Hearing hope

Charlie Guiang

She was a nursing student, in her early 20s, when she started as my patient. Diagnosed HIV-positive when she arrived in Canada a few years before. Family in Africa and surviving in the city on her own. I remember her—gentle, soft spoken with a bit of an accent, almost a little scared when I saw her. I got the sense that she wondered why I was helping her, without needing anything in return. Like she’d never been taken care of by someone else, and it was new to her. She seemed almost a little paranoid.

It took a while, but she warmed up to me … and I to her. She started to make more eye contact. The more that happened, the more I saw something. There was something sad in her eyes. No, she wasn’t depressed. I think her eyes saw things I could never imagine in my 33 years of life. She said at one visit that many around her in Africa died of “it.” “HIV, you mean?” I asked. She could never call it by its name. Like when you were mad at someone, you’d say “that person” or “it,” rather than calling the person by his or her real name. I got the sense, after some conversations, that she felt she didn’t deserve to live, if others had died.

Her T-cell counts dropped with time, and I suggested she start meds. She would have none of it. And I recalled one of our initial visits, when I explained to her what to expect with time—that her counts would drop and that we would have to treat her before her immune system suffered, before she suffered. I think I remember her saying that she wouldn’t go on medications—but I respectfully ignored it. I thought, as with most, I would be able to convince her, in time, that medications were necessary. I was still a little naïve … and seemingly wrong.

Visit after visit, she declined to start antiretrovirals. I explained in as many different ways as possible why she needed to start. I tried different techniques. Again … and again. I even questioned her competence to make decisions … but I was reaching. She knew what she was doing.

I questioned myself. My inexperience. I had only been practising HIV care for a couple of years, after all. My experienced colleague told me it was normal for him to carry, and use, death certificates at one point, when he cared for those dying of HIV and AIDS. And I started my career when really good, tolerable treatments existed. When patients lived. Thrived. Survived. Patients went on medications, sometimes begrudgingly, sometimes welcoming it, most times embracing it once they started to feel physically better. Then they saw their counts rise … and they noticed that their spirits did the same. What was I doing wrong with this patient? What was I missing? What did I say? What didn’t I say? Did she hear me at all?

And then, she got sicker. Her skin, once beautifully smooth and black, had more acne, looked rougher, more uneven in colour. She lost weight. She got weaker. She developed pneumonia … a few times. Once I thought PCP … but she got through it. I convinced her to take antibiotics, but it was a struggle. It was a struggle to convince her to live. I didn’t understand it. I assumed everyone, inherently, wanted to live.

One day, I was running an evening clinic. It was late. I’m sure I was tired … at least I’ll blame it on that. And she was my last patient of the day. Again I tried to convince her to go on meds. I put on a winning act of optimism, even though I felt I had little left in the tank. And she still, simply, declined. And then, another bomb … she said she had decided to leave the country, to go back to her homeland. She said she “preferred to die there.” My heart sank. My eyes welled and I fought to keep the floodgates from opening in front of her. I had failed. She hadn’t heard me. As she left, and the door to my office closed, I lay my head on the desk … exasperated. I felt defeated. Feeling like we had all these things to help her to live … and … nothing. Unbeknownst to me, she had returned and peeked her head through the door. She saw me in a way I thought our patients should never see us … without hope. In her soft, gentle voice, something that had never changed, she said, “Just so you know, I know … I heard you. I heard every word you said. Everything. All the time. And I thank you for trying. But this isn’t about you. It’s about me.” She left. The floodgates opened.

I never imagined I would hear from her again. It felt like years, although it was actually months, later that I received a postcard. It was from her, from Africa, where she was back with her family. Where she saw many around her die of the same virus. And because they didn’t live, she felt like she didn’t deserve to live either.

The postcard was small. She couldn’t fit a lot on it. But she didn’t need to. She wrote that she eventually went on treatment. It actually said, “HIV medications.” She could now write “it.” There was something bright about her writing, like I could hear her saying the words she wrote on paper. The same gentle voice, slight accent. Still soft. But like she would have been smiling if she had said the words. Her eyes still ravaged deeply by death, but able to see the world with a new perspective. “I was listening,” she wrote. “I heard you.” All of sudden, I was hearing hope.