September 21, 2024
Column

Price paid for goods never ordered

They are not long, the days of wine

And roses: Out of a misty dream

Our path emerges for awhile

Then closes-within a dream.

– Ernest Dowson

Whatever hand you are dealt – that is the hand you must play.

Like Job in the Bible, some people are dealt a much worse hand than others. For some of the afflictions that life rains on us, you have only yourself to blame: such as an early lung cancer death caused by smoking; a cirrhosis of the liver death cause by heavy drinking. But for other afflictions, you didn’t do a thing to earn them. You are merely one of the innocent and touched.

Among those innocents are the people who suffer from Multiple Sclerosis. MS is an autoimmune disease of the central nervous system. In other words, like cancer, it is the body attacking itself. The National MS Society (www.nationalmssociety.org) estimates that at least 400,000 Americans have some form of MS, but other MS doctors say the total may be much higher, since people may have it but not know what is causing that feeling of extreme fatigue, the most common symptom of MS.

Three times as many women have it as men – and doctors don’t know why – and it is usually diagnosed in women between the ages of 30 and 40 – and they don’t know why. To add to the mix, no one knows what causes it, and there is no cure for it, although there are some treatments for the milder forms of MS.

Here’s how MS works: Imagine your nerves are like electrical cords, and instead of rubber around the copper wire, the wires of your nerves are protected by a myelin sheath. With MS patients, for some reason, the sheath frays, and the wire inside is exposed-causing the electrical impulse to be short-circuited. That’s how MS works: It short-circuits things in your body.

There are two main forms of MS: the more common relapse-remitting type, in which your symptoms can disappear for days, weeks, or months. And then, further down the list, there is primary progressive MS, in which the progress is steadily downward-with no remission.

My wife Neva was diagnosed with Primary Progressive MS about eight years ago, and she got it at the predictable age of 38. Since then, it has been like having leprosy: every six months, another part of your being shuts down.

This is what the downward progress has looked like:

. Increasing inability to walk. From cane to wheelchair. From electric wheelchair to bed;

. Numbness on one side of body;

. Impaired vision and impaired hearing;

. Short-term memory loss. Thus “Books on Tape” are no help because by the time the reader has gotten to page 10, you’ve forgotten what you heard on pages 1-9.

. And as of a few months ago, a loss of the ability to speak. (We are devising a personal sign language between us. A forefinger twirled in the air means: “Is there any more champagne left?”)

At the time my wife was first diagnosed, we were living in northern Arizona. She had been working for a company that sent people down the Colorado River and through the Grand Canyon on large rubber rafts. Now, at our home in Searsport on Maine’s midcoast, she spends most of her day in bed and can only get around with the use of an electric wheelchair-which was provided by Medicare.

There is quite a bit of difference in our ages, so we make an “odd couple” going down the street. In the wheelchair, you have a former model and still beautiful woman. Accompanying her, you have a gray-haired old geezer-but one who is still able to walk. Life sure is strange.

I never thought about the vow “in sickness and in health” when I took it-but I think about it now.

There is a popular myth that people don’t die of MS. The myth is untrue. J.K. Rowling’s (“Harry Potter”) mother died of MS at the age of 45; Janis Ian’s (singer/composer) mother died of MS at the age of 47. Some famous people with MS right now are the TV talk show host Montel Williams, and Meredith Viera’s husband, Richard Cohen.

Anyone who has been dealt an affliction like this suffers greatly from it. But the person who takes care of them-and loves them-suffers as well.

What can you do about it? Nothing.

But I think my wife said it best:

“This is the hand I have been dealt. This is the hand we will play.”

Stephen Allen is a retired journalist who lives in Searsport.


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