When the Body Says No: The Cost of Hidden Stress (3 page)

So what had happened? My automatic impulse to protect my mother from my pain, even in such an innocuous situation, was a deeply programmed reflex that had little to do with the present needs of either of us. That repression was a memory—a re-enactment of a dynamic that had been etched into my developing brain before I could possibly have been aware of it.

I am both a survivor and a child of the Nazi genocide, having lived most of my first year in Budapest under Nazi occupation. My maternal grandparents were killed in Auschwitz when I was five months old; my aunt had also been deported and was unheard from; and my father was
in a forced labour battalion in the service of the German and Hungarian armies. My mother and I barely survived our months in the Budapest ghetto. For a few weeks she had to part from me as the only way of saving me from sure death by starvation or disease. No great powers of imagination are required to understand that in her state of mind, and under the inhuman stresses she was facing daily, my mother was rarely up to the tender smiles and undivided attention a developing infant requires to imprint a sense of security and unconditional love in his mind. My mother, in fact, told me that on many days her despair was such that only the need to care for me motivated her to get up from bed. I learned early that I had to work for attention, to burden my mother as little as possible and that my anxiety and pain were best suppressed.

In healthy mother-infant interactions, the mother is able to nourish without the infant’s having in any way to work for what he receives. My mother was unable to provide that unconditional nourishing for me—and since she was neither saintly nor perfect, quite likely she would not have completely succeeded in doing so, even without the horrors that beset our family.

It was under these circumstances that I became my mother’s protector—protecting her in the first instance against awareness of my own pain. What began as the automatic defensive coping of the infant soon hardened into a fixed personality pattern that, fifty-one years later, still caused me to hide even my slightest physical discomfort in front of my mother.

I had not thought about the
When the Body Says No
project in those terms. This was to be an intellectual quest, to explore an interesting theory that would help explain human health and illness. It was a path others had trod before me, but there was always more to be discovered. The counsellor’s challenge made me confront the issue of emotional repression in my own life. My hidden limp, I realized, was only one small example.

Thus, in writing this book, I describe not only what I have learned from others or from professional journals but also what I have observed in myself. The dynamics of repression operate in all of us. We are all self-deniers and self-betrayers to one extent or another, most often in ways we are no more aware of than I was conscious of while “deciding” to disguise my limp. When it comes to health or illness, it is only a matter
of degree and, too, a matter of the presence or absence of other factors—such as heredity or environmental hazards, for example—that also predispose to disease. So in demonstrating that repression is a major cause of stress and a significant contributor to illness, I do not point fingers at others for “making themselves sick.” My purpose in this book is to promote learning and healing, not to add to the quotient of blame and shame, both of which already exist in overabundance in our culture. Perhaps I am overly sensitized to the issue of blame, but then most people are. Shame is the deepest of the “negative emotions,” a feeling we will do almost anything to avoid. Unfortunately, our abiding fear of shame impairs our ability to see reality.

Despite the best efforts of many physicians, Mary died in Vancouver Hospital eight years after her diagnosis, succumbing to the complications of scleroderma. To the end she retained her gentle smile, though her heart was weak and her breathing laboured. Every once in a while she would ask me to schedule long private visits, even in hospital during her final days. She just wanted to chat, about matters serious or trivial. “You are the only one who ever listened to me,” she once said.

I have wondered at times how Mary’s life might have turned out if someone had been there to hear, see and understand her when she was a small child—abused, frightened, feeling responsible for her little sisters. Perhaps had someone been there consistently and dependably, she could have learned to value herself, to express her feelings, to assert her anger when people invaded her boundaries physically or emotionally. Had that been her fate, would she still be alive?

  I
T WOULD BE AN UNDERSTATEMENT
to say that the spring and summer of 1996 was a stressful time in Natalie’s life. In March her sixteen-year-old son was discharged from a six-month stay at a drug rehabilitation facility. He had used drugs and alcohol for the previous two years and was repeatedly expelled from school. “We were lucky we got him into the residential treatment program,” says the fifty-three-year-old former nurse. “He had only been home a short while when first my husband was diagnosed, and then me.” In July her husband, Bill, underwent surgery for a malignant bowel tumour. After the operation they were told the cancer had spread to his liver.

Natalie had suffered fatigue, dizziness and ringing in her ears from time to time, but her symptoms were of short duration and resolved without treatment. In the year before her diagnosis she had felt more tired than usual. A bout of vertigo in June led to a CT scan, with negative results. Two months later an MRI of Natalie’s brain showed the characteristic abnormalities associated with multiple sclerosis: focal areas of inflammation where myelin, the fatty tissue lining nerve cells, was damaged and scarred.

Multiple sclerosis (from the Greek, “to harden”) is the most common of the so-called demyelinating diseases that impair the functioning of cells in the central nervous system. Its symptoms depend on where the
inflammation and scarring occur. The main areas attacked are usually the spinal cord, the brain stem and the optic nerve, which is the bundle of nerve fibres carrying visual information to the brain. If the site of damage is somewhere in the spinal cord, the symptoms will be numbness, pain or other unpleasant sensations in the limbs or trunk. There may also be involuntary tightening of the muscles or weakness. In the lower part of the brain, the loss of myelin can induce double vision or problems with speech or balance. Patients with optic neuritis—inflammation of the optic nerve—suffer temporary visual loss. Fatigue is a common symptom, a sense of overwhelming exhaustion far beyond ordinary tiredness.

Natalie’s dizziness continued through the fall and early winter while she nursed her husband through his convalescence from the bowel operation and a twelve-week course of chemotherapy. For a while afterwards Bill was able to resume his work as a real estate agent. Then in May 1997 a second operation was performed to excise the tumours in his liver.

“Following the resection, in which they removed 75 per cent of his liver, Bill developed a blood clot in his portal vein.
^*
He could have died from that,” says Natalie. “He became very confused and combative.” Bill died in 1999, but not before subjecting his wife to more emotional agony than she could have foreseen.

Researchers in Colorado looked at one hundred people with the type of MS called relapsing-remitting, in which flare-ups alternate with symptom-free periods. This is the type Natalie has. Patients burdened by qualitatively extreme stresses, such as major relationship difficulties or financial insecurity, were almost four times as likely to suffer exacerbations.
¹

“I was still having a lot of vertigo over Christmas of 1996, but after that I was almost 100 per cent,” Natalie reports. “Only my gait was a little off. And despite all the problems with Bill’s liver resection—I had to take him to the emergency ward four times between July and August—I was fine. It appeared Bill was turning around, and we were hopeful there would be no more complications. Then I had another exacerbation.” The flare-up came when Natalie thought she could relax a little, when her services were no longer urgently needed.

“My husband was the type of person who felt that he shouldn’t have to do anything he didn’t want to do. He was always like that. When he was sick, he just figured he was definitely not going to do anything. He would sit down on the sofa and snap his fingers—and when he snapped, you jumped. Even the kids were getting very impatient with him. Finally, in the fall, when he was better, I sent him out of town for a few days with some friends. I said, ‘He needs to get out.’”

“What did
you
need?” I ask.

“I was fed up. I said, ‘Take him away to play some golf for a few days,’ and this friend came and picked him up. And two hours later I knew I was having an exacerbation.”

What might she have learned from this experience? “Well,” Natalie says hesitantly, “that I need to know when to withdraw from my helping mode. But I just can’t; if somebody needs help, I have to do it.”

“Regardless of what’s happening for you?”

“Yes. Five years down the road, and I still have not learned that I have to pace myself. My body says no to me frequently, and I keep going. I don’t learn.”

Natalie’s body had many reasons to say no throughout her marriage. Bill was a heavy drinker and often embarrassed her. “When he would have a little too much to drink, he became ugly,” she says. “He would be argumentative, aggressive, lose his temper. We would be out at a party, and if something upset him, he would tear strips off people in public, for no reason. I would just turn around and walk away, and then he would be angry with me for not supporting him. I knew within forty-eight hours of being diagnosed with MS that Bill would not be there for me.”

Returning from his golfing vacation, Bill experienced some months of physical vigour. He engaged in a relationship with another woman, a friend of the family. “I thought, Look what I’ve done for you,” says Natalie. “I’ve jeopardized my own health. I was there for you all summer. You were at death’s door, and I sat for seventy-two hours in that hospital waiting to see if you were going to die or recover. I looked after you when you came home, and this is how I get paid back. I get kicked in the teeth.”

The idea that psychological stress increases the risk for multiple sclerosis is not new. The French neurologist Jean-Martin Charcot was first to give a full clinical description of multiple sclerosis. Patients, he
reported in a lecture in 1868, connect “long continued grief or vexation” with the onset of symptoms. Five years later a British physician described a case also associated with stress: “Aetiologically it is important to mention another statement the poor creature made when giving a more confidential account to the nurse—that the cause of her disease was having caught her husband in bed with another woman.”
²

For this book I interviewed nine people with MS, eight of them women. (About 60 per cent of those affected are women.) The emotional patterns illustrated in Natalie’s story are evident in each person, if not always as dramatically.

The evidence gathered from my interviews is consistent with the published research. “Many students of this disease have voiced the clinical impression that emotional stress may be somehow implicated in the genesis of MS,” a research article noted in 1970.
³
Excessive emotional involvement with a parent, a lack of psychological independence, an overwhelming need for love and affection, and the inability to feel or express anger have long been identified by medical observers as possible factors in the natural development of the disease. A study in 1958 found that in nearly 90 per cent of cases, “before the onset of symptoms … patients experienced traumatic life events that had threatened their ‘security system.’”
⁴

A study done in 1969 looked at the role of psychological processes in thirty-two patients from Israel and the United States. Eighty-five per cent of these MS patients experienced the emergence of symptoms that were subsequently diagnosed as multiple sclerosis in the wake of recent highly stressful events. The nature of the stressor varied considerably, from the death or illness of loved ones to a sudden threat of loss of livelihood or perhaps to a family event that caused permanent change in a person’s life and demanded a flexibility or adaptation beyond his ability to manage. Protracted marital conflict was one such source of stress, increased responsibility at work another. “The common characteristic …” write the authors of the study, “is the gradual realization of the inability to cope with a difficult situation … provoking feelings of inadequacy or failure.”
⁵
These stresses held across different cultures.

Another study compared MS patients with a group of healthy “controls.” Severely threatening events were ten times more common, and marital conflict five times more frequent, in the MS group.
⁶

Of the eight women with multiple sclerosis I spoke with, only one was still in her first long-term relationship; the others had separated or divorced. Four of the women had been abused physically or psychologically by their partners sometime before the onset of illness. In the remaining cases their partners had been emotionally distant and unavailable.

Lois, a journalist, was twenty-four when she was diagnosed with MS in 1974. A brief episode of double vision was followed some months later by pins-and-needles sensations in her legs. She had lived the previous two years in a small Native settlement in the Arctic with a man nine years her senior, an artist whom she now describes as mentally unstable. Later he was hospitalized for manic-depressive illness. “I idolized him,” she recalls. “He was very talented, and I felt I didn’t know anything. Maybe I was a little afraid of him.”

Lois found life in the Arctic extremely difficult. “For a sheltered West Coast girl, it was like moving to Timbuctoo. I saw a psychologist years afterwards, and he said, ‘You were lucky to get out of there alive.’ There was a lot of drinking, death and murder, isolation. There’s no road in there. I was physically afraid of my partner, of his judgment and his anger. It was a summer romance that should have lasted a few months, but it lasted a couple of years. I tried to hang on as hard as I could, but eventually he kicked me out.”