I’m a low-tech kind of person caught up in a high-tech kind of disease. I now have a machine that breathes for me, one that speaks for me (have two, actually, one for the phone and one to go), an implant that swallows for me, a machine that coughs for me, another one that clears my throat (ahem), and a collar that holds my head up so I can survey the wreckage.
I’ve got more peripherals and cables than a 1990 PC. All I need is a little gizmo to scratch my butt and we’d have a fully operational human being. Throw in an inflatable doll, and voila — a Stepford Wife.
I’m wondering, does anybody need the actual me any more? Can’t I just plug it all in and sneak off to a movie while my clone wheezes and gurgles and robot talks?
I don’t use them all at once, of course. In fact, I’ve never tried the clearing-the-throat wand, since I have lost my gag reflex and I’m afraid of inadvertently removing my appendix. The cough assist is another “you’ve got to need this pretty damn bad to stick your face in there” machine. I tried it once and when I had reassembled my features, I found it amazing that anyone would actually try it twice. Still, there it looms, just waiting for me to need help coughing, when it can leap up and clamp on my face like the vacuum cleaner from hell.
Speaking of gag reflexes, and I mean this is a very complimentary way, I’ve put up with all this nonsense so far because Jerry Lewis is paying for it,** but they’ve finally gone too far. I generally go along with things as long as it doesn’t cost me anything and doesn’t hurt too bad, but now they have pushed me over the edge.
Warning: A gruesome piece of information is coming up. Reader caution is advised.
Now, they’re trying to make me wear tennis shoes and only tennis shoes for the rest of my life!
Stop, stop, people! I’ll tell you everything! Bin Laden’s in Burbank! Saddam bombed Pearl Harbor! Cheney’s a lesbian! (Oh, wait ... there’s another one?)
Not that I’m yearning to trip around in spike heels with sexy little ankle straps. Much more importantly than that, they’re taking away my Berkies! My Berkies! And there are still cute shoes available for women of a certain age... slides and flip-flops and stuff ...; that make you feel good about having feet. In fact, I bought some of them a year ago, when I was diagnosed, since I really didn’t have any decent shoes to be sick in. I think you must always dress the part.
Alas, I find out now the part requires tennies. And to make it even clearer to me, they have attached my brand new leg brace (a charming new accessory) to a left tennis shoe. The right one will be arriving in September. Brace, not shoe.
I limped out of the ortho place (I wasn’t limping when I went in to pick up the brace, by the way, because I was wearing cute slip ons that allow people to walk normally) in a stiff-legged waddle. When I get the right brace, I’m sure I won’t be able to take a step without falling on my face. Perhaps that’s the point of it all. Keep me off the streets.
A leg brace is a long heavy black thing from the knee down that wraps under your foot and holds the toes up. Long suspenders would probably work as well or maybe I could sling a toe bikini around my neck like Borat. The brace straps on with Velcro, natch. I’ve now reached the pitiful point where I have to use pliers to undo Velcro.
It turns out... insult to injury ... the brace squeaks loudly. So do the shoes. The combination comes out to a long swakkkeeekkk swakkkeeekk.
This is added to the unusual noises one’s body makes with ALS. I haven’t mentioned these before, but it’s time you know. My neurologist has explained this to me three times, and I still don’t get it, but there is allegedly a little muscle in our bodies that normally keeps our breathing quiet. With ALS it weakens, like all our “voluntary” muscles, so you get noises when you breathe. In my case, I’m getting a plaintive grunt on every exhale. (If this muscle is voluntary, you’d think I would have known about it before now.)
Anyway, I’m now walking around going: swakkeeekk grunt. Swakkeeekk grunt. Can’t wait till September when I have two squeaking, swacking braces.
If they ever feel like continuing the “Halloween” movies, I can surely do the sound effects as Michael Myers sneaks up to mass murder another unsuspecting blonde teen.
Speaking of Halloween, I’m planning to wear all my ALS gear simultaneously this year, starting with the Darth Vadar breathing mask, to welcome the little kiddos and send them screaming into the night and eventually into therapy.
Or perhaps I should just Swakkeeekk Grunt up behind them in the dark. I've got a couple months to decide.
** Muscular Dystrophy Association (Jerry Lewis’s foundation) provides massive support for patients with ALS and similar "orphan" neurological diseases. There are about 50,000 ALS patients in the US, compared to over a million with Parkinson’s, so funding for research is always an issue, and MDA is truly a blessing. And bless Jerry Lewis, from one of his kids. J’aime “Le Professeur Dingue.”
FYI--There’s going to be a big fuss about ALS on the 4th of July. Major League baseball will be remembering the 70th anniversary of Lou Gehrig’s farewell address at Yankee Stadium with ceremonies at all home games that day. It is coordinated by ALSA ... the ALS Association ... which, along with MDA, makes a humongous difference in the lives of ALS patients.