When the Body Says No: The Cost of Hidden Stress (9 page)

Joanne, a beautiful thirty-eight-year-old with black hair and luminous, sad blue eyes, was admitted to our palliative unit for terminal care a few months before her death. She had been a dancer. The sudden and bewildering refusal of her limbs to obey her will on the dance floor was traced to the onset of amyotrophic lateral sclerosis. Proud of her innate ability to move freely and creatively, Joanne experienced this diagnosis as the most devastating blow imaginable. “I’d rather die of some horrible cancer,” she said. Already at the end stages of the disease, she wanted me to promise to kill her when the time came. I guaranteed we would not let her suffer pain or breathlessness. That was a promise I could in good conscience make without compromising the principled rejection of euthanasia shared by most doctors and nurses who do palliative work.

You can come to know people quickly and deeply when you look after them during their time of dying. Joanne and I had many talks. “All my life,” she once told me, “ever since childhood, I have been having this dream of being buried alive. I lie in my underground coffin, closed in, unable to breathe. When I was diagnosed three years ago I went to
the office of the ALS Society for information. There on the wall was a poster that read ‘Having ALS Is Like Being Buried Alive.’”

I do not believe Joanne’s recurrent nightmare was either coincidence or preternatural premonition. The image of being alone, confined, desperate and doomed, unheard by anyone, was the psychological truth of her childhood existence. She never experienced herself as an alive and free being in her relationships with her parents or siblings. I could only speculate what stresses over how many generations had finally created that situation for her in her family of origin. As it was, neither her parents nor her brothers and sisters visited during her terminal phase. A new family of devoted caregivers accompanied Joanne during her final weeks on earth and were with her to her dying breath. She was deeply asleep during her final days. The promise was kept: she did not suffer at the last.

Sue Rodriguez, the Victoria woman whose court-defying suicide was carried out in the presence of a member of Canada’s Parliament, was also emotionally isolated from her family. Her biographer, the journalist Lisa Hobbs-Birnie, describes the day Rodriguez’s diagnosis with ALS was confirmed:

Sue was the second of the five children born to her parents within ten years. She was always the outsider. Her mother somehow believed that Sue made this choice: “It almost seemed,” she said, “from the moment she was born she didn’t feel part of the family in the same way as the others did. The illness only made it worse.” Mother and daughter
had only occasional telephone contact during the final months of Sue’s life. Doe was characterized by her daughter and others as “not the caregiving type.”

“The mother’s brusque reaction when Sue called from the hospital with her diagnosis,” writes Hobbs-Birnie, “was typical not only of Doe’s lack of caregiving skill, but of the kind of interaction mother and daughter had. Things did not improve as Sue’s disease progressed.” Emotional communication was foreign to the Rodriguez family, according to her brother, fourteen months her junior. He was the only sibling to maintain any regular contact with his dying sister. Most of the family, he said, preferred not to show their feelings.

This is not some bizarre, unfeeling group of human beings here. The problem was not a lack of feeling but an
excess
of painful, unmetabolized emotion. The Rodriguez family dealt with emotional hurt by repressing it. Generations of family history had brought them to that coping pattern. Sue’s father, Tom, dead of alcohol-induced cirrhosis of the liver at age forty-five, had been an earlier victim of this surfeit of pain. He was a man of low self-esteem, all his life dominated by others.

What drove a terminally ill Sue Rodriguez, the mother of a young child, to expend her diminishing physical and psychic resources on highly public court battles and media campaigns that taxed her vital energies to the limit? An articulate woman with an engaging personality and a beautiful smile, she became a hero to many who saw her as a crusader of indomitable courage and spirit. She was popularly viewed as someone fighting for her right to die at a time and in the manner of her own choosing.

There was always more to the Sue Rodriquez story than the simple issue of autonomy in death, though this was the part of her drama that caught the imagination of the public. Behind the popular facade of a confident and determined fighter, Ms. Rodriguez was a frightened and lonely person with a very fragile support system, alienated from her estranged husband and from her family. It was a multi-layered scenario. As usual, the most public layer was also the most superficial one.

The biographer believes Sue Rodriguez was “a woman of strong convictions and a powerful sense of self. She had control over her life and preferred to have control over her death.” As with all ALS patients, the reality was rather more contradictory. Strong convictions do not
necessarily signal a powerful sense of self: very often quite the opposite. Intensely held beliefs may be no more than a person’s unconscious effort to build a sense of self to fill what, underneath, is experienced as a vacuum.

Her history of deeply troubled personal relationships indicates that Sue Rodriguez had never been in control of her life. She had filled roles without ever being close to her real self. Her anguished question to the court and the public—“Who owns my life?”—was a summation of her whole existence. Her fight for control in death turned out to be her final and greatest role. By the time her legal case opened, writes Lisa Hobbs-Birnie, “Sue Rodriguez was fast becoming a national figure.
She slid into the role as if her entire life had been a preparation for it, which indeed it had.”

When Sue Rodriguez was diagnosed with ALS, in her first despair she compared the impossibility of her situation with what she perceived were the relative advantages of fellow ALS sufferer Stephen Hawking. Writes Hobbs-Birnie, “She was given pamphlets on palliative care, and these pamphlets described patients who were ‘surrounded by loving family’ or who found joy in ‘living a life of the mind.’ What loving family? she thought. What life of the mind? Let a genius like Stephen Hawking live a life of the mind. But me, if I cannot move my own body, I have no life.”

If Stephen Hawking’s public status as a latter-day Einstein may be questioned by science cognoscenti, no one disputes his brilliance, originality of thought or intellectual fearlessness. There is universal admiration for the indomitable will that has sustained his life and work since a slight speech impediment signalled the onset of amyotrophic lateral sclerosis when he was only twenty years old. Diagnosed in 1963, Hawking was given the medical prognosis that he had, at most, two years to live. He has been near death on at least one occasion, ill with pneumonia and in a coma on a trip to Switzerland. Yet four decades after his diagnosis, paralyzed, wheelchair bound and completely dependent physically, he has, nonetheless, just published his second best-selling book. He has travelled ceaselessly around the world, a lecturer in great demand despite his inability to utter a word in his own voice. He has been the recipient of many scientific honours.

Although there are exceptions, the course of ALS is generally predictable. The vast majority of patients die within ten years of diagnosis,
many much sooner. Very rarely people do make recovery from what seems like ALS, but it is extremely unusual for a person to live with its ravages for as long as Stephen Hawking has, continuing not only to work but to function at a high level. What has enabled him to confound medical opinion and those grim statistics?

We cannot understand Hawking’s course as an isolated clinical phenomenon, separated from the circumstances of his life and relationships. His longevity is, without doubt, a tribute to his spirited determination not to allow the disease to defeat him. But I also believe that Sue Rodriguez’s bitter comparison was correct: the young Stephen had access to invisible resources denied to most people with ALS. Given the nature of ALS as a disease that destroys body while leaving the intellect intact, an abstract thinker was in an ideal position to “live a life of the mind.” Unlike the athletic rock climber and former marathoner Rodriguez and unlike the dancers Laura and Joanne, Hawking did not see his body’s deterioration as impairing the role that he chose for himself. On the contrary, it may have enhanced it. Prior to his diagnosis and its attendant debility, he had been somewhat aimless, his shining intellectual gifts notwithstanding.

Hawking had always possessed tremendous cognitive and mathematical capacities and confidence, but he never seemed to feel comfortable in his body. “He was eccentric and awkward, skinny and puny,” write Michael White and John Gribbin in
Stephen Hawking, A Life in Science
. “His school uniform always looked a mess and, according to his friends, he jabbered rather than talked clearly…. He was just that sort of kid—a figure of classroom fun, teased and occasionally bullied, secretly respected by some and avoided by most.” He did not look to fulfill the expectations those who had glimpsed his true abilities held for him. The young Stephen, it appears, was the chosen bearer of the frustrated ambitions of his father who was evidently determined that his son would succeed at educational and social goals he, the father, had never quite attained. One goal was to have Stephen attend one of England’s most prestigious private schools. The ten-year-old-boy was entered for the Westminster School scholarship examination: “
The day of the examination arrived, and Stephen fell ill
. He never sat the entrance paper and consequently never obtained a place at one of England’s best schools.”

One may assume, of course, that this untimely illness was purely coincidental. We may also see it as the child’s only way of saying no to parental pressure. Given the Hawking family’s penchant for privacy, the facts would be difficult to discern. What we do know is that later on, with the young Hawking no longer living at home and at liberty to follow his preferences, these appeared to be more of a social than academic nature. Stephen engaged in a fair bit of indolence and alcohol consumption, with avoidance of classes or studying—those classic forms of passive resistance in college. For a while his academic career looked in jeopardy, and briefly he considered entering the civil service. It was only after his diagnosis that he began to focus his phenomenal intelligence on his work: elucidating the nature of the cosmos, bridging the theoretical gaps between Einsteinian relativity theory and quantum mechanics. With his physical disability, he was freed from many of the tasks of teaching and administration other scientists have to shoulder. His biographers write: “Some have attributed his great successes in cosmology to this enhanced cerebral freedom, yet others have claimed that the turning-point in the application of his abilities was the onset of his condition, and that before then he was no more than an averagely bright student.”

That latter point is difficult to accept, but even Hawking has acknowledged that it was only after the onset of his illness that he began to exert himself at anything: “I … started working for the first time in my life. To my surprise, I found I liked it. Maybe it’s not really fair to call it work. Someone once said, scientists and prostitutes get paid for doing what they enjoy.”

Not much insight there about prostitutes, but it is clear Hawking has been in the extremely fortunate position of being able to pursue a genuine vocation, despite his extreme physical limitations.

The other indispensable factor Hawking possessed and Rodriquez missed was the unconditional emotional support and practical caring of a loved one. For Stephen the source of this nurturing was his wife, now his former wife, Jane Hawking. In essence, she decided to devote her life to him—at great personal cost to herself, as she would come to learn. The two met just before Stephen’s diagnosis with ALS and were married shortly afterwards. Due to her own history, Jane was primed to accept the role of devoted and selfless caregiver. I write
selfless
here
advisedly: there was lacking in her a developed, autonomous sense of self, and thus she completely identified with her role as Stephen’s nurse, mother and guardian angel. “I wanted to find some purpose to my existence,” she recalls in her 1993 memoir,
Music to Move the
Stars, “and I supposed I found it in the idea of looking after him.” When she doubted her ability to fulfill that daunting task, friends told her, “If he needs you, you must do it.” She took it on.

The two young people did not just join each other as equals in a spousal partnership: they fused. They became one body, heart and soul. Without the subordination of Jane’s life and independent strivings to his, Stephen likely would not have survived, let alone succeeded to such a spectacular degree. His biographers assert that “without the help that Jane gave him, he almost certainly would not have been able to carry on, or had the will to do so.”
¹⁰

The relationship worked as long as Jane accepted her self-abnegating position and the one-way flow of psychic energy between them, from wife to husband. The couple loved each other, but she would come to feel used. She recounts a strange incident when, in 1965, she arrived at her fiance’s apartment with a broken arm in a cast: “He was actually expecting that I would put my secretarial skills to good use by typing out a job application for him. The look of horrified dismay that spread across his face as I walked into his room with my left arm bulging beneath my coat in a white plaster cast dashed all my hopes of even the merest display of sympathy.”