Disability Mind Games

Image by juanignaciosl via Flickr

This last week has been kind of rough. The combination of the wear and tear from my trip down to Bethesda to visit the NIH and my first cataract surgery (the second is scheduled for this morning) have pretty much knocked me on my ass. My neurologic symptoms have ramped up, the avascular necrosis in my joints has become excruciating, and I'm just plain worn out.

While it's easy to catalog all of my physical discomforts, what's harder to convey are the constant mental gymnastics that those of us who deal with chronic disabling illnesses have to perform.

Receiving a diagnosis of multiple sclerosis (or any degenerative disease) carries with it an intense emotional burden. You're left to not only cope with the your present state of disability and the knowledge that you have an incurable, progressive disease, but also with the unpleasant realities of what very well could be an increasingly disabled future.

Immediately, a newly diagnosed patient is confronted with some mindbending choices. All of the approved MS therapies carry with them some serious side effects, and in the case of some of the most effective therapies, potentially deadly ones (fatal brain infections). Thus, the newly minted MS patient is hit with a double whammy. First told they have an incurable, potentially crippling disease, then asked to go ahead and pick their poison. What a choice to be given to a person whose world has recently been rocked to its core, huh? Choose a drug that has been shown to sometimes dramatically improve the quality of life of MS patients, but carries with it the threat of a horrible brain infection, or forgo it for less effective therapies, each of which also has its share of unpleasant side effects? The pharmaceutical companies paint a decidedly rosier picture of things, but it is what it is. Not exactly like picking chocolate or vanilla.

As the disease settles in, there are dozens of less momentous mental calculations that increasing disability forces upon you to just make it through the day. As disease progression slowly whittles away at strength and dexterity, what had been simple acts become exercises in difficulty and frustration. Lounging around in bed watching TV, and your feet get cold? Well, silly, just go put on some socks! Yeah, right. My right arm and leg are useless, and avascular necrosis has put a painful limit on my range of motion. Putting on socks, when possible at all, hurts like a bitch, and watching myself struggle to complete such a formally mindless act is gut wrenching. Many times, that mental hoop just seems too uninviting to jump through, and I decide to simply live with the cold feet.

The same mental calculus repeats itself over and over throughout the day. Surfing the Internet on my desktop computer, I might get thirsty, but the kitchen is now a long and painful stumble away, and getting into the wheelchair to travel the 30 or so feet to the fridge is a disheartening pain in the ass, so instead I go dry. Besides, if I did embark on the journey to the kitchen to fix myself a beverage, thanks to neurologic bladder dysfunction, I'd have to pee (quite urgently) in 10 minutes anyway, meaning yet another struggle to get up and drag myself to the bathroom.

When I was a kid, my mom used to make me laugh when she'd see me fidgeting and doing the little boy "pee pee dance" by jokingly singing, "Hasten, Jason, get the basin... Plop, plop, get the mop". Yes, mom is quite the cutup. Now I find myself silently reciting that little ditty as I struggle to get to the loo, only these days it's not so funny. Quite often, like the delight of warm feet, the pleasures of a glass of OJ just don't seem worth it.

These kinds of considerations grow exponentially when I'm thrust into social situations either at home or (gasp!) in the outside world. I'm a social person, and love time spent with family and close friends, but the physical and mental toll of such socializing is exhausting. Entertaining people at home is infinitely easier than venturing into the outside world, but still, sometimes I'm just not up to putting my disabilities on display. I can put up a brave front and slap on my happy face, but four or five hours of suppressing a grimace when my hips bark, or pretending not to struggle when trying to eat with only one hand, or attempting to unobtrusively stumble or wheelchair my way to the bathroom before disaster strikes, exacts a physical and emotional toll. A night spent with friends most often leaves me spending the next day simply recuperating. One can't be a hermit, though, and the benefits of spending time with those dear to you usually do outweigh the negatives. Nevertheless, I'm forced to put all of these variables into the equation, and ration my time accordingly. It's as if life can only be lived in small, easily digestible portions.

This leads us then to the ultimate mental calculus, that of the end game. It's never pleasant to think about, much less talk about, but as disability progresses the reality of your own mortality becomes crystal clear. Inevitably, you begin to ponder the imponderable: just when is enough, enough?

There are those who will suffer every indignity simply to remain breathing. I am not one of them. This is perhaps fodder for another post, so I'll keep it short in this one. Suffice it to say that no one here gets out alive, and for me it's all about quality, not quantity. I've no intention to spend much time as a fully conscious mind trapped in a prison of completely useless flesh and bone. This is the ultimate calculation, then, to decide just where to draw that line in the sand.

I've spoken to other patients in much the same boat, and we've all shared similar thoughts. Some have taken the actual steps necessary to facilitate their exit, laying in the necessary supplies. I've not yet reached that juncture, but I do have a clear picture of my point of no return. I fervently hope that I never get there, but simply going through this mental exercise has changed me in fundamental ways. This, perhaps, is the deepest and most intractable psychic wound progressive illness inflicts. I do believe that it's an insult that can never heal...

(Please bear with me while I recover from my second cataract surgery. I'm not sure how long my vision will keep me from the computer. I'm not expecting too long an absence, though. You'll not be rid of me that easily...)