As an HIV-positive therapist, I help others with HIV live full, rich lives. Even in this era when HIV can be managed, fears of illness, death and rejection continue to haunt us. And the strain of repressing these worries can undermine our well-being. For HIV to be truly manageable in our lives, we must look our fears right in the face. It took me two ferry trips, 11 years apart, to learn to live with my terror.
In 1996, seven years after my HIV diagnosis, I visited the Pines, a gay resort on New York’s Fire Island. Boarding the ferry to that early epicenter of the AIDS epidemic, I noticed an emaciated man sitting by the prow, his hands on a cane, his face bearing the purplish lesions of Kaposi’s sarcoma. My concern for the man was involuntarily crowded out by visions of my own future—a nightmare I had suppressed. Recently released protease inhibitors and triple-drug therapy were already helping those like the man on the boat to recover. But still, I was frightened.
This past July I returned to Fire Island. That day, the ferry brought me face to face with Brent, an AIDS activist mourning the recent deaths of three positive friends. Incredulous and dispirited that people were still dying, Brent said the losses, “so reminiscent of the early days,” opened up “unprocessed grief.”
As I remembered the man on the ferry years ago, I realized I was still evading my own HIV grief, submerging fears that I’ll become ill and disfigured; get dementia; wind up broke in some hovel. That HIV will prematurely age me—in a country that idolizes youthfulness. That other positive friends will die, leaving me alone.
I realized that denying and suppressing the dread makes me do shocking things. I once rejected a man whose facial wasting challenged me with specters of illness. I also distanced myself from a friend dying of lymphoma because I was scared to face death.
Frightened and ashamed, I decided I needed to change my approach. Denial didn’t work. I found that talk therapy—airing and investigating difficult emotions—did. I began allowing my imagination free rein—picturing myself ill, sensing the grief I’d feel if dear friends died, visualizing how I’d look if I started to show signs of having HIV. It eased the stress and, ironically, some of the terror.
I call on my network of positive people, sharing memories of late friends and discussing how current losses remind us of previous ones. Someone in my HIV support group took me to a 12-step meeting to discuss handling fear. I look to the wonderful people I know—like one living with HIV for more than 25 years, fighting battle after battle but never capitulating. We talk about the will to live and how he survives, drawing closer to the warmth of friends, the joys of life.
I sometimes feel I’ll drown in sorrow if I don’t freeze it out. Other times, I know that by embracing sorrow, by breathing it in and asking for help, I can gaze unafraid at death’s face and move forward with living.