I didn’t think we would need a file cabinet, and I telephoned Facility Management to have it removed. Then I fetched some garbage bags, cleaned out the bookcase, and brought everything down to Dr. Romero’s new office. Last, I called in Rose, our long-suffering, gentle Chinese janitor.
Rose looked around the office. Her face lit up. “Ah, Dr. S.! Bird gone! I clean floor now! And window! And walls!” She shook her head. “Bird not belong in hospital!”
Then I left Rose to do her job and went out to see how the admitting ward had fared in my absence.
It, too, hadn’t changed much.
The nursing station was just as crowded as ever, with the patient charts in their rack by the door. Larissa was still there, with her Russian accent, her irony, and her competence; her thin gold necklace, good haircut, and Italian slacks. The head nurse and most of the nurses were the same, and while they were sad that Dr. Romero and Dr. Dan had gone, they were happy to have me back.
The patients hadn’t changed either, in style if not in substance. I walked down the ward to take a look. I introduced myself, sat on their beds, shook their hands, and said hello. Although I didn’t know anyone in particular, I knew them all in general; they were nice; they were funny, interesting, and quirky. Then Larissa handed me a set of stamped-up index cards and a cup of fresh coffee, and I went back to our little doctors’ office, which was once again looking the way a little doctors’ office should look.
Although the doctors’ office was the same, the nurses were the same, and the patients were the same, there was something different about the admitting ward.
What was different were the doctors I worked with, the medical students I taught, and everything outside Laguna Honda. During the years I’d been studying Hildegard, I’d been protected from those changes, but medicine was different—the practice of medicine had become the delivery of health care.
I had changed, too, but in a diametrically opposed way. Back on the admitting ward, meeting my old self, I discovered I did things differently; I saw things differently.
I took back to the admitting ward the lessons I’d learned from Mr. Bramwell and Mr. Bramwell’s sister-in-law, from Mr. and Mrs. Teal, from Paul, and from so many others, and, somehow, medicine no longer seemed so complicated. There were not so many different things that could happen to a body after all. There were many ways that things could happen, but there were only a handful of organs and a handful of mechanisms of disease, and the 2,630 pages of Harrison’s Principles of Internal Medicine no longer seemed so daunting. So many of them were extra, I knew now, not important, and the complicated edifice of medicine seemed to collapse upon itself. I began to enjoy my patients and know that I enjoyed them and that they enjoyed me. Because I didn’t have to do very much, I knew now. With just a little bit on my part, my patients would get better.
I used to wonder about the old doctors. They would do—hardly anything at all. They would come in, say hello to the patient, ask him his name, and then lean forward for his reply, all the while watching the patient’s face and body. They would give him their hand for a handshake and then hold the patient’s hand in theirs. They would ask just a few questions. Then they would tell us what the diagnosis was. It was maddening. And now what I was doing was more like that, and it was no longer burdensome or stressful.
Mr. Steven Harp, for instance.
Steve was not my patient.
He belonged to Dr. Rajif, one of the two new doctors on the admitting ward, who had, along with me, replaced Dr. Dan and Dr. Romero. Dr. Rajif was the doctor who admitted Steve and did his workup, and he had concluded that things were as the County Hospital said they were: Mr. Harp was a Bad Boy with bad luck. At the age of thirty-four years, while using cocaine, he’d had a stroke; and now at thirty-eight years, while using cocaine, he’d had another. He could no longer walk; his speech was muffled; and he had so much trouble swallowing that he couldn’t manage his own saliva. Also, he had heart failure. There wasn’t much to do for him, but Dr. Rajif ordered physical, occupational, and, especially, speech therapy, because Mr. Harp was so difficult to understand that he had to write down whatever he wanted to say.
Now, in the past, Mr. Harp, not being my patient, would never have come onto my radar screen. In the old days on the admitting ward, with Dr. Jeffers, Dr. Romero, and Dr. Fintner, I stayed out of other doctors’ patients unless invited in. Too many doctors spoiled the patient’s broth, I knew; every doctor had a style, with medicines and ways that worked for him or her. Some doctors were aggressive, doing everything for everybody all the time, and their patients improved. Other doctors did as little as possible, and their patients improved, too. Some doctors used one medicine for a certain disease, while another found that very same medicine ineffective and swore by a different one. Which made the evidence-based, data-driven people crazy and demonstrated that medicine was not only a science but an art. What did not work, I’d learned, was to step into one doctor’s studio or kitchen and add a dab of blue and some cumin for good measure.
That was in the old days.
But in the new days we had new doctors who didn’t seem to mind my keeping an eye on things. So when I walked past Steve’s bed, I paid attention to him, although he was not my patient. And when he flagged me down, I stopped.
He looked much younger than his thirty-eight years. He had a dark brown, round, smooth face, unlined and unwrinkled, with round, button-black eyes, and short, thick black hair. His shoulders were heavy and muscular, and so were both his arms and legs. But he was drooling and impossible to understand, his voice being so low and his words running together softly, insistently. Somehow he didn’t seem quite like the stroke victim that I’d heard about from Dr. Rajif, and I was curious. So when I got back to our office, I opened his chart and began reading about him.
Steve had been admitted to the County Hospital four years before because of a sudden neurologic change. He was weak on his left side; he drooled; he had trouble talking; and he’d taken cocaine. A stroke, it was thought, most likely. But his brain scans had been ambiguous, and so many other studies were done—looking for AIDS, for a brain infection, for an autoimmune disease, a clotting disorder. Nothing panned out. His doctors therefore concluded that he must have had a stroke and they discharged him to a skid-row hotel with all necessary services. Then he’d been stable until five weeks ago, when his social worker noticed he’d taken to his wheelchair and was spending all day in the lobby, watching television and drooling, and when he tried to eat, he choked. So she contacted the County and arranged for him to be admitted for another workup. Once again it wasn’t clear what was wrong, but most likely another stroke. Certainly he had deteriorated, presumably from taking cocaine, and in any case, he could no longer manage for himself. So he was sent to us.
At the end of his first week there was a meeting with Steve’s team of nurses, therapists, social worker, and family. Since Dr. Rajif was on vacation, I attended in his stead. The meeting intrigued me further.
First, there was Steve’s sister, Bonnie. She told us that Steve was the thirteenth of eighteen children by eleven different fathers and that both his mother and his father had been alcoholics. Nevertheless, he finished high school and attended college. He married, had a daughter, divorced, and became a commercial truck driver. Steve loved driving trucks, she said. In fact, he stopped driving trucks only this past year, when he took to his wheelchair and became impossible to understand.
“He was driving trucks up until a year ago?” I asked.
“He sure was.”
That seemed impossible.
What did she think was going on, then? If he had a stroke years before and was still driving trucks until a year ago, what had changed?
“He’s just lazy,” she said.
I looked at Steve, who was listening attentively.
He nodded and got out “Yeah, I’m just lazy.”
Then the nurses discussed his nursing needs; the social worker described the unfortunate state of his roo
m in the skid-row hotel; and last the speech therapist reported. Steve’s problems with speaking and swallowing were much greater than warranted by his stroke, she told us. Even she couldn’t understand him and had to have him write down his answers to her questions.
“Look.” She passed around his answers.
Steve wrote a nice hand, I saw, when his answers got to me. His letters were small, carefully formed, and neatly printed; and he wrote in full sentences, with a sophisticated vocabulary. To the therapist’s question about why he left a previous rehabilitation facility, he’d written: “I was asked to leave because I was a single parent and they could not accommodate me.” And, my favorite: “I used to love writing.”
Neatly printed, sophisticated sentences did not go along with what seemed like a dementia from multiple strokes any more than Steve’s symmetrical, well-muscled body or his ability to drive trucks—even badly—as recently as a year ago.
So after the meeting I sat down with all his records and began looking for a unifying diagnosis.
It popped out pretty quickly. Someone at some time had ordered a CPK on Steve—a blood test that measures the amount of creatine phosphokinase (CPK) in the blood. It is an enzyme mainly found in the muscles of arms, legs, and heart; and the test for it is usually ordered when a heart attack is suspected, because a heart attack damages the muscles of the heart and causes them to leach CPK into the blood. Steve’s CPK had indeed been high—one hundred times normal—which was too high to mean he’d had a heart attack, because a heart attack that big would have killed him. A CPK that high could have come only from injured skeletal muscles.
This is not rare. If a patient receives an intramuscular injection just before the CPK is drawn, then the result can be very high. Or if he is taking statins to lower his cholesterol, it can be high. Steve must have had an intramuscular injection before his CPK was ordered, I thought, or he’d been taking statins. But when I looked through his records, there was no evidence of either an injection or a statin.
Which left the rare diagnosis of muscular dystrophy.
Muscular dystrophy is a genetic disease: a faulty enzyme causes the muscles to deteriorate. It runs in families. The girls are carriers; the boys are affected as children and usually die in their teens. Since Steve was in his thirties and since his sister hadn’t mentioned any family history, muscular dystrophy would be a very surprising diagnosis. On the other hand, muscular dystrophy does cause exactly what Steve had. It would explain his big shoulders and thighs, which were, however, weak; his drooling, choking, and low voice. It would explain his clinical course—his gradual deterioration and his heart failure. And there was a rare form that did affect adults—only three people out of 100,000—but then, this was Laguna Honda.
I ordered another CPK. It, too, was one hundred times normal, and since Steve wasn’t taking statins and hadn’t received an intramuscular injection, this meant he did have the diagnosis of muscular dystrophy.
It was satisfying to have made the correct diagnosis, but it wasn’t a good diagnosis to have made. It was not a better diagnosis for Steve than stroke. With a stroke, even with two strokes, if he stopped using cocaine and dedicated himself to his rehabilitation, he would stabilize and improve. But muscular dystrophy was progressive. Steve might improve a bit with the care he would get at the hospital, but over the long run he would only get worse. The diagnosis did prove that he wasn’t lazy, and it did mean that our focus could change from stroke rehabilitation to dealing with an ongoing muscular process. Also, since muscular dystrophy was a sex-linked disease, passed along from mother to sons, it was also something the family should know about.
I thought for quite a while how I would explain this unusual genetic diagnosis to Steve and his family. With his permission, I started by telephoning Bonnie.
“I think we’ve discovered what’s wrong with Steve,” I began.
“I thought we knew. I thought he had a stroke.”
“Well, he might have had a stroke, too. But a stroke doesn’t explain what’s been going on this past year. Steve has a rare muscular problem.” I took a breath. “It runs in families and …”
“You mean—like muscular dystrophy?”
“Uh … huh … yeah … How do you know about muscular dystrophy?”
“Well, one of our brothers has muscular dystrophy, and he died of it. And one of our cousins has it, and an aunt, or maybe it’s an uncle.”
I had been rather proud of my diagnosis, and when I heard Bonnie’s “You mean—like muscular dystrophy?” I was nonplussed. The diagnosis had been there, right out in the open, all along.
“Well, then, yes. Exactly like muscular dystrophy. So it hasn’t been a stroke that caused Steve to deteriorate this past year but muscular dystrophy. Along with his lifestyle, of course—the cocaine, the not eating well, the not taking care of himself. As you know.”
“Maybe you can talk to him about that, doctor. I’ve tried, but no way he’s gonna listen to me.”
“The main thing is: The family should understand—this does run in families, mainly in the boys.”
“Uh-huh. You gonna tell him?”
“Of course.”
I did tell him, but Steve didn’t seem to care. He didn’t mention his brother, cousin, or uncle; all he talked about was that he wanted to keep trucking and would I fill out the form he needed to get his driver’s license back?
I temporized on the license and called Dr. Hanes, our rehabilitation doctor, to persuade him to take Steve for a course of rehabilitation. He could learn some strategies for dealing with his weakness, I said; he could learn about his disease and how to take care of it, and perhaps some of the deterioration due to his lifestyle could be reversed.
Dr. Hanes was a good-looking doctor, with wide-open, though small, blue eyes, blond hair with a cowlick, and a square face. He wore buttoned-down, pressed white shirts, colorful ties, and a starched white coat he made sure not to put through our laundry. He’d graduated from the University of Virginia School of Medicine and had the noncommittal smile of a Southern gentleman. Dr. Hanes did not approve of our city’s attitude toward Bad Boys. And when he went to see Steve, and Steve asked him to sign his trucker’s license, Dr. Hanes’s mouth went up at one corner and down at the other; he raised his eyebrows and rolled his eyes. He didn’t even say no.
Dr. Hanes was skeptical of the diagnosis of muscular dystrophy, and he was skeptical of Steve’s improving. Still, he did accept him on the rehabilitation ward.
Dr. Hanes turned out to be half wrong and half right. A muscle biopsy confirmed the diagnosis of muscular dystrophy, but, as Dr. Hanes predicted, Steve didn’t improve much. After a few weeks of therapy, he was able to walk again, but that was about it. Then he stopped going to his therapies, and became annoying, disruptive, and manipulative, as Dr. Hanes documented in his notes. Steve perseverated on his trucker’s license. He swore at the staff. He ran his electric wheelchair full speed into crowds. He smoked marijuana; and no matter how many contracts he signed, he broke every one.
I don’t know what the final straw was: when Steve began antagonizing the bedbound patients on rehabilitation by turning off their televisions; when he urinated in Dr. Hanes’s plants; or when he pushed into Dr. Hanes’s face the four-page truck driver’s form he’d somehow acquired. At any rate, after five weeks Dr. Hanes had had enough. Steve could walk; he could take care of himself; he no longer needed our care. So Dr. Hanes called a van. Then, as the state’s regulations required, he informed Steve, Steve’s family, and his outside physician of his imminent discharge, and Steve was reintegrated back into his community. To wit: A van dropped him off at the lobby of his skid-row hotel.
I could see Dr. Hanes’s point. Steve was a Bad Boy with bad luck, and he wasn’t even charming. And yet I kind of liked him. True, he didn’t do what was good for him, and he did do what was bad for him; he wasn’t stupid, but he ignored his diagnosis, and he did go on about that driver’s license. Still, I couldn’t help but respect him, jus
t a little. He was determined not only to live until he died, but to live as himself until he died.
Besides, he’d taught me something unique. The sound of his sister’s voice, “You mean—like muscular dystrophy?” echoed in my ears for years, and even to this day, as a reminder of how much we don’t know about our patients or, for that matter, about one another. There’s so much experience in a single life, in a single day. Even with all the questions in the history, there was so much I would never know about my patients.
I learned something else from Steve: I was becoming like one of the old doctors. I hadn’t done his workup or examined him; I had done nothing but listen to him and look into his eyes. The fact was that he didn’t fit the pattern of all the stroke patients I’d ever had, which was why I’d gone through his records. In medical school they’d taught us: “If it looks like a duck and walks like a duck and quacks like a duck, it’s a duck.” What I learned from Steve was that the contrapositive was better and truer: “If it doesn’t look like a duck and doesn’t walk like a duck and doesn’t quack like a duck, it’s not a duck.” If it doesn’t look like a stroke, it’s not a stroke.
In thinking about Steve, I realized that there was something special about how those old doctors looked at the patient. They were quiet. And now for me also; since medicine was no longer complicated, burdensome, or stressful, when I saw a patient, I, too, was quiet. I had lots of time. There was no emergency.
It was in this way that the admitting ward had changed for me. It was just as hectic, chaotic, and noisy as ever; its patients were as sick or sicker, but somehow—perhaps it was the pilgrimage—I’d learned to key into the calm, order, and quiet that lay underneath its hecticness, chaos, and noise. That quiet was the opposite of interruption. It was the quiet of walking, the quiet that underlies all activity. It’s where everything is connected. Once you key into it, there are no emergencies, and you have all the time you need.
God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine Page 27