Holding Her Breath
It’s a little odd going to pick up a wheelchair at the same place we married just a couple of years earlier, but the Ichikawa City Hall, just outside of Tokyo, caters to a variety of needs. We approached the building with something of a spring in our step on our previous visit. This time we have to walk in step, my left foot hitting the road the same time as Akemi’s, then the right…only slowly…very slowly…her left hand resting on my right shoulder as I walk in front of her, careful not to disconnect the tube that joins us from the oxygen canister in a rucksack on my back to her nose.
Walking at a fraction of your previous speed means you notice things more. It’s mid-April. The cherry tree cancan has come and gone; their pink blossoms captured on millions of iPhones, then swept away by the wind. Soon, the more modest dogwoods will bloom. We stop by a bare tree to look for buds. When we return to our walk, I find it hard to get back in step.
I count slow four beats to the bar. One…two…three…four…like a metronome.
“You’re lucky,” she says. “I have to try and breathe in time too.”
“That makes you Pozzo,” I tell her.
She’s right, though. I am lucky. It’s no small thing to be trusted enough to hold someone’s breath. After all, you wouldn’t outsource the management of your oxygen supply to just anybody.
In time with the four beats to the bar, I add a little musical accompaniment: a few stanzas of sax, a guitar lick here and there. Careful not to dislodge the tube, the delicate thread that joins us, we do our odd little dance whose steps have started to invade my sleep. In a dream, I, too, had a nasal cannula that linked me to the oxygen canister on the back of someone in front who, in turn, was linked to another. Akemi and I were part of one long conga line that snaked its way through the street.
A middle-aged jogger in Velcro runs past, leg muscles bulging like tumours; a woman pushing a small child in a baby carriage whizzes by too, and I wonder if we’ll be able to reach similar speeds in the wheelchair.
Before we get to the city hall, a double line of kindergarten kids head in the opposite direction, hand in hand. They all turn and stare as they pass. We wave; they all wave back. And I remember the impossibility of old age and death in the mind of a child of that age.
“Just Married,” it says in three different languages above the cut-out heads on the picture board in the lobby of the city hall. I tried to persuade Akemi last time, after signing the marriage documents, that it might be fun to put our heads through the holes and have our pictures taken as the local area mascots: an anthropomorphised green clover and pink rose, but she wasn’t keen.
On the third floor of the city hall, it’s a quiet day. The fifty-something man, half-asleep at the front desk, eyes us uneasily. The meditative calm of his morning may be about to be disturbed by a grey-haired Westerner and a Japanese woman in a beanie hat.
Five minutes later, he shakes his head. The form we’ve given him has been filled in correctly, but a note is required from the hospital to confirm that she meets the necessary criteria for the loan of a wheelchair.
“I can’t walk properly,” says Akemi.
He nods his head. He understands. But simply not being able to walk properly doesn’t guarantee the loan of a wheelchair. A note from the hospital is needed outlining a condition causing the inability to walk.
Akemi says that there was no mention of a note on the city hall website, which offers the temporary use of wheelchairs for disabled or injured residents. He apologises for any confusion but asks us to imagine a scenario where anyone in the area could pop in and take a wheelchair without medical confirmation.
“People who don’t need them,” he adds.
“But why would they take them if they didn’t need them?” asks Akemi.
He lowers his voice so only we can hear him. “Some people don’t like to walk,” he says. He looks around suspiciously as if there might be wheelchair freeloaders in the room. There is a limited number, he goes on to tell us. It’s important that those most in need get them.
“She’s not well, really,” I say.
Akemi points to a part of the form she has just filled out outlining her condition: lung cancer with fluid in the lungs, causing breathlessness, and the side effects of chemotherapy that numb her feet.
He understands, but we do not have the required paperwork. A silence. Impasse. Akemi looks at me, then at the man in front of us.
His eyes, twice the size in thick-lensed glasses, look back.
Then Akemi, like a magician about to reveal a rabbit, whips off her beanie hat.
His huge eyes blink, then blink again at the hairless head in front of him.
A week before the chemo started, she made an appointment at a hair salon to have her shoulder-length hair cut short in preparation for what was about to come.
While other customers were groomed, preened and plumed by cooing, hairdressers, Akemi was plucked like a freshly slaughtered hen.
She stared solemnly in the mirror as her grey and black locks tumbled down the blue plastic cape and onto the floor. The young male hairdresser held a mirror to her neck to show her how he’d shaved it at the nape. She glared at his smiling reflection in the main mirror as if she wanted to kill him.
When the chemotherapy started, the speed at which the rest of her hair fell out was shocking. Within a week or so, she went from having a full head of hair to being as bald as a Buddhist nun, which made me think of tonsure, its universality in religions as an initiation and a leaving behind of a past life. The latter, at least, was true for Akemi. She lost weight, the monthly infusions made her exhausted, and the numbness in her feet got worse.
One of our joys was walking along the nearby Edogawa River. But with the chemo went the walks, with the walks went the view out towards the sea, sunsets when the river turned gold, the white herons, the black coots, the cormorants, the oystercatchers, the iridescent oyster shells. Quite a lot, really.
Akemi got a walking stick. At first, it helped, but as her leaking lungs filled with pleural fluid, she needed extra oxygen and walking alone, even with the stick, became impossible. So we found that if we walked together, our footsteps in sync, she could move a little better.
On school sports days, we sometimes had a three-legged race, where each pair of competitors had a leg tied together. Walking with Akemi was a bit like that, but we would have been last in any three-legged race. So despite her initial objections (“I don’t need a fucking wheelchair”), she finally succumbed and here we are at the city hall.
The man with the magnified eyes makes no move. It’s clear that this is not an issue of trust but of maintaining bureaucratic procedures, avoiding censure from those higher up the ladder of local government. It would mean putting himself out.
If his inconvenience were weighed against Akemi’s on a set of scales, there would be no equilibrium. He would be sea-sawing upward, hanging on for dear life to his scale, but he’s not going to budge.
Behind the big-eyed bureaucrat, I see others like him: the local doctor who told us there was only a “small chance” of cancer while he looked at the X-rays of my wife’s cancer-ridden lungs, leaving it up to the hospital to tell us the truth and filling us with false hope; the people on the train who hog the priority seats as they tap away on their phones pretending not to notice the infirm or the aged; the ‘carer’ who declined to escort my elderly father to the hospital after his fall because it wasn’t in his job description. They and others like them fill the space behind the bureaucrat, and in the throng, I see myself: a schoolboy doing nothing as Arnold Shaw is made to drink something that looks like piss by two bullies at secondary school.
Akemi looks at me. I look at her. I have an urge to hold her bald head in my hands and cradle it. It’s a feeling I often have these days. When she rests it on my lap, I feel like a bird with a fragile egg in my nest that I have to protect.
“Let’s go,” she says.
But then someone coughs. It’s not a croak, a rasp, or the wheezing, struggling-for-breath cough that Akemi has been afflicted with recently. It’s the kind of cough that’s not really a cough at all. It merely wants to attract attention. Hardly noticeable at first, but it’s repeated. The crowd behind the bureaucrat parts, forming a corridor that leads to a seat at the back of the office, where a fifty-something woman with cropped hair and horn-rimmed glasses is watching us.
The woman stands and, as if drawn by the beacon of my wife’s bald head, makes her way through the ranks of the jobsworths, the indifferent, the couldn’t-be-arsed, the not-so-innocent bystanders. She approaches the front desk, ignores her co-worker and asks Akemi what the problem is.
Her hyperopic colleague starts to explain the issue with the missing form, but she conducts the traffic of conversation effortlessly, raising the palm of her right hand to him in a stop gesture while her left beckons Akemi to go ahead.
Akemi starts to explain. The man now blinks repeatedly in confusion. He again interjects with talk of missing forms, but the woman stops him in his tracks with another raised hand and then turns to him.
“Kurosawa-san can I have a word with you?” she says.
The two retreat to the back of the office. We watch, unable to make out what they’re saying. From the body language, we see Kurosawa-san on the defensive, seemingly uncomfortable in a conflict situation. His hands hug his chest as if he’s hiding something in his jacket. She looks up directly at him. Her hands start to move in a gentle patting motion as if she’s petting an invisible puppy between them that’s half-clambered out of his jacket. He moves his head to one side and scratches it.
“His boss?” I wonder aloud to Akemi.
She, more versed in the non-verbal manifestations of power in Japanese offices, thinks not.
After four or so minutes of this one-sided sparring, Kurosawa-san, without a look in our direction, shuffles off to a back room.
The lady with the horn-rimmed glasses returns. She takes the seat that Kurosawa-san previously occupied and begins to speak to Akemi. She asks about her condition and listens as my wife talks about her illness and treatment. As she’s talking, the woman’s right hand reaches out and rests on my wife’s. It’s a move so unexpected inside the sagging somnambulance of the city hall that I almost let out a gasp but stop myself for fear that I might disturb the moment, as delicate as a raindrop on a blade of dry grass.
And I remember my hand doing the same, reaching out for Akemi’s for the first time fifteen years ago, on the table of a bar, trembling a little in case she pulled hers away.
She didn’t, and eighteen years later it’s still there.
I have to concentrate to catch the conversation as they talk in low voices. I gather that the woman has had cancer, too. They speak of swollen fingers, lack of appetite, rashes, and other things I am unable to follow as the talk flows back and forth like a fugue played between them.
Then the woman stands.
Akemi turns to me and nods.
“Tea,” she says, as if this were always part of the programme. I nod back, pretending to know what’s happening.
The woman, who I am told is called Morita-san, returns a few minutes later with a teapot and three beakers on a tray. I’m offered one but politely decline.
Akemi takes a sip of green tea, and Morita-san offers her a wafer-like senbei biscuit, which she takes and breaks before putting it into her mouth. They sip tea and say nothing now while I sit and watch this silent communion.
“I’ll take you to the storeroom and you can choose a wheelchair,” the woman tells us after the tray has been cleared away.
“But what about the hospital form?” Akemi asks.
“Get it next time you visit the hospital and mail it to us,” the woman says.
“We don’t want to get you in trouble,” I add.
She waves her hand in front of her face this time.
“Lot of nonsense over a piece of paper.”
Behind her in the room, others now take the place once occupied by Kurosawa-san’s imagined cohorts. Those who, when you feel you’re about to sink, throw out a small act of kindness: the doctor who told us to think of Akemi’s cancer treatment as a bowl of ramen full of nutritious toppings; the cleaner who dropped his mop and showed us the way out through the labyrinth of corridors after hours at the city hospital; the woman who brought my father home when he’d forgotten who he was; and the schoolboy who didn’t just watch as Arnold Shaw was forced to drink something that looked like piss and went and told a teacher.
When Morita-san opens the door to the storeroom, we are greeted by a smell that might contain elements of tobacco, oil, rust, mould and incense. She switches on the light and enters, beckoning us to follow her in.
Morita-san passes a heap of broken furniture and goes to a corner where, on a shelf, there is an altar. We follow her and watch as she stands in front of a small wooden Shinto shrine. Beyond a miniature torii gate and flanked by two porcelain foxes, a mirror hangs from a piece of straw rope. Morita-san bows. Then bows again. She claps twice and seems to make a prayer before a final deep bow.
I’ve seen these shrines in family houses but never in companies or the offices of local government before. I want to ask Akemi about this, but the time doesn’t seem to be right.
The wheelchairs are in better shape than the furniture. Just. There are five or six, folded up, with the same tartan upholstery, in a corner of the room.
“Number 137,” says Morita-san. “That’s the best one for you.”
The numbers are daubed on the frames.
I pull 137 out of the line, but find the wheels won’t move.
“Brakes,” says Morita-san, and I fumble before finding them by the footrest.
I wheel it to the door, still folded.
In the hallway, I try to unfold it without success before Morita-san’s hands once more work their magic, pulling apart the armrests and pushing down on the seat. The upholstered back opens like a sail. She suggests we dust it down and goes to find a cloth for that purpose.
Number 137 has been out of service for a while, as I suspect the others have been, despite Kurosawa’s fears of demand outstripping supply. It is aged but functional. It has the basic requirements of a wheelchair, nothing fancy: rear wheels, caster wheels, hand rims, footplates, brakes, side panels, and handgrips. If it were a car, it would perhaps be a ’70s Triumph Toledo. It would get you to your destination, no more.
Morita-san insists on doing the dusting herself. Then, as if it were a normal thing to do, she takes from her pocket a small brocaded silk amulet, a Shinto charm, and ties it to the right-hand rim of the wheelchair.
Akemi settles into the seat and puts her feet on the footplates.
“Can I have my breath back?” she says.
I take out the oxygen cylinder from my backpack and place it between Akemi’s knees. She touches my hand as I do. She releases the brakes. I take the handles of 137 and push.
We turn to thank and say goodbye to Morita-san by the elevator, but she has disappeared. I hold the elevator button, thinking she has forgotten something and will come to bow us goodbye as is the custom.
“It’s okay,” says Akemi, “she’s gone now.” And I wonder how she knows this.
On the ground floor, we pass the just married clover and pink rose and exit the city hall into the unexpected glare of sunshine.
On the day of our marriage, the sun was shining too. It was a short affair mainly concerned with signing forms and ensuring we had the correct documentation. Akemi had a pet scan later that afternoon, and I waited by a pond in the garden by the clinic. It was late spring, and the purple and red azaleas were in full bloom. In the clinic, they struggled to find a vein when they injected a tracer into her arm. But as the sun glittered in the pond, light appeared in Akemi’s bones and lungs. Later, her arm came up in a bruise the colour of the azaleas, and her diagnosis was upgraded to Stage 4 B lung cancer.
“At least I don’t need to worry about paying my pension,” Akemi said.
So our time spent making plans for the future was traded in for the currency of the moment. We didn’t realise at the time, but it would bring unforeseen riches.
She started on targeted therapy, I quit as much of my work as I could, and we’d
spend the days like two kids playing truant. Waking early, we’d take long walks by the river and watch the packed trains, commuters’ faces pressed against the glass, cross the bridge and head towards the city. On some mornings, we’d sit in the empty cinema and find something to laugh about, even in the worst film.
Akemi’s decreased mobility meant our world became smaller, but it filled out more. With no future, we lived in the present. We learned the names of birds we encountered and the trees and flowers that lined our route to and along the river. Happy to see them again, she names the flowers in English, like a spell, as we pass: tulips, thyme, sage, iris, poppy, anemone, Nigella, starflower.
But then the targeted therapy stopped working and the chemo began. She moved into the room next door to allow me to sleep. I hear her cough and her voice talking in her troubled dreams at night from behind the wall. And I sometimes fear that it’s me who’s dreaming, not her, and the room next door is empty.
The same group of kindergarten kids we saw earlier are in the park near the river. They’ve broken ranks and, lost in the joy of the moment, are running wild. A middle-aged woman walking a chihuahua looks on in bemusement. And I remember the impossibility of being a child in the mind of a person that age.
Akemi dismounts, and we slowly climb the steps leading to the embankment path. Once there, she settles into the seat of 137 again. The sunlight dances in the river and dazzles us.
Akemi smiles and breathes in the scenery, and for anywhere between ten and thirty minutes, we stay still, silent.
“It’s time to go,” she says, finally.
I start to push, slowly at first, but the path is smooth, and the chair needs little
force, so we start to speed up.
“Faster,” Akemi says.
We feel the wind in our faces, and the chair gathers momentum until I’m barely holding on.
“Let go,” she tells me now.
I grip onto the handles of 137, which seems to have developed roadworthy properties far beyond those of the equivalent of a Toledo.
I don’t want to let go because I know what’s waiting…but I understand that from the time our hands met on the table in the bar, that was the deal.
“Let go,” she says again.
I’m not sure if she’s talking to me or herself now because it’s the same with everything you love. You have to let it go in the end. That’s partly why you love it so much.
Then, from the river, a group of white herons takes flight, my hands lose their grip, and I watch Akemi and 137 follow the birds towards the sea.
