Roses

The man's sorrowful eyes searched my office for something that would never be there. The answers he was looking for did not exist. Sadness permeated his whole being as he handed me a watercolor painting (figure) that reflected a mood other than his. The brilliant colors sang happiness. The bright red rose petals and the spring green leaves were full of life. Bursting rosebuds announced that the future was now. The man could not see the image of joy and gladness he was handing me. He saw only the frail thin woman in the wheelchair in front of him. The woman who was the love of his life and now required his full-time attention and help. The woman whose painting I was now holding.

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Figure Roses

The symptoms had begun 2 years earlier. Her paintbrushes no longer felt secure in her hands. On a few occasions, they had slipped from her hand as if the span of their handles was too thin to grasp. It was not the brushes that were changing but rather the muscles of her hands that were withered and atrophic. It had prompted her to retire from the art faculty of a small college; she could barely move her fingers or her wrists up and down.

There was more. The muscles of her arms, her legs, her shoulders were alive with activity. Small groups of muscle fibers would suddenly flicker, momentarily indenting her skin, like fleeting lightning flashes firing randomly. On examination, her reflexes were overactive, as if filled with jumping beans. The muscle wasting, the fasciculations, the hyperactive reflexes—all painted an ominous portrait of amyotrophic lateral sclerosis (ALS), the muscle disease that devastated Lou Gehrig.

She asked unsettling questions. “It isn't serious and you can fix it?”

I would ultimately have to give her the answers she did not want to hear. The answer that would devastate her husband—that there was no treatment, that there was no altering the inexorable worsening of the muscle wasting. Later we would talk about dying but on that first visit it was more about living wisely.

ALS is a cruel disease; maybe the cruelest of all human afflictions. There is no treatment and there is no hope. The illness does not usually affect the mind. The patient is always there to watch the relentless loss of muscle function. At first, there is anger and frustration, but for most patients, there comes acceptance of the inevitable and each day becomes a treasure to be lived fully with no thoughts of the future.

“I hope you like it.” She smiled at me. “I just finished painting it.” She paused, taking a few extra breaths, and added, “This week.”

The watercolor was her goodbye present to me, a reminder, so I would never forget her. She and her disheartened husband were moving to a distant Midwestern city to be near their daughter who would help manage her mother's remaining months. We had talked about it many times and she had finally made the decision.

Her hands rested immobile in her lap. Her arms had lost much of their useful function months ago and her legs were almost equally impaired. Only her ability to speak and her facial expressions seemed unaffected.

I marveled at the painting. How could this woman, whose hands had lost their life's purpose, create something so beautiful? So perfect?

“How can this be?” I had to know.

Her words, her delightful smile filled the room. “My husband is so helpful. He mixed the colors and put the brush between my teeth. The rest was easy.”

I never saw her again but she has never left me. Forty years later, the picture hangs on my office wall. It reminds me of a brave and courageous woman who knew the value of living each day as if it were her last.

• © 2018 American Academy of Neurology