I must admit that before I was diagnosed with MS, I had no idea what it was. I probably never would have known without having it myself or being close to someone who had it. On second thought, I retract the latter part of that statement. The fact is that even people close to someone who has a disease still know very little about it. They just know that you have a disease, and that seems somehow sufficient. This is especially true of a wife, a husband, a mother, a father. The more they know about the disease,
the more it threatens to take you away from them. They want you to stay who you were before, who you had always been. They want it more than you want it. They say, therefore, This does not have to change anything. We will not even acknowledge it, and thereby it will have no power. This is the power of the disease. This is the avenue by which it isolates and weakens the bearer. This is the red carpet laid out before the throne.
I know I have MS because I know the slap-in-the-face sort of difference between now and before. I know because of the amount of time it’s taking to write these few simple sentences, and because even then, even after spending so much time on them, they are still coming out wrong. I cannot find what I mean to say in the way that I mean to say it. The form of it, the wholeness, the cogency, is lying somewhat beyond the sweep of my mind, the mechanics of my tongue, the grasp of language, like an escaped convict, lying somewhere in the darkness, just outside the beam of the searchlight. I intend to think, and yet I stare, and then remember and think again. And think and think and think.
This is because the myelin—that sheath of tissue that protects the nerve in much the same as as rubber coating protects a high tension wire—has been damaged or destroyed, and the lively nerve exposed and attacked.
I remember when my mother’s Alzheimer’s was first becoming debilitating for her. I remember how she would pretend to have understood something or recognized someone—words, a familiar face, the name of an object. I could see that she was pretending, though she tried very hard to cover it up. She tried with all the skill she had learned in life—this anyway, the talent for prevarication, having remained with her while the rest of her mind fled to the last galaxy in the universe, save one or two.
Now I’m getting a little taste of that for myself. It is a desperate, embarrassed sort of feeling. It is the feeling you have when you suddenly realize that you’ve misplaced something very important. The car keys, for instance. Or your 2-year-old son.
And so you duck, you dodge, you fain distraction, you lie—because all you need is a little more time.
Wait. It’ll come to me. It’s right on the tip of my tongue.
The most definite thing I can say regarding my knowledge of multiple sclerosis in the bliss of my ignorance is that it was a disease that other people get. I suppose this must be the most comprehensive definition for any disease a person does not have.
I think I may have imaged back then that MS was some kind of genetically inherited crippling disease. I imaged children being born with it. I imagined wheelchairs and twisted limbs, spastic motions of the head, retardation, vegetation.
As a young man, I worked for a short time with two children who had muscular dystrophy. I was doing temporary work for the school district and I was called to fill in as a physical aide. I helped the boys with various mechanics in their classrooms. I helped them transfer from wheelchair to toilet and back again. I helped them to exercise their useless limbs in the afternoon. I had no idea what I was doing.
The point is, I may have thought that MS (multiple sclerosis) was something akin to MD (muscular dystrophy). After all, they’re only one letter apart, right?
Obviously, my ignorance was complete. But I think it is probably not far away from what most people imagine. It is another of those diseases summed up by two or three letters—MS, MD, VD, HIV, STD, ED, and so on. One may imagine more or less severity associated with this one or that, yet there is still the thought that this set of initials denotes something deadly, something life-compromising, something vaguely frightening or distasteful or even repugnant. Those who are healthy generally tend to avoid those who have something wrong with them.
When I was a boy it was popular to call someone you did not like an “MR,” which meant, of course, a mental retard. By extension, there must be something of a retarded nature about anyone with a two letter disability/disease/dysfunction. We suddenly find ourselves separated from the rest of the human race by two or three characters of the alphabet. It doesn’t take much, does it?
We are now different, no longer just another person in a general sense, like anybody else, but instantly peculiar, shaken loose, alienated, particularized, cubby-holed, categorized, summed up and judged and done with in the most amazingly facile manner.
I am not longer simply Richard, but Richard-the-guy-with-MS. I do not doubt that this comes first in descriptions made by casual acquaintances or complete strangers. Our neighbor is really nice. He has MS, you know?
Oh, he’s been coming to this church for a year now. He has MS, you know?
Oh yes, she got married last year. Her husband has MS.
Is it not so?
No wonder many of us prefer not to mention it. And this in itself is another of the pitfalls associated with having MS, or any other 2-letter disease, for while we do not want to be limited in the minds of other people than we already are because of the disease, we do at the same time often wish for our misfortune to be acknowledged. We want people to appreciate that we might sometimes experience shortcomings that are none of our fault. We do not want pity, but we would like comprehension.
But pity, not comprehension, is what people are particularly good at. Pity does not ask for knowledge, but means only to express itself—and this only for the sake of the person expressing it. For he has then done his duty, the morally and socially appropriate thing, and so he may continue on his way.
One night not long ago my wife said to me that she did not think of my as someone who has MS. That’s good, I figure. And of course it’s pretty natural—because she knows me, the whole person, the me who is essentially and only Richard, and sees that I am the same with or without MS. It did not suddenly turn me into an alien or a squid or a giant ant. Oh, she knows the affects of the disease, because she sees them, but it goes no further than that.
Man and wife do not, after all, become one flesh, for she will never bear my disease in her flesh nor experience it first hand in her body.
And yet, I wonder what she meant by someone who has MS? No matter what, the notion of an essential alienation persists. We wear it now like an invisible emblem, the scarlet letter, the mark of the beast.
It so happens that I have a red tattoo of the letter A on my right arm. It stands for adultery. That is a brand that persists as well.
Transposed, however, through the center of the A are the Latin words Omnia Vincit Amor. It means Love Conquers All.