ALIVE AT 55! By Ben Mattlin

December 5, 2017

In late November, I turned 55.  For someone like me—born with a dubious life expectancy, due to a severe, congenital, and progressive neuromuscular condition called spinal muscular atrophy (SMA) —that feels like a big milestone.

Yes, I’m 55 and still alive!

Not that I don’t feel my age.  I have the usual aches and pains and dietary restrictions and health worries that anyone my age might have, plus the relentless, albeit gradual, weakening that defines so much of my disability.  I don’t necessarily grow weaker every year.  It’s more like every 10 or 20 years that I find I’ve suddenly lost some small ability I used to have.  For instance, I haven’t been able to feed myself since the 1990s.  For the past dozen years, I’ve been driving my motorized wheelchair with a lip-controlled mini joystick because my hands finally gave out.

What next?  Who knows?  Within the next decade, if I live that long, I’ll probably have a BiPAP or other ventilator attached to my wheelchair.  And I’ll be glad of it, too.  Sure beats not breathing.

I get more done on good days

Funny thing is, the more debilitated I become the more productive I seem to be.  Perhaps it’s got something to do with intimations of mortality.  On a good day—when I’m breathing well and my machinery is working correctly and my attendant has shown up on time, and so forth—I try to use the opportunity constructively.  I schedule appointments, answer old emails, shop online, and write articles and essays that I’ve been putting off.  After all, tomorrow I may be stuck in bed.

Just as each birthday can remind me of the miracle of my continued existence, it also encourages me to believe that there will be a next birthday, a tomorrow … a useful tomorrow, that is.  Even if 24 hours hence things go awry, there will come another day that goes well. 

I believe in my next birthday

I can’t say why turning 55 makes me believe that I’ll turn 56, but it certainly makes that possibility more likely.  I mean, I couldn’t turn 56 without first turning 55, right?  And beyond that, the sky’s the limit.

Some time ago, an online friend with roughly the same diagnosis as I have put the question to a Facebook group for people with neuromuscular conditions: “Am I the oldest person with SMA?”  He wasn’t.  I had him beat by eight years.  Sadly, he only made it one more year.

But since he raised the question, I know I am not the oldest survivor either.  There is someone a good 10 years my senior online who also has SMA.  But only one, as far as I know.

To be clear, SMA doesn’t affect longevity per se.  It just keeps making you weaker.  Sometimes that means the heart just gives out.  More often, people with SMA die because of respiratory complications.  We are susceptible to pneumonia and other upper respiratory infections.  Our lungs become too weak to go on.

I make sure I have what I need to keep on breathing

That’s why, for someone like me, paying attention to breathing is so important.  I keep in close touch with my pulmonologist and my allergist, and always try to maintain a supply of respiratory meds, even when my insurance fights it.  You’re only supposed to get a 30-day supply at a time, but the way some of the drugs are packaged allows for just 24 doses per month (the boxes hold four pouches of six vials).  At the same time, I keep a spare nebulizer machine (though, come to think of it, I’m not sure where it is at the moment) so that I can keep sucking in the bronco-dilators that open my airways and the corticosteroid that keeps my lungs from becoming inflamed.  Recently, my doctor told me not to use the corticosteroid more than twice a day.  I’m trying to comply, but I’d swear that, just a few years ago, I was told I could use it up to four times a day as needed.

Keeping up with medical advances becomes almost second nature.  The same could be said of technology.  I love the ultrasensitive mini joystick that drives my wheelchair, but now I’m told that the Belgian manufacturer has gone out of business.  A new model that’s locally built should be out any day now.  Or so I’ve been told for the past five months.

Similarly, my hunt for a new wheelchair after nearly 15 years has uncovered an alarming development.  The chair my dealer says I need does not come with detachable, swingaway footrests.  Not clear why.  I have always had detachable, swingaway footrests.  They’re great for reducing the overall depth of the chair, if it needs to fit in tight spaces.  They’re great for pulling up to the table that has a central pedestal; you just swing one footrest out of the way and roll in.  They’re great for parking close to your bed, knees against mattress, for… oh, nevermind.  You get the idea.

I have agreed to try the new footrest design; I’m trying to keep an open mind.  But that’s one problem with living as long as I have.  You get set in your ways.  You think you’ve solved all of your problems, only to find that the old solutions might not be available anymore.

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