WAKING UP IN THE AGE OF AIDS (2018) by Pat Vivian
Like many of us living comfortably in America, I was a death-virgin when my gay friends – my chosen family on the west coast – succumbed to HIV in the late 1980s and early 1990s. Except for grandparents who had passed away in hospitals and nursing homes, I was fortunate not to have lost anyone close.
As the gay men in my life grew more emaciated and the death sentence of their diagnosis loomed, my role as friend transitioned over and over into caregiver. With no medical background or career goal in the health care industry, I learned to hang an IV, fill a feeding tube, and change a bed with someone in it – things I’d never thought of doing until someone needed me to do it so they could die among friends.
Decades later, I’m still grateful to them for sharing that bleak passage with me. By trusting me to care for them, they gave so much more than they got. There were hissy fights and hard times, but there was also the strength of community, the heart and soul of compassion, and the courage to be fully present – a kind of spiritual prosperity in the shadow of the almighty dollar.
Unpaid caregiving took time away from earning a living, but I made the hard choice, the only real choice I had under the circumstances. Society owes caregivers more support than I got. The experience cracked my heart open and deepened my capacity for love and wonder.
As a freelance writer, I interviewed Randy Shilts, the first American journalist assigned to cover the AIDS epidemic full-time. In that era of trickle-down economics, Shilts’s book And the Band Played On documented how HIV spread out of control under the Reagan administration.
The tsunami of people who lost their lives – 25,000 dead before the Ronald said the A-word in public – gave the rest of us valuable insight into what constitutes quality end-of-life care.
Act Up fought for patients’ rights to access experimental treatments for a malady that had no proven cure. The gay community’s advocacy helped advance the hospice movement and altered the focus of medicine.
The medical community tends to regard death as failure, but at some point for everyone, death is no longer the enemy. For survivors, there’s no statute of limitations on grief. The point is not to “get over it” when the only way out is through, however long that takes.
Unfinished grief can jump up and bite you when you least expect it. Like the evening in 2012 when I heard on OPB that the state of Washington had legalized gay marriage. One minute I was loading the dishwasher, the next I was dissolving in tears. Tears of joy for those who could celebrate this victory mingled with tears of grief for the many who died too soon.
Then the flashbacks started. And continued for months.
Except for a fellow poet, David Rutiezer, all of my gay friends had been dead for years. David introduced me to Marla Allen and Sylvia Zingeser and we started giving public readings together as the December First Writers. Until then, there was no one else in my life whom AIDS had touched so deeply.
Marla’s long-term survival – she has survived AIDS for more than 30 years – is a marvel I can never stop celebrating. Sylvia faced what no parent should have to – the death of a child. If it weren’t for David and his poems about living through the AIDS crisis as a gay man, there would be no December First Writers.
If it weren’t for my friend Tom, who died the same year (1988) Marla was diagnosed, I wouldn’t be in Portland now, my home of more than 40 years. In 1976, Tom and I emigrated from Iowa so he could come out of the closet. For the first two years I knew Tom, I didn’t know he was gay, and he wasn’t talking. We may have been best friends in college, but a small Midwestern town in the 1970s was no place for that kind of talk.
Now that I’m happily married as a heterosexual woman, I tend to regard my AIDS poems as part of my distant past. Yet I know that if I hadn’t been open to that experience, I wouldn’t be who I am now.
The poems I’m sharing were written when Tom was living with AIDS and after he died of it. He was the first of my gay friends to go. I wrote a book of poems, Love’s Gravity, which was never published although there were a few close calls in small press competitions. Some of my AIDS poems appeared in literary journals and were included in my chapbook A Luminous Trail Through the Wilderness, published by 26 Books/Unnum Press of Portland.
With the current availability of drug cocktails and protease inhibitors, I worry that people will be complacent about HIV infection. I worry that the current administration will mangle access to health care and life-sustaining medications for the 99% of us. I worry about hard-won legal rights and protections for LGBTQ people, not to mention women, immigrants, and anybody who’s black or brown.
Yes, people infected with HIV can have a future to look forward to. Look at Marla, who has withstood not only the virus but a slew of pharmaceuticals as treatment evolved. HIV is no longer a death sentence.
But if that shape-shifter gets into your bloodstream, you will need expensive, potent drugs to survive. You will be at the mercy of Big Pharma and your own biology for the rest of your life.
So please, be careful.