When the Body Says No: The Cost of Hidden Stress (8 page)

Similar patterns emerge from my personal encounters with ALS patients in private practice and in palliative care. Emotional repression—in most cases expressed as niceness—can also be found on exploring the lives of famous persons with ALS, from the physicist Stephen Hawking, the baseball great Gehrig, to Morrie Schwartz, the professor whose television appearances on Ted Koppel’s show made him a much-admired figure in the last months of his life and whose story and wisdom form the subject of the best-seller
Tuesdays with Morrie
. In Canada, Sue Rodriguez, a person with ALS, gained national prominence with her determined legal battle for her right to assisted suicide. In the end not even a Supreme Court decision could deny her that right. Her story is congruent with what the lives of these others also teach us.

The life histories of people with ALS invariably tell of emotional deprivation or loss in childhood. Characterizing the personalities of ALS patients are relentless self-drive, reluctance to acknowledge the need for help and the denial of pain whether physical or emotional. All these behaviours and psychological coping mechanisms far predate the onset of illness. The conspicuous niceness of most, but not all, persons with ALS is an expression of a self-imposed image that needs to conform to the individual’s (and the world’s) expectations. Unlike someone whose human characteristics emerge spontaneously, the individual seems trapped in a role, even when the role causes further harm. It is adopted where a strong sense of self should be—a strong sense of self that could not develop under early childhood conditions of emotional barrenness. In people with a weak sense of self, there is often an unhealthy fusion with others.

The example of New York Yankees first baseman Lou Gehrig is instructive. Gehrig earned the sobriquet “the iron horse” for his implacable refusal to remove himself from the lineup regardless of illness or injury. In the 1930s, long before the days of sophisticated physiotherapy and sports medicine, he set a record for consecutive games played—2,130—that would stand for the next six decades. He seemed to feel that
his prodigious talents and dedicated play when healthy were not enough, and he was too dutiful toward his fans and employers to ever take time off. Gehrig was caught up, according to his biographer, “in his self-designated role as a loyal son, loyal team player, loyal citizen, loyal employee.”
⁵

A teammate recalled Gehrig’s participation in a game despite a broken middle finger on his right hand. “Every time he batted a ball it hurt him. And he almost got sick to his stomach when he caught the ball. You could see him wince. But he always stayed in the game.” When his hands were X-rayed, it was found that every one of his fingers had been broken at one time or another—some more than once. Long before ALS forced him to retire, Gehrig had sustained seventeen separate fractures in his hands. “He stayed in games grinning crazily like a macabre dancer in a gruelling marathon,” someone wrote. The contrast between Gehrig’s unsparing attitude toward himself and his solicitude toward others was glaringly evident when a Yankee rookie was weak from a heavy cold. Placating the annoyed team manager, Gehrig took the young man home to be cared for by his mother, who treated the “patient” to hot wine and put him to bed in her son’s room. Lou slept on the couch.

Gehrig has been described as a quintessential “mama’s boy.” He lived with his mother until his marriage, in his early thirties—a union the mother accepted only with marked ill grace.

Stephen Hawking was diagnosed at the age of twenty-one. His biographers write: “During his first two years at Cambridge, the effects of the ALS disease rapidly worsened. He was beginning to experience enormous difficulty in walking, and was compelled to use a stick in order to move just a few feet. His friends helped him as best they could, but most of the time he shunned any assistance. Using walls and objects as well as sticks, he would manage, painfully slowly, to traverse rooms and open areas. There were many occasions when these supports were not enough…. On some days Hawking would turn up at the office with a bandage around his head, having fallen heavily and received a nasty bump.”
⁶

Dennis Kaye, a Canadian who died of ALS, published
Laugh, I Thought I’d Die
in 1993. His book has the reader doubled over with laughter, even knowing the author’s fate—exactly as Kaye had intended. Like several other writers with ALS, he remained undaunted by the exorbitant physical demands of writing without the use of his fingers or hands.
“Let me start by saying that ALS is not for the faint of heart,” he begins his chapter titled “Lifestyles of the Sick and Feeble.” “In fact, I only recommend it to those who truly enjoy a challenge.” Kaye tapped out his volume with a stick fastened to his forehead. Here is his description of the “ALS personality”: “One seldom sees words like ‘deadbeat’ or ‘lazy’ used in the same sentence as ALS. In fact, one of the only traits ALSers seem to share is an energetic past. In almost every case, victims were either classic over-achievers or chronic workaholics…. I’ve been called a workaholic, and I suppose if the work-boot fits … but technically, even though I worked all the time, I was never driven by an addiction to work so much as an aversion to, perhaps even a disdain for, boredom.”
⁷

Another Canadian with ALS, Evelyn Bell, authored her book
Cries of the Silent
by wearing a laser light attached to a special glass frame, shining it on a spelling board, painstakingly pointing out each letter of each word to volunteer assistants for transcription. For her, too, such zealous dedication to a goal was not new. She relates that she had lived her life “at a feverish pace.” She was the mother of three children while building a successful business career: “It was a challenge to juggle home-making, parenting, business, gardening, interior decorating and chauffeuring, but
I loved the roles and performed them with great intensity
…. During the years of raising a family, my Nutri-Medics business grew extensively and I enjoyed many company cars and numerous trips to foreign lands. I reached many levels of success in the business, being top achiever in Canada for a number of years. I felt I wanted to be a success at parenting and everything I did.” With unconscious irony, Evelyn Bell reports all this just after writing that
“we knew we could always replace money but not our health or our marriage.”
⁸

Disease frequently causes people to see themselves in a different light, to reassess how they have lived their lives. A sudden realization hit Dennis Kaye one day as—with “glib satisfaction”—he watched his father, and two employees, doing work that he, Dennis, had always unquestioningly performed on his own. “Before long,” he writes, “satisfaction turned to frustration…. Almost all my accomplishments were in one way or another connected not to
my
aspirations, but to the aspirations of my father. I don’t want this to turn into an Oprah-style confession, but from the time I was a kid working my summer holidays, I’d been helping
my father meet his goals and obligations. Except for a couple of years in my late teens, I’d spent the past fourteen years meeting someone else’s deadlines…. Suddenly, in the blink of an eye, I found myself pushing thirty and facing a deadline of my own … the ultimate deadline.”

The same compulsive sense of duty to others is evident in Laura, an ALS patient I met recently. A sixty-five-year-old former teacher of dance, Laura greets me at the door of her magazine-classic wood and glass West Coast home. Even leaning on her walker for support, she displays the grace and elegance of the ballet dancer. She was diagnosed with ALS four years ago, while undergoing chemotherapy for breast cancer. “I went to a concert,” she relates, “and I couldn’t clap all of a sudden. My fingers were cramping and they just weren’t as dexterous as they usually are. It seemed to get worse as I went through the chemo. I had several bad falls; one time I broke my cheekbone and my eye socket.” Laura’s speech is halting, but the cadences of lively humour and a love for life can still be heard in the near-monotonous flow of her delivery.

Laura’s medical troubles came on after a tense year during which she worked hard at the new bed-and-breakfast business she established in the home she shares with Brent, her second husband. “I had always wanted to open a B and B,” she says. “I found this place, but there was stress because we had to come up with more money than we could really afford. I felt guilty that Brent had to subsidize my financial venture. That first year was difficult, decorating the rooms. We built the carriage house. I ran the business, made the house, as well as decorating. It was practically a year to the day we moved in that I discovered the lump.” The ALS diagnosis followed a few months later.

Laura exemplifies just how impossible people with ALS find it to let go of self-imposed responsibilities long after their bodies have signalled rebellion. When we conducted our interview, the housekeeper for the bed and breakfast was away in Europe. “It turned out that 70 per cent of our clientele are repeats,” says Laura. “You get to know them as friends, you know. I’ve been feeling guilty because we said we are not going to take any guests for the month while Heidi was gone. But last weekend we had three rooms occupied because I couldn’t say no. They are repeats and I enjoy seeing them. And next week we have one repeat coming who’s been here a dozen times, a corporate guest.”

“How about saying,” I suggest, “‘Dear corporate guest: I have this condition that makes life very difficult for me. I am not up to the work involved in looking after people.’”

“I could say that. But the gal is coming, and I really enjoy her. She knows my condition, and she says, ‘I’ll clean up my own room, and I’ll get a bowl of cereal in the morning.’ That’s what they all say, but I can’t let them do that. Because I’ve never served a bowl of cereal for breakfast.”

“You still wouldn’t be serving one. They’d be serving it themselves.”

Hearty laughter. “You make it sound so simple. I’d have to take a course, or maybe get some counselling with you.”

Laura’s guilt around saying no to other people’s perceived needs was inculcated at an early age. Her mother developed breast cancer when Laura was twelve and died four years later.
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From adolescence Laura was responsible for the care of her sister and brother, respectively five and ten years younger than she is. Even before then she was habituated to anticipating her parents’ wishes.

“My mother was a dance teacher, so I danced as a very young child and all through my life. I went into the Royal Winnipeg Ballet, but I ended up being too tall, so I opened a dance school with a friend and taught children.”

“It’s a very demanding life, ballet. Did you enjoy it as a child?”

“Sometimes. Sometimes I resented it. I resented not being able to go with my friends to a show on a Saturday afternoon, or it always seemed I was missing birthday parties.”

“How did you deal with that?”

“My mother would give me a choice, and
I think I would go dancing because I knew she preferred that I do that
.”

“What about what you preferred?”

“I would have liked to go with my friends.”

After her mother’s death, Laura functioned as the woman of the house, not only as caregiver to her siblings but, in some ways, also as companion to her father. “He’d say, ‘What are you doing tonight, Laura?’ I’d say, ‘I’m going to a show with Connie,’ my best friend. He’d say, ‘Oh, I think I’ll get a babysitter and come with you.’ All my
friends came to our house ’cause they loved my dad. He was just great with everyone.”

“How did you feel about your dad hanging out with you and your girlfriends?”

“Well, what kind of teenager wants their dad hanging around!”

“Did you ever say, ‘Dad, I just want to be with my friends’?”

“No … I didn’t like it, but I didn’t want to hurt his feelings.”

Laura’s first husband, whom she married to escape the family home, was a compulsive womanizer. He left her when she was pregnant with their third child, on her own, without any financial support. They had been childhood sweethearts.

“He was having affairs? For how long did you endure it?” I wonder.

“Four years. I had two children, and I believed in marriage.” Laura slowly lifts a napkin to her eyes to wipe away some tears. “I’ve never talked about this.”

“It’s still very painful for you.”

“I don’t know why, it was a hundred years ago … Sorry, I do get emotional.”

“What’s that like for you to get emotional?”

“Annoying, because it doesn’t do any good.”

“Is being emotional something you’ve found uncomfortable in your life?”

“Well, if you’re emotional, it’s usually because something bad or sad has happened, so why would you like being emotional?”

In a sense, Laura is right. For the child it is no relief to feel sadness or anger if no one is there to receive those emotions and to provide some comfort and containment. Everything had to be held in rigidly. The physical rigidity of ALS may well be a consequence. There is perhaps only so much energy the nervous system can expend pushing down powerful emotions that cry out for expression. At some point in particularly susceptible individuals, it seems reasonable to suppose, nerves may lose the ability to renew themselves. Could ALS be a result of an exhausted nervous system no longer being capable of replenishing itself?

“Why has the fact that ALS patients, as a group, are strikingly congenial not been discussed in the literature?” asked the Cleveland neurologists in their Munich presentation. “Probably the principal reason is that it is based on subjective assessments, which lack a means of scientific
verification. Thus, according to our psychiatric colleagues, ‘niceness’ is extremely difficult to quantify.” Perhaps if researchers took greater care to obtain patients’ life histories, much useful information now being missed would be forthcoming. The examples in this chapter illustrate that.

Rage and anguish exist underneath the veneer of niceness, no matter how sincerely a person mistakes the facade for her true self. “My mother is still alive, and I love her dearly,” says the sister of a man diagnosed with ALS two years ago, “but she is very domineering, superficial in her understanding of emotions and insensitive to other people’s needs and wants. She does not allow you to have your own self. It was very difficult to find your own identity with my mother. When I consider my brother’s illness, I think we all did our work to figure out how to become separate individuals. It’s been hard, but we did—except my brother, who somehow didn’t. He said to me last time I was there—I’m fifty-four now, and he’s forty-six—‘I hate Mom.’ And yet, he is the one who is the nicest to my mother of us all. He will go there—he has ALS and can hardly walk—but he will take soup to her. When he is in my mom’s presence he will be a cute little boy—the good little kid he always was, and I was not.”