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Infectious Diseases in Clinical Practice:
doi: 10.1097/01.idc.0000246155.32259.c4
Reflections of an ID Specialist

The Months of Darkness

Louie, Ted MD

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University of Medicine and Dentistry of New Jersey, New Brunswick, NJ.

Address correspondence and reprint requests to Ted Louie, MD, 579A Cranbury Road, East Brunswick, NJ 08816. E-mail: tedlouie@msn.com.

I slowly laid out the supplies on the bed, scarcely looking at the patient, then carefully tightened the tourniquet, and watched dry mouthed as the blood flowed into the syringe. It was 1989, and this was my first time drawing blood from a patient with acquired immunodeficiency syndrome (AIDS). I was a third-year medical student, helping out on weekend coverage, and had never even met the patient before.

Of course, I was extremely apprehensive, and fully comprehended the small, but tangible, risk involved. Working oh so deliberately, I released the tourniquet and inserted the needle into each blood tube, then walked ever so slowly to the sharps container, the butterfly needle containing the human immunodeficiency virus (HIV)-laden blood dangling down at arm's length. Mission accomplished, I retreated from the room, barely acknowledging the man sitting so quietly on the bed. I heaved a sigh of relief. I had completed the task mechanically, but there was no joy in it, for I was worried about my own safety. Just more scut work, I thought to myself.

Those were the days not long ago when we routinely capped needles, and there was no such thing as "needleless" intravenous tubing. We did know about the AIDS virus, of course, so it was not the same feeling as those who had trained in the early 1980s, when young gay men were ending up in city hospitals with mysterious illnesses and dying. Most physicians in training were exposed to HIV-containing blood. A resident I knew who would have been an extraordinary surgeon went into physiatry instead, to avoid putting himself at risk. An otolaryngology resident, who had trained in New York City and experienced numerous high-risk exposures, grimly bought the maximum amount of life insurance he could without requiring a blood test, before he went off to employee health to have his HIV test drawn; fortunately, the test result was negative. Hearing these stories, I cannot say I was all that comfortable with the notion of dealing with patients with AIDS.

I did not have everyday contact with AIDS until December of my internship year. The year had been a tough one, of course. I slogged through endless admissions, overnight calls, inserting intravenous lines, drawing blood, placing nasogastric tubes. As an intern, working mechanically, efficiently, and rapidly were virtues; in my cardiology rotation, for example, I churned out endless cookie-cutter histories and physical examinations without getting to know the patients in the slightest. In fact, I was more artisan than artist. I was technically proficient, and my knowledge base was growing, but I had not yet learned how to connect emotionally with the patient, nor had I discovered the delicate balance between science and art.

And now the days were growing shorter, and the "dark months" were coming. These were the months which the senior residents had told me about, months when you never once saw the light of day, when it seemed the year would never end, when you struggled grimly on with your scut work, not caring very much, and just trying to survive. I was quite apprehensive about my upcoming rotation on the AIDS floor. In the pre-highly active antiretroviral therapy era, of course, the beds were filled with end-stage patients, their gaunt bodies racked with suffering. Some had endless diarrhea, others had fungal meningitis, pneumonia, or were half-blind with viral retinitis. How would I deal with seeing so many young patients, so close to death? How would I deal with gay men? How would I feel about doing central lines, knowing that if I stuck myself, I would stand a chance of contracting AIDS myself?

On my first day on the AIDS floor, however, I began to feel more comfortable. The AIDS floor was the most closely knit unit in the entire hospital. The nurses all seemed to have a compelling reason to be there. Most had had relatives who had succumbed to AIDS, whereas there was at least 1 nurse who himself had AIDS. He struggled on with his work, but at some point was unable to insert intravenous lines anymore, for his hand was shaking too much from AIDS-related neuropathy.

And then there were the ward attending physicians: each had a profound sense of duty, a certain nobility of spirit. They knew their work was important, and they embraced their heavy responsibility; yet they were wonderful, caring physicians who balanced their medical knowledge with extraordinary sensitivity and empathy toward their patients. This contrasted with some of the other attending physicians in other subspecialties, who treated the patients with AIDS as second-class citizens.

The second week of my rotation, I admitted a 19-year-old girl named Carol. She was disheveled and unkempt, and would barely speak to me. There she sat, short of breath and coughing, sullen and withdrawn, refusing to leave her room for a single minute. I found it extremely painful to round on her, for every time I saw her I had to supply her with more bad news: yes, she had Pneumocystis carinii pneumonia; yes, she had tested positive for the HIV virus. I believe she knew this even before the test came back, but of course she had been in denial and neglected herself for years. At what age had she contracted the virus? In her early or midteens? Each morning, I stood awkwardly beside her, listening to her rhonchial chest, knowing full well that she wanted to hide under the bed.

My attending physician, a gentle, avuncular man, rather quickly ascertained that she had friends who worked in the hospital, and was extremely concerned with not letting them know that she had HIV. After we took some steps to minimize the chance of her friends finding out, she gradually relaxed, and it was heartening to see her emerge from her shell. As she improved clinically, we got to know her better, and she really was a rather sweet girl.

In the face of all this overwhelming sickness, it would have been easy to recoil in horror or to become cynical and jaded. Yet, just the opposite happened. As I got to know the patients better, I began to feel a strong connection to all of them. These patients came from different walks of life. Some were highly educated professionals, some were homeless drug addicts. Some were tireless AIDS activists, whereas others tried to stay anonymous. Some were model citizens, and some were on the extreme wrong side of the law.

Yet, for all their differences, the patients were united by this dreadful illness and, vulnerable in their hospital beds, what remained was their humanity. I was most impressed by the great courage and dignity that most of them displayed in their last few weeks and months of life. For many, I had no illusion that I could do anything more than temporize their illness. What I learned that month was that when there really was no effective treatment, the medicine we still had was compassion. For the first time in my internship, the things I did no longer seemed rote and taken from a protocol, but rather came directly from the heart. I already knew all the small gestures to comfort my patients: the friendly pat on the hand and the understanding smile. The biggest gesture, however, was quietly listening to their life stories in a completely nonjudgmental way.

This worked best of all.

The month passed quickly, and by the end of December, I felt I had gone through a lifetime of experiences. It was now Christmas Eve. The ward was decorated with the usual finery and twinkling lights of the season. As we made resident rounds that morning, we knew that most of the patients would not survive to see the following Christmas. Simultaneously, we came up with the same idea: to send as many of our patients home for Christmas as possible, even for a few hours, on the 1 day of the year when they might go home and feel for 1 last time the hope, the feelings of youthful exuberance they once had not so very long ago. This was the first time as an intern, I think, that I understood what it felt like to do the best for my patients. I no longer felt bound by protocol, but instead felt liberated to do the right thing.

As usual, we worked late that night. As we walked toward the elevator, we passed Carol on her way out. Her transformation was amazing. Her thick brown hair neatly combed, fresh lipstick applied, she looked pretty and radiant. She gave us a great big smile, then was gone.

I walked out into the still winter night. It was cold, but the evening sky was clear and filled with stars. Far from being burned out, I had a wondrous feeling of hope for the future. These were still the dark times of the AIDS era; but soon, ever so soon, if we could all hope and pray and work hard enough, maybe, just maybe, the dark months would soon be over.

Epilogue: Carol was readmitted to the hospital several months later with a seizure. She was diagnosed with central nervous lymphoma and never walked out of the hospital again.

The first effective 3-drug HIV regimen was introduced some 4 years later. Not long thereafter, the AIDS ward at University Hospital became obsolete, as fewer and fewer HIV patients were admitted to the hospital.

The author became an infectious diseases attending physician in July 1996, and every day is gratified to see many of his patients doing well on highly active antiretroviral therapy. He dedicates this essay to the staff of 15 South in the University Hospital at Stony Brook, New York, who served selflessly and heroically during the long dark months of the 1980's and 1990's.

© 2007 Lippincott Williams & Wilkins, Inc.