Something to do with Death

The timestamp on the first file copied below is March 12, 1993. The second part is dated Friday, May 21, 1993. This is quite long and may not hold your interest, but it is important to me. These files were saved to a floppy disk that I found while cleaning out my desk out this afternoon. They describe how I reacted to the death of some close friends long, long ago. I was just notified (via FaceBook) that another close friend of mine has died, and I did not have a chance to say good-bye to him. He moved away a few years ago, and we've exchanged occasional emails and text messages. The last message I received from him was a beautiful photograph of him holding his newborn son.

I once worked on and produced documentary films. Some were good, one even garnering an Academy Award nomination. But most were obscure, rarely seen, and most of them never made it beyond the planning stages. What is left of them sits in boxes stored in my garage. But the stories behind them define my life much more than the unfinished dreams they represent. I submit this stuff semi-regularly to an Amateur Press Association, an old relic of pre-internet communication, entirely dependent upon the Pony Express Service, now referred to as the USPS, or 'SnailMail." I was a seventeen year old idiot with a mimeograph machine when I started this thing in 1975, and here I am, still doing it decades later. What the fuck is wrong with me?

I was ready to just sit out this mailing, my attention having been entirely consumed by the latest Big Project and with its deadline unfortunately coinciding exactly with Mr. Breiding's rock-solid APA-50 deadline, I had just about written off being able to do anything for mailing #104. But things in my life have a habit of changing very quickly, and in the last 48 hours, I decided that I simply had to do what I'm doing.

What I am trying to do is produce another documentary. After my last experience, you'd think I'd have learned my lesson, but long-time APA-50 members have probably noted by now that I'm quite thick-headed when it comes to hopeless causes. This one, however, is somewhat different. The idea for the program was suggested by Pam Davis, the woman who shares my life and my children. For those of you who don't know her, she is Nurse Manager of the Oncology Care Unit at Mount Zion Medical Center in San Francisco. She connected me with the director of the Art for Recovery program and got the ball rolling on the project. It was pointed out rather early on how difficult it would be to get all the proper authorizations to do what we were planning to do, so I decided I need not hold my breath to get started. Like so many of my other great plans, I expected it would eventually go away without ever amounting to much of anything.

Toward the end of February, almost without warning, I got a call that notified me the project had gotten a green light from the powers that be at UCSF and before I was at all ready, I found myself staring at a deadline for submitting a grant proposal to have the film funded. In the space of a week, I had to call up acquaintances to find a crew willing to be listed on the proposal, collected quotes for equipment rental and availability, design the schedule and budget. Next, I had a press conference to cover. Then meetings arranged with the principals at UCSF/Mount Zion. It was all spinning too fast for me, but I realized I had to hang on if I ever expected to reach the brass ring.

On Wednesday, March 10, I took a day off of work to meet with several staff and patients at UCSF/Mount Zion, then have lunch with Pam. Since I was in the City, I also planned to stop by and see David Wells at the Zen Hospice. I hadn't seen David since last August, just before he moved to the area. I had wanted to visit with him earlier, but I was afraid he was perhaps too sick to socialize with a brief acquaintance. He has good days and he has bad days, but Steven assured me that if I called first to see if he was feeling up to having visitors, it would be all right. So I arranged to stop by on Wednesday after my meetings at the hospital.

I was pleased to see him looking much better than I'd anticipated, but I felt something like an intruder since his brother Michael and his friend Abigail were with him when I arrived, and they quickly excused themselves to be on their way. I was afraid my entrance had abbreviated their visit, but David explained I wasn't disturbing anyone. Abigail returned after about half an hour and we all had a nice talk. It was good to see David again. He looked much different than when I'd first met him in August, but that was not unexpected.

We were relative strangers to one another, really, having only read each other's APA-50 zines and spoken at a party for about an hour or so six months earlier. I realized that if I was ever going to get to know this guy, we were going to have to get a lot of communicating done in a very short time. Remarkably, we did. In the space of only two and a half hours, we both opened up all kinds of doors to each other and explored together various psychological rooms representing common experiences and attitudes. It was absolutely fucking amazing.

David Wells is an incredible man. He has done so much and knows so much and has lived so much that I had a hard time reconciling the playful spirit, the quick humor and sharp intellect of the man's mind with the frail, painful body in which this beautiful soul was trapped.

He showed me his sketchbooks, where he has tried to illustrate his feelings about his life and his pain. It was remarkable how David's own spontaneous Art for Recovery did for him in private what the UCSF/Mount Zion program does in public. Some of the drawings, he explained, were done while he was demented, and are a bit incoherent. Others are more controlled and expressive. One sketch in particular, called Brain Pain, stands out in my mind as the most powerful expression of neuropathy I've ever seen. No clinical description of this condition can ever convey what David is going through better than his own picture of it.

David is a warm, friendly, generous person and I wanted very much to be able to give back to him the time and trust he was willing to give to me. Unfortunately, nothing I have to give will do him much good. Time is his most precious resource, and I could only hope that we had spent it well. I think we did. At least, when I said good-bye, I felt we had both gained a deeper understanding of each other, had taken and given in proper proportion.

It was also quite an emotional hurricane, coming on the heels of my research into Art for Recovery, where I examined paintings and sketches by people with AIDS and cancer. Earlier in the day, I'd met briefly with Randy Carter, who is also quite sick. I told him how impressed I was with the Mardi Gras life-mask he had made, and he confessed that he didn't think he would ever have enough creative energy to do anything like that again. He's a tall gentleman with sandy hair and glasses. The glasses were bent strangely on one side of his head. He explained that for the past week or so he has had wobbly legs and has fallen frequently, breaking his glasses on one occasion.

Driving back to the East Bay, my heart felt strangely twisted, as if it were being tugged in different directions by powerful tides. As important as the documentary seemed to me, and as enthusiastic as others seem to be about the project, it all amounts to so little in comparison to what David and Randy are having to confront. I want so much to do more for them, and yet I'm utterly helpless in the face of this obstacle.

On my way home that afternoon as I drove south on the Nimitz freeway in Oakland, something under the hood of my car began to scream. The temperature gauge on the dashboard began to rise into the dangerously hot level, and I exited the highway at 23rd street. I passed a brake and muffler shop just off the exit, but decided to turn left toward another garage. I came to a stop across the street from the garage and opened my hood. The fan belt that spun the water pump and alternator was gone and the pulley that drove it was hanging loose. The mechanic who examined it said my cam shaft was probably shot. I explained that I knew I was in need of a head gasket and a valve job as well, so all of the repairs could be done at once. His estimate for the work was $1,000. I used his telephone to make arrangements for having the kids picked up from daycare. They gave me a lift to the BART station and I caught a train to San Leandro.

As much of a hassle as it is to have your car break down on a busy freeway at rush hour, my own mechanical and personal problems on that quiet afternoon seemed thoroughly trivial.

Friday, May 21, 1993

What a day. What a goddamned rotten day. Hard to imagine a worse day. Fridays are supposed to be the best weekdays, but this one just didn't work out well at all. Oh, the morning had gone okay, I suppose, but the afternoon absolutely sucked.

Just after 1:00 p.m., Pam called to tell me the outcome of her meeting with the Director of Nursing at UCSF/Mount Zion Medical Center. Congratulations, your position has been eliminated. An unusual drop in admissions to the oncology unit had kept her floor closed for almost two weeks, so she knew something dramatic was in the works, but neither of us expected the hospital to simply close its oncology unit. Well, they weren't exactly going to close the unit, but they were going to merge it with the medicine service and put both divisions under the control of one nurse manager. And since Pam had less seniority than the nurse manager of the medicine service, she's the one who got the boot. To compensate for the abruptness of this action, she would receive severance pay through mid-July and be the first interviewed for any available position in the UCSF system at her classification. Of course, when the UCSF Comprehensive Cancer Center finally finishes construction in two years, Pam will automatically be offered the primary nurse manager position, but until the architects stop arguing with the physicians and the contractors submit their bids and complete their work, this position will remain a potential, rather than a reality. Clearly, we were going to have to adapt to some pretty drastic changes, but she assured me everything would work out.

Fine way to spend your Friday, being told that 2/3 of your household income would evaporate in 6 weeks. Then around 4:00 p.m., I got a call from Steven Black with the news that David Wells had died earlier in the afternoon. I'd only gotten the new mailing the day before, and had read David's meditations on his life and its strange course of events. I can't say I was surprised, but I was deeply saddened. I had hoped to be able to see him again before the inevitable. After I got off the phone, my boss pulled me aside to go over some administrative matters that seemed far more significant to him than they did to me. Even Pam's bombshell from earlier in the afternoon dwindled in magnitude after Steven's phone call. Nothing beyond the death of my friend seemed at all important by the time I left for home.

Matters did not improve when the workday ended. After I picked up the children and returned home, I noticed that there was a mysterious envelope in the mail stack addressed to Pam from the Franchise Tax Board. Pam was expecting a refund, but this did not look like a check. When she opened it, we were startled to discover that the State of California claimed we owed them about $2,900 in taxes for 1992, plus a penalty for failing to pay by April 15, plus interest accumulated since April 15. A quick phone call to the accountant who'd prepared Pam's taxes was only slightly reassuring. He claimed that this happened all the time to lots of people, and we'd only been very lucky that we hadn't seen one of these letters at least a couple of times over the past nine years that we've been paying taxes in California. He said the state tax office often misplaces a tax return and generates the kind of form letter we received. In this case, they'd obviously failed to acknowledge the tax that was withheld from Pam's paychecks, because the amount withheld and the amount they claimed was due matched exactly, even though the tax she actually owed was slightly less (hence the expected refund). He said we shouldn't worry about it, but to call the Franchise Tax Board on Monday and they would clear up any misunderstanding.

Disasters are supposed to come in threes, so I felt we'd met our quota for the day. Fortunately, the evening and the rest of the weekend were relatively quiet. Nevertheless, the uncomfortable cloud of ill fortune diminished what might otherwise have been a pleasant couple of days off.

Monday was much better. The Franchise Tax Board admitted they'd made a boo-boo and they assured us Pam's refund check was in the mail (it arrived the next Wednesday). I was able to get away from work at lunchtime to go over to the Zen hospice in San Francisco for David's memorial. It was nice to sit in his room with his friends and remember him for a while, so much better than a traditional funeral would have been. It was very informal and unstructured, which made it more personal, more intimate, not overly ceremonial or superficial the way most funerals tend to be. Funerals are often more for the benefit of the living than for the dead, but David's memorial was just the opposite. This was apparently David's wish, to be reduced to the essentials and remembered for what was important, not for what was superfluous. We all just shared our memories of him and it didn't seem to matter how long or how briefly we'd known him. David was a unique individual and we all got to know him better by sharing our thoughts and stories with each other. I realized how fortunate he was to have cultivated such a devoted group of friends, and how fortunate I was to have come into this circle, albeit better late than never. Afterward, Lindsay and Faye and I rendezvoused at Wm Breiding and Steven Black's house in the Mission to drink a toast to David's memory and to introduce Faye to the glories of pesto. I felt much better by the time I left San Francisco than I had in days. Closure.

Strange things go through my head when I think about David. The day he died, I had the most bizarre feelings. For some reason, I wondered if he'd managed to watch the final episode of Cheers during his last night on Earth. He'd only recently begun watching television, a medium he'd successfully avoided most of his life, but in his days at the Zen hospice, he said he often watched TV to pass the time. In the space of a few months, he began to understand many cultural icons that he'd ignored for years. Humorous verbal references to television characters, programs and commercials (e.g., "Well, isn't that special?", "NOT!" "Help! I've fallen and I can't get up!" "Where's the beef?") usually went right over his head, but the more television he watched, the more he understood what these cryptic phrases meant and why they seemed funny to some people. Pam and I were out with the kids that night, so I set the VCR to tape both Cheers and Seinfeld, which we watched over the weekend. I don't know why it seemed important to me to know whether David had shared the mass cultural experience of Last Call at Cheers with the rest of the country, but it did. It seemed to matter even more than whether or not he'd managed to read my comments to him in the previous mailing, which appeared to me far less likely than whether he'd been able to watch any television on that last night.

Perhaps it was because David lived a life full of so much adventure and excitement on a scale I have never known and will never experience that I wanted to have some shared frame of reference with him beyond our very similar backgrounds as rebels against oppressive organized religions. Maybe David did see Cheers that night, and watched the closure of a chapter of television history, where characters who have become familiar as family to many of us drank a last toast to the place where everybody knows your name. Then again, maybe he didn't. Since he rarely watched television, he might never have gotten to know Sam or Coach or Woody or Drs. Frazier and Lilith Crane, Diane Chambers, Rebecca Howe or Carla Tortelli. He might never have watched Norm Peterson down a cold beer in a single gulp or listened to one of Cliff Claiborne's know-it-all lectures on imaginary history or pseudo-science. But with nothing better to do, maybe he did watch it, while he closed his own chapter.

David is only the second person I've known well to have died of AIDS. Oh, I've met many other people who are HIV positive and others suffering from various stages of the disease, but I haven't yet gotten to know them the way I got to know David. This will all change, of course, if Art for Recovery ever becomes a reality. The first one, though, was Bobby Homen.

I met Bobby somewhat by accident in 1987. In early December, a friend of mine named Sarah Stewart asked if I could stop by a house in Oakland one evening after work to help her with a project. I owed her a favor, several favors as a matter of fact, so I agreed. She was doing volunteer work for the East Bay AIDS Association and needed an extra hand. I arrived and met Bobby and his roommate Stan. Sarah was in the kitchen doing the dishes. Bobby was a thin, dark-haired gentleman with a quick sense of humor and hard-earned street smarts. He wore a patch over his right eye, which had succumbed to the blindness of cytomegalovirus (CMV) retinitis, one of the most common opportunistic infections associated with AIDS. He'd decorated his eyepatch with colorful, glittering rhinestones and sequins, and it looked quite spectacular. Both Bobby and Stan were in formal dress, but Bobby was having some trouble tying his necktie. One problem involved the IV tube that snaked through his shirt into an infusaport in his chest, and the other was that he simply never wore a necktie and had never learned how to tie one. I suggested we wait until his IV was finished and then deal with the necktie. He was impatient since they were running late for an appointment, but finally he relaxed until the visiting nurse disconnected his IV. I arranged his necktie and he and his roommate departed hastily with Sarah.

They were going to a funeral, something they did almost every week. I was asked to feed the dog out in the back yard and lock up the house as I left.

The East Bay AIDS volunteers maintain several houses such as this one for AIDS patients who were not so ill as to need hospitalization, but had no other housing available. Three times a week, Sarah would come by to do the dishes, clean house, drop off groceries, cook meals, take out the garbage and get stoned with Bobby and Stan. They were taking so many unpleasant medications (like the regular IV infusions to control CMV retinitis) and were in such chronic pain that the simple pleasure of getting high was the most important activity of the week. And with both of them suffering from the wasting syndrome of AIDS, they needed to get stoned to stimulate their appetites just to be able to eat a small meal.

Sarah explained to me that Bobby had been a heroin addict whose wife had thrown him out of the house when he became sick. His wife was also a junkie and had shared needles with him, so she was very likely to end up with AIDS herself, but she hadn't yet seroconverted. I often heard him complain about "that bitch" and what she'd done to him, but he took comfort from the grim knowledge that she would eventually suffer as much as he was suffering, and would probably pass the disease along to her new boyfriend who had moved in after Bobby left. But what hurt him the most was not being able to see his children. They had two kids and Bobby was heartsick that he would never see them again before he died.

I visited with Bobby several times that month, when Sarah needed some assistance. Sarah worked with other patients besides Bobby and Stan, but this house was on 99th Avenue just off East 14th Street near the San Leandro border and was closest to my home, so it was easy for me to stop by on my evening commute. East Bay AIDS Volunteers tended to burn out quickly as the workload became heavier and more help was needed. I never officially volunteered, never took any of the training or had patients assigned to me, I just helped Sarah when she needed me. We helped decorate Bobby and Stan's Christmas tree, and Sarah made some special Christmas brownies. Somehow, she had managed to visit with Bobby's wife and brought over some Christmas cards that his children had made for him. It was heartbreaking to see these drawings, with the stick figure people colored in bright red and green scribbles and the awkward, crooked handwriting across the top that said, "I miss you, Daddy. I love you, Daddy." I was relatively new to fatherhood myself, but I could not look at those pictures without choking back tears.

Soon after Christmas, Stan became ill and was hospitalized, leaving Bobby to live in the house alone until a new tenant was assigned. Sarah explained that Stan would probably not be coming back home.
Bobby became more and more bitter as the weeks went by. He stopped going to his AIDS support group at Fairmont Hospital when he realized that all the people who went were newcomers and the old faces that had been in the group when he started were all dead. He had outlived his own support group and no one was left to support him. He once told me, "It's such a drag going to listen to all that bitching and moaning. I heard it all before months ago and they never say anything new. All these fags are just sitting around complaining about how sick they are, like the rest of us don't know anything about it, and gossiping like a bunch of old ladies, joking about who's fucking who. I can't stand to hear it anymore. It's just a goddamn waste of time." Gradually, the CMV retinitis that had robbed his right eye of vision began to affect his left eye and by February, he was completely blind.

One night when I stopped by the house, I was surprised to find no one home. I called Sarah later that night and she told me that Bobby had been admitted to Fairmont's AIDS ward in Wing B. The house would be vacant until new tenants were assigned. A few days later, I gave Sarah a ride to Fairmont to visit Bobby. He was deeply depressed when we arrived, more angry than I'd ever seen him before. He was bored out of his mind and stuck in the deepest, darkest emotional funk you could ever imagine. He hated being blind, he hated being in the hospital, he hated not being able to smoke a joint, not being able to get laid or even get an erection anymore, and most of all, he hated having to control his pain with morphine. He complained that morphine made him feel dumb and made him sleepy. It wasn't anything at all like heroin. All he could do in the hospital was sleep, and sleep was too much like death. Sarah remarked on the irony that they would let him chain-smoke all the cigarettes he could puff, but they wouldn't let him smoke a single joint. I told him I'd bring him a Walkman and some tapes to help him pass the time.

I had a small portable radio and tape player that wasn't exactly a Walkman but was a reasonable facsimile. I didn't use it much anymore, so I decided to loan it to Bobby. It was the least I could do for him now. The night I dropped it by, he was sound asleep. I wanted to show him how to operate it and tell him about the tapes I'd brought, but he was deep in a drug-induced slumber and I didn't think it would be proper or beneficial to rouse him. The tape player was very simple to operate if you could see what you were doing, but since Bobby was now blind, I wanted to help him load a tape and show him how to turn it on and off, rewind a tape and change cassettes. I wasn't sure what kind of music he liked, but I felt I'd made a safe decision. I'd brought him the complete Creedence Clearwater Revival collection, on four cassettes. No matter what your musical taste, I think if you don't like CCR, you just aren't human. I left the tape player and a small paper bag with the tapes on the table by his bed. I told the nurse on duty that I'd left him a present and I'd appreciate it if someone could help him with it. She smiled and said she would see to it that he got to hear the tapes.

Sarah called me only a few days later with the news that Bobby had died. For a long time, I wondered whether or not he ever got to hear the CCR tapes. I wondered if he ever woke up from that deep, death-like sleep he was in the last time I saw him. I wondered what had happened to the tape player and the tapes. Sarah said his parents collected what few belongings he had, and probably ended up with my stuff, thinking it was Bobby's. I didn't know Bobby's parents and wouldn't feel comfortable asking them about the tape player, so I wrote it off. I hope whoever ended up with it appreciated it.

Although they had one thing in common, David Wells was nothing at all like Bobby Homen. As was clear from his last apazine, David met death with dignity, resolve, and a genuine sense of satisfaction that he had lived his life as completely as possible, regretted little, and looked forward to the mysteries that await us all on the other side of that dark veil. He had accepted the situation and coped with it as best he could. Bobby, on the other hand, was pissed off when he died. His life ended in bitterness, anger, pain and despair.

I continue to feel a sense of emptiness inside of me for the space both David and Bobby occupied in my memory. I came into their lives too late to do much of anything to help them and I feel an absurd sense of guilt for my actions and inactions. It's irrational, of course, because I met both of them by chance, when our diverse paths crossed by accident because we knew someone in common. Faye brought David into APA-50, and Sarah needed help taking care of Bobby. I know David appreciated seeing me and talking to me, but I don't know if either he or Bobby ever thought of me as a friend. Of if they did, what kind of a friend I was to them. I know I will always feel that I didn't do enough for them, that I didn't give them what they needed at that critical time when they needed so much.

Silverlake Life: The View From Here is a powerful documentary about two men, companions for 22 years, who are dying of AIDS. It is a bold, unflinching portrait of life and death, love and loss. It is simultaneously beautiful and horrifying, sweetly sentimental in once scene, and coldly clinical in the next. While watching it on PBS a few weeks ago, I thought about David and Bobby. I cried for them and the common pain they shared with Tom Joslin and Mark Massi, the two men profiled in the film. It is the pain of lives ended too soon, of beauty, youth and death juxtaposed too near each other to be entirely proper and right. AIDS is a tragedy on a massive scale that may not be recognized as such for several more years, not until every single family on earth has been affected by it. It is a cold, unfeeling power as impersonal and unstoppable as a flooding river, a raging tornado or a thundering earthquake. It doesn't care who it kills. It is as natural and inevitable as the weather, an early frost, a lingering drought. It doesn't make any sense and maybe it isn't supposed to -- just like this zine. It just is. We live with it, we die with it. I don't think we will ever find a cure for it, we will just have to cope with it. We either scream in anger and wrath and strike furiously in resistance, like Bobby Homen, only to discover our impotence against such a force, or we accept it with peace and philosophical resignation, like David Wells, and discover our hidden strength.

I will miss him terribly.