Many of us are living with fear of contagion now. We’re actually being told to be afraid. Dealing with our fear is something we do together – talking about it, collaborating on changed behavior – but we’re also doing it alone, as fear is one of those emotions we experience individually. We’re also being asked to be physically alone, which is hard. For some of us, it’s not our first round of fear. I am remembering my first time, when I was half the age I am now.
After being experimented on medically for half of my childhood – being painfully jabbed with blood-drawing needles, having machine parts put in my mouth, and being forced to take drugs as part of breakfast – dealing with doctors has never been natural or easy for me. My goal has been to stay healthy and minimize my need for medical care. And yet, there was a time when I surprised myself and did an about-face. It took something sharply painful to cause me to turn back toward medicine. Here is that story….
When I was in my late twenties. I had a part-time job as a journalist and was sitting at my desk on the tenth floor of a 30-story building. The first 12 floors were offices with floor-to-ceiling windows that didn’t open. Sitting at my desk one day, I heard a very odd sound—a thump against the side of the building. We never, ever heard thumps against the building, because that was impossible, so I turned… just in time to see a red baseball cap float past my pane of glass.
The sirens began. Fire trucks rolled up to the street far below. I couldn’t see a body, for which I am grateful, but I watched them hose away the blood of the man who had jumped from his apartment floors above. This was before the internet, and I didn’t read about this sad event in the news. The rumor in our building in the days that followed was that the man had suffered from AIDS and despair.
I don’t remember how I found out about the Zen Hospice Project, but I signed up for the volunteer training. I wanted to volunteer on the large open ward of a huge old hospital on a hill in San Francisco. This cavernous building had been the poorhouse in the 19th century. It had become a public hospital, serving people considered medically indigent. Many of the patients were dying of AIDS, many were young, and a fair number had been shunned by their families.
One of the topics in the training for bedside volunteers was “fear of contagion.” I was relieved that we were asked to engage with our fear head-on, because I was uneducated and afraid. Another part of our training was about touch, and how much people near the end of life need it. If possible, the touch should be skin on skin, not gloves on skin. I had to decide whether to give gentle massage to patients with Kaposi’s sarcoma lesions. I did.
I volunteered because I wanted to do something to ease some of the suffering in our AIDS-besieged city. I was also facing my aversion to hospitals and all things medical. I wanted to see the redemptive side of medicine, to learn the intersection of compassion and palliative care.
There was time to get to know most of the hospice patients at the hospital before their bodies gave out. I was a scribe who wrote down their poems. I wheeled them to the vending machines and bought them what they wanted, which included cigarettes. What the hell, I thought, they are dying so it can’t hurt them. We would go to the garden, sit on the patio, and look up at the eucalyptus trees beyond the wall.
I felt deep affection for these people, most of whom were men. Being near death, some were very open-hearted and communicative. Some had photos of their earlier, healthy selves on their bedside tables, as if to share who they used to be. Some had photographs of their lost lovers, who had died before them. I felt deep grief when the patients died, and I remember them with love. I learned to be less afraid.
Today, we are also left with our fear of a viral disease scientists say is unlikely to disappear from the earth. We will be forced to manage it, since we won’t be able to eradicate it. Fear of contagion will change our culture in ways we can’t yet fathom. We are already working out a new equilibrium in our most precious relationships, a recalibration of love and fear. We long to touch one another and walk side by side, but are having to do with much less touch. Instead, we are substituting the sound of our voices and the image of our faces piped across distances when we long to be laughing and talking together, all in the same room.
With a good deal of luck and international cooperation, we will have an effective vaccine in a couple of years. We will come back together again in the old ways, but we won’t be quite the same. As I learned from engaging with the patients in the old hospital on the hill, there’s the fear we engage with, the decisions we make, and the love for one another that abides.