Preface: Why Me?
When The Advocate invited me to participate in its roundup of people sharing accomplishments in 2001, guilt bubbled right next to the pride I felt to be included in such an honor. Who was I to be included in an issue where everyone else presumably would be expounding about triumphs won over the past year? But my triumph came completely by coincidence. Like the recognition that had given me a voice in the public arena in the first place (I was in An American FamilyPBS's controversial l973 TV documentary in which, still a teenager and more out of laziness than activism, I made no secret of my homosexuality, a "feat" considered brave at the time), this recognition is coming to me completely by accident.
And so I rationalized that in a sea of Advocate winners, some loser's musings on his own mortality might just provide a fitting reflective glory to further flatter our issue's winners. I don't mind that; I am glad to help out. I have a lot in common with Lewis Carroll's Alice (my favorite female literary heroine, besides Becky Sharp). I've been sent on a journey to places even bleach can't reach. I know that I shall be very lucky indeed if Death looks like the Cheshire Cat, and even if I lose contact with my audience before his entrance, my audiencesuch as it iswill get as much death dirt as possible. I was, after all, a gossipy old pencil pusher in the bloom of health; no sense in letting that strong suit go.
So for a short part of this journey, you are there.
This year, you see, I not only got diagnosed with terminal hepatitis C but got checked into a local men's hospice to await its final curtain. Though for years I had told myself that all my unbridled drinking, drugging, and unsafe sex were going to lead exactly here, I'd never really believed it.
But when the big showdown came, instead of laughing maniacally and swigging my tequila from one of my old Beatle boots, I had a response that was 180 degrees off. When I was told in the early summer that it was indeed just such outlaw ways that had been responsible for bringing me to my knees, I crumpled without any "damn the torpedoes" tribute to Billy the Kid or Bonnie and Clyde. I became a shadow, hunched over, round-eyed from fear, shuffling as I took my place in the long line of customers who are gathered here, part of a group with the same things in our mind, each of us grimly waiting to be served.
The bulk of my learningif I may call it suchhas come within the past three months, after I became a part of the fragile body of patients who make up an AIDS hospice. Here, surrounded by teams of supportive nurses, attentive doctors, and interns, one gently comes upon his own strengths and shortcomings.
So what was my "triumph" this past year? As with my "feat" on An American Family, I was, once again, merely myself. But over the course of 2001, my dormant hepatitis C and my HIVboth "silent partners" in governing my health till nowsuddenly decided to step out from behind the curtain and take the spotlight. I lived 18 years with HIV and 10 with hep C with very little more than a fleeting case of thrush. Now I find myself in a hospice with a limited-time warranty on my life.
"Dubious achievement," anyone? Till now, yes. But the hep CHIV numbers among gay men and women look to be far larger than originally expected and are rising every day. The fact that many gay men who carry the dual diagnosis are feeling fairly great, not feeling or showing signs of illness thanks to their drug cocktails or gym regimens, misleads many of those infected. I don't know if hep C is called "the quiet killer," but it easily could be, so unnoticeably does it nestle into your body before crankin' up the screws and letting you race to figure out what's going on.
Now I'm asked to put pen to paper and, in so many words, take you on a brief tour of the Rabbit's hole that is swallowing me up. A peep into my own private dying process and what I've noticed over the past year as my surroundings get curiouser and curiouser. It's not wild, but it is mysterious, and you'll encounter some of the strangest thoughts en route to the main tunnel going straight down.
My "accomplishment" of being one of the first wave of gays to deal with the messy last stages of this dreary road to death speaks for itself. Despite this writer's basic clumsiness and dull-wittedness, I will now tell the tale. Let's break my list of "accomplishments" down into the four seasons, shall we? Think of it as a cautionary tale.
Part I: Winter '01
Last winter, '01, was typical of any year in recent times for me. Six years earlier, my gig writing a regular column for The Advocate had to, regretfully, be put out to pasture thanks to a full-time career as a crystal addict. I'd finally rehabbed from the drugs and drink, and I was a lonely hermit, presiding over my nine stray cats in a small one-room kingdom on a hillside in Los Angeles's Echo Park, where I took many naps and read English rock magazines. I was not in great healthbig shock. But I was feeling well enough to still say yes when a girlfriend asked me to accompany her to the University of California, Santa Cruz, in the spring to move her 18-year-old son for summer break.
Shortly after the three of us set upon his dorm room to dismantle it, a small but sharp twinge of pain registered just under my left kneecap. And it would not stop. In fact, it got worse. For the duration of the weekend and through the trip home, it got worse and worse. Damn my friend, I said to myself as it throbbed away. How could she have forced me into so much work? But on returning to L.A. and going to the doctor that following Monday, I found out it had little to do with a twisted knee. It was a septic infection that had settled under my left knee. But I still believed I was invincible and continued my old lifestyle.
However, it was only a couple of days later that I awoke one afternoon in Cedars-Sinai hospital. I don't know how the day started out, but I had been found in a mud puddle near Echo Park Lake at 4:30 in the morning. At the hospital, I had accosted the nurses and doctors. I ripped out the I.V. needles leading into both my arms. Blood. More blood. Then there was my left leg. Sometime during the previous 48 hours, it had swollen to at least four sizes larger than the right one. The skin was shiny and tight. God was partway through inventing a new Pokémonme. Though doctors told me I should stay in the hospital, I was having none of it. I returned home; me, the cats, and my little wooden house in the wilds of Echo Park. Ready to stick it out to the bitter end, little did I know, in terms of my domestic setup, that finality was about as close as the nearest Starbucks.
Actually, bona fide incontinence waited until fall to make itself known. Still, as we passed the halfway mark of the year, I was not without plenty of disillusion. But as we crawled toward that final quarter of the year, waves of human degradation began breaking over my body. Daily bouts of catastrophic diarrhea suggested my intestinal tract was undergoing some sort of Chernobylish meltdown. My bellyfor that is the only word with which to adequately describe my stomachhad grown taut as a kettle drum. My leg was now not only swollen and unusable but had developed a needles-and-pins sensitivity that completely obscured any other feeling. While my leg still tingled constantly in a most uncomfortable manner, I could be standing on a tack and not notice it. All this plus the fact that it seemed I was now racing to the hospital every couple of weeks for a six-hour transfusion session to replace the blood my body was not replenishing. This was leaving large gaps in my energy and hollows where my cheeks had once been. I was, in short, beginning to look a little like a WeHo version of the Crypt Keeper. After a few haunted weeks spent lurking between the sheets in my mother's bedroom, it was decided to get me back into the hospital.
I thus spent August and part of September in hospital rooms about town. Perhaps there is no agony worse than the tedium I then experienced waiting for Something to Happen. I should say that when you've grown sick of reading and bug-eyed from watching TV, when your friends are all visited out and there's nothing else to do, no words can adequately praise the link to the outside world provided by your parents and family. I was going insane. There was no exact diagnosis. The unspoken one, everyone knew.
Suddenly news. Word came along the hospital jungle that they were booting me out. With the newfound gusto that a minimum-wage earner gets shortly before his work day ends and his allotted amount of work still remains to be finished, I was packed up and told I had to find myself a rest home to stay in. They did not tell me what was wrong or what could be done about it. Suffice it to say that this did not give me much hope.
You know those people who tell you they've forgotten how to cry and that they can't anymore? I was one of themuntil I crash-landed at the Carl Bean hospice facility on the northern tip of south-central L.A. It's not because the facility is badon the contrary. The food is the best I've had in an institutionand believe me, by the end of the summer I had become quite the hospital food gourmand. The nursing and doctoring staff? No words can do justice to their efficiency, thoroughness, and all-around human compassion above and beyond the call of duty.
But what I learned in this situation is how easy it is for me to cry. Having been one of those who didn't cry at anything, I am now faced with mortality, finding myself on a deserted beach on the brink of a saline washout. And forget about my family; just a sidelong look at my mom while visiting her home and watching her prepare dinner struck a gusher. Or my giving a toast at a dinner for my brother and sister: Halfway through, yours truly simply kidnapped the situation by bursting into a massive crying jag that left my sisters frozen, silent, and with two long tearstained trails on their cheeks. Definitely not the most generous move to inaugurate a "happy occasion."
I recently read that "a sentence of death concentrates the mind wonderfully." True, but you've got to be able to excuse yourself from what you can and can't concentrate on. Beware flights of fancy. Surely it sounds great to finally envision the perfect rock band, the script that is right in front of your nose, the inevitable volume of memories that the world must see.
And you must be prepared to handle those "What to do?" moments. My doctor told my already-hysterical mother, "Pat, you've got to face it. You're going to outlive Lance, so you may as well get prepared!" Neither of us felt good about that moment. Or the fight between friends when a dear pal blurted out to me that he'd speak well of me at my wake.
When will it happen? That's certainly got to be number 1 on the most-often-asked-questions-of-myself list that I usually break out at 4:12 a.m., when no one's around to answer. All I can hear is my own breath pulling like cotton through my nostrils. Now that I've gotten up enough nerve to ask the kindly doctors and nursing staff for some illumination, most likely they'll turn such queries back on me, asking how long I think I'm going to live or telling me it's all relative.
Still, I got the truth, though it came in a variety of vague replies. And the truth was not pleasant. After the question "Am I dying?" was met with responses that ranged from "What do you think?" to "Lance, everybody dies sooner or later," salty tears were running down my cheeks.
Such attempts on my part to sleuth out a departure date are suddenly replaced by one of the staff breezily telling me that my liver has completely stopped operating. The ammonia now racing around in my body (which must be urine, though I haven't got the nerve to clarify that salient point) is causing me to have memory lapses, and by that time I'm about ready to get back to discussing the food, the weather, anything, as long as it is superficial.
Oh, yes, it has been a year full of dark revelations, but without the fame or glory they might help offer someone else some little shred of solace if they are on the same road.
This article was originally published in the January 22, 2002 issue of The Advocate.
Lance Loud! A Death in An American Family is a presentation of WETA and ITVS, and was made possible
by the Corporation for Public Broadcasting and the Public Broadcasting Service.