Specimen Days: Scenes From the Epidemic
February 22, 1994
I DON’T KNOW where to go as I leave the doctor’s office. The shops and people seem two-dimensional. Sounds are muffled. I keep thinking: pay attention to what you feel. But all I feel is the wind.
I remember the museum is close by. The heavy woodwork, the leaded windows, the cavernous rooms remind me of elementary school. I head up the central staircase, following the path where the stone has been worn down by footsteps.
I’m impressed as always by the dinosaur bones. They are displayed in action — about to fight, about to feed.
A tour guide breaks my thoughts. She tells group of schoolchildren to ignore the signs in the glass cases; natural history is advancing so rapidly, she explains that the curator can’t keep up, and some of the information is out of date.
I’m disappointed to think that our science will someday seem quaint and that I’ll never know what really happened to the dinosaurs.
WE WALK INTO a glassed-in sidewalk café near Dupont Circle. I make it a point to sit across from Daniel because I want to flirt without the others noticing. We talk about how the rest of the world seems so little aware of what we are going through and how much the neighborhood has changed. We order omelettes; I look around and realize it is lunchtime for the other customers.
Daniel has been traveling in the Midwest and says he’s impressed by how close knit gay people seem in small towns; he would trade some of the freedom we have in New York for that sense of community. We start to play the game, staring a bit too long, jerking our attention away. He apologizes for using Sweet ’n Low, and I confess I use too much salt. I look through the glass and say Washington might be a nice place live after all.
Then I knock my fork on the floor and bend down to pick it up, but I’m not watching and I slam my forehead on the next table. It’s quiet all around us. I look up to say, “I’m fine,” but before I get the words out I see two drops of my blood, bright red against the white linen.
I DRIVE TO the suburbs to visit my father in the hospital. My hometown seems too manicured, like those model towns we used to build for the train set. My father’s room is in a new wing of the hospital, with drop ceilings, sheetrock walls, and a small crucifix over every door.
My mother and brother are there. I tell them Dad looks good and my mother smiles. I begin to resent the attention he’s getting.
Later, I am alone with my father when he wakes up. We have small talk. Suddenly, he asks if people still get AIDS from transfusions. I’m startled just to hear him say the word. I want to tell him I understand how afraid and alone he feels, but I’m not ready for him to know about me. I tell him to not worry — they screen blood now. He doesn’t look convinced, but puts his head back and drifts off to sleep. I touch his hand and notice how much our fingers are alike.
A few weeks later he’s back home and I visit him again. He seems small and hunched over, but the quickness is back in his eyes. He gives me a key to a safe deposit box; his will and some savings bonds are inside. If anything happens to him, it’s up to me to take care of the arrangements. I’m the only one who would be calm enough to know what to do.
I FOLLOW PETER out to the beach. Children from the village play off in the distance. The sun is already strong. Peter sits at the water’s edge and lowers his head. I sit a few feet away, wondering what to say. It was easier back in the city; here there is too much time to think. I look back at the guest house and notice again how shabby it’s gotten.
I touch his shoulder. He doesn’t want to die alone. He doesn’t want to die. I tell him I understand, I’m going through it too. That doesn’t calm him. He starts up again, telling me how his friend died. I turn away.
Further down the beach, someone has sculpted a life size person in the sand. The arms are crossed over the chest like a body in a casket. The face is peaceful. I start to tell Peter I heard these sculptures are part of an old folk religion still practiced on the island, but halfway through, I can’t remember if that’s true or I imagined it.
Suddenly, I envy his hysteria. I tell him that the frightened boy inside of him is the part I love most and that I would be there if he got sick. He calms down. We decide to go for a swim. The water’s too cool and the tide’s coming in, but we make it past where the waves are breaking and soak in the sun and the salt and the motion. When we return to land, the sand corpse has been washed away.
I’M MAKING every effort to keep up my friendship with Tom. He’s a connection to the days when everything was possible. Now that I’ve moved in with Peter, I worry that Tom may get lonely. And I know he’s attracted to Peter. He doesn’t hide his jealousy, and I don’t hide that I enjoy it.
But tonight he’s in one of his moods, smoking cigarettes between every course. He called to tell a friend about another friend and that friend told him about someone else. He’s thinking of taking antidepressants, but he’s afraid they’ll suppress his immune system.
Tom starts describing how he’s stopped going to memorials because they make him think about his own. I lean back, signal the waiter to bring the check and say, “Don’t worry, Tom. We’re not planning to give you a memorial.” I look into his face to see if he’s amused, but see only anger and surprise. It’s my turn, but he won’t let me pay for dinner.
PETER COMPLAINS that I go to ACT UP demos just to cruise. I tell him I go for the sense of event. But today, in front of the Stock Exchange, the rain has muffled the protesters. I’m watching from under the canopy of the Federal Building across the street, listening to a homeless man explain the scene to his companion.
Then I see Mark. I slip around the nearest column, hoping he hasn’t seen me. I remember reading in Alumni News that he’s a vice-president now. I’m embarrassed by my backpack and blue jeans. I tell myself he wouldn’t be surprised to run into me here. He must have suspected me back in college.
I feel a tap on my shoulder and I spin around and Mark’s smiling at me, extending his hand. As we’re talking, I notice his eyes darting over to the demonstrators. I ask about his wife. Beth had a miscarriage last summer, he says softly, but they’re trying again now. Then he leans toward me, whispers, “Be happy,” and disappears into the revolving door.
I’M STARING INTO a shop window when I see a familiar face in the glass. David. We smile. Six years? Seven? You’re looking good, he says, by which we both know he means healthy. What’s new?
I don’t know what to say. David and I had never gotten to know each other well. I throw out disjointed facts. New boyfriend, same job. And you?
David tested positive last week.
I reach over and put my arms around him. That’s not like me. In those weeks we slept together so long ago, we never touched in the street.
AT LAST I would meet the extended family. Easter is a major Greek holiday, so there would be plenty of ritual to get us through the evening. Peter’s mother puts out a spread of lamb, spinach pie, and honey pastries. We crack open eggs dyed red in honor of Mary Magdalene and make wishes for the coming year. The older aunt never looks me in the eye, but sweet Aunt Kattina nods and smiles at me all through dinner. Later, the men laugh and argue over coffee while Peter and I help the women in the kitchen.
When we return home, Peter lights candles and we make love. Then he turns to the wall and we curl around each other. We will sleep with the window open because it’s almost spring. I lie still, waiting to hear him snore.
In the middle of the night, Peter cries out and I wake him and say it was just a dream, go back to sleep. We lie back. I look down at my body, thinking that all we are is inside our skin, but in this moment that thought doesn’t frighten me.
I’M TYING UP the newspapers. That’s become my job. Peter is mopping, singing along with the music. The apartment smells like lemons and ammonia. Then I spot Michael’s obit. I quickly shuffle it to the bottom of the pile, wondering if Peter knows. I decide to wait for the right moment to tell him.
But later, when I’m emptying the trash, I discover he’s already removed Michael’s card from the Rolodex.
I NOTICE A SLIGHT awkwardness in my step. After a brain scan and biopsy, I’m told I have a brain infection, which the AIDS treatment handbook I pull down from my shelf describes as “largely untreatable, rapidly progressive, and fatal.”
Peter is scrubbing the turkey, twisting his face in disgust as he slaps the gizzards into the sink. Carol is rolling pie crusts, explaining the virtues of shortening over real butter. The cats hover wide-eyed in the doorway. Sage, rosemary, and lots of thyme, I remember my grandmother telling me as she violently shook the spice can over the bowl of stuffing. Peter’s mother bursts in, and they argue in Greek until he lets her peel the apples.
Later, my family comes. It’s the first time I’ve seen them since the news, and they sit across the table in their best clothes, huddled together, motionless and grim like the Romanovs waiting for their executioners. My niece crawls over and sits in my lap.
I SIT in the dark comer, wanting to get up to respond to the man who’s rubbing his crotch in my face, afraid to lose my seat. I rub saliva from my hand and reach up to touch a passing nipple. I’ve convinced myself the sex club is one of the places I feel safest. The corridors are too narrow and crowded for me to fall. It’s so dark, no one seems to notice the way I move, or maybe they think I’m just drunk. I’ve learned something about myself coming here: The fun was always in the chase.
I’M STRAPPED to a table wearing a blue paper gown with a plastic cage around my head, being slid into the scanner. They shut the hatch, so I am completely enclosed, like an astronaut. The test lasts longer than I expect; I’m wondering if that’s a good sign. They pipe in music to drown out the distant jackhammmer rumble of the scan. I had brought CDs — Bach and a pop song that reminds me of Peter — but when they ask what kind of music I prefer, I just want to get it over with and I say I don’t care. So they pipe in the radio. It’s rush hour, so I lie there listening to anxious traffic updates.
WE’RE IN A DAMP East Village basement, watching a play about nuclear holocaust. Strobe lights, screeching punk music, eager actors stumbling around with red Jello dripping from their cheeks. Later, in front of the theater, the lead walks by, without his makeup. He has a lesion on his face.
PETER YELLS “snap out of it,” complaining that my walk — dragging my left foot, my left arm curled up in front of me like a beggar — “looks like something out of Dickens.” He’s mad at my family today, after a message from my brother the priest informing us that I had upset my sister because I sounded “down” on the phone. I think back to the day two months ago, my birthday, that I told her, as she returned home from the butcher, watching while she slapped fistfuls of chopped meat into burgers, wrapping each with both Saran and foil to protect them. When I told my brother the night before, he described Pascal’s wager — that we might as well believe in God, because we’ll be better off if he exists and no worse off if he doesn’t. I told him I didn’t think God’s so easily fooled.
I NEVER WANTED to open gifts on Christmas, because when the boxes were all unwrapped, it was over. This year, I’m having trouble tearing the paper, so I just want to get through it quickly. We usually buy a tree that’s much too big for the room, but this year we buy a small one we can replant in the spring.
I LIE ON THE couch, thinking I should be reading Proust or sailing to Tahiti, strategizing whether to get up to go to the bathroom or hold it till Peter gets home. Suddenly, the roofers start to lift the skylight, two days ahead of schedule. A few flakes of snow fall into the room, sprinkling my blanket like sugar. I pretend to be asleep because I don’t want it to stop.
REMEMBERING ROBERT: Seven Writers Remember a Colleague and a Friend
May 17, 1994
A DIARY OF LIVING WITH AIDS
November 18, 1993, 9 a.m.
A few weeks ago, I began to notice a slight awkwardness in my step. A few days later, I was stumbling over the keyboard, a few more errors per line each day. Though I’ve been basically healthy, knowing what I know as a journalist covering AIDS, I rushed off to the doctor, and after a brain scan and visits to a few specialists, got the diagnosis: Progressive Multifocal Leukoencephalopathy, or PML. The medical book I pulled down from my shelf describes it as a rare brain infection caused by a common childhood virus that can erupt in people with AIDS, largely untreatable, rapidly progressive, and fatal.
My response is to be stoic. That’s because I’ve always been stoic, and because I’ve perceived that staying calm is the best thing for my health, which is the measure of all things these days. That may change: some anger or hysteria might be useful, or necessary, later on, but not for now.
The hardest question right now is how aggressive to be with treatment. My own research tells me early treatment might at best help slow down the infection, but treatment itself is a drastic step, involving the risky insertion of a device into my brain to deliver the medication. At the moment, I’m still able to maintain the semblance of a normal life. At this stage, the infection has eaten away at my ability to move the left side of my body, more each day. I can type with one hand, walk if I stay close to the wall, still climb stairs. My definition of normal keeps expanding.
The most interesting part of all of this has been the reaction of everyone around me. Of course, everyone is being extremely helpful and, taking their cue from me, remaining calm, at least in my presence. I find that each person’s ability to help is a function not only of our relationship, but of their own relationship with mortality.
The central person of my life, my lover, my doppelgänger, my pal, is Perry, dear Perry. I’m so sorry to see you go through this. One of the complications of AIDS is negotiating the relationship between the lover and the family, but so far my family has followed my instructions that after me, Perry is in charge. Mom and Dad had to learn of all this on my 36th birthday.
My friend Carol had the presence of mind to ask me a key question right away: What am I doing with my time? My answer has been to do what I’ve always done. But, in fact, preparing to die, perhaps abruptly, while maintaining a positive attitude, whatever that means, is quite time-consuming.
Do I want to travel, win the Nobel Prize, finally read Proust? Of course, but I don’t see that focusing on the never-dids will be much help right now. And nothing would be enough, so anything is enough, to be savored. And as I keep having to remind everyone, I’m not dead yet.
But I am tired.
Today I became focused on a question that has been nagging me since the beginning: what physically is happening to me? What are the facts? A brain scan has shown one large and several small lesions. Two doctors, one considered the leading expert, have written “PML” under diagnosis on their bills. Blood tests show my immune system is weak enough for PML to appear. But what does that mean? It’s not like I have shrapnel sticking out of my gut. The mind can create symptoms, and a brain infection is particularly tricky. I’m a prime candidate for having invented this. I don’t have a history of hypochondria, but I do write about medicine, so I could be making this up.
Is this denial? The body has tools to fight almost anything short of shrapnel in the gut. For reasons beyond what we understand, the molecules in my body are not working together the way they should.
December 1, 1993, 11 a.m.
Why have I been so unfaithful in writing this? Fear that it falls so short. Being miserly with my time. Difficulty of sitting at my desk, working the keyboard. Wanting mostly just to sleep.
The last few weeks have been taken up by visits to the hospital for tests, visits from friends. Monday I was hobbling around the hospital going to rooms to fill out forms so I could go to rooms to fill out more forms.
Tomorrow is the biopsy. They make it sound like a tooth extraction. Local anesthetic, one stitch. Assuming there are no complications — they always add that.
I managed to drag myself over to work a few days last week, to help orient my replacement. How do you begin to explain something as ineffable and intuitive as story assignment? I left one cardinal rule: Print nothing that might mislead people to unwise choices about their care. But what is wisdom in such a catastrophe?
I felt at work, as in the hospital, like I was in a black hole. Worried about my privacy, those I’ve told haven’t told anyone else at the paper. So everyone acted as if I’d been on holiday, maybe sprained my ankle skiing. But that’s why I went back — for some sense of normality.
Too much caution can be dangerous. The hardest thing about walking in the street is that I almost get knocked over because I wait for the light to cross — almost unheard of in New York City. I learned it’s safest to walk with a little more limping than necessary, so people don’t come too close.
Our friend David died two days ago. Frank had a tumor removed from his spine yesterday, will need to have a kidney taken out too. Events that would have shattered my equilibrium just a few weeks ago now seem like faint, distant echoes.
Dear diary, I’ll tell you a secret. What is still on my mind, near the core, when work, reading, writing, and even friendship seem too difficult, is sex. Much of my time right now seems to be focused on ways to create the illusion at least that sex is still possible. Will they shave my head tomorrow?
Will there be complications?
December 5, 1993, 6 p.m.
Much as I’d like to milk this brain operation for maximum sympathy, I must confess that it was not at all horrible. All of us surgery patients being summoned from the lounge en masse, torn from our loved ones, did, as Perry later remarked, have a holocaust vibe, but after they gave me the intravenous Valium, they could have chopped my head off and I wouldn’t have minded. I remember only fleeting moments: having part of my head shaved, hearing them say they still had one spot to get. I ate saltines and apple juice in the recovery room.
My goal was to get out of the hospital as quickly as possible, not to wallow, to be free of the regimentation (which was oddly selective: breakfast the next morning consisted of decaf, skim milk, no-cholesterol butter, a tablespoon of scrambled eggs, and five strips of bacon).
Back at home I’ve been fine — except last night, when the anesthetic finally wore off, was rough. I wasn’t in pain, just felt completely wasted, discombobulated, as if I had an electric current running through me.
Perry the snoop read through this and said it wasn’t good, that people want to read about emotions, not symptoms. I agree — that’s what good writing is. But I can only write what’s there. Better to be boring than dishonest.
December 9, 1993, 6:30 p.m.
Mary, one of the phone receptionists at the Voice, whom I don’t think I’ve ever spoken to except to complain about misdirected calls, stopped me in the street today asking if I was OK, ’cause I was walking so slowly. When I told her I was OK, but I’ve been ill, she looked horrified and said she would pray for me. I guess only a virtual stranger can show naked sympathy. I’m aware of nearly everyone around me looking past the wound in my head, past my awkward movement, trying to make me feel normal. (I’m also aware that my oh-the-biopsy-wasn’t-so-bad routine is in part an attempt to milk it for what I can. To look brave, so they can say he fought it.)
The doctor told me last night that the biopsy was conclusive — PML — but that I wasn’t deteriorating that rapidly, so she wanted to continue the antivirals and hold off on the chemo implant for at least a few weeks. So I went back to earth.
They all are being very supportive — willing to make arrangements to enable me to do whatever work I want, promising to not cut me off, bending to accommodate me. Of course, they don’t have too much choice — I could be a PR liability. But I also like to think that they are basically decent folks. Do I want to work? I need to keep my feet on the ground. But I’m haunted by the idea that it’s not the best use of my time — I should be home writing the great American novel.
Hearing friends talk about other friends in hysteria over this or that amazes me. Even the news of the great events shaping the world outside seems beside the point. Stop fighting. Feed people. Our attention should be all on picking up the pieces from natural disasters, like AIDS. Everything else we invent.
Shortly after he wrote these passages, Robert Massa became unable to write or type. By March, he was unable to use his facial muscles to speak. He died on April 9.
WHY AREN’T THERE telephones in the hereafter? In the stillness of the wee hours, with the cursor flashing mockingly on a blank slate screen, I’d call Robert. Or at two in the morning, when writerly demons were haunting him, my phone would ring. We’d try out ideas, read passages to each other, get advice on structure. Somehow we’d slide into chitchat, then into more intimate conversation. After an hour or two, we’d joke about our codependent writing-avoidance behavior. We’d hang up — and crank out a story.
Those were the days before either of us had found — and moved in with — the loves of our lives. The days, that is, when the phone could ring at two in the morning without detonating a domestic disaster. When both of us were figuring out that we needed to write about more than theater, when we both needed to talk about what it meant that we felt so happy to be succumbing, at last, to the coziness of coupledom.
Robert, much more calm and self-assured than I in both pursuits, was not only a nurturing and demanding editor of my writing, he helped me shape my life.
It’s hard to come up with a snappy anecdote or image that captures him. Robert was more intricate than eventful. Though as a writer he was a master of pointed concision, as a subject he seems, strangely, to demand sprawl, or at least lots of scene setting. For Robert, magnitude and meaning resided in details. That’s one reason he was the country’s best AIDS journalist. That and his passion, precision, and principle.
And he was scrappy. Gloriously so. Though deeply shy and unassuming, Robert could be incredibly forthright. He had no patience for bullshit. I’m sure that people in press offices cringed when he called, knowing he’d ask questions that would shove them off their script. When he got sick, he displayed the same no-nonsense clarity. Respecting his disdain for sentimentality, I tried to repress my mushy tendencies in his presence — and perhaps didn’t say aloud what pounded in my heart. But then, Robert didn’t seem to want histrionics; he wanted someone to read him the paper. And though, increasingly, he couldn’t speak, he managed to keep hurling barbs at the Times. I’d visit on Thursdays and he’d joke that I would have to come a different morning — Thursday meant having to hear Frank Rich’s op-eds read aloud.
Years ago, Robert and I collaborated on a story about men’s and women’s bars. Given our diametrically opposed approaches to work — him sculpting sentence by sentence, me wanting to blurt out a messy draft and then go back and tinker — it’s a miracle we didn’t come to blows. Our research was “dating” each other — Robert dragging me into gay watering holes (he was careful to pick bars he didn’t frequent, lest I cramp his style), me strutting him into lesbian spots. Not long ago, he told me he’d reread the story and thought it was really bad — slight ideas, clunky prose. And looking it over, I had to agree. Still, Robert, you were the best boy date I ever had. — Alisa Solomon
A TENDER TOP 10
Here is our last top 10:
1. A kiss in front of the Blue Willow so that all the world would know.
2. Exchanging wedding rings over pastrami.
3. An apartment with green carpeting and pink walls that we knew we could make our own.
5. A tub full of kittens and William meowing to be noticed.
6. Our first anniversary, I-95, and a tree that continues to grow.
7. A cold February day in Berlin searching for art and dealing with snow and torn-up combat boots.
8. March 26, 1993: City Hall, domestic partnership, and a nervous bride.
9. The Statue of Liberty — a kiss — and salt and pepper shakers.
10. My birthday this year when you struggled to light a candle and carry the cake yourself.
And of course watching you as you slept for 2204 nights. Guess what? I still do.
“Always on my mind.”
PRIME TIME PALS
HOW COULD ROBERT DIE — and leave me to watch Nixon’s funeral alone? Well supplied with plenty of cigarettes, take-out eats, and gallons of caffeinated beverage, and sharing a mutual loathing for the suddenly sanctified former prez, Robert, his lover Perry, and I would have had a ball with his send-off. After all, with the possible exceptions of the endless Menendez boys’ courtroom drama and the Tonya & Nancy variety show, this was the TV event of the season: Five-Presidents-and-First-Ladies-Five and Bob Hope, politicians galore and a bunch of cheap crooks (sometimes one and the same), and the incomparable Spiro Agnew. Oh, how the bile would have mingled with unbridled laughter as we reacted to all that pathetic posturing and cant, not to mention Senator Dole’s Emmy-worthy little breakdown at the end of his eulogy. And then we would have focused on the important stuff: Barbara Bush’s K-Marché faux pearls, the Carters’ seeming dyspepsia, and whether Alexis Carrington Colby, oops, I mean Nancy Reagan has had another lift.
Not to dis Tricia’s and Julie’s grief, but — oh, please! — their pop had been planning his final farewell as a major TV comeback special ever since he split quick from the White House back in ’74, and that is exactly how Robert and Perry and I would have relished it — as yet another great TV event that added to the structure upon which we built and nurtured our friendship. For mostly, over the past 15 years (and with Perry also working the remote since ’88), Robert and I watched television. At least once a week and, depending on what was on, sometimes much more often — I went over to Robert’s (and then Robert and Perry’s) apartment; I was home — you know, the place where you are always welcome. And while we chewed over everything from our own work to all the current issues and gossip, our primary activity was television, lots of it, all of it — the news, Mary Tyler Moore reruns, years of Dynasty, tennis, figure skating, Murphy Brown, election returns, lousy dramas, awards shows, and, above all, beauty pageants. We took it all in, savoring the purest moments — Sue Simmons and Al Roker, anything from Delta Burke’s delirious Suzanne Sugarbaker, the self-referential brilliance of the final Newhart — and commenting upon, twisting, spitting back, and otherwise manipulating most of the rest for our own purpose: good conversation. And maybe it was just an excuse to be together.
My favorite TV memory is of a beauty pageant a few years ago, in which a contestant was asked something like: In a hundred years, who do you think will be considered the most influential woman of the 20th century? That was exactly the type of thing we delighted in — and took dead seriously. After much hysterical laughter over the contestant’s response — Babs Bush (then First Lady) — we first had to deconstruct the question. What would be the best answer in order to win the contest? What would be the right answer? The most impressive? The most clever? Eleanor Roosevelt was the obvious answer — too obvious, we decided. Then Perry popped in with Madonna. We liked that, but nah. I thought hard and came up with Anne Frank. Ooh, they liked that. Impressive choice. And then, a couple of minutes later, Robert looked up, eyes twinkling, and said definitively, “Lucy Ricardo.” Ever the thoughtful, deliberate journalist, he had worked it through. And, of course, he was right.
But now, missing Robert, missing him terribly, I find our choices somehow ironic. For while Perry and I have always carried on together in a manner that just might bring to mind Lucy and Ethel or, to switch to my medium of expertise — Donna Summer and Barbra Streisand carrying on in Enough Is Enough — Robert, well, Robert actually had more than a bit of Anne Frank in him. In both his work — as a theater critic and especially as a journalist documenting the horrors of AIDS and the fight for gay rights — and his personal life, he first looked for the good in others, for the positive and the possible. He could be cynical or angry (cf. Nixon), but he was essentially a kind, generous man who did his damnedest. And like too many of the best TV shows — say, I’ll Fly Away — Robert was canceled much too soon. Oh, Robert, we never got to say, “Hi, Roz!” — Jim Feldman
TONYA HARDING AND THE WEATHER
I’m sorry, you said
in your E.T. voice,
the one you’d had
since your body companion
began its final campaign
for control of your body.
It was the inconveniencing
that bothered you the most.
That, and having to express
your biggest fears by feeling
your way along a letter board.
Months earlier, watching t.v.
(with the sound off, of course)
You observed that
essentially it all boils down to
Tonya Harding and the weather.
After several hours, I
had to agree with you.
Here’s what I remember:
The look on your face
when you first held Lucy.
Your need to talk about
love’s truths at 3 in the morning.
Your impatience with insincerity.
Your quiet ability to take care of
The last time I saw you
awake, you needed something
urgently. Water, I asked, Oxygen,
Juice, Raise the bed.
With a great deal of frustration
You finally spelled out
I should’ve known.
— Mala Hoffman
OH ROBERT, goddamn it! — Eileen Blumenthal
IN THE LAST WEEKS of Robert’s life, it was difficult for him to speak. He would dive into himself and force out words, repeating them until I understood. When he could still see well enough and coordinate his hands, he typed into a computer. After that, he pointed to letters on an alphabet chart. He communicated with his eyes, too, which were attentive, comprehending, and filled with a new intensity, a look of horror and empathy, as if he were computing his emotions and mine at a speeded rate. He made me feel understood and accepted, and I spoke without reserve.
He did not use our time to complain and one day, when I asked what was on his mind, he spelled out “I don’t feel cheated.” I said he inspired love in many people, in his odd, distant way. His kiss was the faintest brush, but he let you know, through a sort of sneaking merriment — his mouth lifting in a Cheshire cat grin, a blush blooming over his cheeks — that he was glad you existed. His generosity did not come with conditions.
It was easier now to touch him, to hold hands and rub his back. I read aloud or talked about the world and events at the Voice, but even more Robert wanted stories about my life, which he said distracted him from the discomfort of his body. I was roller-coasting on a problematic love affair. “What happened?” would be the first words he would cough up when I arrived, and when I told him it was over, he said, “Better sooner than later, if it had to end.” So there I was suffering about the loss of love and coming out of myself with him, and there he was escaping his trembling hands and numb left side. We talked of the frustration of our powerlessness over his illness. Robert said he wished he had written more; I responded there probably wasn’t a writer who didn’t feel that every day. Robert said that, apart from work, the only consolation now or at any time was human connection. He did not stop building it.
— Laurie Stone