I’m living proof that there can be life after a deadly virus. My personal panic about the current coronavirus crisis is interwoven with my memories of facing another virus, HIV.
There are similarities between corona and HIV, such as living with uncertainty and fears for both ourselves and loved ones. Some AIDS survivors I’ve spoken to report having a PTSD experience now. They are reliving the days before the mid-1990s, when there was no effective virus management. But all of us who have chronic or underlying health conditions have a treasure trove of skills, including bravery, courage and resiliency, in facing the current pandemic.
Yes, I’m high risk and taking it seriously, but for the last three decades, mortality has never been far from my mind. When my husband was diagnosed with AIDS in 1992, we faced a deadly virus that at the time had no drugs, vaccine or cure. He refused to discuss how he contracted HIV. My theory is that he was bisexual and had trouble dealing with it. He became so sick that I stopped asking him. The priority was to stay alive and help him recover.
When the doctors delivered his diagnosis, the scenario was beyond bleak. They said my husband would die first, then me, and then our 2-year-old son. I felt like I was falling backward into a deep black hole. After much misery, my 41-year old husband did die of AIDS a year later. Tragically and surreally, my 40-year-old uncle also contracted the disease, through circumstances completely unrelated to our family, and died.
But as it turned out, I didn’t die and neither did my son, who is now 29. We are currently together as we “shelter in place.”
The current reports of ventilators, intubation and lung tubes for coronavirus patients are like a blast from my past. Unfortunately, I know all three very well. I tested negative in 1994 for active HIV with a PCR test. Later, my doctor indicated it was probably a faulty test. But HIV didn’t enter my mind when I developed a serious cough 12 years later. It also didn’t occur to the doctors that it could be HIV-related.
I collapsed and was rushed to the emergency room and then directly to isolation. Since I had traveled to Asia recently, they thought I had SARS, but it turned out I was in respiratory failure due to pneumocystis pneumonia, or PCP ― an AIDS-related illness.
They inserted a breathing tube and attached me to a ventilator. At some point, my lungs collapsed and I needed intubation. Then they inserted four lung tubes. A fifth one went in the middle of the night by an eager doc, unbeknownst to my chief doctor, who was annoyed. Later, I found out that I had a 50-50 chance of survival.
After a month, they removed the breathing tube. When I was taken off ventilation and synthetic morphine, I developed ICU psychosis. My waking and sleeping images blended. I was convinced there were llamas at the foot of my bed, a nurse was dressed like a Renaissance queen and dead relatives were camped out in the hospital hallway drinking champagne.
I was lucky that by then an effective and lifesaving cocktail to control HIV had by then been developed. However, it took over a decade of testing to develop the antiviral cocktail now in wide use. In my case, the maintenance cocktail started out as a complex regimen and now is down to one daily little pill. I have been fortunate to have little or no side effects and to have remained healthy for the past 16 years. But I am not without survivor’s guilt, which plagues me to this day.
There are differences between that crisis and this one. The stigma attached to HIV caused me and many others to hide in the closet for fear of being denied insurance, jobs and mortgages. Even when it was no longer considered a death sentence, I continued to be wary of revealing my status. And the government and society’s treatment of people with HIV and AIDS was a low point during the last century.
Hopefully, the incredible passionate activism during the AIDS epidemic serves as a model. In the 1980s the number of deaths and HIV infections, and the lack of government response, led the LBGTQ community to organize protests. Their mobilization to develop testing, and eventually effective maintenance meds, saved my life and many others.
Health care workers also had issues treating AIDS patients, especially before it was known the virus was only transmittable through bodily fluids. I remember our dentist and his hygienist treating my husband while wearing hazmat suits. Those health care workers and doctors are our heroes. My own Seattle doctor, an infectious disease specialist, is back on the front lines, caring for coronavirus patients, saving lives, as he did mine and others.
Another lesson from the fight against HIV and AIDS is that you can’t count on a vaccine. Hopefully, advances in the medical field will lead to fast-tracked medications and protocols to deal with COVID-19 and its trajectory. The stories of solitary deaths in hospitals are reminiscent of the AIDS era. I watched several die in my husband’s hospital ward, with no loved ones around. All I could do is try to give them courage to fight.
I begged both my husband and my uncle to try to hang on, as I felt there would be breakthrough medications soon. But we lost both within the space of 15 months.
I’m at high risk for complications if I contract the coronavirus and I am taking all precautions, but I’m also keeping in mind the words of a female artist, in the hospital bed next to me years ago, who said, “You survived! Now go out and find the reason why.”
I had been a creative person on and off while working at a demanding corporate job. My previous lives, as a journalist, playwright and jazz vocalist, were dormant. As soon as I got home from the hospital, I began writing and singing again. I stayed with my corporate job for a while, but my center of gravity had shifted and I left it a few years later.
Because of my experience of facing my own mortality and watching loved ones die from a deadly virus, I view the coronavirus as yet another very large hurdle. Those of us who were affected by HIV have been through the trenches and are truly battle-tested for this one.
During the AIDS crisis, the world didn’t face financial collapse, massive unemployment, and daily White House briefings. It took brave and relentless activists, many deaths and a lot of fear before there were lifesaving drugs. The global energy to solve or ease the COVID-19 crisis is palpable.
And while the coronavirus has placed the world on pause, in the post-pandemic universe there will be possibilities to be explored. I’m living proof that dealing with and surviving a deadly virus can give a powerful reboot to our future lives.
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