“Maybe when I’m on my deathbed, I, too, will say I’m fine.”
BY DANIEL BAXTER
At the Holy Cross Hospice in Gaborone, Botswana, it was sometimes easy to forget, as doctors often do, that every patient was unique and special, especially when so many patients seemed so similar. Joyce M. was such a patient. End-stage AIDS, profoundly wasted, alone in a small single-room hovel in Old Naledi, the capital’s slum. When I first laid eyes on her on a home visit, I could have sworn I’d seen dozens exactly like her before.
We entered her shack in the outskirts, directly across the road from a petrochemical plant. With me was Puso, the hospice nurse. Sometimes I was amazed—and concerned—that I wasn’t depressed by such forays into the abyss. Was I totally indifferent, hardened to my patients’ suffering? Or was my calm reaction to repeated scenes of privation and anguish really a cop-out, a facade? Whether false bravura or a manifestation of inner peace, I should have known, but all I wanted to do that day was see her and move on.
Puso had told me that ever since Joyce had been diagnosed with HIV two years previously, she had frequently “defaulted”—missed, stopped, or ignored her HIV treatment and visits to the clinic. Maybe she had side effects, maybe she had more pressing personal problems, maybe she was depressed, or perhaps she found it difficult to hide her ARV medications—and her HIV status—from a former partner or family members and therefore stopped taking them. Yet for whatever reason, a few months previously Joyce “un-defaulted” and returned to the HIV clinic, which restarted her ARVs. It was a story I’d heard many times before.
Her home was a replay of so many others I’d visited. A massive bed, covered with large pillows and heavy blankets, took up at least three-quarters of the room. Off to the side of the bed was a small counter, on which a compact gas-fueled hotplate rested, along with some plates, utensils, and a few canned goods. The only decoration was a framed graduation photo, of a young man in cap and gown. He was smiling the smile of every graduate who is happy his studies are over and that a life of joy and wonder lies ahead. The house was hot and dark, and it took a few seconds for my eyes to adjust from the brilliant sunshine outside. At first, I thought we’d been stood up: I couldn’t see anyone there—there was a pile of blankets on the bed, but no Joyce.
“She’s on the floor,” Puso helpfully pointed out.
Sure enough, there she lay, on a small mattress, in the narrow space between the bed and the wall. I squatted down into the shadows and introduced myself, asking if she understood English, which she did. Without uncovering her, I could see from her sunken eyeballs and gaunt face that she had advanced AIDS. I asked how she was feeling.
Lord in Heaven : how many times had I heard the same monosyllabic reply from similarly desperate patients with similarly dire conditions? In the hospital, patients who were gasping for breath from pneumonia or stroked out and paralyzed from meningitis would, through the fog of their illness, say they were “fine.” And when they didn’t speak English, the translation from Setswana was the same: “fine.” It baffled me, but then again, I was looking at it from the privileged perch of good health. Was it denial, grasping for hope that the bleak circumstances certainly didn’t justify? Could it be a calm and final acceptance of the inevitability of death? Maybe saying you’re fine would make it so. Maybe when I’m on my deathbed, I, too, will say I’m fine. Maybe then I’ll know what so many of my very sick patients in Botswana had meant.
So Joyce was fine. But I stuck to my usual routine and asked about shortness of breath, pain anywhere, diarrhea, and so on, more to make me feel I was being professional and trying to provide good care when, of course, no amount of good care was likely to stop Joyce’s downward slide. But she persisted in her “fineness,” denying whatever symptoms I suggested. She was fine.
Maybe, I thought to myself, the advanced HIV infection had destroyed her mind to the point that she didn’t know how she felt. It was a fear I myself often had as I journeyed beyond my mid-60s.
“Joyce, please don’t be offended, but I’m going to ask you some simple questions.”
“Can you tell me the month and year?”
“December 2003. I think it’s the eighth.”
“That’s right. And could you tell me where you are right now?” I’d accept either Botswana or Gaborone. “Plot 3545, Gaborone.” Geez, I didn’t know the plot number, but just getting the city right counted as a correct answer.
“One last question: who is the vice president of Botswana?”
She grinned. “Oh, him! The boy! The Honorable, Lieutenant General Seretse Khama Ian Khama!” Like those of ancient Roman emperors, Ian’s formal name was long and dynastic. As the son of the country’s founding president, Ian was often referred to as “the boy,” sometimes affectionately, more lately derisively. And you wouldn’t want him to hear you refer to him that way.
Joyce had clearly shown that her mind wasn’t as ravaged as I had feared, and perhaps she really did feel “fine.” I sensed that I probably could have discussed national politics with her—her knowing Ian’s full name suggested she might have an interesting past—but I stayed on track. I gingerly pulled back the layers of blankets to examine her. How many times, I thought to myself, have I groped for new words to describe fully what was now before me? “Wasted,” “emaciated,” “cachexic,” “profoundly malnourished”—they never seemed to convey the sadness, the horror, the impending doom. Joyce was almost gone. It was difficult examining her heart and lungs—the diaphragm of the stethoscope has to be flat against the patient’s body, and the deep furrows between her ribs left no space to listen properly to her heart and lungs. I went through the motions. As I mechanically examined her, I started thinking about what might be wrong with her, whether some last-second intervention might spare her. Sure, most likely it was end-stage AIDS, but my job was to be sure there wasn’t something else going on here, especially something that we might be able to treat.
Just then, the blankets and pillows on the large bed started to move slowly, as if they had a life of their own. Puso noticed my surprise.
“It is her son. He was taking ARVs, but he had to stop them. The clinic said he has hepatitis. He is very sick. We are taking him to the clinic tomorrow.” I glanced at the graduation photo on the counter. The stirring stopped, no one emerging from under the covers. I squatted back down next to my patient.
“Joyce, I’m very worried about your condition. I really need to know: Have you really been taking your ARVs or not?” I always liked to think I could make patients feel safe enough to confess to any non-adherence. “I won’t get upset with you, but I really need to know.”
“I have been taking them, doctor.”
“Joyce, I think we need to get a viral load on you, a blood test, to see if your ARVs are working. If they’re not working, then we need to change your ARVs. It’s the only hope we have.” It was a “Hail Mary pass,” but worth a chance.
“Puso will take you to the clinic tomorrow with your son.” I accepted her silence as acquiescence.
“And I’ll look forward to seeing you again next week!” My cheerful optimism elicited a smile from Joyce.
The next afternoon, Puso called to report that Joyce had refused to go to the clinic. “She said she was too tired to come.” I briefly thought about drawing the blood myself but desisted. Joyce probably knew what she was doing. One of the lessons I had learned from bungling another patient’s care a year earlier was that being overly attentive was usually lethal.
On the drive to Joyce’s house the next week, Puso told me that her son had died over the weekend in Marina Hospital. At the clinic visit the week before, the doctor felt he required admission. “Does she know?” I asked. Often when patients died in Marina, the family wasn’t informed. Puso said he didn’t know. “Does she have any other family?” I asked.
“Only the son,” Puso replied.
Joyce looked weaker, but she smiled and seemed to recognize me. Even though the bed was now empty, she was still on the floor. She was clutching to her chest the framed graduation photo of her son. I dispensed with taking a history or examining her.
“I’m very sorry about your son, Joyce.” I took a chance that she knew.
“He is with God, doctor.”
“Joyce, we really need to get that blood test. It’s very important.”
“Doctor, I am fine. I will soon be with my son. I am fine. Thank you, doctor. God is good.” She closed her eyes and fell back to sleep.
Then I finally knew what she meant. Joyce was indeed fine.
Daniel Baxter M’75 is the author of One Life at a Time: An American Doctor’s Memoir of AIDS in Botswana , from which this essay has been adapted courtesy Skyhorse Publishing. Copyright 2018. All rights reserved.