Things that remain

Ron Carleton

I am extremely fond of Kim, who has done me kindnesses too many to number; but there are times when "dense" is about the only word that applies to his insensitivity. Like when he asked me what I had actually lost through multiple sclerosis. He is a very upbeat, positive-thinking guy, but this time. . . .

His rather stupid question made me think long thoughts, however. I have plenty of time to think, and nothing else to do when I am too weak even to work on my writings and when more channels on the television seems to mean only a larger assortment of junk. What exactly have I lost through this illness that blackens my existence? Although it does not cause severe pain in my case, and may well not shorten my life, MS has cut off the sources of joy and made accomplishment something others experience.

That is a very depressing line of thought. In the interest of maintaining what rags of sanity are left to me, I will consider the matter from the positive point of view. The query thus becomes: "What do I still have in the straits to which I am reduced?" When I think about it from that angle, several answers come to mind.

The question takes on a certain interest because of an acquaintance, thankfully not too close. Let's call her Marj, the embodiment of the bad example. She has had the affliction probably for 30 years, although wheelchair-bound only the last 10 or so. Her upper-body strength remains good, so she can do her transfers unaided from bed to wheelchair to toilet or tub. She must have a fair amount of energy because it takes a lot to be as angry as she is.

Her husband earns a good salary, so if she were the least bit reasonable, there are many things they could still enjoy. As it is, they have no friends, since no one will put up with her ungracious ways. No one, including her children, can tolerate her in their homes because she drives her wheelchair into the walls (deliberately, to all appearances), wrecking anything not indestructible.

They can't even go out for a meal in a restaurant because she finds nothing better to do than complain to anyone within earshot (and she has a good, strong voice) about what a terrible existence she has and how badly her husband treats her. He is still there, presumably in the memory of past happiness--he is a handsome, charming man who could easily do better.

There is commitment, if you like--looking after that cantankerous old beast instead of parking her out of sight, out of mind, in some nursing home where hapless aides would have to put up with the abuse she hands out so freely. She highlights the power that is still mine, namely, to choose to concentrate either on my losses or on the things that remain.

The inexpressible warmth of love is still mine to enjoy, although the ways in which I can exercise it are limited. My beloved wife, my precious children, other family and friends are with me still. I can participate by prayer and counsel in their doings, and vicariously enjoy their triumphs.

The unending interest of intellectual pursuits and the pleasure of words are still mine, my articles and stories being my chief creative outlet. If there is only one thing I can still do, namely writing, I am unendingly grateful that I like it. What a trial it would be if I didn't like the only activity I can still perform!

The heart-stopping wonder of beauty in its myriad guises still enthralls. I am intensely grateful that my vision has not been seriously affected, as it is in some MS sufferers. There have been a few episodes of blurring and double vision, but they have subsided so that looking at things (people, flowers, countryside, games, TV) is a never-ending source of pleasure.

The wonder of music still charms. Although I can no longer play or sing (one of my most grievous losses), listening to the melodies and harmonies still enchants. And I can still write music, although the search for someone to use my product has been almost fruitless.

The infinite variety of tastes and textures in food can still be enjoyed, even if the word has a new, reduced meaning compared to the days when I was whole and happy. Although one hears anecdotes about people who treat MS by eating or not eating something, no diet has been shown to have any consistent effect on victims of the disease. That being the case, I enjoy my food.

If the list of things I can do gets shorter and shorter, over that I have no control nor, apparently, influence. No matter what the ravages of the disease, some decisions will remain in my capacity. If only an occasional instant of consciousness is mine, I will still have to decide whether I will use it to think about something beautiful and smile at someone I love, or rail at the injustices of fate and yell at anyone unfortunate enough to be near--doctor, nurse, spouse, child or friend. What may happen if I lose my mind and soul to dementia is entirely out of my control.

Marj could . . . . Marj could do many things, but she won't. By God's grace, I plan to enjoy what can still be enjoyed, and to do my best to make the people around me happy. She has seemingly chosen the bitter solace of being a source of grief, thinking, "I must be important--look how much unhappiness I can cause." So many people in this world, like Marj, make not the best, but the worst, of their situations. I do not like having MS, the gradual, unending loss of joys, pleasures and capacities; dying over the years by millimetres, each degradation requiring a new grief process. But that is not anyone's fault, including mine. I try to live in that understanding. Does that constitute "laying down my life" for others, as the New Testament has it? I trust so, because, in any case, it is all I can do.

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