Saturday, April 25, 2009


I'm not sure there's a clear method for the kind of "coping" that my life with MS is calling upon me to do.

For major events--deaths, amputations, anything that is a traumatic single moment--the path is at least somewhat clear for both the sufferers and the caregivers. The Kubler-Ross model of grief, for example; the time and the path the sufferer takes on each stage is specific to them, but there is at least some definition to the stages. There is the shock of the event, the process of grief, then the return to a new normality.

Ongoing conditions that involve some sort of (at least at first) significant struggle, such as an unexpected diagnosis of diabetes or a heart attack, can invoke some sort of noble courage as the sufferer deals with the change in life, which is replaced over time by gentle acceptance. "Ah, you get used to it," my fourteen-year-old diabetic student said of her blood tests and injections. "It's really not so bad, after a while. I'm used to it."

My walk with MS is like walking through a light aerosol of oily urine. It's not bad. It is, in the words of the neurologist who gave me the diagnosis, "not even close to tragic." But everything about it is vague. I'm vaguely numb in certain areas. I "sort of" have trouble standing. I don't enjoy using my right leg (especially) but I sort of can, if I have to... usually. Sometimes I don't want to get out of my chair in a very whiny sort of way. But I can, if I have to. Sort of.

It's like having not a sharp pebble, but a gummy bear, stuck in your shoe. How bad is it, really? Well... "sort of" bad. Not "really bad." "Sort of" bad. And it's constantly, and vaguely, changing slightly... every day. Sometimes every half day.

So there's no grieving process that leaves you transformed and liberated at the end. There's no noble struggle against a significant challenge, the rising to meet which leaves you liberated by the process of transcending your own limitations.

It's not at all clear how to "rise to meet the challenge" of an oily aerosol of urine. Even if you manage to hose yourself off somehow, in a few minutes you're wet again. I suppose, that compared to some of my fellow MS sufferers, I should be grateful that so little is wrong with me.

I am. But I'm still "sort of" suffering.


Denver Refashionista said...

Oily aerosol? Nice image (LOL). It took me almost a year to come to grips with things after my diagnosis and it still throws me for a loop at times but I think I am adjusting. I guess I really shifted my thinking and gave up the idea that my life would be the same as before. Now that I think about it, I don't want that life or me back anyway. I guess MS has been teaching me that I cannot control things as much. I think it's teaching me to roll with the punches and give myself a break. I was so freaked out by the uncertainty of life with MS and then I realized, nothing in life is certain even for the healthy.

Today I felt great, overdid things and made myself sick for a while. For a moment, I was full of regret about what I now could not do and then I remembered all the things I did get to do. I had to give myself permission to just lay down and relax instead of stressing.

Robert Parker said...

The funniest thing about MS is that it teaches us that we only have "so much" energy so choose carefully how you want to use what you have; the world (and us, being part of said world) is change and impermanence; the bodies we live in have their "issues" and working with those issues will yield you better results than working against them because, let's be real, what other choice do you have?

And is that not precisely the human condition? We're living in precisely the same reality that the rest of the world lives in... we just no longer have the luxury of living in comfortable, reassuring self-delusion.

Great. As a consolation prize for having MS, we get enlightenment forced upon us. Pretty funny, actually, when you think about it...