Tuesday, February 18, 2014

It’s Not the Disability, It’s the…

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I’ve accepted that I can no longer walk, and I’ve adjusted to the constant fatigue and the failing memory. Kim and I have developed strategies for all sorts of activities of daily living, so that I can be showered, shaved, dressed, etc. Everything this damn disease has thrown at us so far we’ve handled, and pretty well if I do say so myself.
What wears on me, however, is this gradual, pervasive disease progression. Once or twice I’ve been able to temporarily slow it down, but it always comes back. Of course I’d like to reverse the path of this illness and actually get better. But that’s not necessary for me to enjoy a fulfilling and relatively stress-free life. If my condition would just stop deteriorating, I’d be perfectly content to live the rest of my life with my current level of disability, or even some greater level. But that deal is not on the table.
It’s this damn worsening disability, this insidious wasting away that threatens to shake my resolve. Whatever I do, it’s never enough. MS cannot be placated. It demands so much of me, and then it demands more.
You often hear, “It’s not the heat, it’s the humidity.”
I say, “It’s not the disability, it’s the progression.”
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  1. After surviving a particularly brutal, well, maybe just nasty, Fall/Winter with MS, I couldn't agree with you more. Right now I am anxiously awaiting insurance approval for my Quantum Edge 6. I can't wait.

  2. brilliant. what so many (all?) of us feel and want to say. there is no day off.

  3. Right there with you, brother. The word "progression" is a complete misnomer. It should be called disease regression, as, in my mind at least, progression is usually a good thing. We make progress towards our goals. Where this disease is taking me is definitely not one of My goals.

    I am regressing from functional to nonfunctional, from, in many ways, adult to child, and it sucks.

  4. Wrenching but honest words. To the extent that honesty mitigates the invisibility often accompanying disability, that honesty is also inspiring.

  5. So sorry.....It's like living every day just waiting for the other shoe to drop.

  6. Hi! I'm Lynn, I have MS, and I live in Israel. I'd like to send you an email. I "click here to email you", but nothing happens. What should I do?

  7. Or living one's life as if one were healthy and thinking you never know what may happen. One of the most difficult things to live with in our minds is that we pretty much know what will happen. Thanks for your words and confirming we are not alone in this. -Kathy

  8. Darren, thanks for listening!

    Webster, good luck getting your wheelchair. That is a beauty – you will love it.

    Stephen, well put – there is no day off.

    wheelchair kamikaze, I couldn't agree more. What a terrible misnomer.

    Judy, I tend to err towards blunt honesty, although I don't always share that sentiment here. It is therapeutic.

    Andrea, waiting for the shoe to drop sounds like waiting for something sudden To happen. With my particular brand of MS, nothing happens suddenly. I just look back three or six or 12 months and think, "holy crap, there's so much that I can no longer do."

    Lynn, I'd love to hear from you at: email@enjoyingtheride.com

  9. Sorry, I didn't mean to imply the sudden happenings. It's more of the "What next?" or "What else?" that I find myself looking for. I'm sorry that you're "progressing" so quickly.

  10. That is the part of MS that is often omitted, glossed over or totally not understood. Progression means daily, monthly, yearly adjustment....again. For many as you, it is a decline with no brake. You have been amazing in your acceptance and effort to live each day fully. I know the price one pays.

  11. Very well said. The progression is the most frustrating aspect. Next to the fatigue of course.

  12. Kathy, thanks for commenting, and well said!

    Andrea, Yes, "what next?" and "what else?" questions are also bouncing around in my head.

    Xaidwp, you are correct. People tend to look at a person's static situation and not consider the dynamics of the disease.

    Kimberly, there are so many choices for most frustrating!