All About Multiple Sclerosis

More MS news articles for September 2003

Writer with MS Losing His Words, And Finding His Way

September 23, 2003
Dan R. Barber
The Dallas Morning News

I'm losing my words.

One by one, they disappear, misplaced or forgotten, like car keys or the memory of what I ate for lunch yesterday.

I recently finished reading "In the Shadow of Memory," a sad and frightening account of the day 15 years ago when the author, Floyd Skloot, boarded a plane in Oregon as a healthy man - a long-distance runner - and arrived in Washington, D.C., hours later, brain-damaged.

A virus had attacked his gray matter.

"I used to be able to think," Skloot writes in the opening of his book. "My brain's circuits were all connected and I had spark, a quickness of mind that let me function in the world. I could reason, I could total up numbers; I could find the right word "

Find the right word. I used to be able to do that.

Though he never identifies the disease, other than viral brain damage, Skloot is clear about what it has done to him. He can't work. He can write only for a few minutes at a time. And he no longer runs long distances.

I recognize his losses. I live with many of them. Two years ago, I learned that I have multiple sclerosis. I knew nothing about the neurological disease then, except that President Josiah Bartlet on "The West Wing" has it. I thought I was getting older. I remember thinking: So this is what middle age is like?

I now know more than I'd like to about brain injury, however subtle, but thanks to Skloot, I don't feel so lost, so misplaced. The ravages of MS vary from person to person. The disease can cripple you and blind you. It can leave you unable to feed yourself or make sense when you talk.

Me, I walk funny - like I'm dancing. I tire easily. I no longer do math. And I say funny things when I don't mean to. Sometimes, I even forget what I am about to say.

I lose my words.

MS isn't easy. I'm often in pain, though most days it is mild. I almost always feel like I have ridden a horse or gone water-skiing for the first time.

My energy drains so quickly that I can't do anything for two hours, never mind eight - work, stand on my feet, read. I can't even sleep for eight hours at a time because of insomnia. My hand-eye coordination is intermittent, like the windshield wipers on a new car, and I sometimes walk as if I'm doing a polka to an oompa band that only I can hear. I probably couldn't pass a sobriety test for a promise of free books for life.

Most frightening, as with Skloot, I am demented, though subtly. Dementia is what doctors call short-term memory loss and the inability to find the right word.

It would be hard to explain how I felt when my doctor told me I had dementia. But I have a mental image of that mosquito in the hot sauce commercial that explodes in mid-air and disappears in a puff of flames and smoke. I know that's not a feeling, but it does paint an accurate picture.

To not get discouraged, I remind myself that MS isn't fatal, although people die from complications.

And I could get by with fewer words if I had to. "He's a man of few words." Remember that saying? I've never been one of those guys. Ask my wife, my family and friends. Words are important. Why use one when 10 would be better?

You can't be too rich, too thin or have too many books. That's how I feel about words.

The good news is, when I misplace a word, I remember where to find it, or another. I still own a dictionary I bought in college, a thick, now dirty-white paperback with a torn cover and taped spine.

Among the thousands of wonderful words inside are dozens marked with a yellow highlighter, so I could find them in the dark, I guess.

Tucked inside are two sheets of legal note paper with more words: bergamot, brevier, deemster, triolet, windlestraw.

I knew them once.

While losing my words, I rediscovered what Mark Twain once said: The difference between the right word and the wrong one is the difference between lightning and a lightning bug.

I had forgotten, though, how much fun chasing lightning bugs can be. To my surprise, physical catastrophe can be amusing, as well.

When I forget or misplace a word, I substitute one that seems appropriate. I also love movies, and one weekend I suggested to my wife that we see Knights of the Caribbean.

I meant to say Pirates of the Caribbean. (And while writing this, I asked if Caribbean is one word or two, when I meant to ask, "Does it have one R or two?")

That's the MS talking.

I wander verbally a bit, too, which is what I'm doing now, I suppose.

But Skloot got me to thinking. One doesn't need to be brain-damaged to love words or this book. At least, I don't think one does.

In time, Skloot accepted what happened to him. He still writes. He moved to the country and is happier now than he thought he could be.

"I may seem shattered," he writes, "but there are many ways in which I am better than ever, ways that are not obvious or flashy

"Slowed down, living quietly Learning how to think and write in new ways, I feel reborn, hopeful, looking at the coming years with genuine astonishment at all I thought would be important."


So if you see me sitting on a bench at the fair this fall, staring into space with a silly smile on my face, smile with me.

I'll be chasing fireflies, searching for just the right one.

Copyright © 2003,, The Dallas Morning News