The Gifts of the Body reveals much about the lives of home-care workers. The author describes the paperwork, the scheduling, and the team meetings where they share their stories of their clients and their work, and seek help and advice and, sometimes, comfort from one another. But it’s the clients who are most vivid, along with their friends, lovers, former lovers, and occasionally relatives who look after them. We learn about their jobs, their pets, the foods they like, their travels.
Two stories are about a man named Ed. In the first, “The Gift of Tears,” Ed finally gets a coveted place in a hospice. But he’s not ready. He explodes with rage, lashing out at the narrator, and then he is overwhelmed by grief but unable to cry, because something is wrong with his tear ducts. In the second, “The Gift of Mobility,” the narrator goes to visit Ed at the hospice; she describes hugging him goodbye as usual:
When I was about to take my arms away he squeezed me tighter.
“I’m sorry I haven’t been very nice lately,” he said into my hair.
“Ed, you’ve been fine,” I said. But I knew what he meant.
He was holding me, so I couldn’t see his face. “I don’t like being here anymore,” he said. “I wish I could go away.”
“I’m sorry, Ed,” I said. My cheek was against his chest. I could feel his ribs.
“Everybody here dies,” he said.
I squeezed him. I could hear his pulse, his heart. It sounded so normal.
“Remember when the guys used to think Super Ed would beat the system?”
I nodded. “Yeah.”
He squeezed me and took a deep breath. His lungs sounded normal too. “All the guys who named me Super Ed are dead.”
The Gifts of the Body was published in 1994. Rebecca Brown was writing in the midst of those many years—more than a decade—between when the plague was first reported and when finally, miraculously, thanks entirely to activism, medicines were discovered that can now keep it at bay. She writes about how, initially, everyone thought there would be a quick cure, and then how everyone came to believe it would never be cured. (I should note: there is still no cure.) About how people died quickly at first and then managed to live a year or two with the treatments at hand, but everyone still died: “After they died you missed them. But also there was a way you missed them before they died because you knew they were going to die.”
She continues, “It took the epidemic going on for many years before there were any hospices. First there was one, then another. People could only go there when they had less than six months left to live. The idea was to have somewhere ‘comfortable’ to die. When the hospices opened there was a huge waiting list for the rooms, so you were lucky if you got one. But there was a quick turnover because everyone died so quickly. But the waiting list kept growing because more people got sick.”
The Gifts of the Body did what my memory couldn’t or wouldn’t. It reminded me how I felt during that time. And maybe even taught me something about the smart-ass twenty-year-old answering phones in a little office in a brownstone in Chelsea, who was often too scared to think or feel.
When I do think back on those times, I try to remember all the people I knew who died. Every single one I can. That’s what matters. Sure, how they died matters; why they died matters; how many died matters. That all matters, desperately, terribly. But who died matters more than anything else.
I think about my friends. I think about people I admired. And I often think about the writers. The world lost brilliant writers to AIDS: Paul Monette, Melvin Dixon, Robert Ferro, Michael Grumley, Assotto Saint, Stan Leventhal, Essex Hemphill, Vito Russo, Joseph Beam, Bruce Chatwin, John Boswell, Arturo Islas, Randy Shilts, and John Preston, to name a few. And then there were the readers. The world lost to AIDS hundreds of thousands of readers, who would have read and discovered and debated and been changed by these and so many other writers.
In Berlin there’s a monument in Bebelplatz to make sure we never forget the May 1933 book burning by the Nazis. You can easily miss this monument—it’s simply a glass square set among the cobblestones. When you stand on the glass, you look down into a cavernous white library—a library that is totally empty. Set deep into the square below the glass paver on which you stand is row after row of empty white shelving, enough shelf space to store all of the twenty thousand books that were burned there: books by Albert Einstein and Rosa Luxemburg and Erich Maria Remarque.
We can read the books that were written, books like The Gifts of the Body, and remember. But we can also remember the books that will never be written. And the readers who will never be there to read them.
The Little Prince
Finding Friends
I MET Antoine de Saint-Exupéry’s little prince when I was eleven or twelve; as a preteen I found the book and its title character cloying. The Little Prince didn’t charm me, and the little prince didn’t either. There was all that talk of the difference between adults and children; there was the drawing that looked like a hat but was actually an elephant inside a snake; there was a journey from a small planet and the characters the little prince encountered along the way: a king, a geographer, and a businessman, to name a few. There was a flower and a sheep and a fox and a snake. And there was our narrator, about whom we knew very little, only that he was a pilot whose plane had gone down in the desert, and who had a limited amount of time—eight days, in fact—to fix the engine before he would perish of thirst.
Our narrator tells us the story of a little prince he meets in the desert. We learn that the prince is a visitor from another planet and that he has left a special flower there; he soon becomes terribly worried that a sheep might eat the flower.
Some people I knew—friends, and also adults—loved this little book. I remember seeing several people (once, two in a day) with tattoos of the iconic drawing of the little prince inked on some part of their body, even in the days long before everyone had a tattoo. A few also had a quote from the book etched on their skin: “One sees clearly only with the heart.” The book’s author had a tragic end that added another dimension to the story: Antoine de Saint-Exupéry was an acclaimed author and daring French flier who disappeared during a World War II reconnaissance mission. His plane went down somewhere in the Mediterranean as he was on his way from Corsica to Nazi-occupied France. This was one year and a few months after the publication of The Little Prince.
Having read the book as a preteen, I felt no need to read it again. I just assigned it to that enormous shelf of slender books that speak volumes to others but not to me.
I believe that we store memories in our muscles and our tendons and our bones, and they can remain hidden there for years. I’ll bang my elbow at the dinner table and suddenly remember something from decades before, often something painful: a day I disappointed someone or was disappointed, or a time when I lost my temper and was ashamed of myself for it, or when someone yelled at me. It’s not usually the happy memories I keep locked up in my body; it’s the painful ones.
On an icy winter day last year, I was feeling restless and decided to walk to a local bookstore. I stepped off a curb and nearly tripped over a soda can lying in the gutter. As I felt a sharp twinge in my ankle, I suddenly found myself remembering Lee Harkins, a ninth-grade classmate who died of Hodgkin’s lymphoma in the spring of our tenth-grade year. It had been years since I had thought of Lee, and that itself caused pain.
That same cold day, I bought The Little Prince, in the Richard Howard translation. I’m not sure why. It was on the front table of the local bookstore, Three Lives and Company, and I felt compelled to buy it. As I left the bookstore, it began to rain the kind of freezing rain that penetrates even the thickest garments, with a horizontal gusty wind that explodes umbrellas. So I went to a coffee shop to wait out the weather and started to read The Little Prince. And the more I read, the more I thought of Lee. There was no apparent connection. That’s just how it happened.
Books can attach themselves to memories in unexpected ways. All at once, L
ee’s story and the story of the little prince started to merge in my mind.
Lee had long straight hair, caramel brown—not curly blond hair, as the little prince did. But there was something little prince–like about her: something curious, and open, and raw, and kind. She wasn’t one of my closer friends that one term we went to school together—I didn’t really know her very well at all—but she was a friend. My guess is that many of the eighty or so kids in our class thought of Lee as a friend. She wasn’t sick when school began—or, rather, she was, but didn’t know she was. She was just another kid, an awkward, shy, funny, clumsy, but athletic kid. A popular kid. People liked to be around her.
We were at boarding school, so it was an intense year—our first away from home. That may have been part of the reason we formed bonds with one another so quickly. Sometimes it was Lord of the Flies, but mostly not. We became a loose-knit family, living together twenty-four hours a day, seven days a week. We came in as little angels, most of us, and quickly started to push boundaries. There was no line between the kids who followed rules and those who didn’t. It was still the 1970s, after all.
Then we went away for Christmas break. Then we came back. And then we heard Lee wasn’t coming back. Her two best friends kept in close touch with her and visited her at home and in the hospital. And then she was gone, during our tenth-grade year. We raised some money for an organization she had started while she was sick, to help people who didn’t have the kind of support she did while undergoing treatment for cancer. We dedicated our yearbook to her. We went to college. Some of us, myself included, sporadically kept in touch with Lee’s mother. And then I didn’t.
When our narrator in The Little Prince, our aviator shot down in the desert, begins to talk to us, he tells us that if he tries to describe the little prince, “it’s so I won’t forget him. It’s sad to forget a friend. Not everyone has had a friend.”
Lee died thirty-nine years ago. And the little prince, who at the end of the book leaves our aviator and our planet, left many years before that. But if the little prince still exists whenever you look up at the night sky and ponder whether there’s a flower somewhere out there that may or may not have been eaten by a sheep, why can’t Lee still be present, too? Is she any more gone from my life than the dozens of classmates with whom I was also friends, but now haven’t seen in thirty-nine years? Sure, they are alive. But are they any more alive to me? Perhaps they are less so.
In his travels on earth, the little prince comes upon a fox who has a simple request: he wants the little prince to tame him.
“I’d like to,” the little prince replied, “but I haven’t much time. I have friends to find and so many things to learn.”
“The only things you learn are the things you tame,” said the fox. “People haven’t time to learn anything. They buy things ready-made in stores. But since there are no stores where you can buy friends, people no longer have friends. If you want a friend, tame me!”
“What do I have to do?” asked the little prince.
“You have to be very patient,” the fox answered. “First you’ll sit down a little ways away from me, over there, in the grass. I’ll watch you out of the corner of my eye, and you won’t say anything. Language is the source of misunderstandings. But day by day, you’ll be able to sit a little closer….”
And so the little prince tames the fox, and they become friends.
Lee was our friend. And, for most of us, fourteen-year-olds unaccustomed to death, she was the first friend we lost.
I thought about all of this as I sat there in that coffee shop, waiting for the freezing rain to stop. And I looked around me and saw, as I always do these days in coffee shops, a sea of laptops. Everyone together and alone in public. Next to me was a young couple, clearly on a date. I overheard snippets of nervous conversation. It was sweet—the girl had long, straight hair that kept falling in front of her face, at one point catching the froth of her cappuccino, like a boat flying through the crest of a frothy wave. The boy had a tattoo of a dagger on his neck. After a few awkward moments, he pulled out his mobile phone. To snap a picture or send a text. And then she did the same. And there they were, across from each other, on a date, in a Greenwich Village coffee shop, staring at their little screens. Every now and then one would show the other something. But most of the time they didn’t; they just stared into the screens in their hands.
At one point in The Little Prince, after he meets the fox, the prince encounters a salesclerk who sells thirst-quenching pills: “Swallow one a week and you no longer feel any need to drink.” The little prince asks the salesclerk:
“Why do you sell these pills?”
“They save so much time,” the salesclerk said. “Experts have calculated that you can save fifty-three minutes a week.”
“And what do you do with those fifty-three minutes?”
“Whatever you like.”
“If I had fifty-three minutes to spend as I liked,” the little prince said to himself, “I’d walk very slowly toward a water fountain….”
I grew up in a world without cash machines, where you had to know the people at the liquor store, because if they remembered you, you could count on them to cash a personal check when the bank was closed. Making reservations for flights or hotels or restaurants required phone calls. If the line was busy or unanswered, you needed to call back. There were no answering machines. Everything took longer.
It’s not that I pine for the inconvenience of those days, but I do wonder what happens to the time. I should have so much more time. But I don’t. And I don’t know what I do with the time I have. I certainly don’t use my extra fifty-three minutes a day to walk slowly toward a water fountain.
I do know that I waste a lot of time comparing water fountains. Nothing is ever good enough. The friend we are with isn’t nearly as interesting as the friend who just texted us from across town. The restaurant we are in is fine, until we go on Yelp and see that there are dozens rated higher. Our smartphones bring us the world and tell us that something better, more fun, more exciting, more authentic, more hip, more moving is going on somewhere else.
I find myself returning again and again to one conversation, between the little prince and our narrator:
“People where you live,” the little prince said, “grow five thousand roses in one garden…yet they don’t find what they’re looking for…”
“They don’t find it,” I answered.
“And yet what they’re looking for could be found in a single rose, or a little water…”
“Of course,” I answered.
And the little prince added, “But eyes are blind. You have to look with the heart.”
When the little prince is getting ready to leave earth and his body and return to the place from whence he came, he says: “It’s good to have had a friend, even if you’re going to die. Myself, I’m very glad to have had a fox for a friend.”
—
After I finished reading The Little Prince that day, I sat in the coffee shop for a while, until the freezing rain stopped for good, and then I started to walk home, but didn’t. I walked all around the city. I was careful not to twist my ankle, and careful not to walk too fast. Off came the earbuds, piping into my head the random sound track to my life. Instead, I tried to look and hear. And I tried to remember every single thing I could about Lee.
What do we owe the dead, our dead? Maybe it’s first that we need to remember them.
Lee lived at a time when photographs required film, which needed to be developed. The only picture I have of Lee is on the tribute page in our high-school yearbook. If it hadn’t been for twisting my ankle, I might have gone years more without thinking of her again. Now, thanks to The Little Prince, I will always think of them together.
On Lee’s tribute page, the dedication reads:
Love lives on.
The best of what we mortals are, and what we create, lives on.
In a spiritual sense. And in other ways, too.
r /> Think how much poorer the world would be if, for instance, the words of Shakespeare or the music of Beethoven were silenced with their composer’s passing. How fortunate we are that it doesn’t happen that way.
Every time a school boy reads Hamlet’s soliloquy…every time a young girl sits at the piano and begins to play the graceful notes of the Moonlight Sonata…a brilliant idea of a strong emotional feeling bursts to life once again.
Ideas live on. Gifts and talents live on. Acts of caring live on.
Love lives on.
Recently I got back in touch with Lee’s mother, after more than thirty years.
Lee’s mom is now retired from her executive director role running the ever-growing organization she and Lee founded, and also from a postretirement career as a hospital chaplain. And the name of that organization she and Lee created to help people undergoing treatment for cancer? It’s called, quite simply, Lee’s Friends.
1984
Disconnecting
IMAGINE IF there were a law decreeing that every citizen had to carry a tracking device and check it five times an hour. This device was to be kept at hand at all times. The law also decreed that you needed to place this device on your bedside table at night, so that it was never more than two feet away from your body, and if you happened to wake up in the middle of the night, then you needed to check it. You had to check it during mealtimes, at sporting events, while watching television. You even needed to sneak a quick peek at it during plays and weddings and funerals. For those unwilling to check their devices at the plays, weddings, and funerals, exceptions would be made—so long as you kept your device on right up until the moment the play, wedding, or funeral was beginning and then turned it on again the second the event was over, checking it as you walked down the aisle toward the exit.