Saturday, March 12, 2011

Choosing an Epitaph

After many years and false starts, I have finally decided upon my epitaph.

It came to me while watching Carole King and James Taylor reminisce on "American Masters" while standing in the foyer of The Troubadour, shuddering in tandem at the thought of returning in another twenty years for a final geezer perspective on the sixties folk scene. We thought as one back then, they mused in unison, but things--even wonderful things--don't last forever. They aren't supposed to. Carole quipped: "I sure don't want to play The Troubadour at 88! That just wouldn't be good."

I imagine drugs had something to do with burning a few bridges and not a few brains. Even Carole and James, in all their stubborn staying power, feel old and tired now, not quite believing they actually did all the things they remember from forty some odd years ago.

No, I am not lamenting the end of the folk scene, nor the Beatles, nor the Eurythmics, nor even Talking Heads. I'm thinking about the notes of my everyday life and the song it has become.

When I felt bored and in a physical rut with this stupid disease, I sought out physical therapy. I've always needed something to push against so I can feel my life. When the exercise got too easy a couple of weeks ago, I demanded more challenge. Bryan, my therapist, a 41-year-old student and ex-factory worker starting a second career as a physical therapist, finds things to challenge me that push me to exhaustion. He wants me to get stronger, to make the foot drop disappear. I know there won't be much of a change, but I love to pretend it will happen and that he, my Lancelot, will help make it true. He holds onto me with a tether attached to a special belt around my waist, keeping me from falling while I struggle to walk toe-to-heel. I like to think that he does this because he truly cares for me. This is a fantasy I find pleasant, as I am a little in love with him. He is attractive, capable, quiet, kind, father of two teenage boys. When I meet men like Bryan, everything is right with the world.

On my days off, I sit all day, fighting sleep. The therapy exhausts me. My husband feels sympathy and admiration for me, fetching tea and bringing me gifts. Last week, he gave me a Kindle with a cute little booklight. I am reading Ben Franklin's autobiography. When I grow bored, I play canasta with my mother and drink coffee for a couple of hours.

This is my life. It isn't what I'd dreamed of at sixteen, or at forty. I'd had plans to become a world class musician, then a world class literary novelist. I managed to become a good musician and a good writer before MS started pulling me onto the sidelines.

I'm getting less and less angry about those dreams crashing and burning. It's a storybook life, really, just not the chapters my ego had hoped to see itself in as the main character.

Oh, right, and my epitaph? "I knew it was too good to last forever."


  1. Dear Kim,

    My name is Maria. I am new to this blog. I was reviewing blogs such as yours for a work-related assignment; however, I found myself reading and even re-reading your posts from a personal perspective. While reading your posts (from March 2011 back to Dec 2010) I felt so many things including a sense of understanding, commonality. I am a medical writer, have a 5-year-old daughter who has cerebral palsy, and an uncle, by marriage, who has MS. From one aspect, I see my daughter, a young girl who struggles to learn to balance herself and even take one step; on the other hand, I see my uncle, a 58-year-old man trying to keep his balance to maintain his gait after all these years. When my daughter was born with CP, my husband and I kept saying, "Everything is opposite of what we expected." They told us she would die within 72 hours. But then we took her off the respirator and then we took her home in our arms. She recently turned 5. So I understand from one perspective about "This is my isn't what I'd dreamed of at 16 or 40...." But there are many days when I realize perhaps, in some way, this might be even better than what I had dreamed of. Our trials and various experiences help us to feel life and help us to live.

    I hope today was a good day.


  2. PS...I love Carole King, James Taylor, and especially Ben Franklin! Enjoy the book.

  3. Maria,

    Thanks for leaving a note about your impressions and especially about your daughter and uncle. Your courage to follow your instincts and take your newborn home really moved me. She is lucky to have you.

    I can tell that you understand--and dare I say it, well cope with--what strange things the central nervous system can deal out.

    I agree that this compromised life is better in some ways than the one dreamed of because our experiences teach us how to live.

    Ben Franklin was quite the Renaissance man! I'm on to Thomas Paine next. Hope to hear from you again.


  4. Kim,

    Thanks for your kind words. Your prose is quite pleasurable to read and re-read. You said in a post you have become a good writer...I say that's an understatement. Have you published elsewhere?

    Originally I was scanning MS sites for a work-related project. As I said earlier, when I found your posts, I was driven to write on a personal note. But now I feel compelled to share with you what I am working on, wondering if you might be interested in it also.

    I work for a company who helps pull together interested individuals to serve on a roundtable (sort of an advisory board). We have done this in other categories such as ADHD and ulcerative colitis. It gives patients, in this case, those who have MS, an opportunity to share their experiences and opinions about their care, frustrations, treatments, etc. Would you like to hear more about the details? If so, I can give you my private email or even my phone number.

    Either way, I hope you and I can write one another from time to time. I enjoy your writing, and it is important to find people (for both of us) who understand one another and help encourage one another to live life!


  5. Hi, Maria,

    I'd like to stay in touch and to hear more about your project.

    Feel free to contact me at

    Looking forward to hearing from you again.