This story is about a man named Jose and that which makes life worthwhile: friendship; friendship and the deep, abiding, even surreal permutations of love that true friendship can engender. Here’s the picture:
Some will read this story and think it’s about me, although that’s not what I set out to write; for me this story is about Jose. Some will think the story is about death and dying, that it’s about AIDS before drug cocktails made it a chronic but not fatal condition, and those things are certainly in here. Some will even think this story is about my need to preach to the choir, and as for that I can’t say, except that it’s true I don’t have a problem voicing my feelings about friendship, gender bending, gay men, or HIV/AIDS. Because I write about my friendship with one gay man in particular, Jose Sequeira, and about my friendships with gay men in general, this story is inevitably about AIDS. Jose died because of it. Most of the friends I had when Jose was in my life died because of it. And let’s get one thing straight right now: you don’t die of AIDS. You die from the complications that come from living with a compromised immune system. These complications run the gamut from opportunistic infections that lodge in the physical body to psychological infections that permeate our social and religious bodies, but that’s not what this story is about either, any more than disease is about punishment or redemption. Sometimes I think this story is simply about the difference between that which is considered normal and acceptable and that which is considered shocking. I laughed when Jose said I was unshockable and I never asked what he meant. Now I think maybe I should have. Now I think maybe this is not such a good thing, being unshockable, being someone who accepts individuals and behaviors considered outside the norm. In the ten years since Jose’s death, as I talked about my friend and told the twin stories of our friendship and his death, the transformation these afforded me, the price they exacted, I found myself shocking people all over the place, and I wasn’t entirely certain why.
What I am certain of is this. When I met Jose, I was a stranger in my own life, and unaware that anything was amiss. And I am also certain of this. While I was born into the mainstream of life, I am not of it, and although I understood what words I was expected to speak and what path I was expected to walk, I could not make the middle way -- the expected path through life -- my own. Like a gay man, I can look like anyone else and I can sound like anyone else, but my internal experience has always been that of an outsider, someone who knows what it means to be invisible to others and lost to myself, and so it should come as no surprise that, while I’m hopelessly heterosexual, gay men have gravitated to me. I haven’t missed being in the mainstream, the path that even Dante called the straight way; I knew where it was, and I knew that I preferred life closer to the edge of things. This perspective worked just fine for me, until Jose died.
When Jose died in the mid ‘90s, gay men were the scapegoat for AIDS, and like any proper scapegoat they were heaped with the sins and secrets of society and sent into the woods to be devoured. Jose’s last year of life was a journey marked by this savagery. It was also a journey marked by love, the beauty of love unexpected, the grace of love unconditioned. At the end this journey with Jose, I remember waking to an oddly familiar sensation, one of being in that “dark wood where the straight way was lost.” This dark, lost place described by Dante is one I have known on and off since childhood, only this time, the experience was a little different. Through my friendship with Jose, I had gained a true sense of myself and found my place in the world. Or so I thought. But I’d wandered out into the woods with the goat and, like that scapegoat, I was not expected to walk back out. Family and friends, peers even, looked me as if I were a stranger, a lost soul, someone to be regarded with a potent mixture of awe, curiosity, and fear. Very few wished to hear the tale I had to tell.
Since the teller of any tale must be trusted to be believed, and since the story I have to tell is for everyone, from those treading the straight way though life to the boys in the band and even those who feel themselves lost in some dark place, let me begin by telling a little bit about myself, because this story is also for me. Simply put, I need to tell it. By the time I’ve finished telling it, I want the love story that was Jose’s life to be simply one of the many facets of gay life, the life that Jose used to kid me about by saying, “Dina, everybody knows that.”
Like Jose, I was trained as a fiction writer, so it’s not unusual that I should try writing a novel -- an impossible task. I don’t write fiction anymore. My friendship with Jose made life more interesting by far. What I had managed to accomplish, however, was written the year before Jose’s death, and so when I came across this bit of fiction while writing about Jose, I was surprised to see myself, the very self I had become over the intervening decade, a decade during which I had also become the same age as the main character, a woman who had just lost the person she loved most in the world:
I knew nothing of death when I wrote this, and yet unwittingly I had described the very experience I would have a year later when Jose stopped breathing, a sensation in mind and body hovering somewhere between the nuclear and the sublime. All but one detail of that scene was true; even when I thought I was writing fiction, I had been recording life. My father isn’t dead, of course, he wasn’t dead when I wrote that opening scene to my would-be novel, and he hasn’t died since, but he did die, at least I thought he did. It happened right before my 4th birthday. Thirty years later when Jose died, my father died all over again; buried memories began to surface like hungry ghosts and, haunted by my own forgotten past, I began to grieve for the first time, to mourn for what I had lost decades before my friendship with Jose had even begun.
It happened like this.
In the winter of 1963 President Kennedy was shot and killed, which I don’t remember, but some time after Christmas that year I flew with my parents to a little town in Oregon to attend my great grandfather's funeral, which I recall very clearly. After the funeral my father, a soldier, left without us and did not return. When I asked where he went, my mother gave the same answer she gave when I'd asked where grandpa went: “Away. And he’s never coming back.” This was my first experience of death. It came at a time in America when everyone seemed to be losing fathers and grandfathers, a time when people watched in shock and horror as the complications of the Viet Nam war and civil unrest murdered the men we had built our lives around. But war, protest, assassination, divorce, these were not words spoken in my mother’s family. Few words were spoken that did not revolve around work or meals or any of another thousand daily tasks, and so it was in the rhythm of daily life that I learned that people I loved could go away and never come back.
Allowed neither to question the parameters of my world nor to grieve, I did what so many do: I made the pain disappear by refusing to let it show. Problem was, who I was and how I felt wasn’t just hidden from the world, it was hidden from myself as well. By the time I met Jose, I was a stranger in my own life. I just didn’t know it. Growing up I was an outwardly compliant, intelligent, even eager child, but my inner life spun on a knife-edge. Perhaps I’d be considered just an average kid today. Maybe I was even then. In any case, I grew up in a world where children didn’t have tempers and teenagers couldn’t have depressions. They had attitudes. For me, puberty heralded not only hormones but also head-slamming headaches and suicidal ideation, but the only words I’d learned to describe my experience were the curse, bitch, and much worse by far, “Baby!” It was a childhood guaranteed to produce the woman I became, someone for whom every relationship -- every close friendship, every sexual encounter -- was an opportunity to suck at a breast that had run dry long before I was born. My composed exterior masked an interior that leaked out only through my taste in music: fast, hard, screaming-loud. No one was listening.
My family didn’t fail to love me. They just failed to see me. From family I learned the pain of saying not what I felt but what was expected, the punishment of asking not for what I needed but for what was possible. I can’t say that meeting Jose changed all this, we were friends for only four years before he died, but I can say this: Jose’s friendship marked the first time I loved anyone without making the child’s bargain I had come to understand relationships to be. It wasn’t necessarily what I had with Jose as much as what I didn’t: I didn’t have to fantasize the impossible; I didn’t have to take what was given but secretly wish for something else, something more; I didn’t have to second-guess what the other person was feeling before I decided how I felt; and I didn’t have to be anyone but myself. Through Jose’s friendship I experienced the joy of being seen, and for the first time I knew the freedom of being loved for who I was, instead of in spite of it.
Jose and I loved books, we loved writing, we loved movies, and we loved each other. And although Jose was gay, brown, and from a privileged landed class who lost everything to communism and a subsequent emigration to the US, while I was straight, white, and a third-generation American from a working class family that raised its kids to think they were middle class, inside we were alike. And it was from the inside that Jose and I saw each other. How we differed was mainly in the way others saw us. Jose had the common touch: he could say anything to anyone about anything. He could talk about his novel, his travels, himself; about being gay, being ill with the effects of HIV, being on disability; about being from Nicaragua, not Mexico, becoming a Sandinista to teach the poor to read, and then learning that the Sandinistas executed homosexuals. No matter what he said, everybody loved Jose. Me, I am nervous about sharing who I am and how I feel, and when I do, others tend to have strong reactions. Just as it was with my family, these aren’t necessarily positive reactions.
Upon viewing the stars as they mapped themselves out at my birth, an astrologer friend once told me that I bear something called a grand cross. Some might call this a fancy way of saying I have a big chip on my shoulder. A grand cross, I am told, indicates someone who is sure to bristle when demands are made to reveal emotion, someone who is inclined to be in a near-constant state of rebellion, a willful person who must do things her own way and who puts up defenses at the first sign of being challenged. For such a one as this, tolerance must be a feature, not an accident, of one’s behavior. I often find myself wishing I were more like my father, a man who remains proud of me no matter how many knots I tie myself into or how many time I must say I screwed up, again; a man who somehow knows that each person is always doing his or her best, no matter how piss poor the results look.
The year Jose activated his Care Team, which is what he called the circle of friends who helped him as his health declined, I was the administrator at a place called The Writing Center, a tutoring facility at the university where Jose and I first met. The position was temporary, and transitional, a nine-month appointment while a search was conducted for a Ph.D. to run the place, but the offer had come after three frustrating years of trying to cobble together work as a writer, an editor, a tutor, anything in my field, and since I had trained at The Writing Center as a grad student, the job seemed a shoo-in. I accepted in anticipation of experiencing some much needed success. See, it wasn’t just my career that wasn’t working at that time. My friendship with Jose was one of the few bright spots in a life that wasn’t working in so many ways, including in my marriage. I could say that I felt like a failure, but I never slowed down long enough to feel much of anything. Except intolerance. I felt that often enough, though I wouldn’t have believed it if you had told me at the time. I thought the way I felt was just fine: I was intolerant of intolerance, intolerant of others who were intolerant. I have come to understand that this is my biggest character flaw. I’ve tried -- I’m still trying -- to be accepting of faults, to keep in mind the fact that we all learn our lessons in our own way, at our own pace, in our own time -- I want to be tolerant, I do. All the same, I was quick to judge human failings then, and I am quick to see them now. Jose’s mother, Sonia, may have seen me as an angel because I loved and cared for her son as he died, but too many of the graduate assistants who worked at the Writing Center during the same time period would paint only the flip-side, the portrait of a woman with exacting and inflexible standards, someone unyielding. That year at the university was not the simple success I had hoped for. Nothing was.
Here’s a picture of me when I was caring for Jose, just a month before he died:
Back then, I was burning a good deal of the time: at work, in my marriage, over the actions of anyone whose level of commitment didn’t match my own. And every time I tried and failed to figure out why I couldn’t make my life work, I burned. Because I did not speak these feelings aloud, I prefer to think that no one noticed. Then again, before Cliff and I got into marriage counseling, we thought we were doing a good job of covering our feelings. Turns out no one could stand to be in the same room with us.
At work, my husband was my office assistant. And about the same time that Jose’s Care Team was struggling to hold together, my husband had come to realize his unwitting complicity in a power struggle that affected both my standing in the department and my ability to perform my job, a situation from which there was no extricating myself, and he had apologized. But there are some things that once you have allowed them to be done cannot be taken back or undone. They just have to be lived with. At work my psyche had begun to react to the cumulative effect of eight months of disrespect and helplessness the way my body might have reacted to eight months of Twinkies and Easy Cheez: my gut burned with a sickness that was my own fault. I had taken a position that carried responsibility but no authority, and when the graduate assistants working under me rebelled, I responded by gripping the reins even tighter. It’s what you do when you know you’re losing control and you’re out of options. Anyway, it was what I did. In retrospect, I can see that I took responsibility for problems that were mostly not of my own making. It was easier for me to believe I was in control and exercising that control badly than to admit I had no control at all, easier to accept responsibility for problems I had not created than to examine how poorly equipped I was to be an administrator: willful, rebellious, certain my way was right.
But with Jose, even when I didn’t know what to do, which was all the time in the final months of his life, I knew what to do: I loved him. That’s how I remember it, anyhow, but I am learning that memory is a strange and sometimes over-flexible thing. It’s odd what the mind runs together and calls memory. Sometimes I think we need a different word; what we call “memory” is more often an attempt at understanding than a simple recalling of the events. Going through my I Ching workbook as I wrote about Jose, I found an entry with his name on it. I had posed this question: What may I expect of and from my friendship with Jose over the next six months, especially in terms of demands on my time and energy and rewards for time and energy spent? I was appalled when I read this. I have no recollection of thinking of Jose or our friendship in this way. I'm not entirely certain what I meant, nor am I certain I want to know. I know that the date of the entry is less than a year before Jose died, right around the time I realized I needed to spend time with him now, and instead of stepping forward into that realization, I let the demands of my personal and professional lives engulf me. I edged back from the middle of the path into the shadows. The I Ching responded to my question with the hexagram known as Inexperience, or “youthful folly”:
The final line of this response: "Don't let this go to your head.” This must have caught my attention, because while I bulldozed through the rest of my life full of “the right way” and “the wrong way”, with Jose I took a different path.
Here’s a picture of me with Jose during the last two months of his life:
And then he died.
Now, before you rush down the rabbit hole or into the dark wood or through the looking glass into the movie I’ve created here, this story of Jose and me, there’s one more thing you need to know. Like the movies, this book will take you on a trip. You’ll get to see love and compassion, simple acts of courage, and the knee-jerk response of common cowardice. Some of what you see will make you smile, maybe even laugh, but it should also make you angry. Just writing it makes me angry. I’m writing about a time when, except for the hours I spent in Jose’s company, I was angry about everything, and even when I try to tone it down, the anger leaks through. I suppose this means that, ten years later, I’m still angry. While I’m a little surprised to realize this, it really doesn’t make sense to feel any other way, and besides, anger’s not the half of it. This story is one hell of a cocktail: one part roller coaster, one part mad mouse, and a ole big swig of that ride where you’re spinning so fast centrifugal force flattens you against the wall --
and then the floor drops out. You know that one?
Are you ready? Here we go.
From the moment of Jose’s death, questions have poured down on me like a hard rain; no, like hail. Everyone wants to know:
Now before I answer, let me ask one more question: How are you, dear reader, how are you feeling right now?
As for me, historically I’ve had two responses. My first response used to be not to: to decline to respond at all. My second response went something like this: So, what the hell do you want from me? I didn’t say that, of course, and in fact you are the first to hear it, but now that I’ve gotten that off my chest, it occurs to me that I have the choice of a third response. Here it is. Watching your best friend shrink fast-motion into an old man, listening to him talk and talk (and talk was once all the two of you needed), fading in and out like so much static on a road-trip-radio stuck between stations, this is a lot like having strangers demand that you reveal your feelings because you’ve done something they don’t understand, something maybe they’re afraid of; and while I want to say that this can’t be done, maybe what’s more important is the question this raises for me. By what device do people develop the sense of privilege that empowers them to ask, no, to demand to know – and then to know more – about private and painful emotions? Curiosity. Of course.
Curiosity and fear, those two in equal measure push us forward, a hand pressed at our backs whenever we run into the closed door of the unknown. And as I stand at the door of the unknown and open my mouth, or rather, begin moving my pen, I make myself something of a moving target. I see that now. Used to be I thought I had a story to tell, simple as that. Two people, four years, a transformation. I’d have made it up and sold it as fiction, but I’m no good at that and it’s the truth anyway. So, let me be clear: if you don’t like the subject matter, don’t like that this story is about gay men or that it includes gender bending, drag queens, and same sex love; if you don’t like being made to examine the choices you’ve made, if you’ve got no reason to look at the boundaries drawn by all of us around love and self and sex; if you don’t want to look at death or disease or see love that strays off the middle path and defies logic; if you don’t like how I tell the story, think I’m on my high horse or just a bitch, then honey, quit reading. This story just ain’t for you.
Ah, at last I hear it, that sound I’ve been waiting for: Paul Monette’s partner whispering to him, “You tell ‘em, Paulie.” It means I’m on the right track. So many cautioned Monette when he wrote about AIDS, which he rightly named as just another form of genocide; “the national sport of straight men,” he called it, “especially in this century of nightmares.” Eyes open, heart wide, full-voiced, and in complete awareness of the lightning-rod emotions running through him, Paul Monette spoke the truth: “We are creatures of the cruelties we witness.” Maybe it has taken the transition to a new century for us to see this.
Of course we don’t hear much about AIDS now, and part of this is because we all feel more comfortable with the subject when we can think of it as curable, and after all it is old news. As I sit here writing today, it’s halfway through 2004. That makes two decades since the Center for Disease Control warned blood banks of a possible problem with the blood supply and two decades since the first safe sex guidelines were proposed. Still, as you read this, some of you may find that you know about as much as I did when I started, which was nothing. I’m also guessing, or maybe just hoping, that there are some of you who will remember when living in the ‘80s and ‘90s meant polishing tiaras and emptying bedpans. For you, for the fact that I will cover old ground as if it were new, I offer Jose’s perpetual refrain: “But, Dina, everybody knows that.” For those of you who know nothing about how AIDS landed on the American scene and gutted a glittering generation, let me shelve the attitude -- or try -- and tell you a story. Call it my coming out story. My path through life has led me down some unexpected roads and, frankly, I’m not sure where I am right now but I do know this isn’t the neck of the woods where I went in, it’s not Kansas, and it sure as hell ain’t Oz.
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me and Jose, a darkened movie house, and my heart happy like it hasn’t been since I was a child of three;
me and Jose, a rented hospital bed, and my forehead dripping like a runner in the midday sun as I hold Jose to my body, hold the bucket to his face, stroke his hair and whisper, "It's all right sweetie it's all right sweetie it's all right";
me and Jose, the back deck of my house, and our intertwined voices high with laughter over some prank Jose has played, some tale he’s told, or more likely, how shocked someone has gotten over what he did, and on this day Jose turns and says to me, “But, Dina, you are unshockable.”
Some will read this story and think it’s about me, although that’s not what I set out to write; for me this story is about Jose. Some will think the story is about death and dying, that it’s about AIDS before drug cocktails made it a chronic but not fatal condition, and those things are certainly in here. Some will even think this story is about my need to preach to the choir, and as for that I can’t say, except that it’s true I don’t have a problem voicing my feelings about friendship, gender bending, gay men, or HIV/AIDS. Because I write about my friendship with one gay man in particular, Jose Sequeira, and about my friendships with gay men in general, this story is inevitably about AIDS. Jose died because of it. Most of the friends I had when Jose was in my life died because of it. And let’s get one thing straight right now: you don’t die of AIDS. You die from the complications that come from living with a compromised immune system. These complications run the gamut from opportunistic infections that lodge in the physical body to psychological infections that permeate our social and religious bodies, but that’s not what this story is about either, any more than disease is about punishment or redemption. Sometimes I think this story is simply about the difference between that which is considered normal and acceptable and that which is considered shocking. I laughed when Jose said I was unshockable and I never asked what he meant. Now I think maybe I should have. Now I think maybe this is not such a good thing, being unshockable, being someone who accepts individuals and behaviors considered outside the norm. In the ten years since Jose’s death, as I talked about my friend and told the twin stories of our friendship and his death, the transformation these afforded me, the price they exacted, I found myself shocking people all over the place, and I wasn’t entirely certain why.
What I am certain of is this. When I met Jose, I was a stranger in my own life, and unaware that anything was amiss. And I am also certain of this. While I was born into the mainstream of life, I am not of it, and although I understood what words I was expected to speak and what path I was expected to walk, I could not make the middle way -- the expected path through life -- my own. Like a gay man, I can look like anyone else and I can sound like anyone else, but my internal experience has always been that of an outsider, someone who knows what it means to be invisible to others and lost to myself, and so it should come as no surprise that, while I’m hopelessly heterosexual, gay men have gravitated to me. I haven’t missed being in the mainstream, the path that even Dante called the straight way; I knew where it was, and I knew that I preferred life closer to the edge of things. This perspective worked just fine for me, until Jose died.
When Jose died in the mid ‘90s, gay men were the scapegoat for AIDS, and like any proper scapegoat they were heaped with the sins and secrets of society and sent into the woods to be devoured. Jose’s last year of life was a journey marked by this savagery. It was also a journey marked by love, the beauty of love unexpected, the grace of love unconditioned. At the end this journey with Jose, I remember waking to an oddly familiar sensation, one of being in that “dark wood where the straight way was lost.” This dark, lost place described by Dante is one I have known on and off since childhood, only this time, the experience was a little different. Through my friendship with Jose, I had gained a true sense of myself and found my place in the world. Or so I thought. But I’d wandered out into the woods with the goat and, like that scapegoat, I was not expected to walk back out. Family and friends, peers even, looked me as if I were a stranger, a lost soul, someone to be regarded with a potent mixture of awe, curiosity, and fear. Very few wished to hear the tale I had to tell.
Since the teller of any tale must be trusted to be believed, and since the story I have to tell is for everyone, from those treading the straight way though life to the boys in the band and even those who feel themselves lost in some dark place, let me begin by telling a little bit about myself, because this story is also for me. Simply put, I need to tell it. By the time I’ve finished telling it, I want the love story that was Jose’s life to be simply one of the many facets of gay life, the life that Jose used to kid me about by saying, “Dina, everybody knows that.”
Like Jose, I was trained as a fiction writer, so it’s not unusual that I should try writing a novel -- an impossible task. I don’t write fiction anymore. My friendship with Jose made life more interesting by far. What I had managed to accomplish, however, was written the year before Jose’s death, and so when I came across this bit of fiction while writing about Jose, I was surprised to see myself, the very self I had become over the intervening decade, a decade during which I had also become the same age as the main character, a woman who had just lost the person she loved most in the world:
I’m driving home in the dark after my father’s funeral.
I keep saying that. Reminding myself where I am. Explaining to no one why I’m hurtling west through the night air, radio blaring. For a week I haven’t slept, haven’t tasted the food I’ve eaten, haven’t taken a shit. The best I’ve felt was during the service when I sat next to my father’s sister, an aunt I barely remember, who let me cry and didn’t try to fix what can’t be fixed.
It’s Sunday, almost midnight, and home is five hours away. I have the window partway down, but the air is sticky and warm, as it has been since this afternoon when thunderheads rolled in, bringing summer lightning, low-rolling thunder, a full moon, and no rain. I’m speeding. My father always drove fast. I suppose the love of speed can be genetic, like the inclination to be strong willed or tender hearted. I’m doing ninety, foot pressed hard against the gas pedal. I don’t know how long -- or why -- I’ve been doing this, but my thigh and calf muscles are clenched and starting to tire. Metallica has just finished the song I always think of as Exit Light -- I’m forty-four and still love heavy metal -- and since this might be what drives my foot to the floor, when the first chord of the next song rings out, I ease off the gas. It’s a ballad, and declares itself so through the achingly pure electric-acoustical guitar riffs that metal bands sound as an anthem to the quietly withheld pain underlying the energy, the anger, and the sheer heart-pounding noise their fans call music.
Headlights behind me flash in the rearview mirror. On the road ahead is a dark spot the size of a child. A single guitar note strikes, I swerve left, the dark spot turns, eyes flashing mirror-clear. In the illumination, I recognize a Great Horned Owl. Lights slash the rearview mirror and my eyes as the car behind me gathers speed and veers left to pass. I look ahead into the eyes of the owl. Two high notes sound; he spreads his wings angel-wide. Three low notes progress upward and the owl goes with them. The next chord wings him low over the passenger side of the windshield and roof of my car just as taillights swerve in front of me and recede into the future.
This instant lasts a lifetime and leaves me flying backward in the wake of the wind, transported into a hundred-thousand vibrating particles hovering in the dark somewhere over southeastern Washington, listening to the moon sing.
I knew nothing of death when I wrote this, and yet unwittingly I had described the very experience I would have a year later when Jose stopped breathing, a sensation in mind and body hovering somewhere between the nuclear and the sublime. All but one detail of that scene was true; even when I thought I was writing fiction, I had been recording life. My father isn’t dead, of course, he wasn’t dead when I wrote that opening scene to my would-be novel, and he hasn’t died since, but he did die, at least I thought he did. It happened right before my 4th birthday. Thirty years later when Jose died, my father died all over again; buried memories began to surface like hungry ghosts and, haunted by my own forgotten past, I began to grieve for the first time, to mourn for what I had lost decades before my friendship with Jose had even begun.
It happened like this.
In the winter of 1963 President Kennedy was shot and killed, which I don’t remember, but some time after Christmas that year I flew with my parents to a little town in Oregon to attend my great grandfather's funeral, which I recall very clearly. After the funeral my father, a soldier, left without us and did not return. When I asked where he went, my mother gave the same answer she gave when I'd asked where grandpa went: “Away. And he’s never coming back.” This was my first experience of death. It came at a time in America when everyone seemed to be losing fathers and grandfathers, a time when people watched in shock and horror as the complications of the Viet Nam war and civil unrest murdered the men we had built our lives around. But war, protest, assassination, divorce, these were not words spoken in my mother’s family. Few words were spoken that did not revolve around work or meals or any of another thousand daily tasks, and so it was in the rhythm of daily life that I learned that people I loved could go away and never come back.
Allowed neither to question the parameters of my world nor to grieve, I did what so many do: I made the pain disappear by refusing to let it show. Problem was, who I was and how I felt wasn’t just hidden from the world, it was hidden from myself as well. By the time I met Jose, I was a stranger in my own life. I just didn’t know it. Growing up I was an outwardly compliant, intelligent, even eager child, but my inner life spun on a knife-edge. Perhaps I’d be considered just an average kid today. Maybe I was even then. In any case, I grew up in a world where children didn’t have tempers and teenagers couldn’t have depressions. They had attitudes. For me, puberty heralded not only hormones but also head-slamming headaches and suicidal ideation, but the only words I’d learned to describe my experience were the curse, bitch, and much worse by far, “Baby!” It was a childhood guaranteed to produce the woman I became, someone for whom every relationship -- every close friendship, every sexual encounter -- was an opportunity to suck at a breast that had run dry long before I was born. My composed exterior masked an interior that leaked out only through my taste in music: fast, hard, screaming-loud. No one was listening.
My family didn’t fail to love me. They just failed to see me. From family I learned the pain of saying not what I felt but what was expected, the punishment of asking not for what I needed but for what was possible. I can’t say that meeting Jose changed all this, we were friends for only four years before he died, but I can say this: Jose’s friendship marked the first time I loved anyone without making the child’s bargain I had come to understand relationships to be. It wasn’t necessarily what I had with Jose as much as what I didn’t: I didn’t have to fantasize the impossible; I didn’t have to take what was given but secretly wish for something else, something more; I didn’t have to second-guess what the other person was feeling before I decided how I felt; and I didn’t have to be anyone but myself. Through Jose’s friendship I experienced the joy of being seen, and for the first time I knew the freedom of being loved for who I was, instead of in spite of it.
Jose and I loved books, we loved writing, we loved movies, and we loved each other. And although Jose was gay, brown, and from a privileged landed class who lost everything to communism and a subsequent emigration to the US, while I was straight, white, and a third-generation American from a working class family that raised its kids to think they were middle class, inside we were alike. And it was from the inside that Jose and I saw each other. How we differed was mainly in the way others saw us. Jose had the common touch: he could say anything to anyone about anything. He could talk about his novel, his travels, himself; about being gay, being ill with the effects of HIV, being on disability; about being from Nicaragua, not Mexico, becoming a Sandinista to teach the poor to read, and then learning that the Sandinistas executed homosexuals. No matter what he said, everybody loved Jose. Me, I am nervous about sharing who I am and how I feel, and when I do, others tend to have strong reactions. Just as it was with my family, these aren’t necessarily positive reactions.
Upon viewing the stars as they mapped themselves out at my birth, an astrologer friend once told me that I bear something called a grand cross. Some might call this a fancy way of saying I have a big chip on my shoulder. A grand cross, I am told, indicates someone who is sure to bristle when demands are made to reveal emotion, someone who is inclined to be in a near-constant state of rebellion, a willful person who must do things her own way and who puts up defenses at the first sign of being challenged. For such a one as this, tolerance must be a feature, not an accident, of one’s behavior. I often find myself wishing I were more like my father, a man who remains proud of me no matter how many knots I tie myself into or how many time I must say I screwed up, again; a man who somehow knows that each person is always doing his or her best, no matter how piss poor the results look.
The year Jose activated his Care Team, which is what he called the circle of friends who helped him as his health declined, I was the administrator at a place called The Writing Center, a tutoring facility at the university where Jose and I first met. The position was temporary, and transitional, a nine-month appointment while a search was conducted for a Ph.D. to run the place, but the offer had come after three frustrating years of trying to cobble together work as a writer, an editor, a tutor, anything in my field, and since I had trained at The Writing Center as a grad student, the job seemed a shoo-in. I accepted in anticipation of experiencing some much needed success. See, it wasn’t just my career that wasn’t working at that time. My friendship with Jose was one of the few bright spots in a life that wasn’t working in so many ways, including in my marriage. I could say that I felt like a failure, but I never slowed down long enough to feel much of anything. Except intolerance. I felt that often enough, though I wouldn’t have believed it if you had told me at the time. I thought the way I felt was just fine: I was intolerant of intolerance, intolerant of others who were intolerant. I have come to understand that this is my biggest character flaw. I’ve tried -- I’m still trying -- to be accepting of faults, to keep in mind the fact that we all learn our lessons in our own way, at our own pace, in our own time -- I want to be tolerant, I do. All the same, I was quick to judge human failings then, and I am quick to see them now. Jose’s mother, Sonia, may have seen me as an angel because I loved and cared for her son as he died, but too many of the graduate assistants who worked at the Writing Center during the same time period would paint only the flip-side, the portrait of a woman with exacting and inflexible standards, someone unyielding. That year at the university was not the simple success I had hoped for. Nothing was.
Here’s a picture of me when I was caring for Jose, just a month before he died:
Tonight’s my night with Jose. Tonight’s also our Care Team meeting. Only Cliff, Frank, and I will be there. Yesterday I spoke strongly to Cliff about his not having stayed with Jose (he has Friday night, but Frank’s been taking Jose to the mountains for the weekend). I told him I thought he should trade nights with Frank and stay with Jose during the week (pull his weight is what I meant). Last night Cliff spent the night with Jose -- at the last minute because Kat, who had already switched with Frank because of a scheduling conflict, said he couldn’t make it last night either. This isn’t the first time he’s been late, switched, or couldn’t make it. I’m tired. I. am. tired. Lupin and Kaye have not been irresponsible, but they have done their share of missing meetings and not being here on their scheduled nights. Corey has bailed out of caring for Jose during the day, a promise he made to both Jose and Frank; he is the one we looked to when Jose’s parents had to leave suddenly. Frank has called Sonia. She’ll be here in a week. When Corey quit, he left Jose’s social worker with the impression that the nighttime Care Team was falling apart. It was a misapprehension -- and a jump to conclusions -- but now I am beginning to feel the same way.
We’re all tired. We’re all at different stages of grieving. I fill my hours and my head with work, and I spend my time burning with self-righteousness. Silently burning.
Back then, I was burning a good deal of the time: at work, in my marriage, over the actions of anyone whose level of commitment didn’t match my own. And every time I tried and failed to figure out why I couldn’t make my life work, I burned. Because I did not speak these feelings aloud, I prefer to think that no one noticed. Then again, before Cliff and I got into marriage counseling, we thought we were doing a good job of covering our feelings. Turns out no one could stand to be in the same room with us.
At work, my husband was my office assistant. And about the same time that Jose’s Care Team was struggling to hold together, my husband had come to realize his unwitting complicity in a power struggle that affected both my standing in the department and my ability to perform my job, a situation from which there was no extricating myself, and he had apologized. But there are some things that once you have allowed them to be done cannot be taken back or undone. They just have to be lived with. At work my psyche had begun to react to the cumulative effect of eight months of disrespect and helplessness the way my body might have reacted to eight months of Twinkies and Easy Cheez: my gut burned with a sickness that was my own fault. I had taken a position that carried responsibility but no authority, and when the graduate assistants working under me rebelled, I responded by gripping the reins even tighter. It’s what you do when you know you’re losing control and you’re out of options. Anyway, it was what I did. In retrospect, I can see that I took responsibility for problems that were mostly not of my own making. It was easier for me to believe I was in control and exercising that control badly than to admit I had no control at all, easier to accept responsibility for problems I had not created than to examine how poorly equipped I was to be an administrator: willful, rebellious, certain my way was right.
But with Jose, even when I didn’t know what to do, which was all the time in the final months of his life, I knew what to do: I loved him. That’s how I remember it, anyhow, but I am learning that memory is a strange and sometimes over-flexible thing. It’s odd what the mind runs together and calls memory. Sometimes I think we need a different word; what we call “memory” is more often an attempt at understanding than a simple recalling of the events. Going through my I Ching workbook as I wrote about Jose, I found an entry with his name on it. I had posed this question: What may I expect of and from my friendship with Jose over the next six months, especially in terms of demands on my time and energy and rewards for time and energy spent? I was appalled when I read this. I have no recollection of thinking of Jose or our friendship in this way. I'm not entirely certain what I meant, nor am I certain I want to know. I know that the date of the entry is less than a year before Jose died, right around the time I realized I needed to spend time with him now, and instead of stepping forward into that realization, I let the demands of my personal and professional lives engulf me. I edged back from the middle of the path into the shadows. The I Ching responded to my question with the hexagram known as Inexperience, or “youthful folly”:
In its static form, inexperience suggests that a heretofore great mystery or a misunderstood part of your nature must unfold and come forth before further progress can be made. . . . Success is indicated. In fact, once the mystery is unraveled you may experience what is known as "beginner's luck."
The final line of this response: "Don't let this go to your head.” This must have caught my attention, because while I bulldozed through the rest of my life full of “the right way” and “the wrong way”, with Jose I took a different path.
Here’s a picture of me with Jose during the last two months of his life:
6 May 1994 -- Home from the hospital today. He puked and puked and puked and I held him close, held the bucket and the paper towels, held a cold cloth to his head. Exhausted, we napped.
As we step out into the dark unknown, will our feet fall on something solid? Will we learn to fly?
9 June 1994 -- Last night Jose said, “What’s done is done, isn’t it?” He spoke of a journey. I promised to go with him as far as I can.
At breakfast he sits motionless before his oatmeal, his eyes following the movement of a figure I cannot see. He says, “I want to go with her.” When I ask him where she is going, he says, “Home.” I place the spoon in his hand and show him how to grasp it, but he does not know what to do with the spoon. I call the VNA nurse. Then I feed him.
17 June 1994 -- We took snapshots of ourselves today. Then we snuggled between the bars of the newly rented hospital bed and watched a video. Jose fell asleep halfway through. When he woke I remarked on how happy he looked. Quietly he said, “You know.”
When I am with Jose I radiate. When I realize that all this seeming normalcy is not, I collapse into darkness. Like a star I pulse bright and dim: joy and fear, joy and fear. “Yes,” I said, and then silently, I know.
And then he died.
Now, before you rush down the rabbit hole or into the dark wood or through the looking glass into the movie I’ve created here, this story of Jose and me, there’s one more thing you need to know. Like the movies, this book will take you on a trip. You’ll get to see love and compassion, simple acts of courage, and the knee-jerk response of common cowardice. Some of what you see will make you smile, maybe even laugh, but it should also make you angry. Just writing it makes me angry. I’m writing about a time when, except for the hours I spent in Jose’s company, I was angry about everything, and even when I try to tone it down, the anger leaks through. I suppose this means that, ten years later, I’m still angry. While I’m a little surprised to realize this, it really doesn’t make sense to feel any other way, and besides, anger’s not the half of it. This story is one hell of a cocktail: one part roller coaster, one part mad mouse, and a ole big swig of that ride where you’re spinning so fast centrifugal force flattens you against the wall --
and then the floor drops out. You know that one?
Are you ready? Here we go.
From the moment of Jose’s death, questions have poured down on me like a hard rain; no, like hail. Everyone wants to know:
how could you do it, wasn’t it hard being so close to death, who was Jose to you, why did you stay to help him die, what do you get out of being friends with people who are sick;
what does it say about you that your friends are all men, why do you have so many gay friends, but you’re married aren’t you, why do you surround yourself with people who are dying, what does it mean that you had to be guardian angel for a circle of dying men;
was Jose like a brother, if he’d been straight would you have married him, what about your husband didn’t you care about him, what was your husband doing while you were gallivanting off to care for other men, so why do you have so many gay friends;
what’s it like to be near death, how did you get the strength, how could you put yourself through it, weren’t you ever scared, how were you feeling, why don’t you talk about your feelings, and why are you hanging out with these people anyway;
what’s it like to be friends with the dying, I don’t really understand how you can write about this and not tell us how you felt, you don’t think you’re better than the rest of us do you, because everybody dies, you’re not the only person who’s ever lost someone you loved you know;
why is it you think you know more about this than anybody else does, to hear you tell it sounds like you always know the right thing to do and are unendingly loyal and always informed and tolerant and you have no fears no inadequacies;
you’re married right, kids you have kids don’t you or you want kids right, didn’t your husband get tired of you always leaving to help other people, what’s it like to be close to the dying,
how did it feel to watch your best friend die?
Now before I answer, let me ask one more question: How are you, dear reader, how are you feeling right now?
As for me, historically I’ve had two responses. My first response used to be not to: to decline to respond at all. My second response went something like this: So, what the hell do you want from me? I didn’t say that, of course, and in fact you are the first to hear it, but now that I’ve gotten that off my chest, it occurs to me that I have the choice of a third response. Here it is. Watching your best friend shrink fast-motion into an old man, listening to him talk and talk (and talk was once all the two of you needed), fading in and out like so much static on a road-trip-radio stuck between stations, this is a lot like having strangers demand that you reveal your feelings because you’ve done something they don’t understand, something maybe they’re afraid of; and while I want to say that this can’t be done, maybe what’s more important is the question this raises for me. By what device do people develop the sense of privilege that empowers them to ask, no, to demand to know – and then to know more – about private and painful emotions? Curiosity. Of course.
Curiosity and fear, those two in equal measure push us forward, a hand pressed at our backs whenever we run into the closed door of the unknown. And as I stand at the door of the unknown and open my mouth, or rather, begin moving my pen, I make myself something of a moving target. I see that now. Used to be I thought I had a story to tell, simple as that. Two people, four years, a transformation. I’d have made it up and sold it as fiction, but I’m no good at that and it’s the truth anyway. So, let me be clear: if you don’t like the subject matter, don’t like that this story is about gay men or that it includes gender bending, drag queens, and same sex love; if you don’t like being made to examine the choices you’ve made, if you’ve got no reason to look at the boundaries drawn by all of us around love and self and sex; if you don’t want to look at death or disease or see love that strays off the middle path and defies logic; if you don’t like how I tell the story, think I’m on my high horse or just a bitch, then honey, quit reading. This story just ain’t for you.
Ah, at last I hear it, that sound I’ve been waiting for: Paul Monette’s partner whispering to him, “You tell ‘em, Paulie.” It means I’m on the right track. So many cautioned Monette when he wrote about AIDS, which he rightly named as just another form of genocide; “the national sport of straight men,” he called it, “especially in this century of nightmares.” Eyes open, heart wide, full-voiced, and in complete awareness of the lightning-rod emotions running through him, Paul Monette spoke the truth: “We are creatures of the cruelties we witness.” Maybe it has taken the transition to a new century for us to see this.
Of course we don’t hear much about AIDS now, and part of this is because we all feel more comfortable with the subject when we can think of it as curable, and after all it is old news. As I sit here writing today, it’s halfway through 2004. That makes two decades since the Center for Disease Control warned blood banks of a possible problem with the blood supply and two decades since the first safe sex guidelines were proposed. Still, as you read this, some of you may find that you know about as much as I did when I started, which was nothing. I’m also guessing, or maybe just hoping, that there are some of you who will remember when living in the ‘80s and ‘90s meant polishing tiaras and emptying bedpans. For you, for the fact that I will cover old ground as if it were new, I offer Jose’s perpetual refrain: “But, Dina, everybody knows that.” For those of you who know nothing about how AIDS landed on the American scene and gutted a glittering generation, let me shelve the attitude -- or try -- and tell you a story. Call it my coming out story. My path through life has led me down some unexpected roads and, frankly, I’m not sure where I am right now but I do know this isn’t the neck of the woods where I went in, it’s not Kansas, and it sure as hell ain’t Oz.
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