This article is brought to you by the Editorial Board of ASA’s Forum on Religion, Spirituality & Aging (FORSA)
by Tom Swift
There are three things that take my breath away: a beautiful woman, a gorgeous sunset, and my illness. I like the first two a lot better.
Amyotrophic Lateral Sclerosis (ALS) attacks the long nerve cells that run from the spinal column to the muscles. They are called "motor neurons." Their function is to carry electrical impulses from the brain that tell the muscles what to do. When ALS kills the motor neurons, the muscles they control also die. As a result of my illness, my leg and arm muscles have become so weak that I cannot walk or lift a glass to my lips. The muscles in my tongue have atrophied to the point that I have difficulty talking and eating. Eventually, the muscles in my chest will not function well enough to help me breathe.
Every three months I go to a clinic in Charlotte that specializes in the diagnosis and treatment of ALS. "Treatment" is an optimistic word, for there is no treatment or cure for ALS at present, only the management of symptoms. At each clinic I take a breathing test to measure my lung functioning. I breathe as long and as hard as I can into a tube that measures me against a standard based upon my age, weight, gender, and so forth. The first couple of times I took the test I exceeded the standard and scored over one hundred percent. During the last two years, my lung function capacity has gradually declined to seventy-six percent. While this is no reason for immediate alarm, it is objective evidence that the disease is robbing me of my health. It is evidence that ALS will eventually kill me.
I write these words with a degree of acceptance, but I have not achieved the stage of acceptance about which Elisabeth Kubler-Ross writes in her book, On Death and Dying. Acceptance as the final stage of dying is more quiet and withdrawn from the world than I am. The dying person at the end of life does not want to see many visitors or talk much to those who do come. It is a time of emotional and spiritual peace. It is "the final rest before the long journey," as one patient put it. Our best response to a loved one who has reached the stage of acceptance is to be quietly present, hold a hand, and try to find our own acceptance of the oncoming death. This is a hard time for friends and family who are not ready to deal with the inevitable.
For now, I am enjoying life too much to be in the final stage of dying. I have a lot to think about. My visitors are fun. Some of them are reading to me since I can't hold a book and turn pages. I am in the middle of five books at the moment and I want to see how they turn out. But who knows? My time to die may come sooner than I expect. Then I will say "good-bye" to all the beautiful women and gorgeous sunsets of this world and prepare to have my breath taken away by the next.
This article is reprinted from the book, Better to Have Loved: Reflections on Living and Dying by Tom Swift (www.lulu.com) with the permission of the author.
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