The above image from David McDiarmid’s Rainbow Aphorisms is from the National Gallery of Victoria and used by permission of Sally Gray, the artistic executor of the estate of David McDiarmid.
I began the sketches for this section of my String Quartet back sometime in the mid-1990s.
On May 29, 1995 I delivered the eulogy below for the artist David McDiarmid. David was a magical and gifted artist, completely of his time in the best sense of that phrase – the time being the late 70’s to the mid 90’s, against the growing backdrop of the AIDS epidemic.
David’s art was graphic. And I mean that in all its implications. He was graphic in that his was line art, illustration and lithography as opposed to painting or even drawing. And he was graphic in that it was explicit, as in sexually graphic. David’s most famous pieces were the safe-sex campaign posters he made for the AIDS Council of NSW in 1992, with their erotic candy-colored figures and pronounced genitalia. David was of a generation that came of age in the first post-Stonewall wave of openly gay sexual liberation in the 1970s, so not surprisingly his artistic output centered on his identity as an urban gay man astride New York, where he lived for an important decade, and Sydney, his home. David’s was always activist art. It was initially gay activism, and then, unavoidably, AIDS activism.
We were all AIDS activists back then. I was a member of ACT UP, the media-savvy direct-action group destined for perpetual infamy on account of its confronting protests. (Think Greenpeace, but for AIDS.) Within a few months of arriving in Australia in Christmas 1990, I was running a ‘buyers club’ importing AIDS drugs unavailable here. It was a stop-gap measure while the activists lobbied hard to get regulatory authorities and pharmaceutical companies to cut the red tape preventing the drugs from being accessible readily and affordably.
David was one of my clients. I brought in ddC for him. I got the drug bootleg through my friend Jim Corti in Los Angeles. Jim is one of the truly monumental but necessarily less famous heroes of the AIDS epidemic and his incredible story in creating an underground supply of life-extending drugs will, I’m sure, be a movie one day.
David and I became much closer after I started collaborating with a doctor named Cassy Workman. Cassy and I together with Lois Johnson from ACT UP formed a radical AIDS treatment center masquerading as an ordinary doctor’s office. We ran our own clinical trials, recorded and analyzed our own data, and devised treatment regimes using drug combinations obtained by lying to the hospitals about what drugs our patients were really on – to circumvent a thinking-inside-the-box limit about how many experimental therapies a person could be on simultaneously.
Our patients were clearly healthier than most. Some of it was due to the stealth combination therapy. Most of it was because we treated AIDS patients like normal people. When a patient showed up with anemia, we didn’t just say “oh, that’s just the HIV causing it, there’s nothing to be done”, like most doctors did. As you would with a non-AIDS patient, we’d see if vitamin B-12 injections helped (they did).
There were enough patients willing to eschew their establishment doctors and walk on the wild side that we had a long waiting list. When David showed up, he shot up to the top of the list. Not because he was a beloved artist in the community, but because he was very sick.
I’ll cut to the eulogy here, because much of the rest of David’s story is told in it, and resume my story about the music afterwards.
Eulogy for David McDiarmid
“The day David died my telephone bill arrived.
It’ll be clear in a minute why I said that.
“I’m speaking today because most of you didn’t know David McDiarmid in the last nine months or so of his life. So I’m going to describe to you David McDiarmid the AIDS patient, and I want to do this because David underwent a startling transformation during those nine months, and I feel maybe the story of David McDiarmid the AIDS patient is a lesson for every person with AIDS in this country.
“David was always terrified of the medical system. He had seen friends die while being treated, he had seen friends emerge from the medical system sicker than ever, and he had repeatedly seen gross incompetence in the medical system, and he had decided not to have anything to do with the medical system.
“Yet when he got sick himself, David’s interaction with the medical system changed. David transformed himself, from a person paralysed by his terror of the medical system, into a person who had learned how to manipulate that same medical system.
“Ironically, the change was caused by the terror itself. David never lost the terror. It was the terror that would make him say, I don’t want that medical procedure, or I don’t want that drug—find me something better. That was the sentiment that characterised his interaction with the medical system: find me something better.
“That change in David was catalysed by his meeting the person who was to become his principal carer: his doctor, Cassy Workman. Cassy’s guerilla medical team included Lois Johnson and myself, which is how David, Cassy, Lois and I got to work together on virtually all aspects of David’s care.
“When David came to see us, he was obviously unwell. It became very apparent that he had some kind of deep fungal infection beyond the capabilities of modern medicine to diagnose definitively. David needed treatment, and he started high dose itraconazole, a strong antifungal drug with few side effects. This worked for a while, but eventually the fungus started growing again and the itraconazole proved insufficient. David needed a stronger drug, and the only stronger drug was amphotericin.
“But David didn’t want to take it—very understandably, because this drug was extremely toxic. David had seen a friend die from kidney failure in hospital while on this drug, and there was no way he was going to take it and there was no way he was going to be hospitalised. So he simply said, I don’t want to take it and I don’t want to be treated in a hospital. So we had to find a way to get David strong teatment outside of hospital.
“If David didn’t want to be treated in a hospital, he could be treated at home. Just because nobody had ever heard of giving a cytotoxic antifungal in a patient’s home doesn’t mean that it couldn’t be done. So we wouldn’t have the full spectrum of medical personnel and equipment on hand in case David developed some bad reaction to the drug. So we’d simply have to make sure David didn’t develop any side effects.
“Finding a new way of giving amphotericin such that David would not get side effects proved to be a bigger challenge. We had heard of a way of injecting a substance called Intralipid together with the amphotericin, and this mixture somehow allowed the body to tolerate the drug. But nobody we asked in Australia knew the recipe for lipid amphotericin. We had been told that somewhere in England someone was using lipid amphotericin with great success. So I called England. And I mean I called England, as in randomly, since I had no idea which hospital was using lipid amphotericin. I started with London—I had the name of a pharmacist at the famous St Mary’s Hospital—and a few referrals later found out that Brighton District Hospital in southern England had experience with lipid amphotericin. Unfortunately the pharmacist that I really needed to talk to was having the day off, so I made the hospital give me her home phone number and I called her at home. And she gave me the recipe and protocol. So armed with the recipe, we now had to get the ingredients. Intralipid was available in Australia, but the supplier was in Toongabbie and it was a Friday and the supplier could not arrange delivery before the weekend and anyway David and us had a meeting with Douglas Crimp so we couldn’t pick up the Intralipid ourselves.
“So we resorted to taxi activism. None of us had much money, so we stole a cab charge, and made an unsuspecting taxi driver go to Toongabbie which is at the very edge of civilisation, and pick up this Intralipid which was getting more precious by the minute, and had it delivered to David’s home. And that is the story of how David got amphotericin treatment, at home and without side effects.
“So the day David died my telephone bill arrived, and there were these phone calls to England, and I was reminded of why I made those phone calls. Not because David said, there’s this pharmacist in England so you must call her, but because David said, what is being offered to me is unacceptable and there must be a better way. David didn’t know what that better way was, but he knew it had to exist and he held his ground until it was found. That’s why I had to call England, because David refused to take regular amphotericin.
“It was the same never-give-in attitude that led to David having intravenous feeding at home. David was, I believe, the first AIDS patient in Australia to be fed intravenously at home. Intravenous feeding is something that’s just not done for people with AIDS for the simple reason that it’s extremely expensive, despite common knowledge that it works. David was losing weight because he couldn’t absorb enough food through his gut. We all knew there had to be a better way of getting nutrition into his body than just eating the food. The liquid protein and carbohydrates were plugged directly into his veins, and that’s how he put on lots of weight. That’s kinda why David in that casket over there doesn’t look emaciated. David didn’t die with malnutrition and wasting like a lot of people with AIDS are forced to.
“Most of you probably didn’t know that David, when he finally needed the type of treatment that only a fully-fledged hospital could provide, got treated in Newcastle and not in Sydney. I want you to know why. When David was diagnosed with lymphoma—the illness that finally killed him—he got his chemotherapy in Newcastle because he couldn’t get that quality medical care in Sydney. In Newcastle he did not have to wait around in the Casualty Ward in order to be admitted, like you would in Sydney hospitals. He had a doctor who was not simultaneously treating scores of other inpatients, like you have in Sydney hospitals. He had a doctor who was able—due to lack of overwork—to diligently follow his response to treatment, and be able to monitor things like his sudden increases in calcium levels. And when the chemotherapy made David’s bone marrow very, very sick, this hospital was able to provide G-CSF, a drug to rejuvenate the bone marrow. Without G-CSF, David would very likely not have gone into remission and wouldn’t have had those precious few weeks in which he didn’t have lymphoma, when he was feeling pretty good and was able to walk to town and pick up his new laser printer. Those precious few weeks before the lymphoma came back meant a lot to David. But he wouldn’t have had those weeks if he had been treated in Sydney, because in Sydney they rarely give you G-CSF. There are so many patients in Sydney hospitals needing G-CSF that hospital administrators would rather convince you that you don’t need it, so that you doesn’t blow out their drug budget.
“In Sydney doctors are overexposed to AIDS to the point of being blasé about it, and because there are so many patients, hospital budgets are stretched to the point of breaking. I don’t know what the solution is, but like David, I won’t let my not knowing the solution stop me from thinking there must be a solution, and there must be a better way.
“David’s medical care was unique, and that’s why he was able to live as long as he did and with the quality of life that he possessed. David’s medical care was unique because lots of things came together to make it unique: his doctor, his personality, the collective attitude of his carers. But could his medical care have been even better? Conceivably yes. Not because his care givers didn’t try hard enough, because they sure as hell did—even to the point of risking imprisonment for stealing an experimental AIDS drug for David. But you can’t help thinking, what if we did manage to obtain that impossible drug? Who knows what would have happened if David managed to get liposomal drugs to treat his lymphoma? Who knows what would have happended David obtained a couple of protease inhibitors?
“Earlier this year David and I appeared on television to fight for the drug oral ganciclovir. That was David’s first television appearance as an AIDS activist, and he used the word fuck. I was so proud of him. Of course SBS dutifully edited out the offending terminology. I played the role of angry AIDS activist demanding this drug that could save the eyesight of thousands of people with AIDS, and David played the role of the victim who badly needed this drug but was told by the company that they would only release drugs for life-threatening situations and that he wouldn’t be given the drug because losing your eyesight was not life-threatening. David argued that losing his eyesight was life-threatening, because he was an artist and his eyesight was his sole means of making a living.
“David was on his way to being a fine political activist, except he got sick and died. If we want to see David’s work continue, then we continue fighting for the same things that he fought for: we sharpen our quills and paintbrushes so our art defends lesbians and gay men in this hostile world, we crusade for the eradication of bad taste, and we fight for like hell so that people with AIDS will live longer and with a quality of life that makes life worth living.”
That was 1995.
During those heady days of life-and-death activism, I sketched a lot of music without fully composing much of it. I used to joke that I specialized in unfinished works. I’ve since realized that sketching was my way of keeping a diary. A diary of feelings, rather than events. This piece is realized from sketches I made from that time.
Since Cassy uncompromisingly gave her everything to every patient in front of her in every moment, it meant unpredictably long periods of waiting in the doctor’s office. A big part of my friendship with David came from talking to him while he waited his turn to see Cassy. He’d come with hilarious gifts for me, such as a compilation video tape of cartoons (eg. Son of Stimpy) and 1950s bodybuilding and soft porn footage. He also gave me a compilation cassette tape of campy songs, which I eventually understood was either a prototype or an offshoot of his “Toxic Queen presents …” and “Funeral Hits of the 90s” projects.
Humor – actually, sarcasm and bitchiness – was a key ingredient in David’s art. His works had titles like “Lifetimes are not what they used to be”, “Darling, you make me sick”, “AIDS victim dies alone – family profits” and “It’s my party and I’ll die if I want to, sugar.”
As much as David thought like an activist artist, his works were really for the converted, I daresay. As much as he wanted to change the misunderstanding and prejudice against people with AIDS – and many excellent commentators like Ted Gott and Leah Domanski like to say that he did – his artwork was too confrontational to do that for the general public. What it did do, and this is no small matter, was provide moral sustenance for those in the community whose work did change something tangible of the world.
My music here is nothing like David’s art. None of David’s humor has shown up. So that’s how I know this piece is not a tribute to him, though he’s in it. It’s more a record of the times we both inhabited, and about the stars we visited in our minds while we were all coping with the times. Instead there’s a debonairness to the music, a sophistication that’s shown up as, interestingly, jazz. I don’t know if David liked jazz, but this piece has great chunks of it. David lived a lush life. I think that’s where the jazz comes from, from Billy Strayhorn and the lush life.
There’s a moment where the music slips effortlessly from the jazz of Nelson Riddle to the post-romanticism of Richard Strauss. This fascinated me when it happened. Strauss often comes into the picture when I think of friends from that period. After my friend Bruce Brown died, I was packing his belongings to send to his mother and to his old harpsichord teacher. While packing his music collection, I found a recording of Strauss’ Four Last Songs. It was the Jessye Norman performance. I took it out and started playing it for no reason. It was the first time I, at the age of 26 in 1993, had heard the Four Last Songs. And I played it over and over as I packed.
In my sketches was a tender melody from Mozart’s Sinfonia Concertante for violin, viola and orchestra. It occurs in the slow movement, only twice and very briefly, as the closing idea of each of the movement’s two sections. Mozart could be so profligate with his beautiful melodies, such was their abundance to him. Back then, something in me, acutely aware of the fragility of existence, couldn’t bear to see a thing so beautiful be given just a fleeting moment. I wanted to prolong its life. Tinged with my adoration of Morton Feldman’s hypnotic, ghostly music, it now forms the long final section of the piece.
David left me a gift just before he died. It was a gimmicky coupon he’d made, entitling me to have any artwork of his I wanted after he died. I never redeemed it and still have it. Lots of people have artwork by David McDiarmid but not many have a coupon he made to express his friendship.
The title comes from the name of an exhibition of AIDS-related art in 1994 at the National Gallery of Australia, curated by David’s friend and champion Ted Gott. I – or to be more precise, my blood – ended up being part of the exhibition in a work created by my friend and fellow activist Tony Carden. But that’s a story for another time.
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