There are those that stick with you. A child, a family, a colleague, a moment. People and experiences that teach you something important about who you want to be as a professional and a person. For me one of those “stickers” I’ll call T. I’ve written about him before on this blog: a five year old with Chronic Granulomatous Disease (CGD) who I came to know during my second year internship at the NIH Clinical Center. He had been misdiagnosed repeatedly in his home country and by the time he came to the U.S. his genetically-transmitted disease that, like HIV, allowed opportunistic infections to take root, was far advanced and there was no cure, only experimental things to try.
This week I had occasion to talk with young social worker at the NIH. She works in the clinical center and was telling me about her work there. In passing, she told me about some research she was doing with a colleague to examine how young people with CGD moved from pediatric to adult care at the NIH. I had to stop her almost mid-sentence. “Young people with CGD moving from pediatric to adult care???” I asked. And then I told her about my experiences with CGD. “Now those children can be cured. They can have stem cell transplant. It’s not without risk and we still lose kids. But when it works, the disease is gone.” Even as I write this I have goose-bumps and tears. Joy and gratitude in knowing that the dogged persistence of physicians and scientists has produced a cure for something that was hopeless 25 years ago. And tears that the cure comes too late for a child and family who taught me so much and that I came to love.
During this trip, I stayed near Dupont Circle, a place I enjoyed when I lived in D.C. as a 20 something. Many a happy Saturday was spent wandering through the Mystery Bookshop where the owners would talk to you a bit and suggest a detective series just for you; perhaps having lunch at Café Splendid; and then a prowl through Melody Records. But it was a very different time. HIV was a death sentence. There were posters and signs focused on prevention -clean needles, condoms, testing. And although I had no comparison for what might have been, fear and grief were palpable. Fast forward to this last visit. There are still posters that promote HIV testing but there are also signs about marriage equality and other celebrations of long-term relationships. Although problems and prejudices remain, there has been progress and hope is manifest in what one sees walking through that neighborhood.
We are often focused on problems as we should be. There are so many and change does not happen if they are ignored or minimized. But there is progress too. Theodore Parker writing in the 1800’s said, “I do not pretend to understand the moral universe; the arc is a long one, my eye reaches but little ways; I cannot calculate the curve and complete the figure by the experience of sight; I can divine it by conscience. And from what I see I am sure it bends towards justice.”
Today, I take Parker’s words to heart. I cannot always see it. But for this moment I will stand in awe of scientific progress and social change even as I mourn those for whom it comes too late.