Facing the threshold of death

Sometime around 1990, when Rob was in his mid-20s, he tested positive for HIV – the human immunodeficiency virus that causes AIDS. The illness took him to the threshold of death. But thanks to a series of experimental therapies, and with support from others, Rob stayed on this side of life and reclaimed his health. Now 45, he lives on Cape Cod with his husband, Jim, exercises regularly, and does satisfying professional work.

I knew Rob when he was diagnosed as HIV-positive. We worked together in the Harvard News Office for several years in the early 1990s, but we lost touch after he left because of his deteriorating health. I had long wondered how he was doing, but perhaps I was afraid to find out. In the summer of 2006, while driving to the grocery store, I heard a radio piece marking the 25th anniversary of the AIDS epidemic. Rob was the featured patient, and I was thrilled to hear his voice. Since then, he has shared his story and reflections with me by phone and e-mail. Here are some excerpts:

“I was diagnosed around 1989-90. I went to the Fenway Community Health Center; everyone was getting tested then, and as a gay man, I did what I was supposed to do. When I tested positive, I really didn’t believe it. It felt Old Testament, like I’d done something wrong and now was being punished. But what was it that I did? I thought I had always been careful sexually.”

Rob found an attentive doctor in Sam Osher of Harvard University Health Services. He developed his first symptoms within a few months and began taking the anti-AIDS drug AZT – the first of many medications he would take over the years. After contracting cytomegalovirus (CMV), a herpes-related virus that swiftly cost him the sight in one eye, Rob began daily four-hour infusions of chemotherapy through a catheter implanted in his chest.

“Whenever any new drug came out in the 1990s, I would be on it. My medical charts would read healthy, healthy, and then fall off the cliff” because the virus was able to mutate into drug-resistant forms. The treatments’ side effects were also extreme: nausea, weight loss, fatigue, and relentless discomfort – what Rob described as “a constant feeling of very bad sunburn from the inside out.” His weight fell from a normal 165 to 113 pounds, and he could barely lift up his legs to climb the stairs. As Rob told a National Public Radio reporter, “I felt like I was holding on to a little thread of life.”

Although he didn’t consciously feel that he was dying, he thought a lot about death.

“There were long periods when I would lie on the sofa – I really couldn’t do anything else – and I remember thinking, ‘This is it.’ I read a lot then. I’ve always loved to read, but suddenly, literature carried so much weight and clarity for me. I reread A Tale of Two Cities [by Charles Dickens], and I remember really identifying with Sydney Carton, who was a bad character who redeems himself by going to the guillotine at the end. The nurse who first gave me my HIV results had said to me, ‘OK, affirmation time. Say to yourself 10 times, I am good.’ So any literary character where there was redemption, I especially appreciated.

“I read [Walt Whitman’s] Leaves of Grass several times and could make myself feel good about dying if I pictured the leaves of grass blowing in the wind and thinking that was going to be me. I had to come to terms with ‘what will be, will be.’ In other words, I made a kind of peace with becoming bits of carbon that would show up again in trees. It felt like the soul could only do something similar, which seemed sort of beautiful to me.

“But that said, I never really felt like I was dying, at least not right away. I knew it could happen, but the life in me, though perhaps diminished, did not seem any less strong. I know that my support group leader and my doctor both told my family that I was likely dying and that they should consider finding a hospice and soon – but all this was kept from me. My partner, Jim, would prop me up in the passenger seat of his Jeep, and off we’d go to the beach or the mountains. He actually put skis on me when I was really sick and down the mountain we went! Doing those things was life-affirming, but it was really hard for me physically. I just wanted to go home.

“Do I wish people had talked with me about dying? What a tough question. At one point I asked my mom if I could stay for a week in the condo they sometimes used in Rehoboth Beach [Delaware] so I could be there in the off-season and think about the way I used to go there with my family. Later on, I found out that mom was terrified that I’d decided I wanted to die in Rehoboth. It would have been so much better for everybody if we had been open about that. It would have saved her a lot of grief, and I think it would have been empowering for me to say, ‘No, this is not my time. I’m not dying now.’ And I probably would have added, ‘I hope.’

“There are a lot of unspoken things in relationships that you just know, but I think it would have been comforting for me to talk about it.”

Rob believes three things helped save him: His AIDS support group at Harvard; his doctor’s willingness to collaborate with AIDS specialist Dr. Calvin Cohen, who gave him access to experimental therapies such as a three-drug cocktail that emerged as an effective treatment in the mid-1990s; and his participation in a mind/body program in Boston that offered a support group, workshops, meditation, and yoga.

In 1998 Rob felt strong enough to move to Cape Cod, a dune-filled peninsula in Massachusetts; he had always wanted to live by the beach. There, he also began to work part-time at the local newspaper, gradually increasing his hours and taking on other freelance writing jobs so he could, he explains, “establish and maintain a foothold back in ordinary life.”

Thanks to Dr. Cohen, about two years later Rob joined a clinical trial to test a new type of drug that prevents HIV from entering cells, limiting the virus’s spread in a different way from existing medications. His catheter was removed, and his four-hour infusions were replaced with twice-daily injections of the fusion inhibitor called Fuzeon. It worked.

Rob enrolled in a graduate writing program, found his way into publishing, and today has a successful freelance career editing fashion and interior design text books. He works from the home he shares with Jim, a playwright and theater director, and he travels once a month to New York City for meetings. Health-wise, Rob swims and bikes regularly and sees his doctor every few months. His pill intake is drastically lower than it used to be: some antiretroviral medications plus some for low blood pressure. The drugs cause no apparent side effects.

“My outlook on life is that, I don’t know how long these drugs will work. But it looks like as long as my body is in this condition, they will work. Will they eventually damage my kidneys and liver? I don’t know if I’m going to live as long as my grandparents (who reached 93 and 89), but I’m very fortunate.

“I know that death is part of life and that it’s coming,” Rob adds. “Although I still stress about missing deadlines and other day-to-day things, I do carry that experience with me, and I do feel a certain responsibility that comes with getting to live.”

Consider this . . .
Literature can provide comfort to those facing their own mortality.
Don’t be afraid to talk openly with someone who seems to be near the end of life.