is to leave it to medical research to sort out the how's and why's of MS. As individuals with the disease, we know that my MS is similar to but often different from your MS. Knowing that fact allows us to look at our own situation on a practical level. In this context, we need carefully chosen role models.
Having MS may be an isolating experience, either because we're trying to hide it from the world or because it's making it harder for us to get out into the world. Do you know others with MS? Do you belong to a support group in your area or on-line? Despite all the opportunities available, not everyone can or has chosen to participate in these activities. Rather than feeling left out or excluded (perhaps because of distance, shyness, or lack of a computer or computer skills), you can find information and support for yourself in some very readable books written by people with MS.
Reading books has advantages. It's an inhouse activity. It avoids the effort of dressing up, going out, and possibly experiencing social embarrassment or awkwardness. Besides, you can stop when you're tired. You can even have somebody read to you.
I've read, and kept notes on, 22 books authored by people with MS. Most of them were lent to me by libraries or MS organizations that offer a free books-by-mail service. I bought several that are among my favorites.
By no means do I endorse every book written by someone with MS. I've read a few that I thought weren't worth the time. I feel, however, that I learned something worthwhile from almost every book. What I learned wasn't so much about MS the disease, but about how people live with it. The people who wrote those books are (or were) all real people. This is important to me, because I don't want to read fiction. The authors of my favorite books have become very real to me because they're such truth-tellers. I reread portions of their books occasionally, especially when I'm experiencing MS symptoms, because these biographies offer me an infusion of courage.
There are three books I'd especially like to recommend to you. All three happen to be written by women born between 1945 and 1952; their books were published between 1993 and 1996. These authors are mature people with life experience and many years of living with MS. They give complete accounts of their MS symptomatology. They also share their perceptions of what was happening to them as their disease repeatedly showed itself. Later, they reflect on these perceptions. Readers can look into the reasoning of the authors and the decisions they made at the time. Sometimes, the decisions were foolhardy and misguided. Sound familiar?
That's the point. By reading these books, we learn how to examine our own methods of denying, retreating from, confronting, or working around our own MS. I hold these books up to you as "The MS Classics" because they have everything to offer. They are Black Patent Shoes by Eva Marsh, 1 Legwork by Ellen Burstein MacFarlane with Patricia Burstein, 2 and One Particular Harbor by Janet Lee James.3
MacFarlane and James were intelligent people who fell for quackery, then saw it for what it was and moved on. They worked extremely hard to try to recover from their MS symptoms and they tell their stories in very entertaining ways. MacFarlane, an investigative reporter exposing consumer fraud, is to be commended for telling us that even a seasoned expert in the field can be fooled. The book by James is an adventure story that's full of laughter despite her severe health challenges.
Marsh's life became extremely complicated when her husband left her and their young children soon after the diagnosis. Her commonsense, determined approach to living with MS has much to offer to single parents. In a span of about 250 pages, each writer demonstrates her resourcefulness, stamina, and hard work, as well as her vulnerability, fears, and humor.
Meet these people through their books. You'll be glad you spent time
© 2003 Real Living with Multiple Sclerosis