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  • Writer's pictureMona

Look Ma No Hands

A parents first reaction to that statement would give new meaning to 7-11’s Big Gulp. But what about if it was due a degenerative disease and a person having to tie their shoes with their teeth (if they could)? You’d probably still gulp.

Well, I’m here to say it’s true. MS grinds away from the extremities in, rendering fingers and toes useless. Lately it’s getting to the point of being easier to use my teeth than my fingers on one hand, with the second hand starting down the same road. Even bending over or sitting in a tall chair, I have to work at not falling out. Foot drop has become leg drop, where I physically have to reach under my knee to lift my leg. Walking is more distorted than ever and I was told I will do more damage if I continue as is. The next stop is a power wheel chair. Gulp.

Not that I’m complaining, but someone suggested I should start writing about my current week to week struggles and how I not let them get to me. My other girlfriend recently described my spirit indestructible and I had to smile. So hence:

I do have bad days but thankfully not overwhelming many, and usually not back to back to back. Instead I try to inspire myself on how to make lemonade and have disciplined myself to shut off the TV to keep putting one foot in front of the other. By coming up with creative alternatives I figure is a more constructive, positive way to live.

I had problems opening a safety pin the last few times and worsening dropsies so that tells me the motor skills are starting to go in the good hand. Hence it’s probably prudent to think of ways to begin to learn to adapt to life with little or no hands.

Already ties - drawstrings, laces (bathrobe, aprons, pants, shoes) are a challenge but a care aide showed me the double loop method that I use all the time. The first step in tying a bow - simply loop the string over a second time so it stays tight while you make the bow part. Sometimes I do, sometimes I use a small Ikea clip or clothes pin instead of the bow part.

I’ve been getting my meat cut up for some time, but cleaning my dinner plate of the last couple forkfuls are a pain. I have to wobble it onto the fork or I can switch hands to operate the knife, then switch back to eat it. There’s special gizmos you can get but I’m happy enough for now. My world is very slow.

The gross motor skills in the bad hand are getting grosser but they still work. Thankfully my progression rate was on the bunny hill opposed to some whose cards dealt them an array of black diamond runs, although mine seem to be shifting currently.

Lately I have started thinking about areas I will need help with to begin preparing both physically and psychologically for a new chapter. Like getting a dress assist and operating on a scheduled clock to get dressed the same time every day. I could start with twice a week to get used to it, then hopefully, as I find it more convenient than not, the transition to full time will be easy; another thing I can do is clean out a number of dishes and cutlery so the care aides aren’t burdened with more dishes than necessary, and maybe start thinking about rearranging furniture to accommodate a power wheelchair or indoor scooter – it’s a long walk to the Lounge 6 or my outdoor scooter.

I may not be able to do art like I used to but I still paint, and write, and am still realizing dreams. I don’t sit around waiting for God to reach down and cure me but make the most of what I’ve been given. And if I can’t do those things someday, I can always smile and crack a joke or wave and say hello because I am empowered from on high to walk path I’ve been given. And as long as I’m here, I will do my best to inspire and extend those graces that been given to me. Then MS becomes the incidental, insignificant piece, just the way I like it.

So, when I say ‘Look Ma No Hands,’ she will say bravo instead of holding her breath.

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