Owen was still there. The doctors still hadn’t found the source.
In my novel, there was a boy Bea’s age whom she would go visit. She was sleeping when he died, in the middle of the night, and nobody would tell her what had happened. The book was called Everything We Could. I liked that there was hopefulness to this phrase in one context—“it was everything we could have imagined!”—but that it’s also what doctors say, what the doctors said in the story, when people die.
“I’m sorry,” they’d say, taking off their tiny glasses, the heart rate flatlining on the monitor. “We did everything we could.”
On September 20, we were told that a bone marrow match had been found. We knew nothing about the donor, but I instantly and forever after imagined it was a man, about twice my age, and living in England. The match was a 9/10, which was extremely good, they said. The closer the match, the less likely my body—“the host”—was to be attacked by the donor cells, or “the graft.” Graft versus host disease is one of the most serious risks of any kind of transplantation, but it’s most commonly associated with bone marrow transplants.
Most animals do not carry their young within their bodies for the same reason: one would reject the other, and there would be no survivors. If it weren’t for a virus which led to the formation of the placenta, mammals as we know them would not exist. Mother mammals develop this organ in order keep the blood and waste separate from their own bodies while growing their young. Among other things, this is why our children can have different blood types than us, different DNA, different everything. Because of a virus, children start out life, as Alcestis said, as “masters / In their own house,” even though they are housed within our bodies.
In my twenties I volunteered in the cancer ward of a children’s hospital in Paris, and met a young boy, about fourteen years old, who wanted to practice his English with me.
“Sure,” I said, delighted to feel like I had a real reason to be there—most of the time I wandered the halls feeling useless. “What do you want to talk about?”
“Anything.”
“Okay, do you like books?”
“Not much.”
“Movies?”
“Not much.”
The feeling of uselessness was creeping back; these were mostly all the things I talked about. “What about sports?”
“I like sports,” the boy said.
“Great.”
Silence.
“I like to go running,” he said.
“I like running too!” I replied, overly elated.
This boy and I figured out that we lived in the same neighbourhood in Paris, on opposite sides of the most beautiful, wildest park in the city.
An expression of nostalgia came across the boy’s face, and in the moments before he spoke, I could see he was inhabiting a beautiful memory. “When I had health,” he said, in his accented English, “I would go running in the park of the Buttes-Chaumont.”
When he had health. When health was something he possessed.
I didn’t tell this kid that I’d had cancer too. I didn’t want to take anything away from his own experience. Every time I run now, I think of this boy. I have health, so I run.
I’ve been thinking a lot about permanence. When the surgeons told me, before inserting the central venal catheter into my jugular, that a scar would remain on my chest, I didn’t think about for how long. I wasn’t thinking about forever then. But it will never not be there. Forever is impossible to fathom. For until I die.
My friend in Sweden had a baby and wrote to me when he was five weeks old, five weeks before my baby’s due date: “the realization that the baby is here with me for (hopefully, if God is good) the rest of my life has taken me somehow unaware. Forever is so definite, and the thought of the responsibility is sometimes frightening—he is so small and helpless and in need of protection—and if anything happened to him, how would one survive?”
This friend and I both used to model for a painter friend of ours called Rosy. There’s a particular painting of Rosy’s that’s always been one of my favourites: my friend is lying on her side, breasts and belly facing us, with a grey cloth—which always reminded me of a void, rather than a blanket—over her hips and legs. Her eyes are downcast and she looks mournful, nearly wounded, and yet simultaneously deeply at peace. I asked my friend what she was feeling while it was being painted, and she laughed: “That painting took months, I was thinking so many things!” This was before I started modelling myself.
The first time I posed for Rosy, she asked me to get onto a table topped with a mattress and find a comfortable position. I lay on my stomach and crossed my arms underneath my head. “Perfect,” she said. “That’s perfect, just like that.” She got a permanent marker and drew circles to mark the feet of the table as well as her easel, so that the perspective would remain constant. She also used masking tape to mark my elbows, head, hips, and feet, as well as the edge of the pillow I held. Any time I took a break, or when I returned for the following session, it was important to find just the same pose again.
It was such a comfortable position, and such a comfortable situation, that I often fell asleep as she painted me. When I was awake we would talk, but when she was working on my face we didn’t talk, and I would watch her face at work.
While she paints, her face gets so worked up with concentration that it almost looks as if she is labouring to build something physical. A house, not just a painting. She’s constantly looking at me—in a way that feels like she’s looking through me, like I am object, subject, background and foreground, but already just a painting—and putting the paintbrush at various angles to compare the lines of my body to the straight line of the brush.
I like watching the colours she picks up and wondering to which part of me they correspond, but it’s almost impossible to guess. What I’ve learned is that human skin, flesh, is made up of every colour, really.
Though it’s a matter of fact that having your portrait painted captures you, the subject, at a particular and transient moment, I never thought of it that way. I didn’t think about it being a past record in a distant future because modelling, for me, is a way of spending time in the present. Like being on a train, modelling is a way for me to stay still and yet be doing something. Going somewhere. Thinking about things. Getting transformed into art.
I returned to Rosy’s studio once or twice a week over the course of a spring and summer as she worked on that first painting. I went to Switzerland and got a tan, which meant she had to darken the colour of my skin; I got my heart broken and then fell in love, which probably changed nothing about the painting for most people, but when I look at it, I know. Rosy requested I wear little or no makeup but keep my nails painted the colour they had been the first day: she loved the pale oceanic blue and thought it worked well with the overall colours and feeling of the painting. The name of the nail polish was “Sea Change,” and the name of that painting is just Harriet. Rosy started Harriet when she was three months pregnant, and finished just before she gave birth.
Right after the pre-cancer had been found in my cervix, I told Rosy about how I had, as if for the first time, realized that I would one day die.
“Oh, of course,” she said, immediately understanding. “That’s the greatest fear. But isn’t it just so amazing to be alive in this moment?”
Round five started on September 24. The chemotherapy was scheduled to start at four p.m., and at two o’clock, my mum noted that we went to sing Happy Birthday to Richard. He is 4 today.
The little boy’s mother was speaking to my dad, cycling through the futile litany of “why me, why us, why him.” Later, my dad went back to their room and took the mother aside.
“This kind of thinking,” he told her, “you just can’t go there. It’s not worth it. It won’t help your son. You have to work so hard to be positive, for him if not for yourself.”
I
didn’t know my dad had done this until years later. My mum told me. She said he did the same for her.
Partway through the fifth round, we had a conversation with the doctors about whether or not to continue with the bone marrow transplant. My dad wrote: BMT should be a fresh start, to which I added and is what they recommend. My parents were wavering on whether or not a transplant—an incredibly risky procedure that would guarantee a more difficult life in the long term, even if it did work—was a good idea, but I no longer trusted my own body. I wanted a new one.
That night, a note from my mum: 3:30am, spaghetti dinner! Behind these two words is a much bigger moment.
It’s hard for my mum to talk about this period. Usually she finds a way to avoid the subject, or talks instead about the generosity and support we received as a family back then. She had to work harder than my dad did to put on a brave face for me; I never saw her cry back then, yet I knew it happened when I wasn’t around. But today I ask her bluntly, over the phone, if she was ever afraid that I would die.
“Do you remember,” she says to me now, her in her home and me in mine, “one night, when I was on duty at the hospital, you called out at three a.m. and asked if I was awake?”
I tell her I don’t remember this.
“I said I was awake, and you said, in a quiet voice, ‘Mummy, am I going to die?’ and in my head I was screaming,” she starts crying over the phone, finally letting down the wall she’d erected to protect me from her fear, “I was so terrified, that’s what I was so worried about and thinking all the time, but out of my mouth came the words ‘of course not, don’t be silly, you are what makes Dad and I a family and nothing is going to change that.’ And then you were quiet for a moment and said, ‘Okay, I’d like some spaghetti, please.’ ”
She wrote about the food but she remembered the fear. She had been my first home, she felt responsible for keeping me safe in this world, and I wonder if, in these moments, she felt she had failed.
And so, at 3:30 a.m., my mum made me a microwaved spaghetti dinner on the china she had brought from home.
I text my friend:
Two questions
If I buy a giant container of blueberries can I freeze some? Like, is frozen fruit just fruit that is frozen? Second question: do you ever get such an overwhelming sadness just that time is passing?
I lived in New York for a summer, after graduating from university and before moving to Paris. Going back to New York to visit, six years after I’d left, I saw a guy I’d known when I lived there, and whom I hadn’t seen since.
“Hey,” he said. “It’s been a while! You still living at the corner there?”
I was stunned. It had been six years. Did he honestly think I could have lived there for that long without us having crossed paths? Was it that his sense of time was completely distorted, and he didn’t realize how long it had been? Or was he just making polite chit-chat?
I lived in Paris for seven years and have now been living in Toronto for two. Just now, as I was walking on the rail path in my neighbourhood, a guy went past me on a skateboard, and he looked just like a neighbour I’d had in Paris. This neighbour was a fixture in my life: not important in it, just contextual. I have not thought of him in years, but when this guy who was not my old neighbour skated past me, I felt a shortness of breath and tears in my eyes. I have new neighbours; I will never have that man as a neighbour again. Or at least, not in the same place, the same time.
My friend responds:
1. That’s a googler but I’d say yes
2. Of course. That sadness is a gift so you don’t miss the passage of time.
The past, though we carry it with us always, is untouchable.
The chemotherapy was doing its job battering down blood cells, and I was a bystander taken down in the wake of the drugs. I got extremely sick. More sick than I had really ever been up until then.
On October 8, I wrote on the forum:
Hellooooo
The doctors have confirmed (sort of) that this infection is the same one as last time—as well as a few more , so they are discussing taking out my Central Line and replacing it after a few days of antibiotics, since the infection could be IN the Ivy line . I’ll have to have 2 surgeries though, one to take this line out, and then a separate one after a few days of antibiotics to put another line in. I had a chest Xray today to make sure that I don’t have pneumonia (which I don’t ) and the doctor let me see it! It was really cool, you can see the Central line in my chest!
I was started on a two-week-long course of four different aggressive antibiotics for an infection for which they did not know the source, and the cause of which would likely not clear up until my immune system recovered.
Before the surgery to remove the central line, I spent an entire day NPO waiting—no food or liquid all day—and receiving blood transfusions to get my numbers higher for a safer surgery. At 11:15 p.m., the surgery was called off because my counts were wavering and the operating-room schedule was still just too full. Exhausted and frustrated—and in my case, starving—my dad and I ordered pizza.
The surgery was finally performed the next day, a Saturday.
October 12, my dad’s hand:
38.4 Celsius at 12:15 am, Tylenol
Kirsten on duty again. More platelets planned to get closer to 100 for OR.
9:45am, the call we’ve been waiting for—HL to OR
10:00, platelets started
10:15, down in OR (whole bed moved from room 21). Dr. Eger is the surgeon. “Snowman suit” for DL to be with HL ’til she had the sleepy milk at 10:45.
I wonder if “sleepy milk” was the hospital’s term or my father’s. I don’t remember hearing it, but the anaesthetic was a thick, white milky liquid that, if put through a peripheral IV in my arm rather than the permanent IV in my chest, burned like a punishment for the brief seconds that I was awake to feel it. I suppose it still burned after I was knocked out.
Later that night, in my mother’s hand:
5pm, Mary arrives with apple pie and Mummy’s Minestrone Soup.
Harriet told us of incident in recovery room when nurse and anaesthetist were discussing Harriet’s case, thinking she was asleep. We told Kirsten and the nurses on 8A called and spoke to the nurse in OR, who was v. apologetic and upset and said she would talk to the Dr. and not do this again.
Trying to remember this is like trying to remember a dream from half a life ago. I’m not sure I can pin it down. What comes to me is something between images and feelings. There were so many dark hospital rooms, the sense of an abyss always before me, strangers all around me, a solid wall at my back with medical supplies affixed to it, a blood pressure cuff and oxygen tanks. These were the constants, no matter where I was. As I try to recall this particular moment, overhearing this conversation as I was coming out of the fog of anaesthetic, I have a sense of solidity coming out of the shadows, I have a feeling of being very small, but still, all I see are shadows.
When I ask my dad about this moment now, he immediately looks concerned. “Oh yes, you were very upset,” he says. “I wasn’t allowed to be with you when you woke up because they were monitoring your breathing, and when they finally let me in the room, you were still quite foggy but very upset about what you’d heard: one nurse asking another what it was that you had, and upon hearing what it was, saying something like ‘Oh, I wouldn’t wish that upon anyone,’ or something. It wasn’t malicious, but they shouldn’t have said that around you.”
I tell him that the note in the book said it was a nurse and an anaesthetist, and he says, “Oh, well it was a long time ago. Perhaps.” This detail may be blurred, but his memory of my feelings, and their consequences, is sharp.
Even though I didn’t—and still don’t—remember this moment, I did incorporate something about this into the novel. My memory of the reality has merged with how I wrote a
bout it.
In the book, Beatrice is awake in her room at night, her mother asleep on the cot at her side, and she hears two nurses discussing whether or not she’s aware of just how sick she really is.
“They think it’s the Natural Killer?” one nurse says.
“Poor girl,” the other responds.
As a fifteen-year-old, a minor, I was a subject of my parents. It was up to them to tell me what they thought I should know, and I felt that I was aware of everything. Maybe there were gaps in what I was told, but there were also spaces in what the doctors knew, and in how we were able to comprehend their information. (There is a crack in everything / that’s how the light gets in.)
But when Bea heard these two nurses, it was the first time she’d heard the term “Natural Killer,” and she learned that her condition was far more serious than she’d been led to believe.
The surgery to remove my central line didn’t take away the infection. The fevers continued. In addition to the new permanent IV on the inside of my left bicep, which has left me with a scar shaped like a star, a second peripheral IV was inserted so that I could have more drugs simultaneously. A rash, or just an itch, developed on my upper cheek, near my left eye. A nurse noticed it, told a doctor, and that same afternoon a dermatologist came to take a skin sample from the patch of skin that required two stitches to close and morphine for the pain, and left me with another tiny scar.
Nothing was ever found from this skin sample. It was probably just a pimple. I knew they were getting desperate.
The “if she starts shaking” drug was started up again. The nurses changed its name from amphotericin to amphoterrible. This time, I did start shaking. A lock-jawed, full-bodied, fever-dream tremor.
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