Paul Reed: writer; AIDS novelist; diarist
Paul Reed was best known as one of the first major writers of HIV/AIDS-themed literature in the U.S. In The Q Journal: A Treatment Diary, he shared his thoughts on life, death, and living with AIDS.
According to writer Mark Isola, The Q Journal records Reed’s life from March to October 1990. Having buried his lover Tom Gates in January, 1990, Reed recorded his grief and the facts of his own declining health, as he participated in an experimental treatment study of Compound Q.
“Reed’s second journal, The Savage Garden (1994), was self-published. It records Reed’s life from June 1991 to June 1992, as he transitioned physically and psychologically from being a person dying of AIDS to become a person living with AIDS.”
“Reed’s third journal, The Redwood Diary: A Journal, recorded his life from April 1995 to March 1996. During that year, Reed retreated to a cabin in the California Redwoods to write a novel only to find his health rapidly deteriorating. Much of The Redwood Diary reads like a life review, as Reed faces his mortality only to find his health restored, thanks to the development of protease inhibitors.”
One can learn much more more about Reed’s fantastic literary life by reading Isola’s full essay located here.
Writing and reading about AIDS tears at my heart (NOTE: this first appeared in Edge Magazine on January 15, 1992). Each time a new book about the health crisis appears, the ache begins again, and I want to find someone — a writer with a unique sense of himself and our times — who will somehow Explain It All in a Way Which Will Finally Make Sense of the Insanity.
Except for Randy Shilts, I haven’t had that experience. John Preston comes closest, I think, of all the living gay writers in being level-headed; Paul Monette embroiders a horrifically accurate portrait of our life and times. Periodically, a diary or essay or or novel will emerge which almost rings true (I’m very fond of the short story anthology, The Darker Proof).
One book which seriously deserves a much wider readership is Paul Reed’s The Q Journal: A Treatment Diary (used copies are available from Amazon and other booksellers) [originally published by Celestial Arts, $8.95, softcover]. The reviews have been good to excellent, and I think the blurb from Randy Shilts that appears on the book’s cover sums its value up neatly: “The personal, the political and the scientific all converge in this wrenching account.”
This assertion is doubly true for me: Paul Reed is my ex-lover’s ex-lover’s ex-lover (which in heterosexual parlance would be something like my ex-spouse’s ex-spouse’s ex-husband) — I think). Reading through The Q Journal about the death of his lover and its impact brings up so many memories I have of failed relationships, loves lost through disease or death, or time itself.
To be a gay man and in your 30’s and to make sense of this crazy decade of death requires a degree of introspection which, frankly, most people lack, especially men of my generation. To describe AIDS as a novelist can wrench the soul. To meditate on a subject as bleak as AIDS and record the act of peering into one’s soul strips away the maudlin and melancholy and forces the writer to get honest and distill the life force.
In March of 1990, Paul Reed’s life hit the wall. He was forced to analyze his options of treatment or risk descent into the disease. AZT for him was “rat poison.” His lover had just died from the disease. His own future looked bleak. What to do?
The Q Journal: A Treatment Journal records his thoughts and feelings as he undergoes an experimental treatment (Compound Q) and manages to slowly reassemble an almost shattered life. Its value for gay readers is its invitation to dissemble so much of the anger and heartache of our times in a civilized, sobering way.
As you read through the interview which follows, dear reader, note well Reed’s invitation to look within the soul for regeneration and serenity. [Reed has even written a tome entitled Serenity, but then again, he’s no priggish gay saint. Under the nom de plume of “Max Exander,” he’s twirled out erotic titles like SafeStud and ManSex].
Reed is no mere memorialist of the heartbreak of chemotherapy but a chronicler of the pain and sorrow too often omitted from writing about gay life, or overstated in a lachrymose rant overcome by self-pity. His diary will force you to think hard about life, death, sex, and joy. This 35-year-old knows things about himself and our lives which few have bothered to register in any way at all.
Have you gone through periods of self-pity because of your ARC/HIV-positive status? If so, what’s the cure for that feeling?
My first inclination is to say no, I’m not the self-pitying type. But Then I think of Serenity, now in its second printing, and I realize that what I might not have myself characterized as self-pity, but justifiable depression, did, in fact, contain many elements of self-pity.
It has been one of the greatest challenges of my life, ever since I was a child, to overcome feelings of worthlessness — whether it was because I was lousy at sports, or disinterested in girls, or facing an early death that leaves me looking at those 35 years as amounting to absolutely nothing.
The cure for self-pity? For me, the best way out of self-pity is to “count my blessings.” I have a roof over my head, I have health insurance, I didn’t die of starvation in some distant part of the globe when I was 8 years old, the fact that I have been able to live in the relative luxury of the Western world, been given an education … And the fact that I have been loved and able to love, [knowing that’s] really what it’s all about, finally. Had I never known love, had I never been silent in the deep embrace of relationships, I might be a very different person today, cynical, morose, bitter.
How has your health changed, after you concluded writing The Q Journal?
It’s gotten better and better. Don’t ask me to elucidate, because I’m not sure I can do a very good job of it, but something about the Compound Q treatments truly stabilized my health and arrested the progress of the infection. My counts have either remained steady or have improved slightly …
Some of this I owe to emerging from the trauma of grief — which wrecked my health. Some of it I owe to adopting a new life in which I have decided to live fully and take risks. There’s also nothing to fear, so why not live it up? This kind of attitude actually stimulates the immune system, I suspect. And some of it has to do with my stopping taking the fucking poisonous medications AZT and DDC.
What do you think will happen to you? Are you hopeful a cure will be found or are you pessimistic?
I hate questions like that. Reporters always ask them. Basically, that question is, ‘Do you think you’re going to die soon, horribly painfully?’ And, yes, I suppose I do. I am not hopeful that a cure will be found, because what we know of the immune system and its destruction by HIV paints a ghastly picture. And because — more importantly— the governmental and medical institutions in this country are fucked up. They want us to die. Don’t ever forget that. It’s a gruesome painful fact of life these days that AIDS probably could have been largely prevented, had the cowards at the CDC (Centers for Disease Control) really sounded the alarm early, and had our so-called national leadership really been leaders, we probably could have found effective treatments by now (1992).
But the way it stands now. I have no faith or hope in any salvation beyond myself. Those scumbags in Washington have no interest whatsoever in saving the life of fags, druggies, coloreds, etc. In fact, it is in the interests of the mainstream to let us die off, get rid of the troublesome, irksome queers. Don’t ever fool yourself that we are in any way respected, admired, cared about. We’re hated and reviled by a system based on pure self-interest and greed.
In a way, that’s fine with me. I would not want to be accepted or admired by the likes of these people. The fact that they hate me clearly affirms that I’m doing something right.
As for medical breakthroughs, if some of the new compounds work out, great! I’ll be the first in line to pump them into my own bloodstream. But in the meantime, I’ll rely on my own path, which means I’ll I’ll live my life as fully as I can, do what I have to do, continue to turn towards the inner light, and get off this insane ride when it’s time to do so.
But to answer the question in a different yet equally honest way, I’d have to say that what I think will happen to me next is this: I’ll continue to enjoy a life filled with love in all its dimensions — spiritual, physical, emotional — and I’ll continue to recognize and nurture everything that makes me feel vibrantly alive, anything that makes me resonate inwardly with the experiences of the physical and spiritual worlds.
Eventually, I suspect the immune disorder will worsen, and I’ll face illnesses and difficulty and prepare myself to move on to whatever comes next. Pain and madness are not particularly inviting prospects, but aside from sudden death, we all face exactly the same thing. It’s rather tormenting and exciting at the same time. What more can I say?
Have you continued to maintain a diary? Do you recommend such habits of self-introspection? Recommend them for non-writers, too? Why? Why not?
Yes, I am working on a new journal for publication. Journal work has been extremely valuable to me for many years, and I am a great reader of journals — Sarton, Rorem, and now Cheever.
I wholeheartedly recommend habits of self-introspection. Who was it who said, “The unexamined life is not worth living“?” That’s how I feel. It works well with my neuroses, too. to be constantly turned inward.
But self-introspection need not be done only in writing. It can be explored in art, meditation, analysis, whatever. For me, the writing of journals for publication is an attempt to force my neurotic inward tendencies outward, an effort to make the social connection I have always found so difficult to make.
Have you come to terms over your grief? What helped you the most? The least?
Coming to terms with grief of the midst of the AIDS epidemic means accepting grief as an unavoidable part of life. It means accepting death for what it is, enlightening ourselves beyond the pathetic fearfulness of this culture with regard to death, so that we can see that life is always changing, always evolving, never static. One of life’s changes is death. With change comes loss — always loss — and we simply must understand this.
Now this acceptance of change, of death, and the letting go of the dread of death, this doesn’t mean we become utterly cavalier about it all, hidebound in some callous shoulder shrug of non-caring. Quite the reverse. We learn to care deeply, for everyone and everything that we have, when we have it. We can’t wait for some other day, or some other person, or something else, because accepting change means that we understand from the outset that it will all change, all go away. We will lose everyone and everything. And in knowing that, we gain the whole world, the universe, really! That’s just the way it is.
What was most helpful to me in dealing with grief was to learn about death. I musty have read a dozen books on death itself and another dozen on life after death. I simply had to know what death was. When I found out — when I’d “learned death” — I was able to see that it was, in most ways, no big deal. This allows the grief to flow freely — it’s not a natural process. Grief is our natural reaction to change, to loss. It is to be accepted and lived through just as we accept and live through love, joy, sadness, poverty, riches.
This business in our culture, of trying to surmount every obstacle, to fix every bad mood, to be happy, happy, happy all the time, well, it’s rubbish. And it’s a surefire way to miss life, or, rather, have a living death.
Do you regret any of your sexual history?
Hell no. It felt great, it continues ti feel great and always will. Sex is marvelous fun, and what a rich and varied thing it is — it can be pure physical fun, or an expression of love, or a mechanism for transcendence, or a spiritual tool, or a token of friendship, or a commodity for profit, or a stress manager, and on and on.
I’m a man who has always been strongly led by his sexual nature, and it has given me a great deal — transcendence, love, the will to live. By pushing fearlessly — some would say recklessly, I suspect — into the next new sexual event. I have discovered worlds upon worlds of physical experience that have resonated with my spirit in ways I might never have imagined otherwise.
Has your sex drive diminished? Why? HIV? Age?
My sex drive continues at the same frantic pace it always has. Being HIV positive has only reinforced my belief that sex is important, because, since sex is one of life’s greatest gifts, if my life is to be foreshortened by AIDS, then I want as much as I need.
I don’t understand this question of age. At 35, I feel more at my sexual peak than ever. My sexual experience provides me with skills that are a fine foundation for further exploration. It’s nice to be able to keep a hard- for a long time, not to pop off as soon as someone just touches me, which is what sex at 15 is all about. Sex in your 20’s is about discovering and exploring your tastes. By the time you reach your 30s, you’re well-versed and raring to go.
And you know sex for what it is — all that it can be — and you’re not so driven to use it without being aware of what you’re doing. It’s a great skill to know that, for example, tonight I will use sex to release stress, or that last week I used sex to achieve a transcendental high, or that next month I intend to use sex to give and receive affection.
Have you ever wanted to move because of being HIV positive?
Well, yes, I used to fantasize about moving to Hawaii, to find myself a perfect spot in paradise in which to live out my final days. But one thing that all HIV-positive people know is that you get stuck in the medical and bureaucratic system wherever you happen to find yourself at the time of diagnosis. I am extremely “lucky” to be “trapped” by HIV in San Francisco, since it’s the best place for medical care, and since, not accidentally, it also happens to be the most beautiful spot on earth.
Has Compound Q worked? Why? Would you recommend it? What medications are you taking? Why?
As I said before, Compound Q did something to stabilize my immune system, probably because it eliminates a vast reservoir of the virus — viruses that would, about now, have been erupting from infected cells and moving on to infect healthy cells. By killing them off during my treatments, they are simply not in my body right now. This buys time, I think. And I admit that this is theorizing at its worst.
Perhaps Compound Q worked for me simply because I believed it would — the placebo effect. I don’t really know. The more important point is that suffering through those damned treatments taught me that nobody is in charge of my health — my life, my energy — except myself.
I don’t know if I would recommend Q to others. It depends. Everyone’s immune systems are so individual, their cases so specifically personal, that it’s hard to say. Learn everything you can about it before deciding to try it. It’s not an easy treatment. It may even be worthless. I don’t know. I believe it helped me, and I might use it again in the future if my immune system went haywire again.
Right now I’m not taking any conventional medical treatments. Even those I used low-dose AZT for nearly four years, and recently tried low-dosed DDC in combo with AZT, I have always had my doubts about this rat poison. Unpopular as this may be, I suspect that AZT and the like are useful in early stage infection, when the body can handle the toxicities. But it’s got to be used sparingly, I always started and stopped, started and stopped, having to “zap” the virus and then let my body recover. Since I’m still alive and fucking, it must have worked for me.
But after so long on and off AZT, I began to feel that it was nearing the danger zone, where the risk to benefit ratio was narrow. So I stopped all that arsenic and started Chinese herbs and acupuncture, along with an attempt at exercise, good nutrition, and so on. So far so good.
Is there a spiritual dimension to Paul Reed? Should there be? Do you find solace in meditation? Am I wrong in assuming that there’s anything to seek solace from?
Of course there’s a spiritual dimension to me. There’s a spiritual dimension to everyone. We are all essentially spirit. This organic composite of our bodies — cells, tissues, fluids, wastes — they are vehicles for consciousness.
But for heaven’s sake, they don’t even work that well to begin with! Stumbling about on two feet, being passed out at least a third of the time, headaches, and our poorly constructed lower backs — what a mess. But consciousness — spirit — seeks expansion. And on the physical plane, as the “eyes and ears of the planet,” as Joseph Campbell put it, these bodies serve as vehicles.
At the risk of sounding terse, of course, there should be a spiritual dimension. It isn’t even a question of should. It just is.
There’s plenty to seek solace from. The tribulations of life, for one. Acceptance of change and loss and death and grief includes seeking solace. It’s one way to achieve the balance necessary to go on living. And I suppose meditation offers solace. It’s relaxing. Meditation tends, for me, to be another tool for looking inward, for discovering the issues wrapped around the inner core.
Do you think you’ll ever be able to love someone again? Like Tom Gates?
In fact I do love someone again, but I have to admit that it was a torturous process even to admit myself that what I was feeling was, in fact, love. When you’ve gone all the way with someone, clear out to the brink of death and beyond, when your lover has died in your arms, it can be enormously difficult to let yourself love again. The fear of loss can be stifling.
But here I was, this last year, in the midst of seeking intimacy with someone, but not realizing it was intimacy I was seeking. Luckily, he was not smitten in the same way, but cares and loves deeply in his own way, is ever faithful as an intimate friend, and allows me to wallow around in my struggle simply to recognize, let alone accept, the intimacy and devoted friendship he offers.
Since I’ve finally recognized that this beautiful boy has, in fact, become an intimate — not a boyfriend or lover — the struggle has been to let myself accept this intimacy, on its own terms, and to enjoy it and allow myself to give intimacy without the trappings of a conventional romantic relationship form.
At this point it is becoming less of a struggle and more of a joy to accept all this care and love and attention. I still keep a wall around me, but by working with spiritual techniques and sheer persistence. I’m beginning to find the safe place for love again, and to explore the possibilities for romantic intimacy as well.
I am sure I will never love someone again like Tom. What we had was unique to the two of us. But we also did the usual lover form — living together, doing everything together, attempting monogamy, etc. This form doesn’t interest me anymore. I'm truly ready to expand on this newfound mode of accepting and nurturing love and intimacy for its own sake, for what it can give me, and for what I can give, being sure to meet my needs. Love is sweet.
I have a friend in West Hollywood who believes that he does not want to be treated at all for HIV. His point is, why not let the disease take its natural course? Why even pursue medication for what is perceived as a terminal illness? In other words, why prolong the agony? How do you react to people who espouse such a philosophy?
I react with much more acceptance and compassion than I used to, because for too long I preached that everyone simply had to get tested and seek treatment at the earliest possible time, in order to live as long as possible. For me, that remains a viable position. But for someone else, their path may be very different. They may be unable to live with a chronic infection, the emotional toll may be too high.
I don’t really feel that it is, though. And the prices one pays for not knowing — the incessant worrying, as well as the undeniable social isolation — seems too high. And the fact is, the quality of life can be improved through good medication, forget the longevity question. If popping a Septra can prevent the painful ordeal of pneumocystis pneumonia, why not? Why invite needless suffering?
Some people still feel that the only way to get AIDS is to be caught by surprise. I don’t get it. Why accept the incorrect perception that HIV is terminal? Of course, I know how many have died of it, of course I see that HIV infection leading to AIDS is a terminal illness. But there is another fact that everyone continues to overlook — that many more people are still living with HIV than have ever died from it. What does that mean? I think it means that despite all the illness and death we have seen, it is still not a valid conclusion to say that everyone with HIV is going to die of AIDS. Maybe that’s true, maybe it isn’t. Time will tell. But to beckon the darkness, to turn your head against the truth, seems an odd response to me. HIV infection needs to be dealt with as another part of one’s life. You don’t say, “I’m never going to the dentist because if I have a cavity, eventually my tooth might fall out.” So why avoid working with this aspect of your physical health?
A fair number of HIV-positive people deal with guilt owing to the hyper-promiscuity and or alcohol/drug abuse in their past. Their guilt takes the form of, “If only I hadn’t done those things, I wouldn’t be confronting a terminal illness today.” How would you counsel such people?
It’s like the Baby Jane line we all know so well: “But you are, Blanche.” I don’t mean to be flippant, but who has time for guilt? Time for self-examination, certainly, to be sure one is conducting one’s life in a responsible way today, with the commitment to do your best for tomorrow, too. But to look at yesterday and say, if only — it’s a waste of time. Unless, of course, by scrutinizing the past one can find the release and strength necessary to make behavioral changes today.
By the way, I don’t believe in that word, promiscuity, and I certainly don’t believe in hyper-promiscuity. Wherever did you find such a word? The concept of promiscuity is a guilt-laden one, implying there is some standard of sexual conduct by which we should all measure ourselves. What hogwash. Do what you want, do it lovingly and responsibly. What’s done is done, whether it was responsibly done or not.
I’m not answering this adequately, am I? The thing is, I just don’t carry around that much guilt, never have. Perhaps I have a criminal makeup. I don’t know, but I’ve always enjoyed my sins so much that any guilt seemed nothing more than a bit of gas after a ravishing meal. So what?
AFTERWARD
Re-editing and re-reading this feature many years after it was first published in Edge Magazine (Jan. 15, 1992) has been a difficult and painful experience.
It’s like being in a time capsule and, suddenly, the year is 1992, and I am living in the middle of the cruelest experience of my generation, the AIDS pandemic, a period so dark and filled with so much death, it is still almost unspeakable.
It is important to remember those times and not to let them go unspoken and forgotten. I cannot think of a braver voice than Paul Reed’s (May 28, 1956 — January 28, 2002).
His final work, a compilation of his Max Evander writings titled Swollen, was published shortly after he died.
