A Tortured Life: Of Art and MS
I don’t know what is more challenging, being a writer or being a person with MS. Both could be regarded as diseases in that both require a genetic predisposition and an environmental trigger to activate them. And both have a cogent element of mystery.
I’ve been a writer longer than I’ve had MS. I was diagnosed at age 47 and retired on SSDI at 52. Since my retirement, I’ve lived a more authentic life than ever before. My working life was spent in offices as an admin assistant. I hated business, had no talent for or interest in it, and being an hourly worker was the easiest way to earn a living and still spend off hours pursuing my creative interests. But corporate culture was the worst place to spend the majority of my waking hours. I didn’t fit, couldn’t show my humor, found it difficult to keep my guard up and toe the corporate line. Political atmospheres are poisonous to me; I might as well breathe in cyanide.
Since retiring, my days are spent pursuing whatever is important to me at a pace I can handle. I answer to nobody. But it hasn’t made my life easier. I have MS. Saying that I’d rather languish in business offices and have my health back than having all the time in the world to write now is only partially bullsh!t. I would give a lot to have that body back again, even though I found it impossible to write a book while I was working full-time. I had to quit working for an entire year to write my first book. It was worth it, too, despite the financial hardship. But I had the choice to do that back then. I don’t have that choice anymore. It’s not having a choice that brings on grief afresh.
My typical day is one of procrastination. I arise at 9 o’clock, grind coffee beans and make a strong cup of French roast in the press pot. Then I choke down morning meds, all ten of them. I switch on the TV and NPR at the same time. Depending on what’s playing, I mute one or the other. I check emails and I think about what I should do that day. I then do nothing but listen to the radio until “Fresh Air” is over at 1 p.m. I remind myself of what I should be writing or the errands I should run. Then I watch an old movie for a while, cook, do dishes, and generally avoid doing what I ought to. At three I get drowsy and nap until 5 or 6. Again I think about what I should be accomplishing. I make a meal. I think about taking a shower, but it sounds like too much work so I sponge-bathe instead. Did I brush my teeth yet today? I do it just in case I forgot. Now it’s 9 p.m. and if there isn’t anything interesting on television, I sit at the computer and do some writing and moderating. If I get caught up in binge-watching “Law & Order” or “Modern Family” reruns after watching the “Daily Show,” the “Nightly Show” and “At Midnight” on Comedy Central, I won’t get to the writing/moderating until well after midnight. I make myself go to bed at 2 or 3 a.m.
There is a gap in the space/time continuum made especially for me, a sliver-thin plane of consciousness where I indulge in self-flagellation for not being more motivated to finish writing my second book. I fear dying in obscurity and have the peculiar notion that I will be remembered longer if I leave behind a significant body of work. This might be because I had no children to carry on and preserve my memory after I’m gone, but it’s likely because of my monstrous ego. I’m a writer, after all, and being such, I walk a fine line between self-aggrandizement and self-pity. Most writers do, which is probably why I avoid other writers. We’re a whiny, insecure lot. I can’t stand being around myself much of the time.
Despite these self-imposed tortures, I have a good life. I love my new apartment and the lovely view of nature through the sliding glass door. I spotted two bald eagles the other day perching atop some trees on the shoals of the River Raisin. It’s a simple pleasure like bird-watching that cuts the harsh monotony of those inner voices chastising me for not doing more. My hope is that someday I’ll give myself a break and let the simple pleasure of mere existence be enough.
Have you ever experienced any of the following financial struggles due to your MS?