The reality of living with a rare disease

  • Article by: ATOM WOLFF
  • Updated: February 28, 2014 - 2:25 PM

It's sad, yes, but I've never been better. See, I live by this advice: "Do what you can, while you still can do it."

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Photo: Jose J. Santos, Los Angeles Times/MCT

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Some days I feel jealous of handicapped people who possess special talents. You’ve seen them in the media: Driving cars even though they have no arms, running races when they have no legs or painting beautiful pictures using only a brush held between their teeth. Their message to us: “Be amazed by what is possible! You can have a life! Don’t give up hope!”

But the sad reality of living with a rare disease is that, for many of us, our condition just leads to death. And it is a death that very few healthy people want to be a part of. So I freely admit to being secretive about my condition. After trying it both ways, I prefer to remain in the closet.

I call this “keeping my stock price high” after the late, great, Steve Jobs. His pancreatic cancer was carefully revealed to the public so as not to spook Apple stockholders. I do the same thing. Because of my rare disease, I don’t really eat human food. Yet to friends and co-workers, I still make small talk about the restaurants I like, what beer I drink or what I’m cooking tonight. And, to keep my cover, I decline all dinner-party invitations.

To everyone reading these sentences: I’m doing just fine, and I have never been better.

I also pretend to have hobbies. In reality, every minute that I’m not working is spent being sick. In the afternoons, my brain and muscles deplete their limited supply of chemical energy. By early evening, I am unable to walk, to sit up, to think — and then, finally, I lose consciousness. And I drool (not pretty).

On really bad days, I will have a seizure. Also, with my disease, parts of my brain are permanently injured. As is my heart. And my intestines. At times I lose my hearing. My muscles are dying. I can have pain attacks that last for days. Vertigo is also a problem. Sunlight and warm temperatures make matters worse.

Otherwise, I’m OK. Never been better.

When I first started getting sick, I burned through 19 confused physicians in my first two years. But it was my second doctor who gave me the only advice that has actually helped me. His words were: “Do what you can, while you still can do it.” And: “Get a dog.” I have done both.

My dogs help me with my illness. In the evenings, when I am unconscious and drooling, they sit and protect me. And when I wake up, they help me get from room to room. They are always with me at home, and they have never let me down.

Soon after being diagnosed, I was driving home from work and pulled my car into my garage. Sitting there, I realized that my legs had stopped working and that there was no way for me to walk into the house. I was stuck. Trapped. I started to cry. The car was still running. And I just thought: “Do it. Do it. Close the garage door, and let the carbon monoxide take you. Death would be so much easier than all this misery.”

But then the dumbest thought entered my mind. My dogs would miss me. I didn’t think of my wife (whom I love), or my daughter (whom I love) or anything about myself. Just that my dogs would miss me. And then I turned off the engine, and I continued to live.

That was three years ago. Now my days are even more of a challenge. I don’t know how much longer I can keep my “stock price” high. I get through only by enjoying the small things.

So today, on international Rare Disease Day, I say:

• Be amazed by what is possible, even if it is just drinking a delicious cup of coffee.

• You can have a life, even if you are passed out on a couch (and drooling).

• Don’t give up hope; someone else, maybe even a dog, would miss you if you were gone.

• And most important: Do what you can, while you still can do it.

That’s good advice for anybody.

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