08 March 2010

No Hands

Warning: This post discusses some of the gory details of progressive MS. If you avoid support groups because it's scary to see people in wheelchairs (and I think that's a perfectly reasonable thing to do, myself), you might want to skip it.

You always read about how people who are diagnosed with MS are afraid  they'll wind up in a wheelchair. That's the symbol of disability, the point at which you go from being pretty much OK to being disabled. I realize it's a matter of perception, and everybody's different. But I've been unable to use my hands, and unable  to use my legs. I've tried it both ways. For my money, not being able to walk is not all that big a deal. Not being able to use my hands is far more disabling.

Not that it's a contest or anything. They both suck. And, unfortunately, they're not mutually exclusive.

Not being able to use my legs means I can't stand or walk, of course. Can't ride a bike (that hurts), can't dance (that really hurts). Hiking and backpacking are out. That's about it. Everything else I wanted or needed to do, I could still do. Pretty much. It might not have been easy, or pretty, but I could do it.

Not being able to use my hands is a whole 'nother thing. Not being able to use my hands not only means I can't do things I used to enjoy, like quilting and calligraphy, or things I did to earn a living, like using a keyboard or a pencil and paper. Not being able to use my hands exposed heretofore unimagined vistas of humiliation; not being able to take a shower or brush my hair or dress or eat or blow my nose or use the toilet without help. If your hands and arms don't work, you're pretty much screwed.

I had trouble getting doctors or therapists to take nonfunctional hands seriously, but show up with a mobility problem and they were all over it. Maybe because the mobility problem was one they could solve.

There are lots of solutions for legs that don't work. There are canes and walkers and crutches and wheelchairs and ramps and curb cuts and elevators and large toilet stalls with grab bars. People can see that you're disabled and, if they're so inclined, make accommodations. If your hands and arms don't work, you just look inept and clumsy.

Having scribbled all this, I'm having second thoughts about putting it up. My point, supposing I had one, was to compare the relative disability occasioned by loss of function in various limbs. I just thought it was interesting, in a bizarre and twisted kind of way. It wasn't what I would have expected.

I don't mean to scare anybody. (You'll notice the warning at the beginning of the post.) I realize there are people who find it scary to think about the possible consequences of MS. Who wouldn't? Having a progressive neurological disease is scary, for real, but not everybody with MS will wind up where I am. Not everybody will get the opportunity to compare life with no  hands to life with no legs.

I definitely don't want anybody to feel sorry for me. What would be the point of that? It doesn't help me, and would just make you feel bad. Don't do it. While I don't consider MS a gift and I'm not typically one to look for the silver lining in every cloud, I do realize that I'm lucky lucky lucky. As much as I would rather they didn't have to, I have an amazing family able and willing to take care of me. I have a place I can live, food on the table. Life is not what I expected it would be, for sure, but it's good. On the whole, all things considered, most days, it's good.

Oh what the heck.


  1. Zoom - I've been thinking about these issues a lot lately. Thanks for highlighting the exponential difference in LE vs UE issues. Personally, I worry about my voice and swallowing.

    You also nailed it that the resources available make a huge difference in the whole picture.

    Was surprised about your comment about docs/therapist not taking the loss of hands seriously. Well not the docs, but even the OTs? Gads.

    Thanks for sharing your thoughts.

  2. I'd clap for you, if I could. hahahaha inside joke. I'm screwed on all limbs. Which do I miss most?? Good question----hard answer. Being blind was the worst.

  3. I have notices in our MS group and at the PE class that the younger healthier folks tend to shy away from those that are worse off.

    Yes all relative but . ...

    My best MS pal has major communication problems and this causes conversations to run on and on and on ..... so folks run or roll the other way when she is headed toward them sometimes. Now that sucks no?

    I kind of like that she repeats everything cause by the third time my pea head might actually get the point -once is usually not enough!

    I thought about all the stuff I do with my hands after reading this post - gosh me oh my - how could the docs and therapists not get what a total f'ing big deal it is?

    Your post does cover most of my deep seated fears. I have had and have too many friends that were wheelchair bound via accidents, birth defects (nasty isn't that defects?), and MS.

    They all manage and work it out. But the hands? Scary double toothpicks stuff for me.

    Don't think I will feel sorry for you though as that would be an insult. As you are obviously a very strong and determined woman.

    I am glad you wrote this and decided to post it.

    I got more from your honesty than the zillions of MS Awareness videos I have watched today.

    And yes nothing more awesome than having a loving and willing family.

    Life is all about the love really.


  4. Zoom - thanks for your honest post. It's writing like this that helps me get into Skip's head, or at least a proxy of her head, because she doesn't like to talk about her MS. Actually, she doesn't like to talk about her thoughts or feelings in general. So, getting a perspective on how it feels for you to lose hand/arm function is helpful for me, cuz Skip doesn't have all that much functionality left there either.

    Interesting about healthcare professionals not giving much attention to your arm/hand problems. My guess is what you pointed to ... lots of tools to help with mobility. Not much to help with arms and hands.

    I am amazed at how you handle this and your perspective.

  5. Hi,
    Please come by my blog and pick up your Beautiful Blogger Award.

  6. Hi, Zoom.

    As always, thanks for such an honest post! Jennifer and I were reading it together, and she wants to know how you type such an awesome blog with no hands (she's pretty frustrated with Dragon Naturally Speaking and has a hard time typing posts for our blog and writing her papers for class). Do you have any suggestions?

  7. Thanks for pitching in, kids.

    Dan/Jennifer, DNS can be frustrating, for sure. I don't think I have any magic tricks, but I'd be happy to chat about how I do it. Since it's probably not of much interest to people who aren't keyboard-impaired, does email work for you?