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December 18, 2009
A private and public battle
Living with chronic illness requires a psychic push and pull.
ELLEN FRANK
The trouble with chronic illness is that it doesn't go away. Yes, I understand that should be obvious because that is why it is called chronic. But I have had multiple sclerosis for 21 years now, and I am still endlessly surprised when I notice that I am less mobile today than I was the same time last year.
This is an article I wrote a few years back, yet it still resonates with me today and, I suspect, it probably will ring a few bells for many of you as well.
The year is 2004, it is mid-December and tomorrow I want to go to a Chanukah party in Vancouver to be with a community of people whom I adore. Because I moved out of town two years ago, I don't see these folks often, and today I am attached to a need to appear healthy. Nowadays, when people say, "You look well," I get irritated that they have no concept of the energy that goes into looking well. On a good day, I can still pass as able-bodied, and somehow I imagine that if I can pull that off, then I am succeeding as opposed to succumbing. Oops, here is the success and failure thing again. I thought I was beyond this.
Success is looking well. Success is cheerful. Success is moving around easily. Success is having work. Success is having an income. I might be especially attached to "passing" now because my guess is that in another few years down my road, "passing" will be a joke. You can't pass as able-bodied with crutches or a wheelchair. Why would I care? Because people treat you differently – one becomes the disability. It is the difference between disability being a private matter or a public one. If I am passing, I may choose to tell you about the state of my health. When I am sitting in a wheelchair, perfect strangers feel they have the right to ask, "What happened to you?"
Failure is being unemployed. Failure is poverty. And failure is illness without recovery. There is a certain disease terminology that we all know and love.
"She is fighting a courageous battle with Parkinson's" – as if there is another choice to be made.
Death in our culture is often seen as failure. Just read the obituaries:
"She lost the battle with cancer," meaning "she died."
"He died after battling complications from heart surgery."
Ah, but in our culture now we have the good dying options. The rest of the obituaries read "... died peacefully in her sleep, surrounded by her family."
I know better than to make my relationship with MS a battle – I know better, but I still do it. And the point of a battle is always to win. But what would success in this battle mean other than I'd look well? And what does failure mean? How did I get caught in this one?
I share this frustration with many people with other chronic illnesses, arthritis, fibromyalgia, Crohn's, lupus, asthma, diabetes – illnesses that are debilitating and degenerative but not immediately life-threatening. I imagine that if my MS were immediately life-threatening, then maybe waking up in the morning would be "success." But no, I somehow feel compelled to be improving and, with a degenerative disease, that compulsion is most often ludicrous. It is kind of like jumping through those millions of hoops advertised in the women's magazines and on TV to look younger.
As the years go by, I notice that my friends have their own battles, if not with illness, just with age. We are all less mobile than last year. And in common with aging, my biggest fear is dependence, not death.
I do all the right things to try and stay well – get exercise, eat better – and then, when I start feeling a bit better, I want more. I move the goalpost and continue the struggle. When something minor happens like a cold, and I am flattened, I am surprised and I am bereft.
"Oh damn," I say. "You again."
"Yes," my partner MS answers. "Did you think I was leaving town?"
"No, I just thought you could leave me alone for awhile."
"Why would you still think that after all these years?"
"One can hope," I say. "Is it really too much to ask?"
"No, not too much to ask, and I know I take up more space than you would like, but, honey, we are sharing the same body. It would be best if we could get along."
"It would be best but I don't want you around," I say.
She laughs. "Well, I am here anyway."
And the dance begins anew. I have read all the books. I know all about acceptance: live in today's reality not in what once was, be gentle with myself, don't blame myself, focus on what I can do and on what I have. I know. Sometimes I can even do it. Sometimes for weeks at a time I can befriend MS and befriend my body and soul as it is in any given moment. And sometimes I can't do it at all.
Will I get to the party tomorrow? I don't know. The trouble with chronic illness is that it doesn't go away.
Ellen Frank is a writer, activist, mother, grandmother and retired travel agent. She has lived with multiple sclerosis since 1988 and knows well how hard it is to get around with limited mobility. She is the author of Sticks and Wheels: A Guide to Accessible Travel on the Lower Sunshine Coast (Ouzel Publishing, 2006) and features information on accessibility services on her website, sticksandwheels.net.
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