In 1995, I was working at the American Consulate General in Toronto. I’d been an American diplomat for a decade and was scurrying from the stock exchange to meetings with bank chiefs and political party leaders. Evening receptions at other consulates and cinema premieres were the norm, while reporting to leaders in Washington, D.C., about the Canadian economy filled my waking hours. When I wasn’t working, I began writing a short story that won first prize in a competition sponsored by The Toronto Star. It was a heady time and I was having a lot of fun, but as a man diagnosed with HIV, I was also tired and starting to run on fumes.
One day my physician asked me the key question: “What’s the goal here, Michael? Is the plan to just keep working until you die at your desk?”
My T-cells had dropped to under a hundred. I wasn’t in denial about my health; I just wasn’t paying attention to it. I let work rule my day. As the only economic officer at the consulate, I had to keep doing the job. “There’s no one else,” I would say.
I was diagnosed with HIV in the 1980s, but I didn’t let it rob me of aspirations to travel the world and make a difference as a diplomat.
During a stint in the Peace Corps in the 1970s, in the Central African country of Chad, I’d gotten a taste of how challenging and rewarding international work could be. In the Foreign Service, I served in Dubai, United Arab Emirates; Damascus, Syria; and Casablanca, Morocco. I had also worked in both Washington, D.C. and Miami. I felt like I was in the middle of crafting U.S. foreign policy. Full of my own self-importance, I had not really thought about how AIDS complications might take me out.
“Your disease is very advanced. Your fatigue is only the tip of the iceberg,” my physician added. She flipped through my lab reports and held up a chart showing how my T-cells had declined in the single year I’d been assigned to Canada. It was a sharp downward slope. “Michael, you’re very ill.”
Her words seared into my consciousness. The chatter that normally circled inside my head about economic trends from bank economists quieted to a stunned silence. The doctor’s words still hung in the air: “Michael, you’re very ill.”
I looked away at the HIV poster above her desk. It was a colorful print, with big block letters that read: AIDS DOESN’T WAIT.
“I encourage you to think about taking time for yourself. Do what’s important to you while you still have a life to enjoy,” she continued. I pushed her to give me an estimated life expectancy. She fought me on it. “Every case is unique. We cannot know the probability that your life will be longer or shorter than the statistical averages.” After refusing to leave until I heard an answer, she reluctantly said, “Eighteen months. Based on what’s available now for treatment and your lab numbers, my reasonable guess is you can expect to last until about April 1997.”
Now I knew how long I had to work on the book I’d meant to write, and finish it before I became too ill to care. After all, this was before new treatments came along that suppressed HIV to such low levels that it became impossible to transmit. My friends were dying rapidly, progressing from a first hospitalization to death in mere months.
I left Toronto a month later as a sudden retiree. I moved to the beach in Cape May, N.J., where I wrote every day. My routine was strict: I rose at 5 a.m., wrote until noon, ate a quick lunch, took a walk by the ocean, and usually managed an afternoon nap. I kept it up until I had written everything I wanted to say. Then all I could do was wait for April 1997.
To stay engaged, I volunteered at the local nursing home, each week lugging my accordion to play a few tunes for the residents. I played all of the standards I knew: “The Beer Barrel Polka,” “Lady of Spain,” and “The Caissons Go Rolling Along.” Week after week, I showed up and played the same tunes. Some clapped along with the beats while others snoozed. I thought I was getting passable reviews from their phlegmatic attention. One afternoon, a bald-headed man yelled, “Play the ‘Beer Barrel Polka’ one more time and I’m going to thrash you with my cane!” That opened the floodgates. Soon all of the residents were shouting. “Learn something new, for God’s sake!” “Kill that ‘Lady of Spain.’” “Let those caissons roll you right out of here.”
I hadn’t learned new songs. I thought of myself as a short-timer — just like them — waiting at death’s door to be summoned for my final interview. But the revolt from the residents shook me up. As I sat mutely before them, my right fingers pausing over the treble keys, it hit me: April 1997 had come and gone. It was May, and I was still here.
My health wasn’t great, but it wasn’t exactly like my internal organs were shutting down. The doctors had re-jiggered the cocktail of drugs I was taking, and I’d gone from 48 pills per day to 40. Progress! Regardless, I still lived every day with the expectation that my days were numbered.
Yet, I also lived with a richer horizon. Maybe the bad juju wouldn’t hit until 1998? Could I even imagine surviving to 2000? Bonus time meant I had exceeded the life expectancy I had been given in Toronto, but there was no way to know what the new limit might be. My focus had to shift to thinking about not so much how the end would come, but rather how to live with new vitality and a hope to do more.
At this time, my parents lived in Florida and in July 1997, my mother suffered a fatal heart attack. My dad was lost without her after 53 years of marriage. Although I had doubts about my ability to look after an 80-year-old man, I invited him to live with me. My other siblings were all working, so it seemed natural I would be the one to take him in. The novel was finished, and although no publishers were at my door, I welcomed helping my dad as a new focus.
I was shocked to see how much my father had slowed down. He slept a lot and sat for hours in front of the television, but he didn’t have a curiosity about life — or about learning new things — that had been hallmarks of his adulthood. He had trouble making decisions and seemed lost. He would clutch my hand when we went to the grocery store and as I pushed the cart up the aisles, he would grip the side as if he was afraid he might lose me. He lasted only eleven weeks before succumbing to a fatal heart attack.
HIV treatment in the late 1990s was improving, but I had had the virus a long time and at one point my liver began to shut down. The doctors wanted to hospitalize me but I told them that if this were really the end, my preference was to die at home. I pre-paid for all of my burial expenses, bought a grave, and even installed a headstone that lacked only the date of my death. But before I knew it, my liver recovered. More bonus time.
In 2003, I won a trip to Ireland and invited Paul, my eldest brother, to join me. He hadn’t been abroad since his days as a soldier in Vietnam. I wanted him to have an overseas experience of getting away from the worries of life with four children and too many bills. We had a great time posing on the Cliffs of Moher, freezing on the Dingle Peninsula, exploring Limerick. Four days after we returned home, he collapsed. A priest administered the Last Rites to him in the hospital and at the age of 58, he died. Losing him was a terrible shock, but the gift of his last week on earth where we, two adult siblings, got to renew our bonds in the deepest and most fun manner is a treasured memory.
My brother’s death jolted me. After all, since I had been the one to retire in 1995 with a death sentence, I had expected I would be the next to go. Yet by 2004, I had buried both my parents and my eldest brother; my family was shrinking.
I was still expecting AIDS to catch up with me sooner rather than later. All of the HIV-positive friends I had known in the 1980s and 1990s were long gone. I often wondered, Why me? Why am I getting more bonus time?
After Paul died, I learned that my sister, Rita, who worked for the Centers for Disease Control and Prevention in Atlanta, and lived alone, was having her own health issues. I would frequently meditate and hear my brother speak to me. His voice would come through clearly: “Michael, our sister needs help. She’s sicker than you know. She has no one. Stop promenading up and down the beach and make yourself useful. You’re not dead yet!”
I didn’t want to hear that message. I liked staring out at the Atlantic Ocean. I liked having only my own health to fret over and no one else to worry about. I was content in my little egotistical dance of waiting for death. But Paul would not be quiet: “Rita needs you,” his voice would say.
When I first informed my family of my HIV status in 1995, it was Rita who had uttered the words I needed to hear most: “Michael, whatever you need, no matter how difficult, I will be there for you. I love you.” She alone had embraced me at a time when the stigma of AIDS had been most pronounced. I could never forget her loyalty. So, I put my house up for sale and moved to Atlanta in 2005. I got rid of many of my possessions — including my beloved accordion.
Rita was still working for the CDC, but her body was failing. Every three months or so, she would need to go to the hospital. Sometimes it was her heart, other times it was her diabetes, or her asthma. Each time, I was there to hold her hand, talk to the doctors, and look after her. Some months she was fine and we had great fun making trips to Tybee Island, Ga., and to Destin, Fla. Other months, the doctor visits seemed never-ending and my anxiety grew.
I developed insomnia and started suffering from sleep deprivation. I fell into a deep depression, and although I seemed to be able to harness my wits when Rita was hospitalized, it was clear the constant stress was taking its toll on me. My already weak immune system was being pummeled by the onslaught of so many worries. No other family members offered to help us. I felt alone with my responsibility.
My friends said I was making a tragic error in judgment. They said I needed to maintain my own health and make it a priority so that I could continue to be a good caregiver for Rita. I knew they were right. Professional therapists helped me recover from my depression. They showed me I had to strike a balance in being available to assist Rita, while being equally committed to keeping my own health at its optimum: exercising regularly, eating healthily, and remaining engaged with others beyond my sister.
One year, Rita had a stroke. Another year she had three heart attacks. My health issues, including triple bypass heart surgery in 2009, were not nearly as problematic as hers. Despite all of these challenges, like the short week in Ireland with Paul, I was fortunate as an adult to spend so much quality time with my sister. That’s a gift I never expected, given my doctor’s warnings in Toronto.
Rita was a fighter. Despite doctors predicting her imminent death many times, each time she came through — even thrived. But the magic ran out in December 2014 with a fatal heart attack.
Like many long-term survivors of HIV, I’m not sure why I have endured. I know so many who didn’t have the opportunity to grow old. But remembering them, remembering how much they were cheated of life by a virus that we understand better today, reinforces the idea that we must continue to take on new missions, to be of service, and to tell our stories. We demanded that doctors give us a timeline, yet life itself intervened to give us mysterious bonus time.
Back in Toronto, the poster on the doctor’s wall said: AIDS DOESN’T WAIT. For some of us, the disease has kept its distance and there is only gratitude for the way medicine has helped us to have a life we never expected.
One day, I know it will end. But for now, I’m going to keep looking for the next mission. In the meantime, I have started visiting pawnshops looking for a used accordion. I want to find out if I still remember how to play “The Caissons Go Rolling Along.” I might even try to learn a new tune or two. Here’s to more bonus time.