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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • GN Glaser
    4 years ago

    Excellent piece Kim! Much obliged. 🙂

  • But You Look So Well
    5 years ago

    I have to laugh. You just described my typical day, except that some days I actually get dressed and out the door by 10 am to go to a workout session. I have found that exercise helps me with my symptoms almost more than anything, although I couldn’t do it without very tolerant trainers and the help of my flawless DMT, Copaxone. I did visit my demented mother today, and told her four or five times that we had actually moved to Virginia to be nearer to her, and had to tell her several times that I had had multiple sclerosis for thirty seven years. She was appalled all over again, but told me “YOu Look so Well!” It never gets old.

  • Kim Dolce moderator author
    5 years ago

    Sorry about your mom. I see some additional context now for the username you chose. Your sense of humor serves you well.

    I wrote the essay a while ago before I’d started exercising. So the routine has already changed. Hope you stick with yours, it really does make a difference.

    Kim

  • itasara
    5 years ago

    I loved your blog because in some ways we are very much alike. You wrote, “My typical day is one of procrastination. I arise at 9 o’clock, grind coffee beans…” Well I was a procrastinator most of my life, I have to admit. I’m very fortunate that my MS is so far, mild. (I was dxed at age 56 about 10 years ago.) I don’t grind coffee or use a coffee maker unless for company (a rarity) b/c I don’t want to clean it out (I also don’t have much smell or taste anymore;) I make instant coffee (is that procrastination or laziness? FINE LINE!) . And now with a dx and incidence or two of Atrial fib, I’ve cut my coffee consumption (reluctantly) to half coffee, half decaf. I am a nightbird so I go to bed around 4 am and get up anywhere between 9:30am and 11 or 12 (or later.) My favorite shows are also “law and order” and also Crminial minds, Flash point, etc. My husband doesn’t understand why I like them. I don’t either, but I do. Although I used to exercise regularly for years, I stopped when my kids when to school full time and I got our first computer in 1984. The world is at my feet, while I sit in a chair a lot of the day! I’m addicted to TV and computer! Gave up exercize years ago, but I’m trying to do a little more these days, but believe me, it isn’t enough! I like background noise (always have) so if I am not watching a particular show I have the (not liberal) news on all day. I mute it when I practice my singing (when I’m in the mood.) I have slowed down but more so I think because of getting older (and lack of ambition) rather than because of MS, but who knows? My children are grown, some still needing our “help” and our pets passed away in the last year, but as much as I miss them I was tied down, especially as they aged and got ill. So maybe my husband and I will travel together to visit all but one of our adult children who live far away. Even with children and husband, I have many days that I feel I’ll have lived my life in obscurity.I was an only child and that too adds an element to my life. What can I do to make a difference, I ask? I don’t know. I’m not what you might call the “leader” or “organizer” type. I worked a short time in my youth (before children) and it was difficult for me. I have a very part time singing job now but like you I prepare at home and no office politics to deal with! What ever I have to pass down materially, I don’t know that my children want. Life today is not the same for them as life was for me, yesteryear! What I may have spiritually, or emotionally, or philisophicall or knowledge wise, I’m not sure they particularly care about either. Some of my talent musically they may have, at the least. What I do know is tht time passes much more quickly as I age, and that IS scary!

  • Kim Dolce moderator author
    5 years ago

    Hi Itasara, I feel the acceleration of time passing, too. Scary indeed! It creates more urgency and probably helps to motivate me some days.

    Kim

  • Jan
    5 years ago

    Thank you, Kim. I’m also trying to give myself permission to live with MS without “lazy guilt.” SSDI is not a consolation for not being able to walk.

  • Lexine Darden
    5 years ago

    Jan, I agree with you wholeheartedly! SSDI is merely an income man or most times insufficient. We’re left to redefine who we are and love ourselves while losing capabilities like mobility…and have to give ourselves permission to do it guilt free.

  • Kim Dolce moderator author
    5 years ago

    Jan, I’m glad you’re making the effort. What else can we do?

    Kim

  • Lexine Darden
    5 years ago

    Kim,

    Your last line “My hope is that someday I’ll give myself a break and let the simple pleasure of mere existence be enough.”
    Yep, me too.

    Thanks for sharing. It’s truly a dilemma.

    Lexine

  • Kim Dolce moderator author
    5 years ago

    Lexine,

    Thanks for sharing your thoughts.

    Kim

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