Against All Odds

"I only did this for my daughter!", Caroline's lips mouthed the words as her husband, now adept at lip reading, interpreted her silent utterances. She glanced across the kitchen door into the living room where a large portrait of her daughter, now fourteen, featured prominently on the wall. I first met Caroline ten years ago when she was referred to me because of stiffness in her legs. She was a beautiful thirty year old with alabaster skin, blond hair and high cheekbones, a gift inherited from native American ancestors. But it was her disarming smile, warm, radiant, kind and yet also playfully mischievous that charmed everyone who met her. I quickly realized that her ailment was untreatable, but it took another year before her condition clearly declared itself. She had amyotrophic lateral sclerosis or ALS, a devastating, untreatable disease that causes progressive muscle weakness eventually leaving those afflicted unable to move, speak swallow or breathe . My heart ached when I broke the devastating news to her and her husband: the average survival is three to five years.

Ten years on, accompanied by our clinic nurse, we were making a house call. Caroline had beaten the odds, but at what cost. She is almost completely paralyzed with barely enough strength to manipulate the joystick of her electric wheelchair. She has a tube in her stomach to help with her nutrition and a tracheostomy to help her breathe. At night, she is attached to a ventilator. And yet, despite ten years of battling this crippling disease, her face is as beautiful and her smile just as radiant as it was when I first saw her. Caroline lost her mother when she was only thirteen and she was determined to see her own daughter into adulthood. And so, at every fork in the road along the rugged path of her illness, her choice was always made with her daughter in mind. Long after many patients with ALS just give up, she chose to keep going despite the discomfort and the pain.

As we chit chatted and examined Caroline, the mood was not somber around that kitchen table. Caroline was not withdrawn into a dark corner of her mind passively waiting to die; she was fully engaged, fully alive. She was, as always, neatly dressed and her home did not give off the stifling, stale feeling one often gets in the homes of the chronically ill. This was not the home of someone who's life was put on hold. She asked me about my children and I asked about her daughter. She had her husband bring out a bracelet that she had designed as a present for the nurse. She talked about taking an online course in comparative religions. We asked her about her painful spasms. They were still troublesome she said but did not care for more medication; she can deal with the pain and would rather be alert than in a drug-induced daze. A pleasant hour and half passed by effortlessly and we had to get back to the medical center. Before we said our goodbyes, she had her husband take a picture of us standing by her.

Caring for terminally ill patients can be emotionally taxing. But as I drove back to the medical center that day, I carried with me no emotional burdens. On the contrary, I felt a certain lightness, a sense of serenity as I marvelled at Caroline's fortitude, her grace and her dignity in the face of unspeakable suffering, in the face of death. It is a life lesson that I have learned repeatedly from my ALS patients, when against all odds, they reach deep down and show me the strength of the human spirit. I hope that in a year's time there will be another visit and that Caroline will again dazzle us with her her smile and her indomitable spirit.