A Death Diagnosis at 27: A Story of Love, Loss, and Resilience

It was 1985 and a good year until... "You're positive; put your life in order. You'll be dead in 18 to 24 months." The pronouncement was just that - blunt. It was a shock to my essence and ability to comprehend.

The only thing I remember after that is "Blah, blah, blah..." Where does one go from there? I was just told that I would not live to see my 30th birthday.

How did I get here?

I came out as gay in 1976 during the sexual revolution. Gay men were exploring their new freedoms after the Stonewall riots. I went through trying times at home, reconciling my new life with my family and faith.

While away at college, I had a distant boyfriend. We saw each other on weekends when possible but by no means were we exclusive. I did try to establish a more permanent relationship, but that didn't pan out.

One holiday, while home visiting family, I met a very handsome man named Marc. His nickname was "Smiley," and he truly lit up the room. He visited his family nearby over the holidays. We met a few times at the bar to talk and enjoy each other's company. After the holidays, we kept in touch between his home in Dallas and mine in Ann Arbor.

A couple of years after our first encounter, he moved back to Michigan. He had split up with his partner and was again on his own. That is when we started dating.

Navigating love in the time of HIV

I remember the abundance of caution he was taking over intimacy, but it seemed normal to me after a breakup and with the intense national news warnings about HIV beginning in 1983. Marc later told me that he was HIV positive.

By 1985, I had been traveling extensively for work. Our time together was often limited. After returning from one of my business trips, I learned that Marc was in the VA Hospital with PCP pneumonia. His HIV had progressed to AIDS. He was scared and said he really couldn't be with someone who wasn't HIV positive. I still wanted to be with him.

I scheduled an appointment at the local health department to get a blood draw to test for HIV. It took 3 weeks to get the results back, and that is when I learned I was HIV positive with little time left to me in this world. I would realize much later what an enormous burden that was on my mental well-being in the prime of my life.

Caring for Marc

I chose to focus on Marc, and he would often stay with me for extended periods where I could care for him, and we could enjoy life together. As the months progressed, he deteriorated in his mental acuity and physical abilities. He was always so fatigued and frail I was getting scared for him.

One day, returning home from work, I found pans of food burning on the stove, and Marc crashed out asleep on the sofa from exhaustion. I knew then that he could not be left alone for his own safety. We worked out a schedule for him to stay at his mom's home and then join me when I was at home on weekends. It wasn't the best for either of us, but it was what we both needed.

I think that is what started a bit of my own survivor's guilt. I was doing so much better and still not taking any toxic medications like AZT. Being apart was weighing heavily on my emotions. Marc passed in the summer of 1989.

Surviving grief and finding resilience

After a brief time of unresolved grief, I sought professional help for depression. It took some time to work through the loss of my partner/lover while also dealing with my own diagnosis since I had pushed that aside to care for Marc.

By this time, I was supposed to be dead according to my original diagnosis. I contribute much of my strength and longevity from the absence of toxic medications. At that time, AZT was prescribed at such high doses that it is now considered a contributing factor leading to death. Marc had been taking 800mg every 4 hours, 8 times what I would later be prescribed. By the time I started AZT in 1994, I was only taking 200mg every 8 hours.

These first few years are now hard to imagine and process after living with HIV and AIDS for so long. Marc and I had friends who also faced crisis after crisis in frightening situations that affected us greatly. It was often hard for us to distinguish who needed our support more.

The diagnosis was just the beginning of a long journey that would continue to bring challenges and new hope as treatment advances surfaced. A new diagnosis is still scary. But today's treatment options help us all to maintain a healthy life and ensure a vibrant life better than thriving. Vive la vida!