Is that you?’ the burly black social worker asked me. pointing to a 13-digit code handwritten on a page in a huge and dirty ledger. The code was my Social Security number plus four digits I had selected to guard my identity even further from God knows-who might be prying— my wife, employer, insurance company, or, in my particular case, even the FBI or CIA. I read the columns to the right of my uniquely identifying code: ELISA 1: Positive. ELISA 2: Positive. Western Blot: Positive.
“Yeah.” the social worker grunted, slamming the big book shut lest I see more than I should. “You got it.”
I sat inert...less stunned by the news than I was at a loss for what to say in response to the tactless revelation.
“If you're going to kill yourself, don’t do it here,” the gruff voice of compassion intruded into my apparent catatonia. Well, at least now I knew what to say to him.
“Fuck you. asshole!”
I got up. walked out of the Inner City AIDS Prevention Clinic and into the damp chill of a New Orleans spring. Completely numbed by the disclosure. I walked on. mindlessly passing my pickup truck, shaking my head over and over and. no doubt, muttering out loud to myself. In this seedy. Third World-looking neighborhood of the Big Easy, that sort of behavior didn't stand out. in spite of my being encased in the mandatory Bally's and Brooks Brothers of my profession. Damn, I've got fucking AIDS was my mantra.
After a few blocks, my mental cursor jumped to the next line. How the fuck could I have gotten this shit? Got to be a mistake. I rationalized. After all. I'm neither a faggot nor a junkie...well, at least I hadn't shot any dope in the last 11 or 12 years. I’m an ex-biker with a black belt in tae kwon do; a veteran of shitty little jungle wars from Vietnam to Surinam, with a couple in between; I had even spent a few months searching for the Truth a la Thomas Merton in a Trappist monastery between hitches in the U.S. Army; after killing a street hoodlum who mistook me for a hippie. I managed to graduate cum laude in only eight years from Leavenworth; I then decided that a real college might be more fun than the American gulag and went on to acquire several degrees, including a doctorate; as recently as 1989 and 1990, I won the California State Masters' Powerlifting championship and in *90 took the national title for heavyweight powerlifters over 50 years of age. Not your typical AIDS patient, right?
There had to be a mistake. Stupid assholes at that clinic probably mixed up my blood sample with some fruit loop’s. All I had was a mysterious and unmerciful case of diarrhea — food poisoning, no doubt — and some weird white patches in my throat that weren’t even painful. Some kind of strange bug from a Cajun kitchen...but not AIDS. Not AIDS. Not fucking AIDS!
Besides, my grandmother, a member of the German-American Bund in the 1930s who had raised me in accordance with true National Socialist values while her sons fought the Japanese, told me I was a born rebel and probably destined to hang or be shot by a jealous husband. Or, as had been predicted by a South American diplomat back in '83 when I was running around in the jungles of Nicaragua with Commander Zero. I might die by an assassin’s bullet. That was to be my fate...a manly death, if you will, worthy of my radical. Teutonic heritage. But to waste away to skeletal frailty, shitting and puking, blinded and demented by a vicious little virus that wouldn't quit until it had totally destroyed me? No way. Life might be meaningless, but there is usually some consistency to it. You know...live by the sword, and all that shit.
I felt the almost pleasurable cramping of the diarrhea and snapped out of my reverie. Even in New Orleans, one does not shit in the streets. New York or Philly, maybe, but not N’Awlins. Leaving my morbid introspection for another time. I beat feet back to the truck and headed home to evacuate my distended bowels.
For the past month I had been shitting my guts out an average of ten times a day. And I’m not talking about the squirty little runs you get from drinking the water in Tijuana...the kind that a swig of Pepto-Bismol will dry up. I'm talking about a liter to a liter and a half of brownish-yellow fluid that comes out with fire hose pressure. I amused the local medical community by describing it as “the anal equivalent of projectile vomiting.”
This monster had hit me exactly two and a half hours after I had downed a burger at a fast-food place and returned to my office. I felt an unfamiliar urgency in my gut and hurried to the men’s room. Everything south of my esophagus gushed into the toilet bowl, leaving behind an acrid, almost burning odor as if molten brimstone from the fires of hell had been doused in the water beneath me. A man from another office entered as I was cleaning myself; he immediately retreated, unable to mask his revulsion and returned with a handkerchief held over his nose and a spray can of room deodorant extended in front of him like an amulet that would ward off the evil so apparent in that odor. Thirty minutes later, it hit me again. All water this time, brown and vile with the same caustic, odious aroma.
“Honey, I had the weirdest diarrhea hit me today." I complained to my wife that evening. She commiserated appropriately and fixed me some chicken soup and crackers. The bland fluid hit my stomach, and I hit the bathroom running. Nothing, it seemed, would stay in my system very long except Jell-O. which probably contains the nutritional equivalent of the box it comes in. Pepto-Bismol made it worse; other over-the-counter preparations did nothing to abate the insidious malady.
After a few days, the cramping and diarrhea subsided, and I believed it had passed. “Worst case of food poisoning I’ve ever had.” I mused. I’d had amoebic dysentery in Vietnam and had fervently wished the little rolls of C-ration toilet paper could be doubled in size, but I had survived lengthy tours of duty as a mercenary in Central and South America and even a few brief trips to Africa and the Middle East without a hint of gastric distress. I literally had drunk from mud puddles and eaten rice and black beans off banana leaves with my hands and never had more than the expected flatulence as a result.
Only in America...food poisoning struck me twice in Florida: tainted orange juice in Fort Pierce and some bad lechon asado at the best Cuban restaurant on Miami’s Calle Ocho. I had also experienced the realities of salmonella from drinking raw eggs, Rocky style, in California. But nothing like this. No fever, no nausea, no vomiting...total and immediate forceful evacuation of everything I'd ever thought about eating and. for good measure, a couple of quarts of bile after anything resembling food was gone. Eight, ten times a day.
Thinking I was over the mysterious malady, my wife Heidi and I went off to a gun show in Jackson. Mississippi. Yahoo! Give me a crowd of gun-totin' good ol’ boys any day. I am a Southerner while Heidi is a native San Diegan, born and raised in white-bread-and-mayonnaise safety, where Negroes lived only in East San Diego and killed only policemen and each other. Now she was in the South, in a city that was 70 percent black, where political corruption brought a once-proud town into disreputable Third World disrepair. There was an average of one murder a day in New Orleans during 1991; crime and racial hatred were the leitmotif. and 55 percent of the white voters fervently wanted David Duke to be their governor. So Heidi bought herself a nice little Smith & Wesson .38 Special to keep her company while I was on my frequent business trips out of town, and I hobnobbed with the good ol’ boys. After making the second round of booths at the gun show, we headed across the street for some Southern barbecue, polished off a few plates of ribs that dripped with pungent sauce, then headed back to Louisiana.
That night the diarrhea returned with a vengeance. Well, we agreed, no more spicy foods for Johnny Fultz. We reasoned with academic surety that my intestines were still tender, and the tangy sauces of Mississippi and Louisiana were a no-no for the time being. But logic failed. The ailment was worse than ever. For the very first time I thought about the worst-case scenario — AIDS. I had read that uncontrollable diarrhea was a symptom, and with all the traveling and fornicating I had done in the Third World, who the hell knew?
I raised the issue with Heidi in an off-handed manner; she didn’t even respond. We knew that The New York Times had exposed the myth of heterosexual AIDS, and I’d always thought Magic Johnson was a little funny after I’d seen him hugging Isaiah Thomas and read that they sent each other flowers. The conventional thinking was that in spite of what the Centers for Disease Control said (who believes the government?), only faggots, hemophiliacs, Haitians, and junkies got AIDS. The joke used to be that the toughest thing about getting AIDS was convincing your mother that you were a Haitian. So I repressed the thought and turned my attention to the economics of my strange affliction.
Years earlier I’d left the practice of clinical psychology, dismissing the profession as a scam executed on the weak by the lazy, and returned to the world of electronics and computers. I was working at a new job. selling high-ticket laser-optic storage devices and micrographic equipment to the government agencies and the business community of the Southeast. It paid good bucks, seeing that we were smack in the middle of the Bush recession, but offered no insurance coverage for a period of three months. I had only a few more weeks to go. but this was getting serious. Not only was it affecting my job performance — pretty hard to make presentations when you’re afraid you might shit your pants in the middle of one — but I had lost more than ten pounds in two weeks. I would have to reach into my pocket and (gulp) actually pay to see a doctor.
While on a business trip to Fort Lauderdale. I went to see my old family physician. Antonio Machado. M.D., is a sort of Cuban version of Marcus Welby — kind, compassionate, wise, and very conservative in his treatment approach. After the Castro revolution, he had escaped Cuba and made the 90-mile trip across the Florida straits to freedom and safety on inner tubes tied together with fishing nets. He had bussed tables while learning enough ingles to pass the Florida medical licensing exam; and when I was working with the Nicaraguan contras, he sent us the free samples of medications the drug companies showered him with. I trusted him completely, without reservation, with my life.
“You have a heart arrhythmia, weakness and twitching of the extremities." he said. “You are dehydrated and have an electrolyte imbalance. If you had waited a few more days before seeing a physician, you would be dead.” He recommended a diet rich in potassium and calcium and all the fluids I could pour down me. “You also have a fungal infection in your throat. This is because you are so run-down from the diarrhea and dehydration.” He shined his light down my throat and held up a mirror so I could see the unoffending while patches.
“Look, doctor." I said, handing him a sealed cup containing a stool sample, "should I have an AIDS test or something to at least rule out that possibility?"
“Don't be silly. You have food poisoning.” he declared with authoritative finality. Dr. Machado handed me a prescription for Vibramycin. a powerful member of the tetracycline family that will kill anything that wiggles, and Mycelex Troches for the fungus in my throat. “Take the Vibramycin twice ~ a day. and suck on five of these lozenges each day for the next 16 days." he added. "That will kill the infection once and for all."
I called Heidi. “Ha-ha. I’m going to live." I joked. "Dr. Machado said it’s just food poisoning. and some kind of weird fungus has developed in my throat, but he said it’s nothing serious. Guess I should quit nibbling on your toes."
I shit myself twice on the drive back to New Orleans and after a few days realized that the costly antibiotic wasn’t doing a thing. I chug-a-lugged Pedialyte, a fluid rich in potassium designed for infants with severe diarrhea and vomiting, to combat the electrolyte depletion and the general dehydration and smiled when I saw that the patches in my throat disappeared by the second day. But I kept sucking on the vile, metallic-tasting Mycelex. determined to win at least a minor battle with whatever demons were attempting to possess my body. I found another Cuban-born physician in my area (I’m biased toward Latin American doctors; as a rule, they don’t drive Porches or wear Rolexes) and presented him with the diarrheal dilemma. Dr. Castro (no relation), a younger, more muscular version of Machado, told me to switch from the Pedialyte to a much less expensive sports drink, gave me a prescription for ciprofloxacin — a new antibiotic practically guaranteed to kill any living organism smaller than a cat — and two sealed cups for more stool samples. His nurse, a rotund young lady who seemed to really care about her work and the patients, drew three tubes of blood, and I was off to the pharmacy.
Another bummer. Whatever the new drug killed, it wasn’t what was causing the intense diarrhea; it continued unabated and I kept on wasting away. When I went to prison for killing the hoodlum and wounding two other members of his gang, I was 15 months out of Vietnam and still reverberating with occasional relapses of chills and fever from the Southeast Asian brand of malaria. And my new hobby — drugs — had given me what was then called serum hepatitis; so I weighed about 129 pounds soaking wet. But what did I care? All I did was use and sell dope, chase chicks, ride my Harley, and party with other bikers. It wasn't until I hit the joint doing 5 to 15 that the idea of improving my body as well as my mind occurred to me Over the years, both in prison and after my release, with a whole hell of a lot of sweat and pain (and a couple of three-month cycles on anabolic steroids). I weighed in at 226 and considered 300 pounds a good bench-press warmup.
So to see all that good, lean muscle mass that I had worked so hard for disappear scared the hell out of me and demoralized me. At that time I was hitting the shitter as many as 18 times a day. I lost two inches off my biceps in two weeks. I seriously considered suicide if this affliction continued.
Okay. Denial time was over; first, off to the AIDS clinic to rule out that bullshit, then to a hospital for the boatload of tests to find the little bastard that was killing me. If I had to hock my Rolex to pay for it, so be it. Fucking thing was rattling around on my pencil-thin wrist anyhow.
There are clinics everywhere, most all of them tax-supported, that will intake you anonymously, "counsel" you (which translates to asking you a bunch of questions about your personal habits and why you’re there getting tested for a loathsome disease), draw your blood, and send it off to a laboratory (usually state-owned) for detection of antibodies to the HIV virus. It is generally believed that HIV alone causes AIDS, although there is evidence to the contrary — that other organisms or infections like mycoplasma must be present to cause the full-blown syndrome. If an enzyme-linked immunosorbent assay (ELISA) detects no HIV antibodies, you are home free. The nature of the test prevents false negative readings. It is possible, however, to get a false positive, in part because there are other viruses that stimulate the production of similar-looking antibodies. So. if ELISA 1 shows positive, they do another one with the same blood sample. If ELISA 2 shows up positive, you’re basically fucked.
But just to be sure, because there is that infinitesimal chance that you got two consecutive false positives, a more accurate and expensive test called the Western Blot is then performed. This test costs 150 bucks retail if you have to pay for it yourself. If the Western Blot indicates the presence of HIV antibodies, then it’s a statistical certainty that you somehow have had the human immunodeficiency virus introduced into your bloodstream; your autoimmune system detected the little bugger's antigen and ordered the B-lymphocytes to whip up a little something called an antibody that is specifically tailored to kill that invader, which, unfortunately, is like sending the Boy Scouts to take on Hitler's Wehrmacht.
There is some evidence (the name Jonas Salk and Fort Detrick. Maryland — home of the U.S. Army’s Biological Warfare Center — keep popping up) that HIV is a man-made organism, deliberately fashioned in such a way that no natural bodily defense can eliminate it. So your first reaction, as was mine, would probably be to bend over, put your head between your legs, and kiss your ass goodbye. Ah. would that it were that easy....
If I thought the diarrhea was bad. the next step in this progression approached it in unpleasantness. Behind this door, my unarticulated worst nightmare became incarnate. Enter the AIDS bureaucracy. The Inner City AIDS Prevention Clinic was one of those dingy storefronts that used to house methadone clinics back when the Great Society pretended that white liberals actually gave a shit about junkies and the other dregs of humanity that perpetually require social “services.” The receptionist, a young girl with bad complexion but eager attitude, checked off my appointment with the 13-digit code we had arranged when I had called and asked to be tested. Within minutes a kindly-looking black grandmother appeared and ushered me into the tiny cubicle in which she worked. A handwritten placard hung on the wall asking some pertinent questions; Have you I) engaged in anal intercourse? 2) traded drugs for sex? 3) shared needles to inject drags? 4) HAD WHITE SPOTS INSIDE YOUR MOUTH OR THROAT? 5) HAD UNEXPLAINED. PERSISTENT DIARRHEA? I read no further. Ah shit, I thought, I remember this feeling from a patrol north of Dong Ha when I heard a mortar round leave the tube and knew it was incoming. I no longer wanted to be there, but I knew that this juxtaposition of time and space, this scroungy little hole-in-the-wall clinic was exactly where I was supposed to be at this moment.
“Do you consider yourself straight, gay, or bisexual?” the lady droned on. working her way down the questionnaire. So this is where the CDC gets its data, I mused, only halfway listening to her. Yes, I’m straight; no, I never traded drags for sex. unless you count all those vials I handed chicks in Fort Lauderdale so they could go “powder their nose.*’ A healthy toot of 88 percent pure Bolivian was certainly worth a blow job in the parking lot...at least it was in South Florida. Oh, this was an interesting one. Yes. I have had sex with women from the Caribbean and Brazil too, now that I think of it. Why? They just want to know. Okay, let’s get this over with, please, so I can go to the fucking bathroom for the sixth time today.
Finally, the mandatory data-gathering inquiry ended and another black lady entered the room, this one in a starched, white uniform. Ah. the nurse. I made some forgettable, inane comment, trying to mask my anxiety, as she drew the blood. Then it was over. I had cleared the first hurdle and had my First encounter with the New Orleans AIDS bureaucracy — with a few notable exceptions in both directions, the most well-intentioned group of incompetents I have ever met. From physicians to clerks, they really try to do a good job. but it seems beyond the capability of most of them. The best and brightest of the bayou are evidently not drawn into the AIDS-treatment arena. Makes you hope the researchers are a little higher on the food chain.
My next visit to the clinic was to get the results (you already know about that), and then — joy of joys — I got to tell my straight little wife. who never even smoked a joint in her life, that her husband not only had a terminal disease, but one generally associated with sexual deviance and drug abuse. Well, she knew I wasn’t a Haitian or a hemophiliac and. Lord knows, she had plenty of evidence that I wasn’t homosexual; and the only needles that had penetrated my body during our marriage had been factory-sealed and full of anabolic steroids, not dope. So what the hell could I say besides. "Well, they say I have AIDS and I’m going to die.”
We cried together...for each other. She for me and I for her. She didn’t deserve this. Not that I did. but I knew I could handle the death part. Dying is easy. Not only have I been close to it countless times, but I’ve seen people that were assholes die and die well, so I surely could do no worse. But to leave this woman...ah. that was something to mourn. But we cried it out and then dried our eyes and got to work on the problem.
The first step was to get information. Our knowledge at the time was simply that if you got AIDS, you died. That was it. Case closed. A call to the CDC brought not only a compassionate response, but about five pounds of information in my mailbox a few days later. One of the first things w e learned was that just because you test positive for HIV antibodies, you don’t have to sell the shithouse because you haven't lost your ass...yet. No. the test that gave me the dreaded results was to be just the first of many.
Step two was to get a handle on the progress of the disease. The average person has roughly 800 to 1200 CD-4 cells per cubic millimeter of blood. These cells are vital to the body ’s main line of resistance — the autoimmune system. AIDS attacks this system, so the absolute number of these cells is a marker, an indirect measurement, of the advance of the infection's insidious intrusion. Again I went the anonymous route and called the New Orleans AIDS Project for an appointment to draw more blood.
The N.O./AIDS clinic is on the outskirts of the French Quarter, near the old French Market. Its huge sign juts out boldly, overhanging the sidewalk. I didn’t feel very anonymous walking in there, but this had to be done. The clinic is run basically by and for the gay community; the staff members are either fag hags or overtly gay young men who apparently have had a couple hours of “training" and then were turned loose to staff the AIDS hotline and otherwise serve a frightened, stressed-out population.
I went through another "counseling" questionnaire and then went to see a white nurse this time who drew out a couple more vials of my dwindling blood supply. The results, she informed me. would be back from Baton Rouge in a week. Then she told me a few things I didn't want to hear but needed to know: no more raw oysters or sushi; no more raw egg protein shakes; forget about meat the way I like it — ultra-rare. She advised me to get Dial liquid antimicrobial soap and use it often. She explained the workings of the immune system and told me that AZT was generally prescribed when the CD-4 count went below 500.
When I returned for the results, she brusquely informed me that my CD-4 count was 30. Anything under 50 is virtually the same as having no immune system at all. It was a wonder I was still alive. I must have had this bad boy for a long, long time and probably had very little of that precious commodity left.
“Do you want to see a doctor?" What the fuck for? I'm a dead man. Once again I left a clinic feeling lower than whale shit and still, by the way. racked by diarrheal cramping every few hours.
Heidi again helped me re-establish some equilibrium and motivation to carry on. and I resumed my study of the enemy. One of the features. I learned, of this perhaps genetically engineered virus is that it is attracted to one of the proteins on a specific site of the body’s autoimmune cells. In fact, the DNA of the HIV protein and that of the human CD-4 (also known as T-4) cells is identical.
Once attracted, the little monster virus actually hooks onto the human cell and. like the creature from the movie Alien, injects its RNA into the very cell (hat is part of the body's defense system. It also adds an enzyme that interacts with the RNA to, in effect, create little HIV cells inside the now-infected CD-4 cell. Then, again Alien-like. miniature HIV cells called "buds” pop out and enter the bloodstream. This is just one of the ways the little bastard reproduces itself in your body. Meanwhile, the autoimmune system is freaking out and starts attacking its own CD-4 cells because of the protein that is identical to the viral invader’s. Little by little, the immune system destroys itself and opportunistic organisms meeting virtually no resistance infect and ultimately, overwhelm the host.
All around us and within us are hordes of little things that the species has learned to deal with via the autoimmune system. These organisms are myriad and horrible in their effects on the human body when unchecked by a healthy set of lymphocytes (autoimmune cells). First, there’s a jewel called cytomegalovirus (CMV). a herpes-related virus that can attack almost any organ system in the human body, including the eyes. It can cause blindness and death. It is estimated that over half the world’s population has been exposed to CMV. Then there’s candidiasis, the ubiquitous yeast infection, that had already colonized my throat and esophagus. Nothing that a little Nystatin won’t knock out...unless your immune system is shot and the infection becomes systemic; then you’re in a world of trouble.
Arthur Ashe discovered he had AIDS when his brain was attacked by a protozoan called Toxoplasma gondii. The resulting infection is known as toxoplasmosis and. while the brain is its favorite target, where it can cause blindness, raving insanity, and death, it can settle anywhere in the body, including your heart, lungs, liver, and even your balls. It comes from cat shit. Bird droppings give us the deadly and ubiquitous Mycobacterium avium. It likes to colonize the lungs but isn’t really that picky; it’ll kill you through any organ system unless an alert physician jumps on it with aggressive antibiotic therapy.
There's more, lots more. The more you learn about these deadly organisms that are literally everywhere, the more you appreciate the seeming miracle of human existence.
Until recently. PCP (pneumocystis carinii pneumonia) has been the primary killer of AIDS patients, but aggressive prophylaxis with pentamidine and sulfa drugs is now doing a pretty good job of prevention. Kaposi's sarcoma, a skin cancer formerly limited to elderly Ashkenazi Jews, was one of the first clues that a new and malevolent djinn had been loosed upon the world when it started showing up in young gay men in New York and San Francisco.
Then there’s my all-time favorite for the nastiest disease to come down the pike — cryptosporidiosis. Another protozoan infection, discovered in animals in 1907 and first identified in humans in 1975. It is found in most of the cadavers of autopsied AIDS patients. It is considered a serious infection that is often fatal. According to Constance Wofsy, M.D.. crypto (as it’s affectionately known in the AIDS community) "causes the intestines to expel water as if a pump were turned on by a biochemical switch." Hmmmm. sounds familiar. There is no known cure or proven treatment for cryptosporidiosis, although Pfizer and several other drug companies are running clinical trials, testing the effectiveness of new and old drugs in controlling or curing this horrible infection.
And still there is more...shit so horrible that I know you don’t want to hear about them any more than I want to contemplate suffering with one or more of them. You ought to stop right now and drink a toast to your immune system for doing such a good job of protecting you from all these merciless organisms. I suggest a carrot juice cocktail.
Well, out of the books and back to reality, my reality, the reality of shitting so much that I had a prolapsed anus, which means no sphincter control, and waking up three
times in one night with episodes of incontinence. And to top it off. Heidi’s mother arrived for a visit...a lovely, elegant Rancho Santa Fe type of lady who looks 20 years younger than her age...and I’m shitting my guts out. I did my best to cling to some semblance of human dignity with muted mutterings about having picked up a strange bug rather than telling the lady that her daughter was married to a man dying of a nasty disease mainly associated with social deviance. I thought I had actually died several weeks before and was now in Hell.
But life went on. and I vowed to do my damnedest to make sure mine did. if I could just get over this fucking diarrhea. And the bastard played with me. Some days a handful of Lomotil washed down with Imodium would bind me right up; other days the medication would gush into the toilet, not even having had time to dissolve in my infected intestines. Okay. I’ve got to see a doctor. "Pre-existing condition." said the insurance company. Xin loi. GI...sorry ’bout that. That left only one alternative that I was aware of at the time: the dreaded Charity Hospital of New Orleans, a modem charnel house, where trash piles up in the hallways and corpses have been known to sit in the emergency room waiting area for two days before any staff members noticed. And it was more bureaucracy to wade through.
Again, incompetent people trying to be as nice as possible. I pitied them almost as much as myself and the other patients. The other patients. .. Oh. my God. if you want to plumb the depths of your personal compassion quotient, visit the waiting room of an AIDS clinic. If you don’t feel for the suffering wretches, you are dead and without
a spark of humanity. Even my biker-tough National Socialist mercenary heart bled. It looked like sick call at Auschwitz, with wheelchair-bound. skeletal forms that used to be young men. mournful black junkies, burly truck drivers with the look of fear and disbelief still etched onto their faces. There were young women, one of them 22 and pregnant, a Desert Storm veteran, and me in a blue pin-striped suit with the Rolex still clinging loosely to my left wrist.
I sat next to an emaciated man whose effeminate mannerisms proclaimed his membership in the gay community. He was holding a six-pack of a nutritional supplement drink that a social worker had just given him.
“Good stuff,” I told him. "I used that to gain weight when I was powerlifting."
“I’m wasting away.” he responded without looking at me. “I cook good, nutritious meals for myself, but my body won’t absorb the protein. I’m...I’m a gourmet cook..." He faltered, as if overcome by his own anguish. I turned away to hide the stinging tears that sprang to my eyes.
The HIV virus is known to eat away at the intestinal villi. These are tiny hairs inside the intestines that act as sensors to alert the body that nutrients are moving through the digestive system and that they should be absorbed into the bloodstream. When enough of the villi are destroyed. the body just doesn’t make use of food and the person eventually dies of malnutrition. It’s called a malabsorption syndrome. This poor guy was fighting for his life and coming out on the short end. A few years ago. my mother died in my arms of starvation caused by liver cancer, so my empathy for this fellow was deep and heartfelt. I had come to hate this vicious little virus.
The receptionist called my name and spared me further contact. I mean, what do you say? Geez, I’m sorry you’re dying, pal. or something even dumber than that?
I explained the situation to the receptionist; she said no problem and keyed me into the computer. A printer shot out a plastic card with my name, address, and patient number on it, and I was now in the system, officially an HIV patient. Now there could be no more anonymity and no more denial. There were, of course, more tests, more little cups to pee into and try to hit with diarrheal liquid, interviews with schizzy social workers, and harried nurses. Any idea how you got this? Beats the hell out of me. lady. Does it make a difference? Well, not really...if you got it, you got it. But there are a few differences. Hemophiliacs, for example, don’t get Kaposi's sarcoma, and apparently only male homosexuals get flourishing crops of peri-anal warts as part of their AIDS experience.
On my second visit to Charity, I saw a doctor, in fact, the clinical director. He showed me into the examining room, gave me the most cursory physical examination I'd had since Parris Island, then told me my CD-4 count was down to nine and that my diarrhea was caused by cryptosporidiosis, for which there was no cure. He added that it would either stay in my system and quit bothering me. pass on out of my system, or kill me. I’ll take the middle one. Doc. He wrote me a scrip for AZT and told me to take five a day. ordered aerosolized pentamidine treatment once a month as a prophylaxis for PCP, and wrote me another prescription for a drug I had just told him I was violently allergic to. Another well-meaning incompetent, which is an auxiliary way of saying “asshole.” He looked down my throat, saw the candidiasis flourishing again, and added Mycelex to the scrip. “Do you need Lomotil for the diarrhea?’ he asked.
“Got plenty,” I responded, “but how about some Azithromycin?’
“What's that?" he replied. I handed him a list of 13 references on the use and research going on with this new macrotide antibiotic that was being tested against the ravages of crypto. I also gave him the phone number of the physician at Pfizer’s corporate headquarters in Connecticut who was running their clinical trials and told him that Pfizer would provide the drug to me free of charge under what is known in the pharmaceutical trade as a compassionate-use protocol, if he would just call and ask for it. “I can’t do that,” he said. “The bureaucracy....”
“Fuck you, asshole,” I said as I exited the Charity Hospital and their system, after filling the free prescriptions, of course. A month’s supply of AZT retails for about 400 bucks.
“Heidi, I’m not going back to that fucking Charity Hospital. The doctor’s not only a raging queen, but he’s stupid.” I described the day’s encounter to her. “...And then the guy hands me a prescription for Bactrim after I’d just told him that I was allergic to sulfa drugs!”
She responded coolly, “Look, I’ve been reading through a few of the articles and books the CDC sent you. They’re doing a lot of research and clinical trials at Veterans Administration hospitals. You’re a Vietnam veteran. Can’t you go to the VA for treatment? John, you’ve aged 20 years and you’ve lost 25 pounds. Do something...now ” she commanded.
She handed me the Treatment Directory, published by AmFAR, the American Foundation for AIDS Research, one of Liz Taylor’s pet projects, and pointed out the clinical trials going on at various VA medical centers. I also noted with interest that the University of California at San Diego was heavily involved in treatment research, not only for AIDS, but for a lot of the opportunistic infections that do the actual killing of AIDS patients. In fact, it seemed that San Diego was a virtual beehive of activity in all phases of the disjointed effort to combat the disease. There’s also the VA in La Jolla, San Diego Community Research Group, the Immune Response Corporation in Carlsbad, Viagene, and a host of smaller companies doing everything from basic cellular-level research to testing new drugs and searching for the “magic bullet,” the vaccine that will make all of this a rapidly fading memory. But the here and now was still New Orleans, which does have a major VA medical center and. I learned from a call to them, an AIDS program.
I immediately drove to the VA, across Perdido street from the dreaded Charity Hospital, and almost smiled when I walked in the door. The floor actually shone with a fresh coat of wax. no bums slumped in the hallways, and the place was. of course, trash free. This was a real hospital. I presented one of my DD-214 forms to the receptionist, confirming that I was indeed a veteran, and told her I had AIDS.
After a false start with a downed computer terminal. I was entered into their system and presented with another plastic card confirming my eligibility for all services offered by the VA. Hallelujah! I finally got something from the government besides a handful of ribbons, three honorable discharges, and a kick in the ass. I was sent immediately to the infectious diseases clinic, went through their intake procedure, which was basically the CDC questions and a fairly extensive medical history, with a gay male nurse who had formerly worked at Charity. He confirmed my assessment of the place.
As before, the second trip was for an exam by a physician, this lime a bright one. A Belgian, born in the Congo, Pierre de Jace. M.D. answered my questions, probed my body, and studied my blood profile. Most of my questions were about prophylactic drugs to prevent the scariest of the opportunistic infections, called OIs by folks in the trade. No. he told me. the tests showed that I had not been exposed to cytomegalovirus or toxoplasmosis; the aerosolized pentamidine treatments were the best preventative of PCP. and, for the rest of the spectrum of demonic maladies, the drugs to prevent them had some unpleasant side effects.
“You’re not sick now,” he told me. The cryptosporidial diarrhea had finally left me. albeit begrudgingly, about the time I started on the AZT. There is some evidence. I later learned, that AZT does kill the crypto protozoa. “We’ll see you on a monthly basis to monitor your blood chemistry and general health. If you develop any symptoms — fever, night sweats, headaches, anything — call us immediately and we’ll see you.”
Great. Thanks a lot. Doc; you don’t know it but you guys just saved my life. I might have AIDS, but at least I was seeing a real doctor in a real hospital that had shiny floors and computers. the diarrhea had stopped, my appetite was back, and I had a fresh supply of AZT. Shee-it! Bring on the lions and tigers and bears.
One of the things I had done when things looked the darkest was called my friends — a half-dozen high-quality people, all combat veterans either as soldiers or journalists — and told them what was going on. I was amazed at the intensity of the love and support they offered me. Nothing maudlin or condescending, no jokes about Haitian progenitors —just real caring and then a flood of advice and ideas on how to fight the thing. Two guys from Florida — one a veteran of the Navy SEALs, the other had been in Air Force’s Special Operations and actually had been in the Soviet Union on clandestine flights — owned stock in a pharmaceutical research firm that was secretly testing an "underground” IV treatment. “This stuff works," they told me. “We’ve seen the data.”
Hey, I’ll eat shit and howl at the moon to cure this bad boy. Plug me in, I told them. Another fellow’s wife called to say how sorry she was and offer nutritional advice. I can't say I was overwhelmed by their responses, but I was damned happy to know that I had earned the genuine concern of people I cared for and respected. The crowning moment came when my all-time best friend, a movie producer and Special Forces veteran who had operated in North Vietnam and, like me, a black belt in tae kwon do and a former fornicator of many women, called and told me that if anyone could beat AIDS, it was me. He then added, verbatim, the words my wife had said to me: "I care about you. and I want you to continue to be part of my life.”
I had also called my ex-wife and the girlfriends I had slept with between marriages and told them the news. Heidi and all of them were tested with the same results: Negative. They all thanked me for telling them and praised me for being responsible. Yeah, that’s nice, but if the results had been different, I shudder to think what their reaction would have been. Especially Heidi.
I had already promised myself that I would commit suicide if she had it. I consider myself a tough guy, but the shame and guilt would have been too much to live with.
Bolstered by the support, I renewed my efforts to return to health. I ate everything in sight, took every supplement and vitamin I could afford, and started working out with calisthenics. I gained the 25 pounds back faster than I lost it. But Dr. de Jace told me the blood work indicated that the HIV virus was still chewing away at me. “But I feel great" was my protest. He smiled with a slight air of European condescension. “You are a scientist. You know that there is no correlation between your subjective feelings and the true state of your health.” Well, they never taught me that in psychology school. Why do physicians ask you how you’re feeling?
Gary, the nurse, chimed in. I've got two patients upstairs with CMV retinitis; they’re dying and yet they both tell me they’ve never felt better in their lives.” You motherfuckers really know how to make a guy feel good, I thought. What a bummer, to think you’re okay and not be...or maybe it’s a blessing. If I knew what was waiting down the road for me, I might blow my brains out now.
Family conference lime. Okay. wife, here’s the deal. I’m stabilized now. but I could be dead tomorrow night of something I catch in the morning. The VA here has good people, but all they can do is give me AZT and watch for OIs. They won’t let me into any of the research programs here because my CD-4 count is below 50 and they figure I’ll die before their fucking study is concluded. So, you’re a San Diego girl, right? And you’re homesick, right? The VA center in San Diego has been designated a research site, so maybe I could get more from them than AZT and a free blood test each month. I meet all the criteria for an AIDS diagnosis, so I can quit my job and file for disability. We could leave in a few weeks. What do you think? She didn’t answer. She was packing.
San Diego: Hotel Del. Black's Beach, Mission Bay, Moonlight Beach, Sea World...all that good stuff plus the daily fog that goes by the euphemism “marine layer.” What a place! San Diego is also home to a fine VA facility (with all the retired flag officers here, dare they have less than first class?); very busy research and treatment programs at the UCSD Medical Center and the San Diego Community Research Group; Jonas Salk working on a vaccine at Immune Response; Viagene, where they’re getting ready to test a vaccine; various community-based treatment and testing centers; and a county health department that’s trying to get a handle on this epidemic.
Michele Ginsburg, M.D., the San Diego County epidemiologist, says that there have been 3401 cases of AIDS diagnosed in the county. This doesn't include people like me, diagnosed elsewhere but living here. By the way. there are criteria for an AIDS diagnosis. Not only must you be HIV positive, you must have had some of those wonderful OIs. The government has proposed but not yet implemented a new definition: CD-4 count below 200 and 2 of 13 opportunistic infections.
If you fit into this denotation, there are a few upsides. You will learn a lot of big words to impress your friends with; you don't have to work, if you can live on a few hundred dollars a month and if you can survive several encounters with the least empathic and, in my experience, the most ignorant civil servants ever paid to fuck the public — the Social Security Administration. The perception among many members of the AIDS community is that they will deliberately stall your claim, hoping that you will die before they have to give you back any of the money you paid into their confiscatory system. You may well discover, as did I. that they conveniently have no record of several years of your employment, especially years in which you made some real money. What? The government ripping people off? What a novel concept.
Dr. Ginsburg estimates that there may be as many as 30,000 people living in San Diego County who are infected with HIV. Not with full-blown AIDS — that means you’re infected with the virus and have been sick with opportunistic infections known to be associated with HIV. There can be as much as ten years or more between exposure and the onset of symptoms. So a whole hell of a lot of folks may be walking around, shopping at Nordstrom, cursing the Padres and the Chargers, catching rays, and living the good life of San Diego...and. all the while, the hellish virus can be doing its dirty deeds, eating away at their immune systems. Without George (the Wimp) Bush declaring a national health emergency and ordering mandatory and universal testing, predictions are difficult and are based on estimates of the population size of the at-risk groups (male homosexuals. IV drug users, hemophiliacs, prostitutes and their johns. etc.) and applying empirically derived frequencies of infection. This method is, admittedly, less than perfect because of the illegal and clandestine nature of some of the groups' membership. Estimates are made of IV drug users, for example, by counting the number of people seeking treatment for drug abuse, making an educated guess as to how many people aren’t going into programs, and then adding the two.
But even non-membership in one of these groups is no guarantee of avoiding HIV. There are places where you can be tested anonymously and without charge. Let the government pay for it. What do you pay taxes for? It’s time you got something in return besides being fucked and not kissed. Free and confidential HIV testing is available all over the county: for San Diego, you can call 236-3847; in North County, it’s 740-4000; and down south. 691-4525. Don’t be a wimp. Do it. If you test negative, you'll be able to get more dates and get laid a lot. If you’re positive. don’t get all depressed and sit home sniveling. People who do that die a lot sooner than they ought. Get your ass to a treatment center for a CD-4 count and a complete blood workup: if your CD-4s are below 500, you’ll want to consider some of the medications like AZT. ddl. and ddC. They will, at the very least, improve the quality of your life and. with luck, extend it until the cure or control is found. Call the CDC at 1-800-342-AIDS or 1-800-344-SIDA and ask them to send you an information packet. You need to learn everything you can about AIDS. Order the ’’AIDS Treatment News” by calling 1-800-873-2812; it’s a great little newsletter that’ll keep you informed. Either way. positive or negative, you should clean up your act — literally. Wash your fucking hands...often. Eat lots of fresh foods, wash your vegetables, and forget about raw seafood. I know that’s a bummer; I had a hell of a sushi habit once. Exercise! Aerobic exercise has been proven to strengthen the autoimmune system. Tell your sex partners, present and past. Be responsible; no one likes a coward. Don’t be coy with them, no guessing games. A sample line is, “You’re not gonna believe this, but I just tested positive for HIV.” No, you're not going to win “Person of the Year” honors from any of them, but you might save someone from a very horrible experience. Learning about it when you're practically at death's door, like I did. is no fun at all.
Activate a support group; talk about it with people you know and trust. If they run screaming from you. fuck ’em; they weren’t friends anyway. If you’re HIV positive, you’re going to have to educate those friends and family members who stick with you, partly to allay their fears and to enable them to give you the help you’re going to need. You’re not going to infect anyone by a sneeze or off the toilet seat either. No matter what the CDC says, nobody really knows how HIV is transmitted other than by infusion of adulterated blood products. People like Magic Johnson telling eight-year-old kids to use condoms are a little ridiculous, in my opinion. Somehow. I don’t see the AIDS epidemic as being a result of third-graders fucking each other. I went back over a dozen years, and none of my sex partners are infected, so calm your fears and those of the people around you. Hygiene and common sense will take care of you and yours. And by all means, keep the stupid needles out of your veins and the pipe out of your mouth. Didn't you ever wonder why they call that shit “dope"?
If you don’t have true friends or loyal family members, or if you do and they can’t cope with your predicament at the time, there are plenty of community-based groups for all sorts of HIV-infected people — black, white. Chicano. straight, or gay. You need to talk with people — to get your fears out so you can deal with them effectively, for education, and for the sharing of ideas, treatment news, and coping skills. The AIDS hotline in San Diego is 686-5000; they’ll be glad to hook you up with folks who are in the same boat.
As for me. am I doing all the stuff I just recommended? You better believe it. I’m in (his thing to the end. Waiting to see a VA doctor next week from whom I will demand the newly approved ddC along with the AZT; every two weeks I insert a catheter in a forearm vein, hang my own IV bag that’s chock full of the underground drug VIFS-7. and settle down with a good book while the lactated solution drips into my bloodstream. I eat like a horse, down vitamin and mineral supplements like they were M&Ms. run fresh veggies through the juicer and chug-a-lug the healthful liquid, and am back to pumping iron. And even though I truly am walking through the Valley of the Shadow of Death. I fear no evil for, unless HIV proves me wrong. I am the bad-dest motherfucker in the valley!