ALS as an Opportunity to Grow

by William M. Ross

When Mrs. Del Bene and I first discussed the idea of my writing this article, I was encouraged because she felt that I was handling my ALS in a positive way and might be able to offer helpful reflections to other ALS patients. I was also uneasy because I didn’t want to make others feel inadequate by giving them the impression that I had somehow "licked" the emotional devastation ALS leaves in its wake. Nor did I want to create the impression that I was one of those heroic souls who somehow manage to survive impossible difficulties with their spirits intact. I am no ALS version of John McCain.

So before I offer my reflections about looking at ALS as an opportunity to grow, let me say that I have suffered from manic depression all my life and have been in and out of therapists’ offices since I was eighteen. I have had many panic attacks and have a claustrophobia that has kept me out of elevators for most of my sixty-three years. In short, for much of my life I have endured emotional turmoil, which, to my great sorrow, has caused a lot of pain to my wife and four children.

Yet, paradoxically, in spite of my troubles, I have somehow -- miraculously -- held onto a resolution I made many years ago that I would never allow myself to become bitter and cynical. Even as a young person, when I was making all the dumb mistakes young people make, I knew that I had to avoid bitterness and cynicism at all costs because they kill hope. Without hope one can neither live nor love fully, and I wanted to do both.

So, when a year and a half ago I got ALS, although I retreated into a period of depression and terror, I also renewed my resolution never to become bitter and cynical. I resolved that though I would let myself feel the misery and fear a diagnosis of ALS brings, I would not let ALS take my soul the way it was going to take my body. I did this not with a macho swagger, but with the calm realization that I have an importance and dignity as a human being that transcends my illness. I am not my illness.

Over time, this attitude made it possible for me to realize that my illness was in large measure a disability. This was good news because disabilities can be worked around. My legs are so weak now that I am confined to a wheel chair, and my arms grow steadily weaker. I am not happy about this -- to put it mildly. But look at it this way: Has ALS really changed my life all that much?

Before I got ALS, I went to weddings, family gatherings, and lunch with friends. After ALS, I still do. Before ALS, I went to the shore and watched waves crash against the rocks and seagulls wheel around the sun. After ALS, I still do. Before ALS, I painted watercolors (my passion). After ALS, I still do. And if someday my hands become so weak that I can no longer hold a brush, I intend, if it is at all possible, to paint by holding the brush between my lips. (Sometimes I chuckle when I imagine -- rather grandly, I admit -- an art critic who doesn’t know I have ALS writing, "Bill Ross’s early works were tight and over-controlled, but his later works [done with my brush between my teeth, remember!] show a remarkable fluidity, indicating that Ross has finally found his soul.")

So, having found that I could do everything I did before I got ALS -- provided I was willing to do them in a wheelchair and accept the help of family and friends, I set about organizing my daily routine so that I could work around my disability. My brother-in-law built me a ramp so that my wife can push my wheelchair onto the driveway and help me into our car. I bought a lounge chair at Homecare Solutions which not only tilts backward, but also tilts forward, lifting me into a nearly vertical position and onto my walker (which has a seat) or into my wheelchair, thus saving me energy.

I get my exercise when I do the stretching procedures I learned at the Burke Rehabilitation Center so that I can keep my general health. But otherwise I waste as little energy as possible doing things the hard way.

Then I established my "headquarters" in the living room, centering it around my "lifting" lounge chair. To the right and the left of this chair my wife and son placed small tables. On each table, strategically positioned, is everything I’m likely to need for the day: breakfast (the milk for the cereal is in a thermos), lunch (a sandwich in a school lunch bag), tissues, handi-wipes, an automatic toothbrush, an automatic shaver, a portable phone, phone numbers, etc.

Because I spend much of my time painting watercolors, I have also arranged paper, paints, brushes, etc., in a strategic way. Since I am unable to get up and down to change dirty water, I use a plastic box with lots of compartments, the kind carpenters use to separate nuts and bolts. When the water in one compartment gets dirty, I simply use the water in the next compartment. Ever seeking to save more energy, whenever I go to CVS or Staples, I look for gadgets that might help me refine my "operation."

One of the reactions of sick people is to turn inward, sometimes to the point of being able to think and talk of little else but their sickness. This is understandable because we humans, especially when we are sick, are such needy creatures. Nevertheless, it is not helpful. My answer to this temptation is to do something for other people.

So now I make lovely color reproductions of my paintings at Kinkos and give them to relatives, friends, and friends of friends. A circle is completed when their eyes light up with appreciation for the beauty of the painting and gratitude for the gift. In the joyful communion of moments like this, I rise above ALS, for nothing can withstand the healing power in the loving exchange of gifts.