A year before, just about the time when everything had changed for me, she had started calling me by my brother’s name. She had also started talking to me as though I were a physician-which is what she had been, which is what I’d been expected to be. It was as if she somehow understood that my happy enough little world had just been blown up, and her response to that was to make me into someone else, as if that might let me slip free of the pain. After trying various other strategies, I had finally decided to play along. As a pretend-doctor, I could at least accompany her a short way down some of the roads she traveled. I could do a better job of bringing that light to her face when I walked into the visitors’ room. Somehow, by some interior mechanism I did not understand, my being a doctor partly rebuilt the connection that had been broken by her illness. I could sit again in a skewed version of the warmth and generosity I’d grown up with, and once you’ve had that kind of affection in your life, you are marked by it forever. What my mother had given me, given us, was exactly what Gerard had not been given enough of as a boy. He and I talked about that sometimes.
That day, Mum and I walked the neat grounds of Apple Meadow, around and around, back and forth. It was the new pattern: sometimes she held my arm and was quiet. Other times she said things like this: “It’s not a question of money, Ellory. Money just represents something else, an agreement to value one thing over another. Only children don’t have this value put on them because children have one foot in the ocean and pay no attention. It terrifies us, this ocean. But the fear of drowning is absurd. We already are drowned.”
“Exactly,” I’d say, and we’d stroll along like intellectuals on holiday in Baden-Baden.
And then, at some point after it had circled and circled and spun off in a series of nonsensical eddies, the conversation would drift back to her old world, the world of medicine, the world of being paid to care about other people’s pain and fear. It was very strange because, in that world, whole sectors of my mother’s memory and thought processes had been left undamaged, and it always sent a happy jolt through me when the conversation went there and we were actually almost making sense again.
“How is your practice?” she would ask, with so much pride in her voice that it made me wish I’d stayed in med school. “What interesting cases have you seen recently, Doctor Entwhistle?”
Sometimes, before visiting her, I’d go on Gerard’s computer and spend an hour researching exotic illnesses. One Saturday we’d talked at length about intestinal parasites in children, and the strange variety of symptoms they could cause. The Ebola virus fascinated her, and had led us to leeching and leukemia. Her mind was a library in which certain floors and sections of stacks had no electricity, and others were still well lighted enough for reading.
“I have a patient with cystic fibrosis now,” I told her on that day, because I had not been able to stop hearing Janet’s voice as she lay in the darkness.
“Horrible,” my mother said. “A ghastly disease. A torturer. A killer of children.”
“Young adults now, mostly,” I said. “They’ve made some advances.”
“You’re more in touch with these things than I am.”
“She’s twenty-seven, my patient. Almost the statistical mean age of death now.”
“Ah,” my mother said, sounding surprised. She spent a little while searching around in her interior darkness. “Pseudomonas bacterium?”
“Yes.”
“Constant coughing? Digestive troubles?”
“Pancreatic enzymes,” I said, and with that, I came to the end of what I knew.
“Horrible, horrible.”
We walked another few paces. “What causes it, Mum?”
She turned her stone-blue eyes up at me. “What causes it? You must have slept through the lecture that day, Ellory. Are you asking seriously?”
I nodded.
“A gene. A defective gene.”
“I know that,” I said, and gave a little fake chuckle. “But at the cellular level. What is the exact… what is going on?”
“Salt and water don’t pass between the cells easily enough, the mucus is thick, the skin is salty, haven’t you noticed? It’s one tiny mistake. A glitch.”
“There are new drugs being developed,” I ad-libbed. “There’s talk of a cure in the not-too-distant future. I wanted to ask you what you’d recommend in the way of treatment.”
“Not my area of expertise.” She swung her hands out, palms up, her ring finger wobbling slightly as I had seen it do a thousand times. “But they have identified the gene, as you know.”
“Yes.”
“Done some work with new antibiotics.”
“Yes, that’s right.”
“What I would suggest is that you go and speak with Doctor… at the Beth Israel. With Doctor… Doctor…”
I could feel the change sweeping through her. It was as if she’d managed to escape from a great heavy demon and run a few steps back toward sanity, and then the demon had caught her from behind, wrapped itself around her, and was now in the process of dragging her back into the darkness. Her muscles stiffened. Her face puckered, turning up the fine light hair on her cheeks. Four, five, six times she tried for the doctor’s name: “You really must consult with Doctor… Doctor… Ellory, it’s Doctor…” At last she surrendered and let herself be dragged back. When she spoke again we were miles apart. “Gwendolyn Mitchell and her brood of six went to the minister’s house for Sunday dinner, you know, and once the squash was served you couldn’t find a place to sit at the table, can you imagine?”
There was a connection somewhere, I knew that. I had some understanding of the ways her mind worked now. Maybe one of the Mitchells had suffered from cystic fibrosis. Maybe the doctor’s name at Beth Israel was Mitchell or his wife or assistant was Gwendolyn. Sometimes the word my mother was searching for would pop up again an hour later, in the midst of another conversation, or as we were saying good-bye, or when I spoke with her on the phone in the middle of the week.
“Nothing is harder to imagine, Mum,” I said.
“They weren’t always that way, the Mitchells.”
“No.”
“In fact, we liked them. Out of pity, I sometimes thought, but we liked them.”
“Never a good motivation,” I said.
I turned her back toward the main building and when we were inside I spent a little time with her in front of the communal TV, watching football-her latest passion. When I was ready to say good-bye she kissed me and held me in her strong arms as if she were still living in the two-hundred-year-old blue saltbox in Concord, and my father was still alive, beside her, smiling and puffing on his pipe, and my brother Ellory was still a hell-raiser who had not yet shocked the neighborhood by turning Catholic and becoming a monk, and my sister Lizbeth was just a pretty teenager who had not yet made her life into a constant search for drugs and the money to buy drugs. For those few seconds my mother squeezed the guilt and sorrow out of me and we traveled back to a place where we had been happy, unusually happy, unscarred, suburban, American, bubbling over with health and brains and energy, convinced the future would be kind and good. Our embrace was a kind of code. “I’m still me,” she was signaling. And I was answering, “I know. I know.”
But I left Apple Meadow wondering how many years she would live like that, and what it felt like inside, and whether it really made any difference at all to her if I visited or stayed away.
13
YOU CALLED AT a key moment,” I told Gerard on Monday morning, when he asked why I hadn’t answered the phone to tell him about my date with Janet at Diem Bo.
“There are three key moments.”
“It was the second.”
“That’s it? No details?”
“Have I ever provided details about my love life?”
“Not in a year or more, no. I was only giving you the opportunity to enjoy the experience a second time by telling the story to your closest friend.”
“Thanks. I’ll pass.”
“I’m hurt.”
“We went to Diem Bo for supper. How’s that?”
“What did you have?”
“Scallops and sea bass and duck.”
“La frutta di mare. Good. And where did you go afterwards?”
“For a swim.”
“Skinny-dip?”
“Fully clothed.”
“Alright, stop there,” he said. “For an imagination like mine, that’s enough. The possibilities from that point are endless.”
“In the Charles River,” I said.
“No no, don’t spoil it, Colonel. Let the imagination run free. Let it run wild! The Charles’s fetid waters lapping against her tight bodice. You in your Sunday best, your trousers wet and your manhood surging against the material. No, leave me to my imaginings. Please.”
I left him to his imaginings.
We had finished framing the professor’s addition and were involved in the monotonous nailing of half-inch plywood onto the second-floor walls. The professor’s name was Jacqueline Levarkian and she taught theoretical physics at Harvard. She was an attractive and obviously brilliant single woman, and from the day we’d started working there, in midsummer, Gerard had been trying various stunts to get her to pay attention to him. Once, when he knew she was home, he pretended to slip off the staging and dangled there, holding on with one hand and screaming out over the sedate Cambridge neighborhood for me to rescue him, pedaling his legs and gesticulating wildly with his free hand, three feet above the ground, like a circus clown. Two or three times during the workday he’d flip his thirty-two-ounce hammer into the air, end-over-end, three full revolutions, catch it expertly by its blue handle, and pretend to be making up physics formulas to describe the hammer’s movement (“You take the cosign of s, where s represents the centrifugal force of the atomic weight of steel…”). He’d sing snatches from operas he liked. He’d bring books of poetry-Latin, Russian, Italian, Greek-to the work site to impress her. Once, when Jacqueline had an afternoon off, she brought us out homemade oatmeal cookies and iced tea and Gerard engaged her in a complicated discussion of something called string theory, then kissed her hand afterwards.
I knew this about my friend: early in his life he had not been given some quality of motherly or fatherly attention that says: I see you. You are fine as you are, flaws and all. You are accepted, you are beloved. And ever since then he had tried to fill up that empty place by getting attention, especially from women. Which had not made marriage an easy thing for him. Or for his former wife. With me, he talked too much and joked too much and laughed too loudly and called at all hours. But he could work like a pair of oxes, and I had never seen him be mean, and when Giselle died, he made sure I never sank below a certain level of rock-bottom misery and I did not expect I would ever forget that.
I picked up a sheet of plywood, leaned it sideways against my hip and shoulder and the side of my head, and then passed it up to him on the staging.
“Huddy! Queek!” he screamed as I was climbing the ladder. “Eeet eez sleeping from my grahsp!”
When we had worked it into place and were driving the galvanized eightpenny nails at six-inch intervals, I asked him if he knew anything about cystic fibrosis.
“Jerry’s kids,” he said, going into a terrible imitation of Jerry Lewis’s honking, bighearted goofiness.
“That’s muscular dystrophy. I’m asking about cystic fibrosis. CF.”
“All the alphabet diseases are awful, Colonel, I know that much. AIDS, ALS, MS, Ph.D.”
“Is this something we want to be joking about?”
“If it is what I think it is, then one of the only things we can do is joke about it, Colonel. You should understand that.”
“Right. The woman I went out with on Friday night has CF.”
“Sorry.”
“Don’t worry about it. You need a governor on your mouth, though, sometimes.”
Governor on your mouth. Amazing how things like that just slip out. Gerard, naturally, would not let it go.
“Actually, if I had incarnated into a woman’s body, I wouldn’t mind the governor on my mouth. Our governor is one cute governor compared to, say, the governor of New Mexico…” and so on until I finally told him to stop, twice, and he did.
When we finished the nailing and were putting our tools away, I asked him if I could come over and do a little research on his computer, and I did that, then went home and painted for a while on a fresh canvas. But the work was timid work, uninspired, unsurprising, no good. As if they were marching on a parade ground behind my eyes, I could feel whole battalions of jealous soldiers in new uniforms. And I could hear a lying old self trying to convince me that Janet was a one-night type of woman. Skate on, skate on, the voice said. Too much trouble. Skate on. I gave up on the painting, cleaned the brushes, turned the easel around so I wouldn’t have to look at what I had done. After thinking about it for another little while I picked up the phone and called Janet to ask her out again, and we didn’t talk about the governor, or the alphabet diseases, or any kind of subject like that.
Book Two
O c t o b e r
1
IN BOSTON, OCTOBER is the month when you have to stop pretending to yourself that the good weather will go on and on. The leaves catch fire and swirl out gold and lemon patterns at the bases of maple trees, but it’s just a last show meant to take your mind away from the fact that things are dying all around. If you work outside, you can feel this dying very plainly in late October in the afternoon. The cold Halloween air has an unsympathetic quality to it. Lights blaze out from storefronts and third-floor apartments, but the darkness seems to swallow them after they’ve traveled only a few feet so that they feel cut off from each other, isolated pockets of warmth that offer themselves happily and optimistically but really are only hoping to make it through another night.
I like October-early October, especially-in spite of the slow death of things. Janet, it turned out, was a big October fan. And it turned out that we matched up in other ways, too. Drives in the country, Middle Eastern food, art museums, music that ran the spectrum from Bach to Pearl Jam, weekend nights in bed, weekend mornings in bed, spontaneous bursts of harmless adventuring, long rides on Friday nights (it took a while for the replacement parts to come in, but I’d gotten the truck fixed up finally), people who were quirky and generous-we had an appreciation for a lot of the same types of things.
We did not talk about the governor, or Giselle. And we talked only in short, rare bursts about cystic fibrosis-those were the unspoken rules for us. She was getting sicker; it did not take a pulmonologist to see that. And, by the time we’d been going out for a few weeks, I had done so much reading on the disease that I knew where the getting sicker would take her, and along what routes, and about how fast.
I had learned that there are certain kinds of bacteria with pretty names like Burkholderia cepacia and Pseudomonas aeruginosa that thrive in the thick mucus in the lungs of cystic fibrosis people. These bacteria are everywhere-in the skin of onions, in the moist air of a shower stall, in Jacuzzis, in river water-but they move into and out of normal lungs without anyone ever noticing. If they visit the lungs of a person with CF, though, they stay there and form colonies, and the colonies throw up dense films that act as shields against the assault of antibiotics. The delicate tissue of the inside of the lung tries to protect itself against these colonies and becomes inflamed. Over time, the inflammation breaks the cells down so that the complicated system of blood and breath doesn’t work anymore the way it was designed to work. Over time, over almost thirty years in her case, enough lung tissue has starved and rotted so that you can’t walk up three flights of stairs to your boyfriend’s bedroom without sounding like you’ve just been on the treadmill for an hour at the gym.
Near the end of September, Janet’s pulmonologist, whose name was Eric Wilbraham, sent her into the hospital for five days of intravenous antibiotics to try to control the bacteria, and I went there every day after work
to make her laugh. One night I caught Doctor Wilbraham in the hallway. I have the bad habit of forming solid impressions about people on first meeting, and I didn’t like him. But we had a pretty good conversation about spirometers, and pseudomonas, and cepacia, and chest physical therapy, and inhaled steroids and Pulmozyme, and things like that. My mother would have been proud. I had become semiknowledgeable on the subject, which was not necessarily a good thing because I could see, beyond the doctor’s pleasant and hopeful science-talk, the outlines of what was happening, and it was like a small, sharp-toothed animal in my gut, gnawing away. In the week before she went into the hospital, Janet had started to use oxygen at night sometimes. Usually she had to stop twice to rest on the way up to my apartment. She was twenty-seven.
After that hospital stay, though-a “tune-up” she called it-she had a good week. The movement into her blood of the most powerful antibiotics in the medical arsenal had beaten back the bacteria. She coughed less, she had more energy, a healthier color returned to her face. She was pretty and hopeful again, the way she had been when I’d first seen her.
By then, Gerard and I had the professor’s addition all closed in and we were nailing up the long, rust-colored rows of cedar clapboard, a job I loved. On the second Friday in October, the start of the holiday weekend, I finished work, went home and showered, and drove down to the State House to pick Janet up. On two other occasions I had been to her office, and had met a couple of her friends there, and I could tell she had been talking to them about me, and that they were examining me to see if I was worthy, which is what friends always do. That night I found a parking space two blocks from the side entrance and went in that entrance, through the security checkpoint and up two flights of stairs. The Massachusetts State House is really a spectacularly beautiful building-murals on the walls, mosaic tile floors, stained glass, carved wood. Someone named Bulfinch designed it, and he went all out to impress people with the authority and importance of government. But for some reason I had never felt comfortable there. Years before, I’d been inside the State House for an Arts Council ceremony. I had won a grant, and though I was glad and honored to have won the grant, the air in the building seemed to press on me from four sides with that history-all golden and flashy on the surface, all dirty and smoky underneath. It was a strange thing: I felt that if I stayed in there too long, I’d never be able to paint again.
A Little Love Story Page 6