Twelve Patients: Life and Death at Bellevue Hospital (43 page)

Months later her complaints shifted subtly, and then abruptly, to chest discomfort. Heaviness with effort, a tightness that came with a cough. New-onset asthma, I thought. We went over her living conditions, allergies, pets, dust, and travel. Medication trials were mixed, and the persistent symptoms prompted me to send her to a pulmonary specialist. The standard workup included pulmonary function tests, inhalation provocation tests, a CT scan, and invariably different combinations of the newest asthma medications. No change. After exhausting all the possible pulmonary possibilities, the lung specialist felt the symptoms might be refluxing stomach acid irritating her upper airways, so he made a referral to a gastroenterologist.

The GI specialist slipped a black flexible tube through her mouth to view the lining of her stomach and esophagus. The normal endoscopy was followed up with a “swallow” of liquid chalk-like contrast to look for acid reflux, also normal. Alicia left the office of an über-specialist with a wire from her esophagus poking from her nose and duly recorded her symptoms in a diary for seventy-two hours. The acid readings were normal.

“I can’t seem to get better,” she would sigh. “It would be nice to know what’s going on with me.”

Ditto, I thought. What next?

The senior physician entered possible cardiac disease into the diagnostic equation, having been burned by a recent missed case. He took the liberty of arranging for a cardiologist “to be on the safe side.”

After a brief history and physical in the doctor’s office, an echocardiogram showed detailed anatomic pictures of the beating heart with normal valve and muscle function. The stress test that followed added no abnormalities on the repetitive squiggly lines of the EKG that poured off the machine. The cardiologist gave her a thumbs-up.

The tuna sandwich remained in its wrapper and the room-temperature
Dr. Brown’s cream soda sat on my clinic desk late one afternoon a few months later as Alicia related her lower abdominal cramping, diarrhea alternating with constipation, and some blood in her bowel movements. Directed by a vegan-disposed dietitian, she had switched her diet to slurries of fruit and vegetable shakes fortified with assorted powders.

I wondered what was going on with Alicia. How had she become caught up in the web of technological probes and rays? What were her symptoms trying to tell me?

Some years earlier, sitting at lunch with Diana and my mother on our porch, we started talking about these odd symptoms. The view of the valley from our old farmhouse in New Hampshire was stunning. My parents had brought us a large cooler of food from Zabar’s, the ultimate food emporium in Manhattan, convinced there was no food in the Upper Valley. We never told them otherwise. Why spoil the spoiling? We were enjoying the smoked salmon, sable, scallion cream cheese, and fresh bagels with crisp chilled white wine while some Andalucian
coplas
sung by Martirio filtered from the living room. I began talking about the frustrations of caring for many of my patients who seemed to have ever-shifting symptoms.

“I didn’t know what the problem was at all. The diagnosis, that is.”

“What do you mean?” my mother, May, asked me point-blank, her dark eyes focused on me. She was very direct and always came to the point. My family assumed it was from a life-threatening illness as a young teenager. Did that make her so no-nonsense? Who knew?

“After all my years looking after patients, I realized that half of the people who come in to see me have nothing physically the matter with them.”

“What do the patients complain of when they come in?” May was curious now.

“A stew of different things. There is no single pattern. That is part of the puzzle. The symptoms morph, they change. I mean a patient may have stomach or intestinal symptoms and then later back pain.
Headaches and then tiredness or profound weakness. Chest pain. Things that sound like allergies, insomnia, food sensitivities. It goes on and on.”

“Somatization.” Diana put the name on the transformation of psychic distress to physical symptoms.

“Exactly. You have to work your way backward. The patient has the symptom, say, chronic back pain. After testing you see there is no physiological
there
there. Everything is normal, from the point of view of the medical establishment. Some patients are reassured momentarily. The evaluation relieves them. Others bail and seek all the alternative therapies and healers. For others, it’s frustrating because we have not found the underlying problem. The pain remains unexplained.”

“So now what?” May asked.

“Well, several possibilities. There are many layers, like an archaeological dig. On the top layer we have the physical complaint—say, back pain or headaches. The patient goes to the doctor and, hopefully, gets the diagnosis. Many doctors stop there after running some tests or prescribing some medication. Or they kick the ball to another specialist. For the patient, though, this label has a real function.
I can’t go to work because I have a back spasm. I need to be alone because I have a migraine
. The label offers legitimization; it carries rights and privileges. Others might even look after them or help them out.

“A deeper evaluation, however, reveals depression and anxiety, the most common expressions of psychic distress. This is an almost universal manifestation of dis-ease—thus the huge market in anti-depressants. The fastest-growing market.

“But another level down we see the effects of self-medication—alcohol abuse, drugs, and often violence in the home. This is harder to talk about, and to treat. Most doctors don’t go near this.

“The next layer down reveals a lack of love and intimacy. These go hand in hand with a lack of self-esteem, shame, and a deep sense of humiliation. Humiliation is the well that everything comes from. The anger comes from that humiliation and underlies everything else. It’s the propellant.”

“But men will express that anger and humiliation in a different way than women do, right?” Diana asks.

“Yes, women tend to internalize their anger. They’re not allowed to express it, so they turn it on themselves with depression, cutting, eating disorders, suicide attempts, and trips to the doctor. Men usually turn their anger outward, as aggression,” I said.

“They externalize?” Diana said.

“With alcohol and drugs, and often physical stuff like hitting, abuse, domestic violence, inflicting pain on one hand, and on the other withholding feelings. Like a bank account. No withdrawals today, this month, or ever. Partner punishment. Men are more likely to kill themselves, though women attempt suicide more frequently. And homicide is the perfect expression of the humiliated disrespected male. They find it better to kill and be incarcerated than suffer the pain of shame, a form of non-being, social death, or soul death. I am thinking that humiliation is the common denominator, the deepest linkage of them all.

“But you know, there is another level. Think of the reigning myths in the United States about individual responsibility, making it on your own. We all live in a complex grid of social relations, class and race structures, economic and political histories. We are not tabula rasas, blank slates. The connections to a much deeper and in many cases darker reality are obscured in the daily medical world. It sort of reinforces the main national story.”

We all sat there for a few minutes and didn’t say anything. The afternoon light slanted through the huge sugar maple that air-conditioned the house in the summer and shed its leaves in brilliant colors every October.

“So let’s go back to all the women who seek care in your office. They express neglect, you think?” Diana asked.

“Many of these women are neglected. Emotional neglect is so powerful. The fact that people are married for forty years, or have partners, doesn’t begin to explain what is happening under the covers. I don’t mean that only literally. The temperature of the relationship can be pretty close to zero degrees.” We all turned at the same time as a
posse of kids, ours and their friends, emerged from an apple orchard completely covered in dirt jabbering away.

“Unloved Woman as a diagnostic category,” Diana summed up. “Is that what you are talking about?”

“Yes, precisely.” I took a pause. “Strange. What you never see as a diagnostic category: the absence of love. Abuse manifesting itself as backache. Neglect resurfacing as chronic, unexplained pain. You have to go to the artists to find the emotional depth I am talking about.”

“So women turn the emotional pain in on themselves and get physical symptoms?” my mother asked rhetorically. “That is what you are saying, Ricky.” She always used my childhood nickname. She was sitting upright. She was small of stature but “mighty,” we all conceded.

My father had joined us by this time after a visit with my brother in Norwich, Vermont. My mother filled him in on the conversation. His own doctor career began during World War II in Okinawa after an internship in Boston City Hospital; by now he had been in medical practice for decades. “Bob, do you see the kinds of things Ricky is talking about? I mean with your patients. We haven’t ever talked about these issues,” my mother asked my dad.

“No, I haven’t,” he said thoughtfully. He knew his patients very well, and they stayed with him for a long time. He was a doctor’s doctor, living and breathing medicine with full enjoyment of his chosen profession. This was a generational issue in medicine if ever there was one. It was like him asking someone about their sexual orientation. He just didn’t go there. Never. He could have a herd of elephants in a room and swear he was at Lincoln Center and not the Big Apple Circus.

A few days after my parents had returned home, my mother called me. “I can’t believe it. I just can’t believe it. I’ve known her most of my life.” By this time I had forgotten what we’d been talking about. “Helen. She was sexually abused as a young woman. Raped by a family friend. Can you believe that? I told her my son the doctor has this new crazy theory and had she ever heard anything like it and she just told me. She’d never put it together with all her symptoms, and no doctor had ever asked her.”

After thinking back on that phone call, my thinking shifted—from symptom to person. I realized how little I really knew about Alicia Rittner. I had focused on her physical complaints and been technically thorough with a full slate of specialists and testing capabilities. But I had been treating her as a specimen rather than a human being. I knew next to nothing about this young woman in front of me. The balance of when to look and how hard to pursue is a complex one. Different patients require different strategies.

I rethought the case as it evolved over time, questioning Alicia when she came back to see me over the next few visits about the possibility of depression, anxiety, drug or alcohol use, the most common culprits. Then a deeper dive into the wider circles around her—children, her partner(s), income and expenses, the neighborhood, her friends and network of social supports and family. I was trying unsuccessfully to get at her feelings. A hint, a whiff, an opening, in her safe public persona that might give me a clue about where her symptoms came from. She handled me like a tennis pro running me from baseline to baseline.

Everyone has secrets, private fears and fantasies. They may share them with a special person or keep them behind walls and off-limits. Sometimes they are the small humiliations and hurts that dully persist into adulthood and rob us of the full range of feelings and intimacy, like color blindness or a phantom limb. In one case something is missing and you don’t know what it is. In the other something is gone but it feels like it is there. For some people there are unspeakable demons. Vigilance may be needed to keep them from overwhelming the walls we build to protect ourselves. Denial is a first-responder strategy, but it is not adequate for all emotional situations. Dissociation or splitting a personality into pieces develops in childhood as another level of strategic coping with intolerable anxiety. It is effective, and like many coping strategies it becomes a way of living, part of who you are. At some point it can interfere with intimacy and building and maintaining relationships. Hair triggers, seemingly inconsequential and nearly invisible, can send someone into another zone in a moment.

“Alicia, something doesn’t add up. Your tests are fine. You are healthy from every point of view. Yet I feel something is going on. Do you have an idea what it might be?” The visits reassured her. I stopped doing more than taking my stethoscope out of my coat pocket, making a quick reassuring check of blood pressure, heart, and lungs, and listening. Low tech and high touch.

When she left the office one day, I had a few moments of downtime while we were hunting for a Fulani translator for my next patient. The Fulani, a widely distributed West African people, had a language with many dialects, as complicated as the regional politics. My mind drifted to other patients in other times. A woman in her seventies reappeared like a daydream. She was in a long-term marriage to a pillar of the community, a banker, who was highly respected for both his financial sagacity and his public generosity. She had been to see me for over a dozen years with multiple complaints that changed with the seasons or orbits of the moon. Slight, formal, and superficially friendly, she was always immaculately dressed.

One night she was hospitalized with chest pain. We worked her up for a heart attack. But nothing.

I sat by her bedside in the stillness of a hard New Hampshire winter and asked her what was going on. Quietly, and with great precision, she told me a long story about how her husband sexually abused her young granddaughter over years. She put a stop to it immediately when she found out. But she could not bring herself to go to the police or even her priest for fear of destroying her family’s reputation and their standing in the community. She reviled her husband. A savage intensity radiated from her eyes, and the tension in her body ionized the exam room. It had taken years for these words to be spoken out loud to another human being. Her family life was a vortex of anger, guilt, rage, impotence, and bottomless shame. The secret was poisoning the next generations. She was dying of a broken heart.