I am not so good with numbers. I am a terrible accountant. (Don’t tell the NIH, which trusts me to account for large grants!) Some days, it is not clear to me how I became a physician-researcher given all the math and statistics I have survived to get to this place.
Some days, though, I find myself struggling with a different kind of accounting. Counting up recent deaths vs. lives saved. That kind of math doesn’t work, Rachel. Accounting for lives doesn’t make sense. There is no way to balance these figures. And yet, some weeks find me counting…
At the end of last week, I lost a patient for whom I had fought really hard. When he left the hospital after a serious illness and a lot of struggle to keep him alive, I believed he was going to make it. I thought he was ok. And when he came back to the hospital and died last week, his death caught my heart off guard.
Today, we had another patient die, a girl who had been enrolled in our disclosure study and whose family was followed closely by my team. She had been sick for quite some time, but now the world will never see her sweet smile again. Her mother and her younger sister mourn.
Our children are dying. It is impossible to account for a life on a spread sheet.
But, day-to-day, the balance shifts from sorrow to joy, from joy to sorrow. Even as we wrestled with the unexpected death on Friday, another little boy for whom I fought hard to get a surgery to repair his heart went home and I rejoiced. Arthur was as recovered and strong as I could possibly hope for, and his smile was brilliant when I reassured him that, yes, he was going to grow now. The same day, we celebrated the birth of baby Vreeman, and I marveled at the honor of this beautiful baby namesake. Losses and gains. Our children die, but our children also live.
Three weeks ago in one of our rural clinics, I was incredibly frustrated by a teenager who was not taking his medicines. Brian wanted to stop his HIV treatment entirely. The clinic staff had pretty much given up on him. He had not opened his medicine bottle since the previous month when he came to clinic, and when questioned about it, Brian just shrugged. His father says that the medicines for HIV are not worth taking, and the boy had accepted what his father said.
I can’t force Brian to take his medicines, as much as I might like to. There is no court system or hospital in Kenya where I could exert my medical will over his father’s misguided thinking. As I walked with him across the clinic compound, the boy tried to ditch his medicine bottles and just slip out of the gate. He tried to escape again a little while later as we waited for a social worker.
I didn’t let Brian run off, but I felt like there was little I could do. I marched him over to my office to give it one last shot. In my mind, I was gripping him by the ear. I drew out my pictures to talk him through how the medicines worked and why he needs to take them. I even tried to convince him why he should keep coming to the clinic even if he stopped the medicines altogether. I tried and tried, but Brian’s face was still as a stone and he gave no indication that anything I was saying was getting through.
He took my drawing with him, though — my drawing of how the virus was fighting against the soldiers of his body. And, with my drawing, went my words about how much I wanted him to grow and be strong and healthy. And the medicines – please take the medicines. I had tears in my eyes when I looked at him, but it didn’t seem like he noticed. Deep down, I thought I had lost this one too. I counted him as a loss.
As part of the new study we launched this month, we are holding focus group discussions about the stigma experienced by families and children with HIV. We gathered adolescents for a discussion group at that same clinic where I had been three weeks ago, and who showed up but Brian. Brian, taking his medicines every day and telling my team that he was going to stay with the treatment.
“Vreeman: 1, HIV: 0,” said my study coordinator. Then, she adjusted it to “Vreeman: 1,298,372,397,398, HIV: will never win!”
I like that score better! We mourn, we rejoice. We count the losses, we count the victories. Most of all, we fight on.