Hard Knocks Life: Things I Miss, 7

Reginald had a hard time going through this world – this world he didn’t survive, to echo a line from one of his poems.

I’m not just referring to the more apparent biographic facts of his hard knocks life (a song, by the way, that he much enjoyed both in Annie and in the Jay Z rendition), though I am in part referring to those:

Growing up as the child of a single mother in the 1960s (he told me once that he identified fiercely with the Supremes’ song “Love Child” when he was a child).

Growing up living in public housing tenements in the Bronx.

Losing his mother when he was fifteen.

Dealing with the same tribulations that most every gay man in this culture deals with in coming to terms with that gayness.

Living with HIV for well over a decade.

Living with and dying from cancer and the horrible pains it brought.

Dealing with a host of “lesser” medical issues, like the osteoporosis (possibly a side effect from HIV meds) that led to fractures in his hip and at least one rib.

None of these made it easy to walk through life.

I’m also referring, though, to the combination of innocence and a strong sense of justice with which he continually encountered this unjust world.

One thing the two of us shared was a sense of how we thought the world should be, fair and equitable, with thought and beauty in all its forms valued.

But he combined this with a sort of innocence. He kept expecting the world to be fair and just, for people to be thoughtful and to value reflection rather than ignorance, and as a result he was often disappointed about the state of the world, but one of his most charming traits, that I miss so, was that he kept on presuming the best of people.

Some who knew us, but not in depth, thought I was the optimist and he the pessimist of the couple. They were wrong. In reality, I’m much more likely to view the world through a deeply cynical and pessimistic lens, with one consequence being that I can almost always envision things being even worse than they are. I may become angry, upset, or feel loathing towards aspects of the state of the world, but rarely are my expectations disappointed when people or things are stupid, hateful, vile, or otherwise bad. It’s more that I’m pleasantly surprised when things are good and beautiful.

Though it meant he often bumped up against disjuncture between his expectations and the state of the world, his sense of justice combined with optimistic innocence was a part of his charm that I sorely miss, and that I feel unbalanced without.

Disco Gets Me Down: Things I Miss, 6

I’ve long had mixed feelings about disco. Much of it’s great music that’s fun, upbeat, and uplifting, but I typically have a bittersweet feeling whenever I listen to disco, as it tends to evoke for me a generation of dead gay boys.

(Perhaps ironically, it was not the HIV that took so many of his generation but cancer that took my gay boy. Reginald was quite open about his HIV+ status from the time I met him, and so I always knew that down the road, serious health problems could be part of our relationship, especially since at the time I met him in late 1998, while protease inhibitors were a godsend for many with HIV, including Reginald, no one could say with certainty whether combination therapy would work well in the long term, as those drugs were still relatively new. As it turns out, Reginald never really had any problem with HIV. I do wonder if it contributed to some of the complications that ultimately allowed the cancer to take over after an initially good response to chemo – some of his doctors thought it probably did, others were less sure, though none of them thought it was a good idea to have HIV and cancer at the same time.)

Since Reginald died, my disco emotions have been amplified, and I’ve found it almost painful to listen to disco or most any other dance music. While it’s far from what I miss most with his loss, one thing I do miss is seeing him dance. As most who knew him well know, Reginald could dance like nobody’s business, and probably the most pleasurable thing about watching him dance was the look of sheer joy he had when dancing. Thinking about it as I write, I’m laughing with the joy of that memory and crying as I know I’ll never see him dance again.

Where I've Been

I’ve been a bit preoccupied lately.

In mid-April, my partner, Reginald Shepherd, suffered a serious, nearly fatal, medical crisis. For reasons still unknown, a perforation opened in his small intestine, leading to severe abdominal infection and peritonitis, blood poisoning (one of the things that nearly killed him), catastrophically low blood pressure (think in the neighborhood of 40 over 20) and a heart attack, kidney failure for a short period at the height of the crisis, about ten days on a ventilator and on hallucination-provoking sedatives, three surgeries over the course of those ten days, two weeks (that included the aforementioned ten days) in the intensive care unit, three more weeks in the hospital, and an ongoing recovery process at home. See Speech After Long Silence, Tiene Dolor?, and Long Hard Road Out Of Hell for Reginald’s account of the ordeal.

Reginald’s medical trials didn’t begin in mid-April. The whole past year has been quite rough for him, with a series of emergency room visits (in three separate states), that led in November to diagnosis with colon cancer, a successful surgery to remove the tumor, but also the discovery of the spread of the cancer to the liver, followed by many rounds of chemotherapy and a process called radiofrequency ablation to cook the two tumors on the liver. In short, the situation that began in April occurred after a very trying year and after we were beginning to think (with good reason – his cancer prognosis looked and looks pretty good) his medical condition was under control. As a result, I have mixed feelings about the timing of this crisis: after the entire past year and everything he and we have been through, especially once things were looking up, it’s frustrating, frightening, even shocking to have something else come along to make “Stage 4 Metastatic Cancer” seem like a walk in the park, while at the same time, if this was going to happen, better in mid-April than a few months earlier when the cancer was very much not under control, when even the best case recovery from the acute crisis of blood poisoning would have meant a long delay of chemotherapy at a critical juncture.

As a result of the past year, and especially the last couple months, I have a somewhat different perspective on health, illness, doctors, nurses, medical care and institutions than I did a year ago, but more on that over my next few posts.