The Consequences.....thus far

I can report with some relief that my worst fears about MS have not been realized. My family hasn't self destructed and ten years down the road I'm still hobbling about, albeit, very unsteadily. Sam's birthday makes it easy to keep track of the passage of time. To the extent that there is any meaning or certainty in such delineations, Doc Brooks has determined that I have the "secondary progressive" variety of MS. This type is characterized by an incremental, across the board decline, only it's speed being uncertain. I've certainly gotten worse, but the slow rate of progression has allowed me to acclimate a bit at a time. Monitoring my experience with MS is kind of like watching my children grow. I don't tend to notice time hurtling by until the momentous events, they graduate from one thing or another or they come for the car keys. In my case the momentous event is the issue of walking. It's obvious that I'm struggling to remain ambulatory (as those of us conversant in the lingo of the lame and infirm like to term it). I'm teetering here on the edge. There have been the harbinger occurrences, such as when I began using a cane ( nothing more than an accessary I told myself at the time, a jaunty walking stick), being fit for a leg brace( it would likely be perceived by others, I told myself, as the temporary remedy to a "running injury"), and most unsettling of all when I succumbed to the purchase of a mobility scooter ( well, I thought aren't those hi tech Segway mobility things all the rage?).

The trajectory of my particular malady is impossible to predict. Some decline quickly, others slowly. Some appear to plateau and stand pat. Thus far I suspect I'm pretty much in the middle of the pack . Ever hopeful, I inject one of the new FDA approved medications that are thought to slow the progression of the illness. These drugs, at roughly fifteen grand a year, are some pharmaceuticals marketers dream. A case can always be made that things could be worse, and no one wants to look back at an opportunity lost from the vantage point of a wheelchair I suspect that my prognosis is only partially related to those mysterious internal misfires. I have a friend, about my age, diagnosed at about the same time. His decline has been precipitous. What I have that he doesn't is health insurance, peoples who love me and enough money to live on.

Because MS interferes with the flow of neurons in the central nervous system there are mental as well as physical problems. Some are obvious to others, some only maddeningly to me. I sometimes experience what I can only describe as "befuddlement" when attempting to organize my approach to relatively uncomplicated daily routines. Though usually not obvious to others, sometimes even as I mimic rapt attention, (graduate study in the helping professions devotes much time to teaching this vital skill) I'm struggling to stay awake. I've had a rather troubling inclination to fall asleep at red lights, and more than once I've gone face down, narcaleptic, into my mash potatoes. Such occurrences tend to upset my children.

I'm also given to dramatic, swooning, slow motion, falls that I find impossible to interrupt. When this happens I shun offers of assistance almost before I hit the ground, immediately deny any harm done, feign being amused, and move off as quickly as possible to lick my wounds in private.

Never what you would term a "handy" fellow, I'm fast becoming utterly useless to the repair of anything. Relatively simple tasks regularly confound me. And, what compounds this is that my awareness of a departed capability seems to lag way behind its actual departure. I'm regularly gathering the tools and materials for a task only to discover that the requisite capacity has gone by the boards. I am however, pioneering some novel new handyman approaches. The most recent was my furious attempt to stab a woodscrew into it's required location.

The trouble with ineptness is that it leaves a person ever more dependent on the benevolence of others. I really hate this and always have. I've never liked asking for help and for the most part I haven't had to. It changes things between me and others. The usual reciprocity that attends friendship is thrown out of balance. The usual division of toil in domestic life is upset. More often than not I'm the guy looking for help and I worry that even the most selfless will eventually tire of this.

Illness has also eroded my confidence. I used to feel that the world was my oyster. I was confident that you could fling me from a moving vehicle anywhere on the planet and I'd do just fine. I don't feel this way anymore. In fact, the world looks increasingly fraught with foreboding. I'm aware that I could easily get myself in a serious pickle. A while back, traveling alone, I experienced a total, heat induced meltdown in a Hanoi hotel. Unable to summon the strength to get off the floor, I thought it only a matter of time before I was stuffed and placed on public display alongside the timeless Uncle Ho.

There are of course problems of a more personal nature. I'm given to unexpected periods of melancholy, and more frequent periods of surliness. I could tell you about having to pee, pee, and pee some more, and how it mortifies my children when I pull over anywhere and everywhere to do this. I could even admit to you that I had peed in my trousers on a couple of occasions when there were no alternatives. The latter experiences have aided me greatly in cultivating the virtue of humility. Or, I could tell you how the diminished transmission of neural impulses from my brain to my hands makes it difficult to fully appreciate the silky smooth softness of my wife's breasts. I could tell you these things but such disclosures would clearly be inappropriately confessional.

Every three months my illness and I are thoroughly scrutinized for evidence of decline and the results are tabulated in my ever expanding medical chart. My cognitive abilities are probed, and my various fluids are drawn. My muscles, both small motor and large are tested for strength. A perusal of these summaries over time confirms that I've been on a slippery slope. The one undiminished bright spot appears to be my world class tongue. That's a right reader, I possess an extraordinarily mighty tongue. It's something of a mystery how my tongue has escaped the fate of its neighbors. My wife speculates that it may reflect the efforts I've expended over a lifetime in forming at least three words where one would have sufficed.

The reader may wonder whether the author sees any positive aspects to his change in life circumstance. Oddly enough I think there are some positives. The presence of those pesky lesions provides an explanation for any bit of whacky behavior I may be inclined toward. Though arguably, I've always been a bit off kilters, I previously had no plausible explanation for my peculiarities. Lesions have been a Gods send in that respect. As time goes on, I even find myself feeling a bit more kindly toward those pesky lesions. Sometimes I think I can actually feel them weighing upon my thought processes and in an odd way I think they have made me a more creative person.

Friends and acquaintances sometimes tell me that they admire the way I seem to have accepted and adjusted to my illness. Such comments make me more than a little uncomfortable. The observation is usually based on my good humor of the moment, which as those who live with me will attest, waxes and wanes then waxes again. And besides, who wants to be admired for not appearing to be an emotional basket case. Accepting such well meaning accolades seems to carry with it the obligation that I maintain a stiff upper lip. I imagine I will have to relocate should I choose to revert to my more characteristic, whiny self. When fielding such comments I generally shrug modestly and mutter something like "waddya gonna do." And that, in fact, pretty accurately sums up my thinking on the topic. Acceptance would be a considerable overstatement but I am pretty much reconciled to the fact that I'm stuck with this and it's almost certain to get worse. I'm certainly no fonder of my collection of lesions but I'm less inclined to confuse them with my life than I once was.