Saturday, April 28, 2012

What Is It Like (an excerpt from Everyone Here is Jim Dandy -- the book)

What is it like?

It is not suffering as such that is so deeply feared but suffering that degrades --Susan Sontag, AIDS and its Metaphors

In May 2007 I was diagnosed with multiple sclerosis.

I woke up one morning, May 1st I think it was, and I could not feel the toes of my right foot.

But could not feel is actually not right. It’s not that I couldn’t feel the toes, but that they just felt wrong. They were numb, starting in the big toe most profoundly and then spreading on down to the pinky. They were numb, like toes get when you’ve been out too long in the snow, only they were not cold in the least. It was, after all, the beginning of the summer season. They were numb and they were tingling—again, the way it feels when you have been out in the snow and then have come inside and begun to thaw out.

“I can’t feel my toes,” I said to my wife.


“This is weird. I can’t feel my toes.”

“Walk around,” she said. “You probably slept wrong.”

Slept wrong, yeah. Or it’s all in my head.

But no, not only were the toes numb, but the numbness was

growing worse by the minute. Soon the numbness, the tingling, had begun to spread onto the top of my foot, and then it jumped over to the left foot as well, one toe tingling, then two, then all.

I shouldn’t have let my feet get so close to one another. Good Lord, now my right foot has infected my left.

Well shake it off then, just like a football player. Walk around, jump up and down, massage those muscles.

What? Toe muscles?

By the time another hour had passed, my right leg was numb to the knee, and the tingling that had begun in the left big toe had conquered the whole foot and pressed on into the ankle.

“I can’t feel my right leg,” I said.

“Well, what did you do? You must have done something.”

What indeed? I had been fine when I went to bed the night before. I had slept through the night, just the same as usual. So what had happened while I slept? Perhaps I had been bitten by some sort of deadly arachnid. I checked my feet, my legs. No welt. Perhaps I had been bitten by a poisonous snake. A ridiculous notion, that.

Then what?

“Honey, my crotch feels weird. My ass feels weird. I mean, I just now went to the bathroom and—“

“Call the doctor,” she says. “Spare me the details.”

So that was how it started. An MRI and a lumbar puncture later I was diagnosed with multiple sclerosis.

The funny thing, as I was to find out soon enough, is that the problem was not in my toes. It is in my brain.


What is MS like?

Having MS is like suddenly having to go from DSL to dial-up.

It’s like trying to do internet research on a laptop with a virus. The damn thing keeps freezing. Your brain becomes inexplicably wedged between one thought and the next—trapped in an endless loop—little hourglass on the screen—thinking, thinking, but never arriving.

Eventually you have to give up and reboot; which is to say you have to take a nap and hope that a little rest will restore a few of the washed out bridges.

MS is like trying to write a book on a stone wall with a dull three penny nail.

I am the man in the iron mask. The birdman of Alcatraz. I am tunneling to China, tunneling to eternity. I am locked in the Tower of London. Off with his head! What head? What hand, what foot, what leg? I am the man of adamant, turning to stone. I am a phantom pain, the itch in an amputated limb.

What is MS like?

It is like starting life from scratch, every day, every hour. It’s like taking one step forward and twenty steps backward. It’s like bobbing for apples in a barrel of applesauce.

It is like going to sleep at night and then waking in the morning to find that you’ve begun to turn to stone, starting from your toes and then climbing up your calves and thighs like some kind of malevolent cement.

And as the toes of the feet were partly of iron and partly of clay, so the kingdom shall be partly strong and partly fragile.

So said Daniel in his interpretation of Nebuchadnezzar’s dream.

Did Nebuchadnezzar have MS?

Your legs have turned to stone as you slept, and yet they ache to the bone. Your kneecaps feel as if they been bruised by a hammer and your feet feel as if a spike had been pounded through fiber and bone.

A primitive sort of fear crackles through your body, dancing like exposed electrical wires. What if this is it, the revelation in real time of the ever present lurking fear, the fear that you will wake up and find you are unable to walk?

You pull your legs up. You place your feet on the floor. They may as well be bricks or doorstops or potatoes. You slap your skin, massage your calves. Then you get up quickly, lurching toward the nearest handhold—the table, the coat rack, the unsuspecting Labrador.

And you walk—not well—but you put one foot in front of the other, weaving like a child’s sand-filled punching bag, and you walk.


What is it? What is it really? What is it clinically—this thing that turns flesh and blood to stone, that tunnels through the brain like a worm in an apple, that reduces nerve fibers to squirrel chewed telephone wires, feet to turnips, toes and fingers to rubber erasers, hands to ham hocks?

In brief, omitting the medical and anatomical gobbledygook as far as possible, multiple sclerosis is a neurological disorder, one of these increasingly popular autoimmune diseases wherein the enemy has been found and turns out to be us. The immune system, originally designed to destroy foreign invaders such as bacteria and viruses, suddenly has the notion that ones own cells are invaders, and so sets out to destroy them. It is all perfectly wonderful, a completely conceived and executed science fiction!

How fearfully and wonderfully I am made,” said David.

Man, he didn’t know the half of it.

Now, above I have used the term originally designed in reference to a corporeal system of the body, and this, I suppose, betrays a prejudice in as far as it presumes the existence of a design, and therefore of a designer.

How very many things there are that we cannot even begin to talk about without agreeing first, in the most essential way, on the existence of a creator. In order to talk about what has gone wrong, we must begin with what is supposed to be right. Without this—the presumption of design and intent, and even more, the absolute faith in the same—there is no disease, no malfunction, no disorder, because there is no order in the first place.

One of the things I love most about multiple sclerosis is how it crosses so readily back and forth from science to philosophy to faith to humor to all things the lie in between.

How shall we know what is right if there is nothing wrong?

And what can be more perfectly wrong than a process wherein the parts of the host seek to destroy the host itself? It is apocalypse and Armageddon. No one comes out alive.

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