A friend of mine has MSA.  Multiple Systems Atrophy.  It’s a disease.  Kinda.  The name is really just a descriptive rather than a proper noun-with-medical-science-Latin-roots.  It just puts a name to the symptoms.  It doesn’t describe the cause or even, for that matter, whether it is a disease, a syndrome, a condition, a disorder or what.

The name bugs me.

And, like, what the hell is atrophy anyway? Just aging spelled differently?  Aren’t we all just atrophying in one or two organs or systems as we age?

Regardless, I think MSA is very misnamed.  At the very least it should be called Rapid Onset Systems Atrophy.  It is more accurate and ROSA is a better acronym anyway. 

“He’s got ROSA!” 

Helps with the denial, ya know?

And that nomenclature thing is just the first thing that bugs me.

The second thing that irritates, of course, is that this horrible thing has been inflicted on a friend of mine and his family.

It is gradual, relentless and incurable.  So it is terminal.

It takes about three years, give or take, for things to deteriorate enough for everything to just up and quit.  But systems are noticeably deteriorating on a monthly or periodic basis during that time.  Grieving, suffering and adjustment-to-something-that-cannot-be-adjusted-to really starts upon hearing of the diagnosis and it just doesn’t let up.

It is a special kind of hell.

This is clearly one of those things that one immediately exclaims, “Geez, that is so unfair!”

‘Course, mature people like me might (if they are stupid!) immediately follow that up with, “Yeah, well, life is not fair.”  Glib.  Stupid.  Inadequate.  Insensitive.  Cruel. Definitely non-empathetic, but mature, I guess.

‘Cause life is definitely not fair.

And, worse, it is much too easily said if one is not the sufferer. Or their partner.

So, don’t ever say that.

Having said that, anyway, M and D are being as brave and stoic as anyone can possibly be.  More, actually.  He invented an assistance device for himself and had it built. As I write, he is looking to see if it can be manufactured to help other ROSA sufferers.

It may not seem like it from my description so far but, once you see this disease, you can’t help but see their efforts as heroic.

What can I say?  What can anyone say?  How can one be empathetic?  How can one relate?

And, let’s be honest……….trying to relate or be more empathetic is brutal.  There is a natural reluctance to even try to ‘get close’, ‘to feel his pain’.  It is just too horrible.  I really don’t want to share that pain.  I really don’t want to know.

M is a nice guy, a good and longtime friend.  He doesn’t deserve this and, because of his discipline in caring for himself over the years, no one expected that he would even show his age at this point.  Put bluntly, I fully expected him to outlive me by twenty years.  The tall, skinny abstainers of booze, tobacco and excess usually do pretty good on the longevity sweepstakes.

We Celtic, druid-types, shaped like a potato and inclined to excess in everything but exercise tend to extinguish a bit sooner.

Which is fair, I think.

Think – pasty, white Brit eating ‘crisps’, smoking and drinking beer while watching sports on the telly and you’ll have a sense of my family tree. We don’t deserve to live a long time.

And what would the point in it, anyway?

M, in stark contrast, is more like a tall, white, Clint Eastwood-spirit-shaman, almost-vegetarian type, with a Willy Nelson kind-of-thing going on.  Easy-goin’.  Funny, too.  Smart.  Creative.  And cerebral- if not just a smidge eccentric on that score.

He deserves better.

We’ve known him forty years and, it seems, we met a couple of times even before the early onset of friendship.

Sally and I are both close to him and his wife even tho, because of our lives, our previous jobs, our interests and now the distance between us, we only connect maybe twice a year.

And I am ashamed about that, too.

“Geez, Dave, why are telling us all this?!”

Sorry.  It is just that I promised.

M showed me a u-tube last night about MSA and asked that I ‘pass it on’ to raise awareness.  I said I would.  Please – if you can handle it – watch the video presented on http://www.msaawareness.org.

I understand completely if you choose not to.  This is a bigger challenge than I am capable of handling.  Or even understanding.  One viewing is enough. One friend is too much.