Tuesday, February 16, 2016

HOPE (chapter 7)
This is the chapter in which Jose dies. What, you’ve watched Jose die already? Get used to it. He dies in this book. A lot.
      At a quarter to midnight, six months after Jose’s death, Frank and I stood alone in a wind that seemed to blow directly from some northern tundra, though in fact it was blowing outside the Portland home where our grief group was about to ring in the New Year. The winter ground lay cracked and dry at our feet. Frank wore dark slacks, a white shirt, and a thinly lined leather jacket; cold has never penetrated Frank. I wore sweater tights, a denim skirt, and a triple thick wool sweater-- Jose’s sweater-- over a turtleneck, but I felt as if I were naked in the cold. As my teeth chattered beyond my control, Frank’s voice howled over the wind, shattering the small porcelain hope I can sometimes get in the last minutes of the last day of the year. 

      “You act like you’re the only one who can write. I can write!” said Frank the bluegrass fiddler. Frank the world traveler. Frank the seeker of new brown faces to love. “I loved Jose too, you know!” 

      In our shared grief, Frank and I had been inseparable. Everything we’d done had been a joint effort: Frank and Dina caring for Jose, Frank and Dina sorting Jose’s possessions, Frank and Dina missing Jose. I supposed, as I stood there wordless and chattering with cold, that Frank had assumed the writing of this experience would also be a joint effort. Guilty, I yelled back, and Frank roared off into the dark just minutes before midnight. “The bars aren’t closed yet,” he said, his voice trailing after him the way his Texas accent follows any high emotion. “I still got time to find me a husband!”

*   *   *   


Reaper was the platoon philosopher.
      “Time,” he said... “time is in the eye of the beholder. I go to sleep in May, I wake up in September. Okay, now it’s September. I go to sleep at nineteen-hundred. I wake up a month later, and it’s nineteen-oh-one.” 
      “How long has it been this way?”
      “All day, sir.” 
  The Evil Hours: A Biography of Post Traumatic Stress Disorder

      In the land of memory the time is always now. 
      And now. 
      And... now. 

      The past is now. The future is now. And now it’s been so long since the past receded naturally from the present and the present walked forward toward the future that I’m no longer sure I know how, how to move forward in time.

      In the land of memory, time is not linear but recursive, looping back and back in an unending spiral, and each successive reliving of the past informs the next reliving and the next until the echo of that past is ever present and ever repeating and no longer just itself but a new thing, a thing both nourished and starved by what has happened just now. And now.

      I live in a place that looks out on the world from the wrong side of the looking glass-- or the wrong neck of the woods or the bottom of the rabbit hole, pick your metaphor, they’re all the same to me; I no longer live in the real world. And no matter what I do to finish this story, the story I wrote about my friendship with Jose, I find the present bleeding back into the past and the past bleeding all over everything. I can’t keep them separate. I live in the land of memory where the time is always now and now there’s no way out. 

      I told myself that today is the day. Any day could be the day, so it’s today. Today I begin this chapter, which is not a revision of what I first wrote so many years ago but a new chapter, a chapter of uncertainty that will somehow, I’ve no idea how, but somehow, transport me into the next phase of life: a life in which this story becomes complete, a life in which, somehow, I’ve no idea how, I can move forward, marching in sync with time. 

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Sunday, October 25, 2015

One Easy Thing / chapter 6

The day I got my first speeding ticket it had been weeks, months-- it seemed years-- since I’d slept, really slept. It’s the exhaustion first time parents feel, only mine wasn’t from the joys of new life. My dearest friend had just died, my dearest grandparent was in danger of dying, and I was freeway-shuttling between the aftermath of Jose’s death and my duty to my family, eyes fixed in the wired-and-tired position. A train of tractor-trailer rigs lined the righthand lane that day-- going the speed limit for once-- lumbering between me and where I wanted to be. I veered left and tucked in behind a little red sports car. Miles later, as I watched the officer growing larger in my rear view mirror, I found myself thinking like a 10-year-old who’s been sent to her room without getting a chance to explain just why she committed an infraction: But I only meant to pass! Instead, I’d just kept on flying, a homing pigeon in the wake of the one clear thing I could see at this point in my life, a little red car on the road home. The ticket came just after Oregon had decided to make an example of those who flouted the law. The gas crisis was long past and most states recognized this by raising the speed limit, but Oregon, still staunch at 55, responded by raising its fines. Three-hundred-fifty, sixty, no, three-hundred-and-seventy dollars it was. I calculated it out a week later, totaling the damages at just under nineteen-and-a-half dollars per year since getting my learner’s permit. A mere surcharge, I told myself, given all the joyful years of speeding for which I had never been caught, but on that day, holding my ticket as I watched the officer’s car pull back onto the freeway where the road is lined and the limits are posted in black and white, all I could do was lean into the steering wheel and cry. 

“I just want one easy thing,” I said, “just one.” The friend walking the track beside me nodded vigorously, then laughed out loud. We could have been talking about being women in the ‘90s. She had a child, a husband, a career, a working commitment to the nontraditional school in which her child was enrolled. She was also a writer, so we could have been talking about writing, which was going abysmally for me, and I suppose we were talking about all those things, but I was talking about my life, the relentless way it flew forward. It was February, a year after that speeding ticket, a year during which I had been writing a book about the months I spent caring for my best friend as he died, about how he and I sat on the edge of his hospital bed at the end of his life and grew closer, though he suffered from dementia and I from denial. I grieved hard after Jose died, and in grief the writing had roared out of me, but now I spun in circles, a car on January ice. I talked to my friend, but I didn't tell her what I really wanted to know. Why does my body hurt so much? Why do I tire so easily? Why is it so hard to get anything done? I didn’t know what was wrong, but as my life careened and my body braced for impact, my mind sang out a little prayer. Please please please, just one easy thing. 

At that point, it had been half a dozen years or so that I’d been experiencing the effects of death and disease in my life; again, a mere life-lesson surcharge were I to consider all the bodies that were piling up around my gay friends. What I didn’t know, what the god who runs this universe was merciful enough to keep just round the next bend, is that Jose’s death wasn’t the last of it. I wasn’t coming out of grief but about to dive headlong into it and there’d be no easy thing for another decade and a half. By then I’d be divorced and surprised to be alive and healthy, but at 35 I thought simply that it had been a hard year since Jose’s death and too many years that I’d been experiencing death in the lives of those I loved.

It began the summer of 1991, the year my sister's husband died. The news came just after Jose had had a close brush with death, something called CMV, and he was spending his days hunched on my couch quietly concentrating on recovery. Jose was twenty-seven then. My newly widowed sister was twenty-nine, just a couple years younger than me. When I learned that my brother-in-law had died-- literally dropped dead in front of his wife and their best friends-- I got drunk and drilled one of my husband's Marine buddies about his attitude toward women. I did this at the home of friends who later reminded me that the very day they met me I was giving this same Marine a dressing down so thorough that I had paused only to say, Pleasure-to-meet-you-I’m-sure-you’re-very-nice-people-but-I’m-kinda-in-the-middle-of-something-here, before resuming my tirade. The man deserved it, too, earned it even. Both times. The more salient fact, however, was that I could not comfort my sister. That possibility would have taken a different childhood. One we didn't have. I didn’t just feel powerless, no, I felt that whole body hurt you get from the car crash that’s happened hundreds of miles away to someone you love. In my own muscle and bone, I felt my sister refusing the door and the telephone as she sat landlocked in middle of her central Oregon home, clutching her infant son and insisting on life when she no longer wished for it. My heart held the fisted clench of her jaw, the lead weight of her tears, the pure animal grief. Had I been a Marine myself, I’d have gotten drunk at the nearest bar and beat the life out of the first guy who looked at me wrong.

Accidents. Accidents are the Schwarzenegger’s of death, a fast-paced, action-packed cop flick. Drama, action, catharsis! Accidents have it all. Oh, it’s hard to look. It’s also hard to look away. Disease, now that’s a foreign film showing at an art house-- a film, not a movie-- starring people you’ve never heard of; a story with subtitles typed over the sound of a language you do not speak, underscoring a culture you cannot comprehend. Alzheimer's, cancer, cirrhosis, congestive heart failure, myocardial infarction, major depressive episode, suicidal ideation; it’s hard to wait in the anteroom of death, hard to watch deterioration, delay, decay, despair. AIDS, cytomegalovirus, dementia, neuropathy, pneumocystis pneumonia, toxoplasmosis; it’s hard to push past the foreign words to find the people behind them. And the fact that the slowly dying body your loved one is now living in determines the world they live in, well, that’s something none of us wants to learn.

A month before he died, we took Jose to a spring festival on the Portland waterfront. None of us can remember now which festival it was. They're all the same: tents with stuff to eat, tents with stuff to sell, music if you’re lucky. It was a good excuse to get out. Jose hadn't been out of his tiny apartment in weeks, and where had he gone except to see doctors? Fact is, we’d all been cooped up. So, Frank borrowed a station wagon, a red Volvo, and after getting Jose situated in the front seat, Jose’s mother-- Sonia-- and I climbed into the back and sat pressed against separate doors on separate islands of graham cracker crumbs, smiling at each other in separate languages from either side of a toddler’s car seat. Jose's wheelchair lay behind us, patient; necessary; the unavoidable chaperone. The trip into town was a quiet one, but once there we were a circus. We put Jose in the wheelchair and layered him with a hat, a scarf, a winter coat, an umbrella just to be sure. Then Frank added his cast off jacket and Sonia her purse, a white boat of a thing much like the one my mother hung on my arm as she sent my sister and me off to the movies with a complete lunch for two: sandwiches, soda, napkins, even movie candy. Looking very much like the shopping cart of a homeless man-- Burnside Cadillacs we call them here-- Jose let each of us fuss over him, frowning only at the pain of neuropathy in his skinny legs when the wheelchair got jostled too suddenly or too hard. He smiled back at us as we smiled oh-so-normally at him and clucked to each other how lovely, how nice, the day, the weather, being outside at last. Even in a wheelchair, Jose was as much the host as ever, steering us toward enjoyment. Like the thrum of the crowd, his graciousness would lull us, and we would relax into the pleasure of sun and wind upon our faces, the taste of exotic foods on our tongues, the breath-altering beat of native American drumming in our chests; enjoying ourselves so much that later it would be a shock to hear Jose say, so quietly, that he was cold and tired, that his head ached, that he'd been wanting to go since the drums first began to pound. The wind had risen by then, the way it does on a changeable spring day, and a fine Oregon mist hung in the air as we rushed back to the car. 

But that was at the end. When we start the day, it's sunny and we're all smiles and chatter and Jose, like a mother with a bevy of children, carries our belongings as we wheel him along the sidewalk. It’s sunny-- did I say that?-- and we soak it up the way only gray-skinned western Oregonians can. For us the sun is a drink, a drug, a trip ticket out of the sixteenth month of winter, and so we’re all a little high as we begin to cross Front Avenue toward the waterfront. Halfway across six lanes of downtown traffic, we spy a cement planter at the edge of the median. It is round and small and overflowing with orange, yellow, and blue flowers. In front is a plaque: World's Smallest Park. Laughing now, we hurry to finish crossing before the light changes. We wheel Jose up the ramp and onto the sidewalk, point him north toward the festival entrance, and we’re almost there when we run into a string of cars hitched up on the sidewalk like big-hipped women with one bun on a barstool; not really parked, not planning to go anywhere either. Anyone can walk around them. A wheelchair-bound man with the razor pains of neuropathy isn’t just anyone. We maneuver the wheelchair back out into the street where it rattles and shakes like a grocery cart with a bad wheel; Frank, Sonia, and Jose apparently calm, me not-so-quietly steaming, my mouth shut but my thoughts nearly loud enough to be heard by passersby: Fine. We'll take our business into the street if we have to. I can’t tell you why I was so angry about that detour except to say that daily I willed myself to be calm in a world indifferent, and too often cruel, to people with AIDS; that I was-- I am-- fiercely protective of those I love, perhaps a little too fierce, for it wasn’t on this day that I heard his words but in my mind this scene always plays out with Jose’s voice, soft in the background. “Now, Dina, don't get mad.” 

Jose saw me truly angry only once. It was in the middle of the night, and we needed a doctor. Jose’s own doctor, a warm and caring man available to his patients around the clock, was at the AIDS Summit in Europe, or Asia maybe. Anyway, it's 5 AM, I’m trying to discuss Jose’s symptoms with the on-call doctor, and this douche bag has nothing to say but SPEAK UP and YOU GOT ME OUT OF BED AT 5 AM FOR THIS? I'm sitting on the edge of Jose's bed where all night he’s been shaking, not trembling, shaking, the kind you’d think reserved for IV drug withdrawal, and sweating too, three nightshirts and counting. CMV again, that’s what Jose fears, cytomegalovirus: it starts with night sweats and uncontrolled trembling and ends in blindness. It's only a month since Jose’s return from the hospital, a ten-day stay during which the IV meds for toxoplasmosis-- another opportunistic, AIDS-related virus-- nearly killed him. Still lodged in his brain, the toxo is accelerating Jose’s dementia. It also messes with the inner ear, causing Jose to vomit. Or is it the pills he takes for the toxo that cause vomiting? Or the pills for the six other diseases he has? There's no way of knowing. Not for certain. What I do know is that Jose is sweating and shaking and scared, and nothing I say can calm him. My first thought is to call Frank, an hour away. Frank says call the doctor. So, like a child with a hall pass in hand, I do. And now, as the on-call doctor condescends, as he berates my powers of reason and observation and badgers me because he does not know the generic names of medication, which are all I have, I hold my tongue and I let him; until I get what I need to reassure Jose. Then I tell the doctor off. I do a good job of it, too, so good in fact that it's only after I've finished that I hear Jose's soft refrain, “Don't. Dina, don't.” 

Everything I do is to make Jose comfortable. Everything I do is because I love my friend and he's dying and all I can do is make him comfortable. Tonight I've called the doctor so that Jose won't be upset and now he's upset to see me so angry; I can do nothing. Jose is right of course, I know he is, but I come from a family of women who take flight in anger; easier to attack from the air. I once referred to my mother as a harpy and when a friend looked puzzled I explained, “Harpy is a twenty dollar word for bitch,” and she was, but now that I think on it, what does that make me? Best case, a raptor. Consider that I once loved a man who would cover my eyes with his hands whenever I was over-agitated, like hooding a hawk to forestall flight. “Don’t,” Jose said, “Dina, don’t.” Don’t be angry. Don’t tear at things. They are what they are, and anger will not change them. It took me another ten years before I fully grasped this, but with Jose. . . . For Jose, I could be calm in the midst of any emotion or obstacle; for Jose, I would be calm through the bitterest of disappointments, and what is death to the living but a deep disappointment, a sense of having failed; for Jose, I stayed calm to make easy what was hard. Ten years after this night, after a depression so deep and so dark that it was like diving into the grave and pulling the dirt in after me, I finally understood: the compassionate heart you present to the world is for yourself. It is this heart that makes a heaven of hell. 

Back in Jose’s apartment, I get him settled under the covers and tell him what I know, which amounts to, Don't worry and We'll call the clinic first thing in the morning, and I mean the real morning, not this surreal version we're living through. Then I go into the next room and quietly cry. What the doctor failed to consider is that it's 5 AM for me, too. And I've not slept, not really, lying next to my best friend in his double bed, trying to judge by his breathing whether he's resting comfortably, whether he's sleeping, whether it's possible for him to sleep; thinking, Please (and I don't know who I'm begging each night, but) please let him sleep. He needs sleep. But this night Jose’s body drenches him and his shirt and the sheets and soon I'm on the phone asking the doctor what to do and it's days and days until we can consider taking him outside, outside into the sunlight and the wind, into the on-again-off-again drizzle we call rain, into the crowds of happy people on their feet wandering here and there with their hands full of Coke and chicken on a stick, one in each hand because they aren't pushing a wheelchair, because they aren't hanging onto the arms of a wheelchair, being bumped and jarred along the muddy waterfront lawn. 

          *    *    *
I am asleep in Grandma’s bed when the dream awakens me. Grandma is pacing back and forth on a platform in the mist. She's worried and I'm frantic to reassure her, but nothing I say can console. “I missed the train,” she says as she paces. “I missed the train. I missed the train. I missed the train.” 
          *    *    *

After my sister was widowed, after Jose’s death and the deaths of several other friends as well, I found myself moving my grandmother from her riverfront home to a studio apartment in an assisted living community. She was not old, not by our family standards, but she was in very poor health. The weekend we moved Grandma was also the weekend we brought her home from the hospital, the second stay in as many weeks, the fourth in less than a year. We brought her home from the hospital to sleep in her own bed under her own roof one last night while we packed up her china, her bird statuettes, her tea cup sets, and carried them along with her pink floral couch and matching recliners onto a U-Haul and over to her new apartment in an “active retirement . . .” place. Facility. Community. Management called it a village but, whatever you call it, it’s just a euphemism for where you go before you die. Grandma didn't want to go. What Grandma wanted was to know why. Why she tired so easily, why she couldn't sleep even though she was tired, why it was so hard to breathe, why her belly bloated with pain, why she vomited. Chronic kidney failure isn't an answer. Neither is high blood pressure or congestive heart failure or uterine cancer. These are diseases, the sources of despair, not the answers to it. 

That last night in her home was a rough one for Grandma and me, she with her pain and her refusal to name it or let it be salved, me with my confusion over the disappointed and plaintive woman my grandmother had become. The morning of the day she was to be moved, Grandma said to me, “Why aren't you closer to the family?” The tone was closer to being accusatory than inquisitive, a tone she used with my mother but never with me. “Grandma, don't push,” I said, and as I did I heard a tone I had never used with my grandmother, but push she did, and before the end of her next sentence I was out the sliding glass door, coatless, gripping the metal porch rail with near-white hands in the January air, breathing hard and crying harder. Clouds of exhaled breath clustered above my head like the dialogue balloons of my prayers: Please please don’t let me say anything that will hurt my grandma. Grandma knew when, and possibly how, I left home but she didn’t know why, nor why it’s been my auntie and not my mother who fulfilled the role of mom for me. If alcoholism wasn’t a topic for family discussion, and it wasn’t, then certainly depression and suicide weren’t, and this wasn’t the time or place to go prodding that herd of elephants. As I prayed to whatever god might be listening and talked aloud to myself, I found the winter air both bracing and calming. It drained the heat from me and from my impassioned exit. Soon I was back on the black and white and khaki “I’ve-just-got-to-replace-that” shag carpeting, hugging and reassuring my grandmother. Next I’m hearing words, my words, as if someone else is speaking them. “Grandma, I had to make some difficult choices at a very young age, and now I'm living with the consequences.” And just like the grandma I used to know, she doesn’t question, doesn't press. We hug each other some more and I start to cry. I look at her, tiny in my arms. 

“You know what I wish? I wish I was a little girl again and you were my grandma, taking care of me.” Mornings in Grandma's kitchen meant sitting at Great Grandma's cherrywood dining table in front of a bowl of hot oatmeal or cream of wheat with a raisin smiley face carefully laid on top and Grandma standing next to me with the honey bear, singing, “Honey for my honey?” Afternoons were spent sewing for my dolls, baking pies or cookies, and ironing Grandpa's “Kleenexes”. So much older now, this woman says, “I'm still your grandma,” but I am so tall that it is her face buried in my chest, not the other way around, and I feel her little bird ribs as I lean into the hug. 

On the night before, I lose count how many times I get up with Grandma. Her stomach hurts. She’s cold. She can't sleep. She has pain, undefined, indefinable, unspoken, unspeakable pain. Then there are those tiny, insistent animal sounds. I pull her nightgown all the way down, place the heating pad at her belly, snug the covers up tight under her chin, pat and stroke her until she grows drowsy; but late into the night, the long night, I must remind myself that this is the grandmother of my childhood, the grandmother who fell asleep reading to me at nap time, the grandmother who salved my sties, buttered my burnt fingers, and listened to me scream on the couch for days on end with countless tonsillitis-induced earaches. That she could not comfort me then is no matter, just as it is no matter that she now refuses pain medication and, eventually, refuses to let me comfort her at all; it is my job to be kind. 

I wonder what parents do-- good parents-- wonder why it was so easy to be loving with Jose, even as he became like a child. I do not think then of the time I had to cook for him and listen to him find something wrong with each dish, the final straw being the quesadilla. Because I am not a cook, I had followed his mother's actions exactly, even though I thought a quesadilla needed more cheese, which is how I had made my own. Jose tossed his quesadilla onto the blue plastic tablecloth. “It’s no good,” he said. Then, to my complete surprise, this coaxing voice: “Now, Dina, don't get mad.” 

I did not dare move or speak. In fact, I was barely breathing. I hadn't known I was angry and now that I did . . . I kept breathing. Finally, I put my quesadilla on Jose’s plate and said, “This one has more cheese.” He ate. When he was done he said, “Do I make you crazy?” I thought about that a moment, and then I told him the truth. “Sometimes.” I tried to relax my insides, tried to stop the pushing sensation that comes whenever I hit my limits-- God. Damned. Limits.-- tried that day with Jose as I would later try with Grandma, as I always try, to pretend I have no limits to my patience, no limits to my energy or my abilities. Then I returned the question. “Do I make you crazy?” Jose sat with that a moment. I don't recall whether he actually responded, but from the length of his pause, I’m pretty sure the answer was yes. “That's okay, that's normal,” I said. “We've never spent this much time together.” It wasn't just that I was cooking for him, something I don’t even do for myself and dislike in the bargain, it was that I was caring for my friend all day long, all his needs, just like Grandma had once done for me. I was being that thing I’d said I would never be, a mom. To Jose I said, “We're learning whole new things about each other,” and silently to myself, things we never wanted to learn. 

At Grandma’s, the cartoon my mother hands me-- Lyn, I called her then, Mother when we were face to face-- shows a disheveled woman encircled by her children. A baby clings to her leg but what she cradles in her arms is a rifle, an automatic assault rifle. “Now slowly, very slowly,” she says, “hand over all your Prozac.” Lyn hands this to me as she and her sister prepare to slip through the sliding door and desert, leaving me to baby-sit-- their word, not mine-- while they spend the night making the new apartment so pretty Grandma will forget she doesn't want to go. Lyn laughs her isn’t-it-hysterical laugh: high and tittering, nose wrinkled, teeth bared. When I look at the cartoon what I feel is that confusing amalgam of duck-and-run side by side with stand-and-fight; this is the prison cell of my childhood. I move my lips into the obligatory smile. No teeth. 

I am to baby-sit because the whining, the clinging, the refusal to take responsibility, the inability to let go of the pain, these are things that Grandma’s daughters do not recognize as being a part of the woman who raised them. Cannot recognize. I see the pain as being in her bowel and think it most likely gas, but I know this is not what hurts Grandma so. She thinks she is going to die, though she will not say it. While for me the pain is a symptom of the body recovering from bowel surgery, for Grandma it is the symptom of a body gone bad: gone bad though she spent her life doing everything right; gone bad though she always ate nutritious foods and never drank; gone bad though she worked hard and was the good daughter, the good sister, the good wife, the good mother, the good friend; gone bad though she kept the Sabbath and the Lord's commandments; and the fact that these acts cannot keep her alive and well, it is this that is killing her. It is easier for me to see this than for her daughters. I know this because I watched the same scenario half a lifetime ago when Lyn and Jan were often angry with the way their mother treated their own grandmother, but now they roll their eyes and grit their teeth as Grandma says,
No, I'll be fine.  
That's not how I would do it, but. . . . 
Well, it's not the best, but it's good enough for me.   
Oh, I knew you’d spend too much. 
You do too much; you shouldn't do so much for me.  
All  these words of fear, all these feelings of unworthiness, they hear as criticism and disapproval. They believe, as all good daughters believe, that if they are good enough, if they work hard enough, their mother will be happy, and if she is happy she will approve of them and what they do. I know this because I, too, am the good daughter. The good niece. The good granddaughter.

                 *   *   *

In college I earned money as an art model, stepping up onto a dais and dropping my robe to be captured in charcoal, ink, paint, clay. At the end of each term, art students would show their work in the gallery. Models were welcome, of course, but whether we attended was of no consequence and so I was surprised when an artist, a quiet man in his forties, personally invited me to the opening. 

“I drew you as Caesar,” he said, leaving me to imagine this was due to the androgynous cast of my face, but no. It was what he saw behind my face, behind the nakedness of every pose.  

“It's the purpose in your gaze,” he said. “Your ferocious will.”

          *   *   *

There is no word in the English language for what Jose and I were to each other. Maybe there is in his native Spanish, maybe in Russian or Italian or Greek, but I don't speak those languages. In fact, when I try to explain our love for each other, it feels as though I don't speak any language at all, not coherently. I told my auntie that Jose was like a brother to me, for it was through his friendship that I finally understood what it meant to have a sibling, though I was raised with two. I said the same to Jose's father because I knew it was a relationship he would understand. 

The winter following Jose’s death, I escorted my grandmother on a reprise trip to the Chicago neighborhood of her youth where a relative said to me, “So if he hadn't been gay, you would have married him,” and I said yes. I said yes because she was old and ill and kind to me, yes because she desired to understand, yes because I didn't have a better explanation; I’d never felt the need to explain it to myself. I can say that I would have died for Jose, but it's easy to say such things and hard for others to know whether this is just so much hyperbole. I've been told it sounds like I was a mother to Jose, and in the end I was, although in my case I may have been more grandmother, since this was the loving role I understood. More than once, as I talked about him in the year after his death, Jose was mistaken for my husband, and I know it sheds no light to say that in many ways I loved him more than I loved my husband, though I did. Perhaps it is most accurate to say that Jose let me love him. He let me love him with all that my heart is capable of, a gift as powerful and frightening as life itself. I am still measuring its dimensions. 

Throughout the night Grandma’s tight, tiny animal sounds, sounds she can't believe I can hear, tag each shallow breath like a whimpering little sister. They say, This pain will kill me. Let me die. She is only seventy-eight. Her own mother lived to be ninety, healthy until the year before her death. Again I ask about the pain Grandma will not name. “I'm so tired,” she says, the words squeaking out high and fast, air escaping a child’s balloon. I fetch the Tylenol PM, water. This is the fourth time up, and it will be the fourth refusal. My compassion has thinned to a cotton cloth scrubbed to threads. “Please, Grandma.” 

“Don’t make me take those. I don’t want to take any more pills. I'll sleep,” she says, “I promise.” I put my head in my hands, fingers digging into my scalp. “Grandma, why are you fighting me?” She is too frightened to answer. “Go away. Leave me alone,” she says. So I cap the bottle, along with my patience, and return to bed to listen to the animal sound of her pain. I just want one easy thing.

I once had a tabby-striped-and-white-splotched cat named Squig. He squiggled. I used to cradle him upside down like baby just to feel the way his padded cat feet would connect with and push against every part of me he could reach, cheek, chin, nose, throat, chest, pushing with a gentle but perfectly clear, No! At five o’clock in the morning, Squig would ring the bell that hung from the handle of my back door: Please? Please please please? At six, after I’d removed the bell, Squig would scrape at the door panel: Now? Now now now now! Seven o’clock would find him patting my face with his paws, soft, cold, gentle; insistent. I understood. My husband, the early riser, was gone, but the cat still wants what it wants what it wants. Me too. I just want one easy thing. 

The next time Grandma wakes, it is the whimpering and not the call of her voice that rouses me. With each exhalation comes a series of short high throat sounds. Not a cry of despair nor a moan of physical pain, these sounds-- at once both staccato and drawn long like a country western guitar-- carry the twang of a whine but rise from some deeper place. When I get up, I notice I've begun to lose my sense of time, but for the lighted hands of the alarm clock on the floor (the nightstand and everything else in the room already spirited away), I'd have thought myself to be in a long dark stretch of my imagination, my inner self on a bad day. As I rise, I remember the summer Jose died. 

Twin beds occupied this empty room, along with the rest of my great grandmother's early American bedroom set. Grandma slept next to me that summer, lying in the adjacent twin, her mother’s bed, just as Grandma’s second husband had slept next to her before he was placed in adult foster care for those with Alzheimer's. That summer, too, soft sounds-- cut short at each breath-- snuck out from Grandma's down-turned mouth. She could not understand why she had pain, and so she could not let it out. You cannot let go of what you won’t own that you have. That much life has taught me. 

That summer, before the place in my heart that cradled Jose had cooled the way death cooled his pillow, I found myself driving down the I-5 corridor to do as I was told: bring Grandma home, feed her, cheer her, sleep next to her at night. It wasn’t until after dozens of times rising in the dark to help, just as I had helped Jose, that I realized I could no longer rise. My ears heard my grandmother's cries, soft little bird cries. My muscles did not move. I lay pinned beneath the weight of summer blankets and my own grief, suddenly in a world without my dearest friend. I lay there knowing that while I had known how to comfort him and how to make him content, I could not keep him from dying, could not keep him from leaving me. And now, though I put all my heart into caring for my grandmother, I could not do even as much. She would not be comforted. Could not. 

This time around it’s winter and Grandma and I sleep in separate rooms, she in the double bed in the spare room because it is closer to the rest of her rambling house, I in the one twin left behind. I make my way to her by the nightlight, fighting a resentment I am surprised to feel. “What's wrong, Grandma?” “Oh, I'll be alright.” Whimper. I tell her to lie on her side and I rub her back. It reminds me of rubbing Jose's back in the middle of the night. I wonder why tiredness is the only thing I feel, why I find it hard-- third time up tonight, third time caring for Grandma when she has been too ill to be alone-- so hard to feel the love I have for her instead of annoyance at being awakened but not allowed to help. Grandma is still tense, still whimpering, so I tell her to sit up and I lean her into me. I hold her close, her head on my shoulder like a too-tired child, a child not sick enough to be silent but too sick to form words, a child not understanding what this pain means, why it won't go away. I hold her for an hour. The whimpering, the soft dying-bird moan, I hold those too. And try to let them go. 

Bill and Dina Schuster, my maternal grandparents, used to pack their two youngest children-- my uncles-- my great-grandmother, my younger sister, and me into their 1963 white Chevy Impala and go for Sunday drives along the rocky Oregon coast. We stopped at all the tourist attractions, Devil's Churn, Devils' Punch Bowl, Devil's . . . whatever, and there we'd watch the water, the rocks, the starfish; one in a churning fury of foam, the other two immovable, stoic. As we watched, I'd wonder about the tools of the Devil, dragged out West perhaps by some unfortunate immigrant escaped from Hell's Kitchen. Though Grandpa was not a religious man, golf being the closest he came to communicating with God, Grandma was raised in the Seventh Day Adventist church, and so each Saturday found my sister and me in Sabbath School singing hymns about God's fury and the wages of His wrath. I was singing just such a hymn when I realized God considered me a sullied sinner, as unredeemable as the Devil. Then and there I decided His attitude was no better than my mother’s perennial refrain of Shut-up-or-I’ll-really-give-you-something-to-cry-about. Tears had been the only words that sang out to tell my mother what had happened in the room at the end of the hall that day; just tears; and singing that fiery hymn of fury, I shut God out of my five-year-old's heart forever. The closest I came to God as a child, a loving and joyful God, a just God, a God who knew when you were in pain, was my great grandmother. Grandma's mom. Completely Italian, from an island in the Old Country, Grace Bertocchini was a tiny woman growing tinier by the year despite the orthopedic hose and dress after dress after dress, layered as any homeless woman might for warmth. I can still see her standing on the basalt boulders of the jetty, ocean water hurling itself against the rocks and into the air; Grandma B. is laughing, her small worn hands turned up as if to catch the first snowfall in the Chicago neighborhood where she raised her children. All around her the starfishes and anemones vise-grip the base of the jetty and her daughter is yelling, Mom, come down from there! You’ll break your neck. But Grandma B. continues to face the sea and the spray of the surf, standing lightly in her black lace-up Mary Poppins oxfords, gravity barely holding her, laughing the laugh my grandmother inherited. Not just a sound. Not merely a response. A song. 

The minister took the podium. Behind him, in a recessed rectangle the size of an open grave, hung the painting of a white-skinned, brown-haired, blue-eyed Jesus, his robes flowing, palms raised toward the heavens. The minister, brother to the woman in the blue damask coffin at his feet, stood and looked out over the crowd. He took a breath. "A few minutes after Dina died, I called her apartment and talked with her granddaughter, her namesake, and she told me that my sister's last words were, 'I am at peace.'" The woman in the coffin was not only my grandmother, she was the woman who patiently taught me how to tie my shoelaces, how set a perfect dinner table, how play hymns on the piano; she was the woman who chose me, the eldest grandchild, to travel with her after Grandpa died and visit distant but dear family members whom no one of my generation had yet met; she was the woman by whose side I sat for five days in the ICU of Sacred Heart, holding her hand, telling her all my favorite childhood memories, plying her with questions she could not answer except with a tiny nod, maybe a grunt, mostly with more sleep; the woman in the coffin, who died in my arms, spoke no last words. 

"I don't know about you," the minister intoned, "but that comforted me. 'I am at peace,' she said." 

I had told my granduncle it was a peaceful death. I told everyone that. They didn’t need to know that I spent the final minutes of my grandmother’s life refusing scans and tests and needles, that her last breaths were all sent away with that wounded animal sound, that ocean foam exuded from her nostrils and into the oxygen mask and the nurses stood silent as I cradled her tiny body and cried out, What’s happening? What’s wrong? Her death was peaceful in its way; I made the phone calls, told her everyone was on their way, and she let go. For Grandma, family was everything. She wanted the family together. She did not want them to see her die. 

"Do you think," said the minister as I took slow, deep breaths and my husband held my hand very tightly, "that this is because she knew her Heavenly Father awaited her? Do you think that this is because she knew the promise that Jesus had made, 'I am the resurrection and the life'? I do. This is a promise in which we can all share. All we must do," and here he paused for effect, "is to take Jesus into our hearts." 

Having a minister in the family, an Italian immigrant family, is a kind of coup de grace against the Devil, but I saw this role bring my granduncle a good deal of worry. His kids were standard family gossip when I was a teenager and by the second trip Grandma and I made to the old neighborhood-- right after Jose died-- this uncle was purposefully praying for most of the souls in our family; those who do not accept Christ and practice Seventh Day Adventist doctrine are barred from heaven. It was for this very reason-- the salvation of my soul-- that my granduncle sat me down one fine Chicago day, and he told me so even as he said, with what seemed his very next breath, how Christian-- how like Jesus-- my conduct had been when I cared for my friend who had AIDS. In my uncle’s voice I heard both the ring of righteous authority and a dissonant chord of awe; I had dared to touch a man who carried the modern day leprosy. I stopped him mid-sermon. “It’s okay, Uncle Gil. God and I have no quarrel.” My quarrel? That’s with the world of man.

Two more friends died of AIDS the year after Jose. Garrett went first, as we all knew he would. He died without his God-fearing parents knowing how ill he was, without having them at his side, and certainly without them knowing he was gay. He took a turn for the worse the week after my grief group disbanded. Frank and I went to the hospice that night and there we found ourselves drawn into the dining room by volunteers. House rules: anyone who arrives at dinnertime gets fed. It’s one way that the living, the soon-to-be survivors, can be nourished. It’s something your mother (or your grandma or your auntie) would do for you. After dinner, Frank and I watched Garrett sleep. We heard the litany of drugs withdrawn to see whether the doses were too high, whether they were responsible for his constant sleeping, his sluggishness when awake, his inability to talk. But there was no change. No diagnosis. No new opportunistic diseases. Just this from the nurse who asked us to step out into the hallway: “His body is shutting down.” This is what happens to the very old. Garret was not yet 35.

The night before Grandma died, I quizzed the nurse-- Is she dying? Is she dying right now?-- not knowing that a hospital nurse would not talk to me the same way as one who worked in hospice. I knew about the dying process. I knew it took anywhere from hours to days to weeks. Originally, I had planned to stay only a day and a half --I had appointments, clients, commitments-- but I kept prolonging my stay because I could see that Grandma had changed: withdrawn, lethargic, difficult to rouse, unable to respond except in the most rudimentary way. I stayed because the change had occurred the night my uncle left, the night I arrived. That first night, Grandma knew me and was happy to see me, though the several strokes made it difficult for her to express that happiness in words. When I left for dinner with my uncle she said, “I love you,” three words, but in those three words I heard something more. “I love all my grandkids,” Grandma would say to me, making sure God knew she didn’t play favorites, and then she’d shake her head slowly and look at me with eyes bright and soft. “I don't know why you're so special,” she’d say, “but you are. You're so special.” The next morning at the hospital was different. “No,” was all Grandma said when I told her I was glad to be there. “You're not glad I'm here?” “No.” No other response. To anything. When the nurses prepped her for another CT scan, she’d respond if they pressed her, but when one said, “Isn't it great that your granddaughter Dina could be here?” there was only silence. All the next day, she responded to almost no one and not at all to me. The doctors took her off the morphine and then off painkillers altogether: still sluggish, still sleepy, still difficult to rouse. They scanned and x-rayed her brain (Had the stroke expanded?) and her stomach (Had the surgery site become infected?). No change, no news, and no talk of the dying to come. Next day, I felt Grandpa's presence in the room and I called my auntie. 

“I don't think her heart's in it.” 
My aunt was firm. "The doctor said her body is still strong.” 
“But her will is not.” 

At this my aunt began to cry, a rare thing. She can't come and have her mother say she doesn't want her there. I cleared my calendar. It’s what a good daughter would do. And while I could not-- would not-- admit this was hard for me, not even to myself, my body had its own animal sounds of pain. The next day, apropos of nothing, I heard myself say to the nurses, “My best friend died a year and a half ago.” The night before Grandma died, a substitute nurse was on duty. Tall, healthy, and professional, he looked at me and said, “No, she's not dying yet. But I would start asking the difficult questions.” He meant nursing homes, feeding tubes, life support. “Grandma,” I called out in a stage whisper later that night, soft because of what I had to say, because it was nighttime, but loud because she did not respond unless the doctors yelled. “Grandma! Are you ready to die?” 

As a child I gave funerals. It started with a mouse found in my grandmother’s back yard, its pink feet curled in submission. I laid it on a bed of grass in my red and blue plastic dump truck, a vehicle just roomy enough for the occasion, and spoke in soothing tones about not being too upset by its fate as I petted its pussy-willow fur. In grade school my first best friend and I buried dead butterflies, beetles, and bees. Once we dug through my toy box to find a long dead moth and planted it in the ground with a twig cross and pilfered marigolds. Death was on my mind a lot as a child, but the first time I felt death as a fact, not simply something that happened to possums or pets or distant relations but a sucker-punch reality that happened every day to people everywhere, was the fall preceding my thirtieth birthday. Across the street, in front of the duplex of an impeccably dressed neighbor, an ambulance arrived and departed without siren or lights. His "nephew" had died, this closeted man said, as another vehicle hauled away a full-size hospital bed. Come winter, the childhood best friend of one of my uncles, a man whom I also thought of as an uncle, succumbed to AIDS. Then it was the sudden death of my thirty-year-old brother-in-law, cause unknown, followed directly by my widowed sister's best friend, AIDS, each death touching the perimeter of my life, at some distance to be sure, but each touch leaving a mark and each mark defining another point along the horizon, that indefinable intersection between heaven and earth. Somewhere between the unofficial uncle and my brother-in-law, Jose called me-- “I have AIDS”-- and that's when it happened. I began to hear the tread of Death just as I heard the trains in the switching yard behind my house, not so much a sound as a rumble deep in my chest, something that rearranged the very molecules of my being. I considered what I knew of death. My great grandfather died the winter preceding my fourth birthday. My parents had brought the family from a snowy town in Washington to a rainy one in Oregon for something called a funeral. When I asked where great grandpa was, my mother said he went away. When my father went home to the Army Base in Washington and did not return, I asked my mother where he was. Once again she said, “He went away.” I didn't know where “away” was, but I now knew you never came back from there. That was death.

When Frank and Jose split up, Frank waited silently for Jose to say, Just sell the house and come live with me in the city. Just sell the house, Frank, I love you. Frank waited and waited and waited. Months after Jose's death, Frank was still waiting until, finally, on a warm September weekend, I picked up the phone and in a small faraway voice I heard, “Where'd he go?” 


          *    *    *
Darkness, speed, sound. After Jose’s death I couldn’t get enough it. I’d find myself tearing down the Gorge highway in the Miata at midnight, top down, music up; singing, crying, screaming. 

          *    *    *

After the Sequeira family took the drawings and the paintings, the small appliances and the big screen TV, it was left to Frank and me to sort and dispose of the bulk of Jose's possessions: books and bed sheets, furniture and food, underwear and kitchenware. He had so many tall bookcases filled with so many books, books in Spanish and books in English, books by Tom Spanbauer, Renaldo Arenas, and Jeannette Winterson, books by Carver and O'Conner and Kundera. He had no room left for even a small bureau, or perhaps no use. Instead, he corralled his less important possessions into cardboard boxes: sweatpants, toiletries, underwear, pajamas, socks, all got tossed into small boxes stashed in the bathroom cupboard. The socks were divided into lightweight and heavy, the kind to be worn with slacks and a jacket and the kind to be worn with jeans and Birkenstocks. When going through a loved one’s possessions, it is unpredictable what the heart will latch onto. After my grandmother died, all I wanted-- what I absolutely had to have-- was her flatware, the forks and knives and spoons that had fed me since childhood. They balanced so perfectly in my hands. When Jose died, it was his bath towels. Their rich colors, fuchsia, turquoise, the yellow of Vincent Van Gogh, and their thickly textured fleece had become for me symbols of the beauty and richness of Jose's life. These towels spoke Jose's name to me as surely as his favorite shoes, a lock of his hair, or the ever-present (“WherEVER-did-he-get-that?”) plastic, glow-in-the-dark crucifix he wore around his neck. These towels had the lure of a favorite song, a long ago remembered scent. So, when it came time to sort Jose’s belongings and Frank headed for the bathroom, believing it would be the least traumatic place to begin, I burst into tears. 

It took me three days to tell Frank that I could not bear to give up those towels. In the end, we finished sorting all the books, all the clothes, and all the artwork before we started on the bathroom. We began with the socks. Frank and I each put on a pair. Then Frank put on Jose's shoes to feel his feet walking where Jose had once walked. For a year or better, Frank and I walked around town, into the homes of our friends and the homes of Jose's friends, into the California homes of Jose's family, wearing those things we could not part with: the blue socks with the hole in the sole, the black and white scarf Jose wore on his last birthday, the gold loop earrings, one for each of us. 

The night before we moved her from her home, Grandma rolled over onto the heart monitor that hung from her neck, pressing the button that sends the alarm, and I awoke to a foreign sound. It was not the animal sound of Grandma as she slept. It was not the joyful sound of laughter-- my own laughter-- something I once woke to as I lay dreaming after Jose died. I never recalled that dream, but I do recall the dream I had before I woke to that foreign sound at Grandma’s. I am driving my car-- that's dream imagery for being in command of your life-- driving my car, or trying, and I can't because there's a man in the road blocking the way. Crazy, loud, he's yelling at me. He moves toward my 60-something Chevy convertible, nabs my groceries from the back seat, slaps the fender and yells, “Hey! You hit me!” I must stop and investigate even though I know that what I really need is to drive on down the road. The man's a coward. To my face he equivocates: “Problem? No problem. Everything's fine.” Soon as I turn my back I hear him swearing, baiting me. I turn toward him: “Problem? No problem.” Turn away: “Except you, bitch!” I am forcing myself to drive on and not set loose my temper when that sound awakens me. That . . . foreign sound . . . dream sound . . . get-up-get-up-you-need-to-wake-and-be-alert sound. I do not know this sound. It is soft and I have been sleeping hard. I struggle up, head toward Grandma's room. That sound. “Grandma?” She stirs. She's finally asleep and I don't wish to wake her. I listen. The sound has disappeared. “Grandma? Are you okay?” She rolls back to look at me, makes a sleepy guttural sound, a sound without consonants, a sound I will come to know intimately, and so I tiptoe away into the TV room and sit on the single remaining piece of furniture, a straight-backed chair, and shiver. A machine sits on the rug, blinking red, and soon I am staring at it: Why is that light blinking? Is that light supposed to be blinking? I turn my head and listen . . . nothing. I stare at the blinking red light, the one labeled RESET . . . nothing. I go back to bed. I am certain the coward in my dream is me, me ready to lose my temper with Grandma. I know I need sleep. I need to sleep to remember what the dream has told me: Just ignore that voice that whines, “Why do I have to do this?”

I crawl into bed with all my clothes on, lying under the three blankets and the quilted pink bedspread like a patient under a lead apron on an x-ray table. I am half a breath into sleep when the phone rings. A man on the other end identifies himself as Doug from the heart monitoring service. Did I press the button? No. Grandma must've rolled over on it. I'm ready to hang up, but I can tell from the silence at the other end that something else is expected. I say, “Should I go check on her?” Before Doug answers, I hear the sound of my own words. I have just asked a stranger on the other end of a telephone line whether he thinks I should check on my grandmother now that I know her heart monitor has been activated. I know she's okay. I was just there. Still, I think of my kid sister in her I-don’t-do-drugs-I-only-sell-them phase. Her only job the night she stayed here was to be with Grandma, to hold her hand in the middle of the night if she got scared. But my sister slept through it. She slept through the sound of Grandma and the sound of the heart monitor-- a sound no one told us about-- slept through the sound of the ambulance, the sound of paramedics clomping up the stairs and in through the sliding glass door, and the sound of Grandma being wheeled away in the middle of the night on a stretcher. I don't give Doug a chance to answer. 

Within days of moving her into her new apartment, Grandma was back in the hospital. More surgeries, and this time, several small strokes. The day before she died, Grandma rallied. That day had me alternately panicking and dancing over every little thing. When I detected a fecal smell I ran for the nurse, remembering the smell of death, but the nurse was practical. She looked under the covers. “No bowel movement. She must've passed some gas.” I knew the details of the stomach surgery and the bowel surgery that came before it. I knew we were waiting for something called bowel tones. So, gas was good, yes? Yes, said the nurse, smiling. I praised Grandma for passing gas. Then, because I was so happy, I did a little dance. Not a real dance. I didn't actually move my legs or arms. No, the dance was more like what happened the time I received bourbon chocolates for  St.Valentine's Day. One bite and I was overcome by delicious paroxysms of joy in the form of a neck-snaking, shoulder-swaying, throat-moaning, mm-mm-mm little rumba dance of pleasure so complete that I was not conscious of it-- until I opened my eyes and saw the stares of my dinner companions. But Grandma didn’t mind. Afterward, Grandma was moved from the hospital bed to sit in a chair for the first time and there I saw her move her left hand-- just a twitch, really, but she did it twice!-- and then she rolled her shoulder on the same side, the side she had ignored since the stroke. Once again I praised her and did my little bourbon chocolate dance. Then I joked with her, “Did you ever think you'd be praised for passing gas or scratching yourself?” But it was when I came back from talking to the neurologist-- and chewing him out for unceremoniously marching me into the hallway and ordering me to wait there until his examination was complete-- it was then, when I told Grandma that after talking with the doctor for fifteen minutes I knew absolutely nothing more than I had known before, it was then that she smiled. Okay, tried to smile, but I knew she knew he was an ass. The corners of her mouth twitched up so slightly that I probably saw it more with my heart than my eyes. Still, it was a reason to clap and laugh out loud. 

The day Grandma died was the first day she asked me to stay with her. Not in words. Throughout our days together in the hospital, I had often said to Grandma that whatever she needed she had only to tell me, that I would be listening with my heart as well as my ears and eyes. After the neurologist left, Grandma asked me to sit next to her and hold her hand. I could feel her sadness. Instead of going to lunch when I usually did, I stayed and waited for the parade of doctors. My head said gather information and solve this puzzle; my gut, the smarter of the two brains, said, She's dying. But practitioners of medicine interact only with the mind. By three o'clock I had helped the physical, the speech, and the occupational therapists, and had quizzed every doctor caring for my grandmother about causes, prognoses, and best- and worst-case scenarios. When I finally got a chance to eat, I let myself take a full hour, relaxing over my meal for the first time since I’d arrived. When I returned to the hospital, Grandma was asleep. It was a sleep she never fully roused from again, except to speak the only sentence she would utter besides the “I love you” spoken at my arrival. She was lying with her good ear up and so, knowing how she had taken to reciting everything she ate and remembering the fun we used to have when she had money enough to treat us to lunch, I told her all about my meal. “I wish you could have been there with me,” I said, and Grandma, eyes closed, voice groggy but clear, spoke her last. “I do, too.” 

Too much is made of the love between couples. The first crush. The first kiss. The first time making love. Yes, I had a first crush, Danny Burnett in the third grade, a bad boy with big charm, black hair, and a smile like nobody's business. I had a first time, too; I wouldn't call it love. I do remember, however, the painful but delicious wiggling-a-loose-tooth-before-it’s-ready-to-come-out feeling of falling in love for the first time. Physical love. Love felt with the body. But as I look back on my firsts, revisiting them with eyes wide open to my failures and fantasies, I think my first love may have been Jose. I loved him fiercely, protectively, singly, and without question. I loved him from a place made not of fire but of light, a love beyond sexual attraction, beyond the ties of marriage or blood or birth. I can't tell you in so many words what this love was. All I can tell you is the story of our friendship. I can tell you that we had a connection as natural as breath. I can tell you that I watched AIDS eat away at him from the inside while people stood around on the outside and said, How can you do this? I can tell you that, even if I'd wanted to, I could not have been made to look away from or deny such love.  

After his death, I found myself faced with Jose’s unpublished novel, his many pairs of nonprescription glasses, his new cobalt blue dishes, his socks; things that spoke of him but were not him. I kept two pair of the glasses. One I filled with my reading prescription and the other with dark brown lenses. They aren't sunglasses, though that's what they look like and that's what I had intended them to be. As fortune would have it, however, the sunlight filtering through these lenses hurts my eyes more than if I were wearing no dark glasses at all. Still, on high gray days, the kind we have so many of in Oregon’s Willamette Valley, these lenses mellow the light. Gray becomes cream-colored-- the sweetest shade of white-- white becomes rose, and all things are imbued with that light-shining-from-within beauty found in black and white photos of gurus and ingénues and children starving in underdeveloped countries. It is the same light that radiated from Jose's face as he died his lingering death. Lyrical; impractical.

The final week of Grandma’s life was ice-cold and clear, a bright spot after the January snowstorms and before the February floods, both setting records for winter misery that year. I knew I was tired, worn thin. I also knew I was strong-- I counted on it. I did not know I could break. Would. Would break. For now, I existed in the lull of clear skies. During the day I did what needed doing. Twilight found me in Grandma’s Plymouth Horizon shuttling back across town to sleep in her showroom-perfect apartment. Dry-eyed and feeling small under that blank slate of a sky, I would think about the day, think about Jose, and the shifting sands of my marriage. At each stoplight I leaned into the steering wheel as into a lover’s embrace, tilted my chin up, and cast my gaze through both the windshield tinting of Grandma's car and the now brown-tinted glasses that were once Jose’s, and for myself I would create a sunset: the hovering sky, purple as thorn-pricked fingers after a summer’s day of blackberry picking, the sandcastle skyline drenched in iodine, the incoming tide.


All contents of The Movie Lovers / http://dinathemovielovers.blogspot.com/are copyrighted © and may not be used without permission from the author.

Sunday, July 6, 2014

The Movie Lovers Who's Who

Cast of Characters

Jose Sequeira
Main character; Dina’s best friend and one-time student; poet, novelist, and movie lover extraordinaire.

Dina Rozelle Barnett
Our storyteller; Jose’s friend, movie partner, and devoted caretaker, she is a force to be reckoned with. 

Frank Stovall
Jose’s former partner and one true love. 
After they went their separate ways, Jose used to say to me, “But there’s no one like Frank!”; in the end, Frank was once more Jose’s devoted partner, and primary caretaker. 

Sonia Sequeira
Jose’s mom; from Nicaragua, she speaks very limited English; she and Dina share a March 2nd birthday.

Cliff Barnett
Dina’s husband; loyal friend, Leo, would-be drag queen.

Jose’s Care Team: Corey Baker (of Friends of PWAs), Caterino Soto (Cat), Lupin, Kay Exo, and others.

Setting: Mid ‘80s to mid ‘90s, when gay men were dying in droves

Saturday, January 4, 2014

The Blue Fairy / chapter 5.5

This is where it all falls apart. This is where the world ends.

No matter how many times I do an edit of The Movie Lovers, no matter who volunteers to read the manuscript, no matter how focused I am, how clear my vision, how determined, somewhere between Longtime Survivor and One Easy Thing, things... just... stop. And there they sit, unmoved and unmoving. An ocean of years passes.

There is a scene in the movie A.I. in which David, a robot boy so human that he even loves, reaches the end of a long and perilous journey. David’s quest to become a real boy, a truly human flesh-and-blood boy, takes him to The End of the World where, at last, he will find what he seeks: the Blue Fairy. But when he reaches The End of the World, things are not as he had envisioned. There is no Blue Fairy, no magic wand, no hope of ever becoming a real boy and having his broken heart healed. Disillusioned, his quest abandoned, David lets go and falls into the sea. There at the bottom, in the center of a children’s park, stands-- miraculous!-- the Blue Fairy: she who is always kind, always loving, always welcoming, and now, always under the ocean of water that has flooded The End of the World, a plot twist of Biblical proportions. But the story isn’t done, and so David is rescued and put into an amphibious craft.

In the darkened theater I watch, breathless, my eyes as wide and hopeful as David’s, as the amphibious craft dives, swims beneath the park entrance sign, and settles at the feet of the bountiful Blue Fairy. Somehow, I think, somehow this is finally going to work. He’s going to be able to finish what he started with such fervor so long ago. And then I see the ferris wheel. I watch it snap, fall, settle... become a cage.

Just yards from the transformation he seeks, David is imprisoned. And there he must wait, ever patient, ever yearning, ever focused upon his heart’s one true desire, a desire that, seemingly, will forever remain out of reach. For years he waits-- and waits and waits-- to be something only another can make him. Human; loved. For this, David sits at the bottom of the sea
until all the sea anemones had shriveled and died.... as the ocean froze and the ice encased the caged amphibicopter and The Blue Fairy, too... a blue ghost in ice.... Eventually he never moved at all, but his eyes always stayed open, staring ahead forever, all through the darkness of each night, and the next day, and the next day. Thus, two-thousand years passed by.

Over the years, those who read the manuscript would tell me, inevitably it seemed, that The Movie Lovers was my story, a story of my own healing. This is not what I had envisioned. Certainly it’s not what I intended when I began the journey. For me, this is Jose’s story, the part of his life’s story that was our friendship, the amazing experience of love that grew out of it. For me, this is a story I am in, but it is not about me. Or is it? Perhaps those readers were onto something.  For each time I would start a full edit of the book, each time I finished Longtime Survivor and turned to One Easy Thing, the chapter in which I talk about my family, revealing some of how I came to be the person I am and the toll that being so close to death took on me, something would intervene. A cage would drop, separating my heart’s desire to move forward from my mind’s capacity to bring the story to full completion, and there The Movie Lovers would sit, unmoved and unmoving. These are the years I spent beneath the sea, eyes always open: gazing into the darkness of each night, the blue ghost of The Movie Lovers each day, and the next day, and the next. Thus, two decades have passed since Jose died and I began writing his story. Our story. My story. 

A century mark, purported to be The End of the World, has come and gone. Humankind remains. Here in the 21st Century, we live in a social media Never Never Land where we drink from a constant stream of the present. For the generations born during the ‘80s and ‘90s, which was the height of the plague, AIDS is ancient history and The Movie Lovers a period piece, and yet; just as David waits patiently at the feet of the Blue Fairy, the beloved who is forever smiling, forever welcoming, forever awaiting him; this time in history, this story of love, is one I cannot abandon. 

And so I leave you here where I stand, poised on the threshold of the next chapter wherein The Movie Lovers stumbles over the edge of the flat earth, falls. It is the place where healing-- or the possibility of healing-- needs to happen. But the truth is, I did not heal. I have not healed. I may wait millennia to be healed. I have time. I will be here when it comes. 

All contents of The Movie Lovers / http://dinathemovielovers.blogspot.com/are copyrighted © and may not be used without permission from the author.

Saturday, January 22, 2011

Longtime Survivor (HIV University) / chapter 5

Just like a whisky bottle drained on the floor,
She got no future, just a lot to endure. 
Broken Bells
"The Ghost Inside"

In 1995 I had myself tested for HIV. Long before that, I knew to use a condom, to stay away from intravenous needles that weren’t fresh from the package, and to treat blood as a biohazard. The day before I received my test results, I wrote a letter to one of my sisters. I didn’t grow up with this sister, nor anyone in my father’s family, but less than two months after my best friend’s death I found myself on the Oregon coast with the whole family: dad, stepmom, both sisters, their husbands and kids. I arrived at the family vacation awash in the grief with no name, neither orphan nor widow; and the crush of living in close quarters, the push to have fun with people I loved but did not know, these slammed up hard: grief rear-ending family fun. When I felt anything at all it was the sensation of being packed in layers of cotton batting and ice. My sisters, so young, neither within spitting distance of thirty -- or twenty-five, for that matter -- death had never touched them. I could not speak my feelings to them. Hell, I could barely contain those feelings. I tried. It wasn’t long before my husband put me in the car and drove me up and down the coastline while I screamed.

Before going to the coast, I had called a friend. “How can I do this? How do I talk about Jose? How can I not talk about him? They’re Seventh Day Adventists. I know how the church feels about homosexuality.” When this friend told me to bear witness, I found myself remembering the beauty of Jose dying:
eyes closed, chin
lifted, cheekbones carved and wood-brown
translucent as petals, lips
rounded, reaching
for water, eager
almost singing.
At the coast each night, I lay awake in the shared room where my husband, my father, and my stepmother lay sleeping. Each night I slipped out of bed, got my pictures of Jose, and fell asleep with them spread around me. I didn’t know what I was doing. This was a time in my life when my favorite picture was of my best friend dying: light caressing his cheekbones, illuminating his brow, his eyes rolled heavenward; here Jose is retablo, altar, ecstatic saint; here he is Christ reclining before God in the final hour, terrific to behold. I was stricken, possessed of a grief that upon my return home had me sharing an eight by ten glossy of this with all comers, exclaiming its beauty. Frank and me both.

Nearly a year later, as I waited for my HIV results, I composed that letter to my sister. I didn’t know it at the time, but I was writing to do what I hadn’t known how to do at the coast: to find, or maybe to create, a space for the emotions I felt and also to create a space for my friends, my dead and dying friends, whom the world so readily condemned or simply denied altogether. That was a part of the world I could not understand but I think on some level I understood that, as represented by my father and my sisters and my stepmom, this world did care about me, and so perhaps it could care about those for whom I bore witness. To my sister I wrote, “Another friend has died.” I had been practicing that phrase. From the time Jose died, I practiced saying it to those whose lives remained unmarked by AIDS.

To my sister, a nurse, I wrote that my friend Frank had only nine T cells left. This sister worked on a small reservation in rural Idaho at the time, so I wasn’t sure how much she knew about T cells. The T cell is a principal type of white blood cell. Its job is to identify foreign antigens in the body and to activate the other immune cells. Each human body starts out with approximately 1000 to 1500 T cells. When the body gets down to 500, it's in danger of contracting thrush, a fungal disease that erupts in a white, yeasty coating on the throat, inside the mouth, on the tongue; usually accompanied by fever and diarrhea. At 200 T cells, the body is in danger of contracting pneumocystis pneumonia, a standard indicator of AIDS. I told my sister that a count of 200 T cells is what the CDC -- the Centers for Disease Control -- defines as AIDS, that when you have HIV and your T cell count dips below 200, you’re considered to have AIDS whether or not any opportunistic diseases are present. I hoped these numbers could convey to her just how scary it was to know that Frank was down to nine, a tiny committee of nine T cells to fight off all infections. I didn’t tell her that we had named them. Silly names like Tabitha and Endora and Jose Jr.

As I wrote, I found myself remembering when Jose had only two T cells. He gave me the news over the phone, pronouncing his fate with the astonishment of a scholarship boy discovering he’d gotten into an Ivy League college.

“You have two?” I said. “What are you going to do with them?” It was the same voice that had popped out of me when Jose learned that one of the opportunistic infections was causing his brain to shrink. After that, whenever Jose forgot something I’d say, “Well, what do you expect Jose, your brain is shrinking” and we’d laugh. Longtime survivors say attitude is everything. People who give up die.

When I began writing The Movie Lovers, less than half my circle of friends were gay. Used to be that most of my friends were gay, but there’s been some attrition. That’s where my education began. My AIDS education. For most of mainstream America it’s fair to say that AIDS education didn’t get rolling until the 1994 release of Philadelphia; until that time, Longtime Companion was the only feature length film to deal explicitly with the subject. In 1990, the same year it hit movie theaters nationwide, Longtime Companion aired on public television and that’s where I saw it, right here in my Portland Oregon living room with my husband, Cliff, my best friend, Jose, and his partner, Frank. The movie closes on an empty beach on Fire Island, the same beach that is packed belly-to-back with laughing, tanning, cruising gay men at the beginning of the story; now it lays as abandoned as the rumpled sheet of an unmade bed. A woman and two men walk across the sand, just the three, talking about those who’ve died, and as the credits roll a place called the Post Mortem Bar appears, repopulating the scene with lost companions. Afterward, this ending was all we could talk about, and odd as it sounds, I believed our conversation focused on this scene because we found it to be so moving, not because we thought any of us would ever end up there. At least, that’s not what I thought. Not then.

When the story line in Longtime Companion ends, 1989, I was still half a year away from meeting Jose. I was maybe a year away from his long distance phone call: “I’m gay.” Next sentence: "I have AIDS." Not HIV positive. AIDS. Gay I'd already figured and I was touched that he wanted to make an official announcement, but AIDS . . . That knocked the breath out of me.

When the story line in Longtime Companion ends, I was still two years away from Jose sitting on my couch, ashen, silently contemplating his death. I was over four years away from the time when Frank would ask me if I thought Jose’s memory was deteriorating and I would lie -- automatically, just the way I would answer Jose when he asked the same question for the third time in less than five minutes -- automatically and without question. By then Jose had contracted CMV -- cytomegalovirus -- among other things. It had lodged in his brain and was slowly closing things down, a kind of Alzheimer’s of the boardwalk at the end of the season.

Longtime Companion came out just after my 30th birthday. The story itself begins ten years earlier, on a sunny May morning in 1981, and opens to a tableau of young, buff, beautiful men reading a New York Times article, the first about the new “gay cancer.” Immediately each of these men calls his best friend, his lover, his partner. The straight, single woman in the movie calls her best friend: “Did you read the paper this morning?” At the time, Kaposi’s sarcoma was so rare only doctors had heard of it. And while we all pretty much know what getting Kaposi’s means now, back in 1981, summer on a Fire Island beach was still carefree and, well, gay.

In the summer of 1981 I was twenty-one and had just finished my first year at community college. I don’t remember reading about a “gay cancer.” That fall, the CDC declared the disease that would come to be known as AIDS to be an epidemic, but I didn’t hear about it. I suppose it’s human nature to need a particular individual, a face, someone to be drawn into our orbit or we into his, before we can care about an entire group of individuals. At that time there were no openly gay men in my circle of friends.

Just two years later, in the spring 1983, the men in Longtime Companion have moved on from reading about a cancer that an unlucky few might develop to talking about a disease called AIDS. They know it’s sexually transmitted. They alternate between worrying and reassuring themselves about past behavior. They practice safe sex. In the spring of ‘83, while I was finishing my associate’s degree, I accepted a dinner invitation from the man who would become my husband. We had sex on the first date. We had sex before we had dinner. Actually, we had sex instead of having dinner: glorious, mind-numbing, lean-against-each-other-and-gaze-in-the-mirror-afterward-in-total-awe sex. We didn’t practice safe sex. We came of age in the ‘70s; we’d never heard of safe sex. Fact is, we probably couldn’t have practiced safe sex even if we’d had a mind to, since the first “safer sex” guidelines weren’t proposed until 1983, right around the time Cliff and I hooked up. Had those guidelines been available, our sexual histories should have inclined us to exercise caution, but again, we wouldn’t have. This isn’t just because, like most heterosexuals, all we worried about was birth control (and the occasional heartbreak), nor because we hadn’t heard about AIDS, though we hadn’t, but because even if we had heard about AIDS, we would also have heard that AIDS was a gay disease, a virus with a bent preference.

But sitting here in a brand new century with all the available facts, I can tell you that 1983 was also the year researchers documented that the so-called gay disease could be transmitted from males to females. Still, facts notwithstanding, AIDS was and will be a gay disease to most Americans. It’s not that people didn’t care, of course; they just didn’t see how this affected them. But those with HIV knew, and they cared.

From Jose I learned how dangerous infection is for a person with AIDS and so when one of my cats accidentally scratched him, I went for disinfectant. I reached to swab the cut with a cotton ball, but Jose drew back and told me to let Frank do it. “It’s only a scratch,” I said, “I’ll be careful.” I felt silly saying even that. The dot of blood was no bigger than an aspirin. But Jose, who was never forceful, insisted: Let Frank do it. Jose was very careful around his friends and family and he took educating others on the subject of HIV/AIDS as a personal responsibility. Facts were facts; Frank was HIV-positive.

Once Frank had bandaged the scratch and I’d put away the disinfectant and cotton balls, Jose turned to Cliff and said, “You know Cat Scratch Fever?”

A metal head from way back, Cliff grinned. “Yeah. It’s a Ted Nugent song.”

Jose was not smiling. “No, the disease. It’s a disease.”

Cliff, Frank, me, we all chimed in, “It is not!” Jose’s trickster sense of humor was legendary. The three of us stood grinning at him like a colony of Cheshire cats. We were not to be fooled.

“It is very dangerous,” Jose assured us solemnly, his accent somehow making the words even funnier.

With Jose there were two things that never ceased to amaze me: the silly “facts” that would pop out of his mouth like gumballs, for example Cat Scratch Fever, which could not possibly be true, and the not so funny fact that half the time he was not joking; some of these things could, and eventually would, kill him. As it turns out, “cat-scratch disease,” or CSD, is quite common not only in Central American countries like Nicaragua, where Jose was born and raised, but all over the world, including the United States. In Texas, where Frank was raised, the number of confirmed cases of CSD the year Jose died was higher than over a half-dozen other animal-borne diseases combined, including Lyme disease and Rocky Mountain spotted fever. Even so, CSD is primarily a child’s disease in the US. It is not considered serious, and treatment is normally considered unnecessary. For the immune compromised, however, cat-scratch disease can cause neuropathy, pneumonia, problems in the central nervous system, and encephalitis. It can be fatal.

In Longtime Companion, 1984 is marked by one of the characters discovering he has a six-inch lesion on his brain: toxoplasmosis. He smiles brightly at his partner. “This explains why I’ve been throwing up.”

I remember 1984 for Cliff’s promotion from boyfriend to live-in partner and for two fabulous forays into urbane culture. The first involved spending spring in Manhattan. Not only did this trip mean three glorious months of theater, art, and music while I studied American culture, but at the advanced age of twenty-four it also marked my first time in a big city for more than just a day trip, my first time away from home without a family member, and my first (well, only) time being mistaken for a boy. It was in the Village, naturally. Back home in Portland, my newfound acculturation ushered me straight to the performing arts center where I gained part-time employment and my second entree into urbane culture: theater, opera, music, dance, and as often as not, the chance to chat the night away with a gay co-worker. Although these co-workers were out to most of the younger crew, a few of the older women on staff continued trying to arrange dates between their nieces and some of these “nice young men.” One of these nice young men and I became friends. We’ve been friends for over twenty years now and the last time I saw him he introduced me to a friend of his who referred to him as her ”best gay friend” -- as opposed to her best friend, who was someone else. It’s worth saying that this distinction struck me as far stranger than my being mistaken for a boy.

I didn’t know it, but this friendship would mark a turning point in my life. As a child I had been aware of those nice young men in the family circle the way most people in American families are aware, vaguely. Inevitably there was some male friend of the family, some uncle or nephew or cousin, who straightened the table settings, who helped repaint the kitchen or paper the dinning room, who was so thoughtful; someone who could cook. I was a teenager when my mother demonstrated through the unspoken bond of friendship that all men are created equal, no matter what gets whispered about them. The generation after mine, the HIV generation, grew up with “out” gay men as just another stripe in the rainbow of humanity. For my generation the education was different. For some, the learning began with the shock of a phone call: “I’m gay.” Others, like me, had a gradual accumulation of experiences: school boys who hung around for protection as much as friendship, college boys who risked their not-yet-ready-for-prime-time coming out stories, young men who shared confidences about what went on behind their closet door. So my friendship with one of these nice young men didn’t mark the first time someone came out to me, nor was he my first “best gay friend.” I was twenty-four when this man and I became friends and my life began to become more densely populated by gay men; by thirty-four I was knee-deep in bodies. Truth is, I don’t know that I’d be writing any of this were it not for the fact that my circle of friends became very gay and then, too rapidly thereafter, very dead.

When I graduated from college in the spring of ‘85, I considered myself educated, socially conscious, knowledgeable about what was important in the world; looking back, I’m none too pleased to see my younger self more self-involved than self-aware. Oh, I thought I was aware. I was aware of apartheid in South Africa. I was aware of the starving in Ethiopia and on my twenty-fifth birthday took donations in lieu of gifts. I was aware that the man in the White House was making lousy decisions. (Those who cannot recall who was in the White House in 1985 probably aren’t movie buffs.) I was aware of chlamydia and herpes and that venereal diseases were now called STDs. But mostly I was aware of my pride at having successfully put myself through college and my joy over the diamond class ring my auntie had purchased to mark the occasion. What did I know?

Several of the peripheral characters in Longtime Companion have died by 1985, and I want to say that most heterosexuals had no idea what was happening at this point, not unless we knew someone who was gay, but that’s not quite the case. A national poll taken in 1985 revealed that 72 percent of Americans favored mandatory testing for HIV, over 50 percent wanted to quarantine those with the virus, and 15 percent of us would have preferred the infected be identified by tattoo. When I see statistics like these I wonder how I managed to be so oblivious. Then I remember the collective gasp and the slammed door: Rock Hudson had AIDS, and thirteen-year-old HIV-infected Ryan White wanted to attend public school. I remember the reactions of my family members and non-gay friends. I remember the fear, the judgment: parents, some of them doctors, fearful that their child might try to become blood brothers with the infected; friends who, though they could not tell me to my face, would not allow their children to eat off my plates or drink from my clean glasses because Frank and Jose used them too. I remember everyone was afraid. By 1985, the talk in Longtime Companion has shifted from AIDS to opportunistic infections and drugs: which drug will work best under each circumstance, each individual combination of infections, each version of the compromised life. One of the central characters, Sean, has developed CMV. It eats your brain. After Sean’s memorial, the next scene is his partner’s memorial. Those in the know reel off the latest research: HIV is in saliva. Lovers are afraid to kiss, much less make love. Friends surreptitiously scrub their hands after hugging a hospital-bound buddy.

When Jose died, at the age of thirty, AIDS was the leading killer of American men aged 25 to 44. All men. City boys and country boys. Homo and hetero and bi. The United States is the only country in which HIV originated and flourished in a marginalized and stigmatized population that was, for the most part, out of sight and easy to put out of mind. Because AIDS began here in the gay community, gay and HIV have became fused in our minds. While it should go without saying that gay does not equal HIV positive and HIV positive does not equal gay, HIV/AIDS continues to be considered a predominantly gay disease in the US, statistics to the contrary be damned.

For things we do not wish to look at, we have closets.

* * *
In the early days of the AIDS epidemic (an experience for those on the front lines that had the feel of a holocaust, this word with its meaning rooted in burnt offering and sacrifice; not an epidemic, which simply implies prevalence, something widely or commonly occurring), The New York Times refused to acknowledge gay relationships. The Times’ obituary column referred to surviving partners as “longtime companions” of the deceased. “Widows,” Frank called them, his mouth smiling, his eyes serious. It is from this denial of acknowledgment that Longtime Companion takes its name.
* * *

I know from my own experience how hard it is to say what others do not, cannot, or will not acknowledge. For the remainder of the 20th Century, whenever I talked about Jose and the circle of friends I had when he was alive, I usually got one of two responses. One felt like no response in particular inasmuch as I was talking to those who found my lifestyle or life history to be unremarkable, maybe even similar to their own. The other was some combination of shock, awe, and/or multiple questions about why all my girlfriends were men. Being around men whose hearts lead them to partner with other men has never struck me as strange. Love is love, as far as I can tell, attraction is attraction. We go where it leads. What strikes me as strange is that so many of my friends and so many of my friends’ partners died before any of us reached middle age. What strikes me as strange is the fear and anger that splashed back at me when I talked about gay men or AIDS in what appeared to be an educated perhaps even liberal-minded group of individuals. And, finally, what strikes me as strange, strange that it is still here, strange that it is still so strong, is the denial that still surrounds both homosexuality and HIV/AIDS. (Oh, how I wish these two were not so often bound together in the same sentence). My father, for example, a man whom I consider to be clear-eyed and open-minded, a man who makes his home in places where land and sky are wide and spacious, says to me from his couch one day, “I don’t know any gay people.” And I say, “Yes you do, Dad.”

Knowingly or unknowingly, what we deny we sacrifice.

AIDS was declared an epidemic just as the ‘80s opened but most of us didn’t know much about it until 1988 when, seven years after declaring an epidemic, the Surgeon General mailed out 107 million copies of a small pamphlet entitled Understanding AIDS. “Finally!” Cliff and I said, and we laid the pamphlet out on the coffee table. We hoped that our friends, family, visitors would read, discuss, and disseminate this vital information. But instead of encouraging communication, the effect was like holding up a condom in church. Whenever anyone came over, silence ringed the coffee table. Now when I look back, what I find most telling is not the silence, nor that Cliff and I felt the need to show solidarity with those who’d been openly maligned in the media and on the street for “infecting innocent victims,” but that the two of us didn’t talk about getting tested. If we had any doubts, we each did the math and kept it to ourselves.

The spring of 1986 found me working my first full-time job since college graduation and that spring is acid-etched on my mind’s eye because it arrived with an AIDS joke, the first -- and last -- told to me in anticipation that I would enjoy it: “What’s meaner? A junkyard dog with AIDS or the man who bit him?” My curt response cost me an office friendship. I was naive enough not to understand why, but so be it. AIDS is not a joke. AIDS is not a movie. There are no house lights coming up at the end. There is no walking home. Every gay man who has died because of AIDS was somebody’s son, somebody’s brother, somebody’s uncle, nephew, cousin, maybe even someone’s father. In the decades since AIDS was declared an epidemic and safe sex replaced birth control as the number one concern of the sexually active, an entire generation of children has been born, grown, and come to sexual maturity under the Damocles’ sword of HIV. The HIV generation was raised to fear sex in a way that even the Church never conceived of. They never got the freedom that the generation who came of age in the ‘70s had, we with our rallying cry of “If it feels good do it,” but they’d like to. It’s 2004 as I write this, twenty years after Jose’s death, and today over half the new HIV infections among those under the age of 25 is from sexual contact. Heterosexual contact. Abstinence remains as useful a safe sex plan for this generation as it was a birth control plan for mine.

* * *
It was May of ‘94, early in the month I think, and it was hot, too hot: too hot to stand in the sun, too hot to move without sweating, and too hot for an already nauseated Jose to ride comfortably in the back seat of an old car without air-conditioning. Somehow I feel I should have known that last one, but we can only see as far as our experience allows.

Jose’s parents and I had brought him home from the hospital in the heat of the afternoon, and I parked my Rambler next to the back stoop because it was the quickest way into the apartment. But Jose was disoriented that day and uncharacteristically stubborn and he simply, and for no reason we could discern, refused to go. A debate broke out in Spanish. Standing in the heat of the sun, what I noticed was the side of the apartment building. Its gray paint had begun to blister but not yet to peel. A moment’s observation. In the time between that day and Jose’s death I would have many hours to study this tabula rasa, hours spent in five and ten minute increments sitting on these steps or atop the retaining wall, Frank chain smoking to the filter, me picking at the brown grass and dirt, both of us breathing the overheated smell of garbage as we worked to save the man we loved, something which we both knew couldn’t be done. I ended the debate between Jose and his parents by taking Jose firmly by the arm, walking him around to the front of the building, up the front steps, over to his front stoop, up those steps, and into his stuffy south-facing apartment. A distance of maybe forty or fifty feet, the trip took ten minutes and left us bathed in sweat. At each set of stairs, each step, I instructed Jose how to walk. Which foot to lift. When.

I got him inside. I got him comfortable. Then he began to vomit. And vomit and vomit and vomit. The jarring ride in my old car, the unseasonable heat, the long walk to his apartment, the toxoplasmosis, the drugs for the toxo, all these had conspired against him. His mother grabbed a bucket. His father brought a cool cloth. I held Jose close to my body, held the bucket close to his face, stroked his hair and told him, “It’s all right sweetie it’s all right sweetie it’s all right.”

When I got home that night my left eye burned with the splash of vomit that was no longer there and my head burned, as with a fever, with the words Jose had spoken so often: all body fluids are dangerous. Even urine might have blood invisible to the eye. Certainly bile could have blood from an inflamed esophagus or stomach. Later -- days? weeks? -- I called an ICU nurse who told me it’s standard procedure to wear goggles when intubating a patient; when a person coughs or chokes, internal fluids get sprayed out along with the exhaled air.

“How careful is too careful?”

“It only takes once,” she said. It’s what we once heard in sex ed classes about the risk of getting pregnant.

That night I returned home to my husband after holding my best friend in my arms while he puked, holding him not because he was drunk or heartbroken but because he was too sick to know what was happening to him; home to my husband and the dark of our back deck, home to make small talk and then to quietly to say, I’ve been exposed; home to make love, the first time in a long while, with no questions and no protection.

Jose died a month later.

The year my best friend died, Philadelphia made a star of Tom Hanks and the title song remains an anthem to the devastation of that opportunistic collection of diseases we call AIDS. Philadelphia, as I mentioned, also bears the dubious distinction of being the first feature-length film to deal explicitly with AIDS since Longtime Companion came out in 1990. But in the summer of ‘89, the year in which the story of Longtime Companion draws to a close, I didn’t know anyone who had died of AIDS. I hardly knew anyone who had died. I wasn’t yet thirty. Thirty was when AIDS was still considered news and Congress passed the Ryan White CARE Act and a small but certain segment of the nation was saying, It’s about time. Thirty was when Frank and Jose were becoming fast friends with Cliff and me, when the four of us heard Maya Angelou speak, heard the resonance of truth in her voice when she said, “Those who have gone before you have already paid your way.” Thirty was when Jose called weekly to announce which movie he and I just had to see. We were crazy about the movies and crazy about each other. Seemed we were best friends in an instant, though that can’t be true, but it was; and thirty was the start of Jose’s tenure as my best friend, the last best friend I’ll ever have, because to be best friends you have to be young in a way I’ll never be again.
* * *

As I sit here editing this book, the book I wrote for Jose, years roll by, decades begin, decades end, centuries collapse in upon themselves and rise again like a goddamned phoenix. Time is never ending. Time is as relentless as AIDS. And if I could find a cure for time, I’d take it.

It’s been a hundred years since I saw Longtime Companion and almost that long since I lost my dearest friend. It took me a year after Jose’s death before I worked up the courage to have myself tested for HIV, a year of alarms sounding in nightmares, a year of immobilizing grief. At some point during that year I realized, for certain and forever, that the world isn’t safe. It never was, of course, and I can’t tell you if the moment at which that became clear to me was when the bile hit my eye, when the best friend I’ve ever had stopped breathing, or if I simply found myself having a lot of those moments and finally stopped counting, stopped tracking, stopped backtracking, and began letting it all wash over me like waves on the beach; like time.

Wondering whether I’d been infected was frightening, but I needn’t have worried. At the turn of this new century, the CDC Surveillance Report on HIV and AIDS Cases in the US had three things to say about how a person is exposed: sex, drugs, and blood. It’s a chant that plays like the B-side to the boomer generation’s mantra of sex, drugs, and rock and roll! All the rest, all that we imagine about how we may become exposed to HIV, is simply variations on this theme, variations on a theme of fear. I’m okay. But I’ve been watching my little corner of the Post Mortem Bar, and it’s filling up like a last minute barbecue on the first real day of summer, filling up with my close friends and family friends, casual friends, co-workers, acquaintances. The three people walking on the beach at the end of Longtime Companion are very much alive. How they get to be at that bar as their dead friends and lovers reappear, I don’t know, but miracles like that are just one of the things I love about the movies; Jose, too.

Here, then, is the miracle at the end of my movie: at the Post Mortem Bar I’ll get to see Carl, the English department secretary from the university where I was a graduate teaching assistant, and I’ll catch up with a beloved linguistics professor there, too; I’ll see Jim, the eldest son of my grandmother’s best friend, an uncle to me, the man whose mother still believes, as the Seventh Day Adventist church wills it, that her son’s death was caused by the sin of his lifestyle; I’ll see Gryphon, the clothing designer with the sterling bone pierced through his nose, who hand-constructed one-of-a-kind, antique-fabric kimonos for my auntie’s boutique; I’ll meet the young men, fifteen or twenty of them, whose pictures were pasted in a handmade shadow box that sat atop a red silk-draped altar in Jose’s room and to which he gestured and said simply, “My friends who have died”; I’ll see Randy, my younger sister’s best friend and roommate, so dear to the family that our aunt referred to him as “one of the kids,” the man who would later arrive at my doorstep with books and pamphlets, tissues and kind words, and answers to questions I didn’t even know I had; I’ll see Garrett, who was always “going to beat this thing” with yoga, special diets, positive thinking, and who looked so bad after Jose died that Frank locked eyes with me and said, “Garrett’ll be next”; I’ll see Aaron, who died a year after Jose, and he’ll hug me and tell me he was always one to feel that he had to take care of those he loved, that he was dying and didn’t have the energy to take care of one more person and that’s why he sent me away, tears, astonishment, and all; I’ll finally get to meet Michael, the partner of the man who is now my closest friend, the love of his life; I’ll meet the brothers and partners dear to all the men and women I met in my AIDS grief group; I’ll most likely see the neighbor from across the street and he’ll see his live-in “nephew,” whose empty hospital bed was all I ever knew of him; I’ll see the acquaintances, co-workers, and neighbors who haven’t died yet but will; I’ll see Jose; and I’ll see all the friends I held in my mind’s eye when Jose entered the hospital for the last time and I called my father in tears to tell him something that, even then as a man of fifty-odd years, he could not imagine: “In ten years, half my friends will be dead.”

It’s been nine years so far, and that circle of friends is gone. All dead. Or shell shocked.

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