HOME
Message Board
CURRENT COLUMNS
- Editor's Corner
- Blogfest 2005
- Commentary
- Commentary Too
- Down The Middle
- Faulking Around
- Global Warning
- This guy walks into a bar...
- Investing 101
- Faulking Opinions
- Off The Rail
- Words
ARCHIVES
LINKS
CONTACT US
 | |||
This guy walks into a bar and says... - Mar 19, 2005 - Printable Version
- This Will Prove to be a Serious Nuisance
by Ken Shade
When my neurologist came in my hospital room, a few years ago, to give me my diagnosis, He did so with an understatement which is characteristic of his stereotype of Englishman. You see, Dr. Simon Farrow (No, I'm not making that name up.), late of Oxford, wears a vest. He was probably born wearing a vest. He is so calm, stiff and understated that I'm sure his turds come out wearing little vests. If you watch a lot of old movies, you're bound to come across a Farrow-esque figure. He's the head of the safari party who says "Oh, bother!" when a rhinoceros stands on his chest. Guys like him are the stiff-upper-lip type who built the British Empire. Anyway, he walked right out of the Victorian era, into my room, and said: "Mr. Shade, it appears you have Multiple Sclerosis. This will prove to be a serious nuisance."
Had it been anybody else, I'd have thought that he was using the words "serious nuisance" in order to avoid using words like "potentially fatal," "degenerative," "blindness," "paralysis" and "incurable." I would have thought he was trying to soften the blow. However, having sized-up Dr. Stratford-upon-Darvon, I knew he must have meant exactly that; that it would prove to be a serious nuisance.
Of course, I had no idea what he meant. If you put the words "serious nuisance" on one side of a balance scale and the words "Multiple Sclerosis" on the other side, you'd expect it to tip dramatically.
Now that I've lived with this thing for eighteen years, I know exactly what he meant.
One thing that he meant is that I would cease to be "Ken the comedian," "Ken the daddy," "Ken the history buff" or "Ken the guy next door." From that day forward, I became "Ken the guy with MS."
At first, I tried to avoid it. I tried not to talk about it. I tried to obviate making it a factor in anything I did, or in any conversation I had. Some would say I was in denial, and they might be right. I said I was "trying not to become my disease." Whatever the motive deep down in my heart, it was stupid to try. There was no way I could have a conversation with anybody I knew without having to answer a million questions about how I was feeling. There was no way to meet a new person without having to explain my crutches or scooter. There was no way I could enter a new situation without having to deal with the biases people have about the disabled. NOTHING was the same, and pretending everything could be was foolish.
This article is an example. I didn't want to write it. I wanted to leave the subject alone. I am tired of talking about it. I don't want to sound like a whiner. The pages of The Faulking Truth is a place where I wanted to be simply "Ken," not "Ken the man who can't take a dump without mechanical assistance." But, there was this Mark character. He mentioned more than once that he'd like to have a piece about life with MS. He said he thought people would be interested.
I know that's true.
I have had to answer so many questions, and dispel so much misinformation about it that I have come to realize that MS is a subject that many, many people will never get tired of. I talk about it more than any other single thing. I'd rather talk about why George W. Bush is an evil bastard, why my twelve-year-old son acts like a cretin, the Beatles, Jack the Ripper, the Salem witch trials, comparative religion or which underarm deodorant is most effective. Still, it's MS that people ask me about the most.
Mark wanted the column. I know he's right about the level of interest, so here it is.
Having to talk about MS is almost as annoying as what happens when people don't ask questions. Recently, I noticed that my mother was asking more questions than usual about it. She didn't seem to accept my answers, either. I found out that she was calling other people who know me, and asking them how I was doing. Finally, she couldn't take it anymore, and directly asked me if I was going to die soon.
I was amazed and stunned. I asked her where she got that information. It turns out it was something my sister told her. My sister, the only member of my family who doesn't pelt me with questions, probably should have been asking a few. She got the idea into her head that all people with MS die from it, and soon, and ran with it. It would have been easier to answer my sister's questions than it is to deal with my mother, now. My mother, always inclined to see past the silver linings, won't fully accept my febrile assertions that I am "OK."
I put "OK" in quotation marks because it doesn't mean the same thing as it would mean if most of you said it. When a person with any incurable, debilitating disease tells you they are "OK," it means either that they don't want to talk about it, or that they have become so accustomed to the problems they face every day that they no longer consider them worthy of mention. In this second case, "OK" means: "Nothing out of the ordinary to report." I have told people I was having a good day, then later realized that it was not a good day at all. I may have wet my pants in public, fallen over a curb, not slept for several nights because of spasticity and/or been unable to taste my breakfast, but I said it was a good day because those things are part of my everyday life. I would only have said it was a bad day if things were really horrible.
For those of you who don't know, allow me to give you a brief description of MS, and what it does in your body.
MS is an autoimmune, not autoerotic, disorder. Our brains and central nervous systems have a protective coating called myelin. Myelin keeps our immune systems from attacking our brains and spinal columns. My immune system has identified my myelin layer as an intruder, and attacked it. Wherever the myelin is eaten away, scar tissue forms. This causes short circuits in neurotransmission. It's like that lamp cord you tried to fix with electrician's tape. The light flickers, doesn't it? If the damage is bad enough, the light goes off forever.
Well, quite a few of my lights flicker, and a disturbing number have gone out forever.
One of the most annoying thing about having MS is that you meet a lot of well-intentioned people who think they know a lot about it. People are always coming to you with crackpot cures and causes, and I have to be polite to them.
Here is a list of things I have been told are the cause of my condition:
Aspartame
animal fats
air pollution
un-repented of sin
my imagination
selfishness
allergies
lack of exercise
engrams
parasites
a really bad sinus infection
food additives
government germ warfare experiments gone awry
Here is a list of things I have been told will cure me:
Playing the harp
Mannatech
acupuncture
massage
ceasing to drink Diet Coke
echinacea
vitamin C
magnesium
a vegetarian diet
an all-meat diet
the "Neolithic" diet
bee stings
radio waves
melatonin
marijuana
yoga
meditation
None of these things are based on good science. Some of them are based on no science at all. None of them have proven at all effective, and some of them are dangerous. Still, I have to respect the people who came to me with these things because they meant well. They didn't know much about MS, but they meant well.
Now, class, lets do a quick survey of my body, and assess some of the fascinating ways it has gone funny since MS came to call.
Lets start at my feet.
My right foot is ataxic. That means it turns in severely. Like the uncle for whom I am named, I was already pigeon-toed before the MS came. Now, my right toes point directly at my left ankle most of the time. When I walk, it drags on the ground. I buy a new pair of shoes whenever the toe of the right shoe is worn out. The left shoe is still in pristine condition, but I have to buy a new pair because there are no Right Shoes "R" Us outlets in my area. If any readers know of people who need at vast supply of size 13 left tennis shoes, please let me know.
Now that I think about it, maybe I'll send them to Heather Mills.
The soles of my feet, as well as the palms of my hands, are almost insensate. (There are other parts of my body that are insensate, but we'll get to that later.) If I were on Fear Factor, and I had to stand on an asphalt parking lot in Phoenix, I know I'd be the winner. The down side to that is that I have cut myself several times without knowing it. I discover it when I see blood on the carpet, and start searching the kids for gaping wounds.
My legs are weak. I used to have the world's strongest legs. They had to be to carry a body like mine around. I could max out any leg press machine, in any gym. Now, my legs are just strong enough, on most days, to get me to a point a few yards away. I use crutches most of the time and, for longer excursions, I use a scooter.
That scooter is a problem in itself. I could not live without it, so it represents freedom to me. However, to people whose job it is to move or wait on me, it often represents a pain in the ass they don't want to deal with. They look over my head or sneer. Sometimes, they tell me to get out of their way. My trip to the U.S.S Arizona Memorial was almost ruined by two young soldiers who clearly resented my imposition. In fact, my whole trip to Hawaii was marred by hostility. I discovered that the aloha spirit isn't extended to people who are annoying because they're disabled. A Polynesian friend explained to me that in many cultures, Polynesian among them, the expected role of the disabled, traditionally, is to stay in the house and out of the way. I violated that code.
I have been places where the reaction to my scooter is quite different. In South America, where electric scooters are never seen, I was followed by crowds of people. The scooter made me a celebrity. Tooling down the Malecon 2000, in Guayaquil, I was surprised to look around and see about fifty people walking ten feet behind me and chattering excitedly about what a fascinating contraption el gringo gordo had. I felt like a star. I felt like Michael Jackson. In fact, I felt so much like Michael Jackson that I sexually molested two young boys.
Among the Japanese, my scooter is respected, as is my desire to travel in spite of my disability. Once, when an elevator went out, I was confronted with a long flight of stairs. A lot of quick whispering was done, and suddenly six Japanese men appeared from out of nearby restaurants. They lifted my chair and headed down the stairs chanting "ICHI! NI! SON! YON!...ICHI! NI! SON! YON!"
It was beautiful, but I digress.
This whole thing about my scooter started with a description of the things my legs do, and don't do. Two more things that they do are twitch whenever they want to and go rigid, as though they are made of wood. These two quirks make driving exciting. I've never hit anybody or received a citation, but I have attained ungodly highway speeds when my right leg went straight and mashed the accelerator to the floor.
Now we have to move up from my legs. If you are at all squeamish about scatology or frank sexual talk, quit reading now.
People have asked me which physical ability that MS has taken from me that I would want back, if fortune allowed. It would not be walking, running or even regaining my lost vision. I'd elect to be able to shit the way I used to.
I took it for granted, back then. Today, I'd cherish every defecation, every "plop," the way you cherish your child's first words.
My colon used to be like yours. It sat there and didn't make itself known. It quietly went about the business of peristalsis in a humble, workmanlike manner. Ever since it decided to retire from rhythmically contracting to get stuff through it, I have been a walking massive fecal impaction. (I have registered the phrase "massive fecal impaction," so if you want to use it as a name for a punk band or fast food outlet, you have to pay me.)
Not long ago, a friend and I were making fun of colonic hydrotherapists. Now, I can't live without mine. Once a week I go to an office where an attractive Argentinean woman puts a long nozzle up my butt, repeatedly fills me with water, and drains me. If that sounds sexy to you, let me tell you that it isn't. It's bad anyway, and the fact that she's hot makes it worse. It works though. After the first one, I weighed fourteen pounds less than I did when I went in.
I had seven more visits in the next month-and-a-half.
Insert your own joke about how I am full of shit here.
As I mentioned, peeing in my pants is pretty common. The word "peeing" is not an apt description, though. What happens is not like a normal pee. My bladder suddenly contracts like a uterus in labor, and urine shoots out of me hard enough to peel the paint off a Toyota, which I have actually done. A friend once tried to tell me that it is the same thing that happens to her. She's over forty, and has a leakage problem. I couldn't make her understand that this is a different pathology. This is physically painful, and very difficult to hide. It took me years to develop a system for dealing with this, but by use of an awesome variety of appliances, jugs and subterfuges, I have managed to learn how to live with it.
Ladies and gentlemen! We will now satisfy your voyeuristic lusts! We will discuss MS and sex!
I mentioned earlier that there were other parts of my body, beside my palms and soles, which have gone numb. Guess what? My little soldier is an unfeeling bastard. He functions, often without Viagra, but he feels nothing. Orgasms are a release of tension, but they feel like donning a new slip-on shoe wearing thick socks.
When your primary erogenous zone goes dead, you have to be creative. Since my creativity and my sex drive are both remarkable, I've done a good job of finding other ways to have fun. I have as much pleasure as other people, albeit achieved in ways that would surprise Cosmopolitan.
I can't even have good fantasies, anymore. Back in the good old days, I could fantasize about any woman, in any situation. I often did. Even though I have never been a great-looking man, I have been able to come up with scenarios that placed me in bed, or antigravity chamber, with any woman I fancied. I could pretend they wanted me. The things I imagined the night I interviewed the Go-Go's in 1981 would get Mark and me arrested if I were to include them in this article. I was able to do the mental contortions that made me, in my fantasy, irresistible to all five of them. Now that I've been watching myself fall apart for so long, I can't imagine myself as being desirable. I can't stretch my imagination enough to daydream that the little redhead that bags my groceries would strip naked and ride away on my scooter with me. Some women still do find me interesting, but it mystifies me. I can't even fantasize about them, the women who are attracted to me, without cracking up laughing.
The fatigue of MS is hellish. People who do not have CFS, MS or some other pathological exhaustion cannot imagine what I mean when I say that I'm tired. I get frustrated and grumpy with people who complain to me that they are tired. I remember what I used to think "tired" was, and it's nowhere close to what it means now. Woe be unto the poor sap who asks me to do something for him because he is too tired. I'd like to throw Thor's crutch at him.
There are a lot of other physical problems. Too many for me to even remember until they happen. MS is an odd disease. The one that concerns me most, though, is the loss of my sight. In one twenty-four hour period, about two years ago, I lost more than 90% of the vision in my right, and about 15% in my left eye. It's a loss of field. With the right side, I am looking at the world through a dark gray cotton ball. On the left, the cotton is only at the top and bottom of my field of vision. I know that I am more than half blind, and that I am one exacerbation away from Stevie Wonderland by Night.
I spend a lot of time with my good eye covered. I'm practicing life as a blind man. I am answering the question: "How would I experience this blind?" I have made a list of things and places I want to see before it happens, and I am working on that list. I realize that it may never happen. MS is so unpredictable. But, I know my lost vision is never coming back, and I am fresh out of spare optic nerves.
Now we get to the thing about MS that scares me most, even though it affects my life the least, for now.
MS often impairs cognitive ability and speech.
When I was very small, my parents started noticing that my mind worked differently from most other children. I have impressive capacities for memory and verbal expression. Memory and verbal skills are only two aspects of intelligence, but they are ones that are easily noticed. I know the lyrics to more than 2000 songs. I can remember conversations I overheard when I was six-months-old. I am a fiend at trivia games. I have been in more than sixty plays, and I remember almost all my lines from all of them. My vocabulary is quite large, and my diction is outstanding. I am at home speaking before crowds. It is these abilities that helped me score highly on IQ tests and qualify for MENSA.
I never know where I last put my car keys, but that's a type of cross-sectional intelligence that I do not possess.
Anyway, when my parents started to notice, they made sure that my brother and I each had something to feel good about; that we knew who we were. "Kenneth is the intelligent one. Shannon is the athletic one," about sums it up.
This was unfair to my brother, who is a very intelligent fellow, and to me, who was a fairly good offensive lineman.
We both bought into it, though.
I bought into it deeply.
I valued my status as "the intelligent one." When the school wanted to move me ahead a grade or two, I made sure everybody knew it immediately. I was intelligent, and intelligent is who I was. My entire identity as a human being was tied up in that one fact. If I didn't have that, I had nothing. I even reached a point in my teen years where I decided that I was all intellect; that I had been born without a soul. I didn't realize that the inability to understand my emotions was typical teenage stuff. I thought that God had made a trade off: "You may have this good mind, but in trade, I am leaving you with no soul."
I got over that notion, and its heinous ramifications, in my twenties. I only tell you about it to show you how deeply I identified with my brain.
To a large degree, I still do.
Now you tell me I have this disease that is damaging my brain? You say my memory; my cognition; the things that make me who I am; the only thing that has ever made me feel valuable may be lost? Who will I be, then? Will my friends know me? Will there be any sign of Ken in my eyes? If I can no longer remember twenty numbers in sequence, forwards and backwards, will I still have value to anybody who loves me? If my vocabulary becomes, GASP, average, who will think I'm special? Who will love me if I fall? If my speech is so slurred that I can't be understood, will people turn away in embarrassment and frustration?
These are the fears that keep me awake at night.
I am forty-five years old, so I am just starting to forget things. This is normal. Whenever it happens, though, I ask myself if this is it. I wonder if the MS has attacked my brain. There are lesions on my brain already, but they're not in the places that affect memory. I've had MS for at least eighteen years, and I'm safe, so far. There is cognitive loss in fifty-three percent of MS patients. Are the odds on my side?
I have never expressed these fears to a single person. Here I am telling thousands of strangers. Why? Because I feel a sense of urgency. If there is a blessing to any threatening, incurable illness, it is that you begin to see that life is something that must be lived TODAY. For me, nothing is guaranteed.
But guess what? Nothing is guaranteed for you, either. I know the name of the reaper that lurks in the shadows on my life. Most of you don't know the name of yours, but he's there. Our lives should be lived in a way that will allow us to say at the end that we didn't waste any time; that we took nothing for granted.
For all of us, not just the sickies, there is urgency to LIVE.
Multiple Sclerosis may be a serious nuisance, but so is sitting around like you're already paralyzed.
As James Thurber said: "The claw of the sea-puss gets us all in the end.
Voice your opinion on our message board (you don't have to sign up to post).