Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease, has been much in the news lately. In March, a Coos Bay, Oregon, man with the disease took his own life with lethal drugs prescribed under Oregon's assisted-suicide law. This week, Dr. Jack Kevorkian was sentenced to prison for his role in the death of a Detroit, Michigan, man stricken with the same disorder. Here, in contrast, is the perspective of an Eastern Oregon man who also is paralyzed by ALS.

THIS IS ABOUT a bad break I've suffered and how I'm dealing with it. An incurable disease has taken a lot from me but has given some back, too, so I don't intend this reflection to be a bummer.

On Feb. 7, 1996, I saw a neurologist because I had some weakness in my legs. He told me I have a neurological disorder that would gradually lead to full paralysis and death. I was later diagnosed with Lou Gehrig's disease, also called ALS, for which there is no cure or real treatment.

Over the next 2 1/2 years, I began losing the ability to make my muscles work. My motor nerves were dying. At first it was just weakness in the legs and stumbling. Then a cane, then crutches, and then a wheelchair. I also had to adjust to the fatigue that ALS brings. By the end of 1997, my weak arms required an electric wheelchair. We had to buy a van with a ramp and build a garage with a ramp so I could get in and out of the house.

By the spring of '98 I had difficulty swallowing and speaking, and by summer my swallowing was so bad I was starving to death. I had lost 70 pounds by August. I was beginning to have difficulty breathing.

As my degeneration went on, we had to make all kinds of changes. My wife, Nancy, had to take over more and more of my jobs around the house. I taught half time during the 1996-97 school year and took full disability the next year, quitting the job I loved.

Adjusting is a constant process. No sooner did we adapt to one level of disability than we had to figure a way to live with another level.

The biggest and most recent adjustment came in mid-August when I had a feeding tube inserted and a trachiostomy. I wanted and expected the tube, but the trachiostomy was another matter. I also had a pulmonary function test, which showed my lungs working at 29 percent of capacity. When I had the surgery for the tube, my lungs failed and they intubated me. The next day they put in the trachiostomy.

This means I breathe through a tube implanted at the base of my neck. A machine forces air into my lungs, breathing for me. I now must have 24-hour care.

Most days, I'm in bed 24 hours. I occasionally get up in my chair for a few hours to go to a game at school or somewhere with a couple of longtime friends.

I can no longer talk. I communicate by written note or computer.

I still enjoy life. I am still very interested in the work around me and derive enjoyment as a spectator. I enjoy writing, music, movies and, most of all, visits with family and friends. Life is good.

People tell me I have a great attitude. They admire me for it. I've heard this so much I've decided it must be true, though it seems like the only way to be. I wonder what it is about me that allows me to enjoy life under such adverse conditions.

One thing is that I accept my condition. Bad things happen to people. Until this, Nancy and I -- and believe me, this is happening to both of us -- enjoyed good fortune in our lives and in our family's lives. We were blessed. We did things we wanted to do.

As I lie here sick, I don't wish I had pursued life more vigorously. People get hit by trucks, by cancer and by ALS. Millions of people have terrible things happen to them. I just happen to be one of them. Too bad; deal with it.

I don't dwell on what I've lost. I don't spend time wishing I could walk or talk. When I first found out I was sick, I did some soul-searching and decided to focus on the good things in my life. It takes practice; somehow it's easier to dwell on your woes. But that just makes you feel bad.

I have loving and supportive family and friends. We're financially secure. There are enough things I can do from my bed that I'm seldom bored, and I have those special visits from former students, holidays with loved ones and time to observe the unfolding of tumultuous world events on television news.

It's obvious why I don't dwell on my future. Instead, I try to enjoy the moment I'm in. Right now there's some great football on TV and a beautiful snowy day outside, and the cutest chickadees and red-breasted nuthatches are at my window feeder.

You don't have to be sick to look on the bright side. Count your blessings. That's more than a cliché. Besides, you should avoid cliches like the plague.

The Oregonian - April 17, 1999

Home

Index of Site

Share YOUR Thoughts