Hope

Hope and tribulation

There are biblical references to hope. St Paul, in his letter to the Romans, reflects on the same notion that hope seen is not hope. “For we are saved in this hope, but hope that is seen is not hope; for why does one still hope for what he sees?”⁵ In the same letter, St Paul comments on the theological relationship of faith and grace and the role hope plays when faced with tribulation. “We also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character and character, hope.”⁶

Colin’s story

I inherited a patient I will call Colin. I knew that he was a well respected university professor and that he had had a heart attack, the culmination of a very stressful family tragedy.

One summer morning while on sabbatical I met him quite by accident in the Public Record Office in Kew, England. We had lunch together in Kew Gardens, where he told me about his research and then a little about his background. He said, “From an early age I was passionate about history. I was diligent and was rewarded with a master’s degree from Cambridge and a PhD from the University of London.

“Along the way I fell in love with a beautiful girl who shared my interests. She invited me to meet her family. They were—how shall I put it?—socially conscious and made it quite clear that my origins were not up to scratch. For my part I was supremely confident in my achievements and perhaps I was guilty of reverse snobbery. At any rate, I chose to avoid them. Perhaps if I had gotten to know them better I would have learned something important, but I was in love and that was what mattered then. We married without her family’s blessing and started our family, a daughter and a son. I was invited to teach in Canada and we moved there, where I have spent most of my professional life.

“My wife had a secret—a family secret that she hadn’t shared with me.”

Colin looked at his watch. “This morning I found some correspondence from the British Colonial Office on Tanganyika. I must get back to it. Undoubtedly we will cross paths back home.”

We commented on our chance meeting and said our goodbyes. I went off to see some spectacular water lilies in the Kew Gardens and never did get back to the Public Record Office.

When I returned home I got to know Colin and his story. His wife’s family had an uncommon, poorly understood dominant genetic disorder. The signs and symptoms of their family disease, affecting 1 in 2 offspring, became apparent in early adulthood. At first the neurologic expression of the disease was fleeting and could be dismissed or denied. Then the tremors, unsteadiness, and weakness became debilitating, and eventually the person, with a perfectly intact intellect, became trapped in a body that was totally incapacitated.

Colin’s wife had the disease.

I understood his tribulation. He had to care for a wife who became more demanding and irascible as her physical function deteriorated. He had to care for their 2 children, all the while knowing they might share her fate. He had a career and a home to maintain, fiscal responsibilities, and a family that was distant. He merely put his head down and kept going until he had a heart attack. By this time his wife was totally incapacitated. She wanted to return to England. Arrangements were made. She was flown home and died within the year.

Colin recovered, his career blossomed, and his children remained healthy and were successfully launched. It was about this time that I became Colin’s family doctor.

I knew a student of his who told me about one of Colin’s approaches to teaching. If students handed in average, poor, or failing assignments, Colin would outline how they could improve their grades. If they took the time to follow his advice and resubmit the assignments they would see their mistakes, correct them, and get better marks. A very important lesson in motivation and reinforcing proper technique. It is also an example of tribulation, perseverance, character, and hope.

Hope and fear

In 1993 the first ataxia gene, SCA1 (spinocerebellar ataxia type 1), was identified.⁷ I saw Colin later that year and inquired about his children. He said, “They are both doing well. My daughter is married and has a daughter and a son, but both my children are approaching the age when their mother had the first signs of the disease.” I asked him how he coped with this fear.

“I think about this a lot. My hope and comfort is in medical science. They have identified the gene. They will be able to modify it and my children and grandchildren will not have to live in fear and dread.”

This is the sustaining power of hope.