first person

My Mother in There

That was her, in an iPhone, a hospital bed, and my memories, free of her sickness for the first time in 40 years.

Photo: Getty Images/iStockphoto
Photo: Getty Images/iStockphoto

My mother is dying and I am watching from an iPhone. Her eyes are fixed on my face and we are transmitting secrets to each other. I am in here in my body and you are the only one who knows, she relays to me. In Japanese, our private and shared language, I ask if she is in pain and she twitches: No.

The nurses patiently holding her iPad haven’t caught the motion, but then they haven’t learned to track her tiny movements as well as I can track them and have tracked them nearly all my life. I know my mother won’t repeat the gesture for them; she is tired of doctors and nurses and the only person she longs to see is me.

Over the past 40 years I’ve almost always been with my mother when she has gone to the hospital. I need to be there now. I know the names of her medications and the dosages. I know she cannot take any penicillin-class antibiotics, that she is negative for TB, that there is no metal in her body, and that she is a DNR. This time, though, due to COVID, I can’t come to the hospital unless she is actively dying. That’s when I will get out of the iPad.

I have never had much use for an iPad. I have one and have used it for reading, but now that the iPhone is bigger I can just use that to read the news and take photos. But the iPad is perfect for the hospital. My mother cannot use her hands to bring a device up to her face as she did with her iPhone when we used to FaceTime. But the iPad is big enough that my son and I can fit into her screen easily and she can lie in bed and see us. On my end, I keep her contained to my iPhone. I think about answering the nurse’s FaceTime calls on my computer, but I don’t want to see my mother so sick and in such large proportions. I prefer my very sick mother to be smaller, and in my hand.

The first time a nurse connected me to my mother on the iPad, after she was admitted to the hospital on Christmas Day, I was relieved and actually happy. I had been talking to so many doctors and nurses and googling their faces so I could imagine the people with whom I was exchanging intimate knowledge of my mother’s body and condition without being able to see a thing. So when the nurses FaceTimed me from the hospital, I felt the profound relief you experience when a treasured book has gone missing and is finally relocated. I took a photo of her face out of habit. Since then, I have held my iPhone up to the window by the bird feeder so my mother can see why it is that this year our county, Monterey, is the No. 1 viewing location of the cheerfully bright yellow-and-black Townsend’s warbler. I have held the iPhone up in the doorway while my son attempts to demonstrate his ability to balance on a bicycle. I have watched as the physical therapists try to get her to stand to “bring her back to baseline.” I took a photo of this too, then later deleted it. It looked like torture when her 89-pound body, weak and exhausted, was exhorted to get up, and I can feel on my end that all she wants to do is rest. I can feel it because I know how she is feeling, because her body is a second body to my own.

From childhood, I learned to sense a reciprocal tightness in my chest when she was struggling for air. I learned to track her inhaler so I could locate it quickly to help her breathe again, and so I could relax too. It was not just the inhaler. I learned to buy sweaters with zippers, not buttons. Pull-on pants. I could find her a seat on the subway. I found the table in the café in Paris least exposed to cigarette smoke. I learned to track it all so she — so we — would be more comfortable.

In a way, it’s not so bad relating to her on the iPad. It feels like an extension of the way I was living anyway. I used to fly to New York — to Osaka — and pick up a relationship with a friend: “As if no time had passed!” During the pandemic I have had less and less of a body, and my physical life has increasingly taken place in my head. “I’m doing an event in Pennsylvania.” “I’m teaching a class in New York.” “I have a meeting in Minnesota,” I say, but it’s just my face projected on a screen, talking to other disembodied heads. It is so unsatisfying to be sitting here in my pajamas, talking to New York. On the other hand, when my friend Garnette smiles at me from Virginia, I smile back. I feel excited to see him. That excitement must be real, and the warmth in his smile must be real too. Something true can cross the iPad.

I have learned to look at resale shops online for used books and jewelry. I buy clothes. I know what kind of neckline I need, something with a V to elongate my body. Blazers are an easy purchase. I can see them online and then envision them on me. The magic of this transition — a thing dreamed becomes a thing real — has fueled me through the pandemic. Last spring I looked at photos of tulips and daffodils, then bought boxes of bulbs to plant in the garden here so I could make those images of spring online come alive in my own home. I’ve read about the dangers of the virtual world, and of our shortened attention span, but I know what is real and what is not. I know how to live with a part of myself outside of myself.

January 5 at 11 p.m. I am on my way to bed when the phone rings and I know immediately why they are calling. I don’t bother to change out of my pajamas; I just throw on my UGG boots and make a thermos of coffee. On the drive to the hospital, it feels as though my environment has abruptly taken on three dimensions. I am ecstatic to be moving at 70 mph with the landscape streaming past after so many days plodding along in the same location. The world is still out there! At the hospital, I feel like I’m giving a password to a bouncer at a club when I tell the security guard behind a plexiglass barrier that I am on the guest list. He checks my name off a handwritten memo, then guides me through the empty halls to the elevator. The hospital is newly constructed and vibrates with intelligence and a faith in technology and design. The walls are healthy shades of sherbet orange and green the color of newly sprouted leaves. The upbeat elevator is accustomed to communicating with humans. “Ninth floor,” it chirps confidently. But there is no one around but me.

Eventually, I find a lone nurse, who is alarmed to see me, a complete stranger, until I give her my name. Her alert posture softens. The nurse helps me wade into an oversized pale-blue gown. She gives me a shield and an actual N95 mask, the first I have held in my hands since the pandemic began. The elastic strips of the N95 don’t hook over my ears but over the back of my head, like an airplane oxygen mask. She tells me to test my mask. I breathe hard to see if my breath can escape out of the mask and fog up the shield. It doesn’t. That is the magic of the N95; your breath stays in the mask and the air outside can’t get in.

My mother is behind a solid sliding-wood door and the CDC advises a maximum of 15 minutes for me to see her. There is no window and I cannot catch a glimpse before I go inside. We walk through the procedure for entering and exiting my mother’s room a few times because I can’t follow the directions or grasp the order in which I remove and disinfect things when I leave. It is so much to process. When she was on the iPad, I didn’t have to think about time or sharing her air. I just tried to intuit her energy and mood.

We go through the list again, but I still don’t have the instructions internalized. It’s as though I’m on the ski lift to a high mountain and I haven’t mastered the basics of even getting out of the chair, and I want to go over the directions again and again until I can visualize everything perfectly. I have forgotten how to coordinate myself. “You’ll get it,” the nurse says, and slides open the door.

There is no choice but to enter. “Hello, Mommy. It’s me,” I say in Japanese. It is 2 a.m. and she is awake and sitting in a pool of cool blue light. She is panting hard, but they have assured me the morphine will remove any panic she might feel at how out of control her breathing has become.

“It’s Mari-chan.” That’s my name in Japanese. She doesn’t seem to know me. It might be because I am in a face shield and mask and gown and I resemble any one of the nurses or doctors who enters her sealed room. “Are you in pain?” Her eyes are glassy and curious like a child’s, as though on top of everything else she wonders why she has to process what is happening to her and to her body and who this new person is in her room now. Her tiny body is perfect, sylphlike, and proportional. Here I am, going to the hospital in my pajamas and a mismatched sweatshirt. I’ve forgotten how to take care of myself. She is dying and, as ever, looks elegant.

I start to run through the list of things I have to say. I tell her that I am okay and that I will be okay. This is the No. 1 thing. She cannot, as she is dying, worry about me. Then I tell her that I love her. Before I can move on to the other things I have prepared, she does something strange. She turns her head to look at her left hand holding the remote control for the TV, then turns back to the TV, which is covering the assault on the Capitol. She is dying and is watching the news and I think: This world hasn’t gotten any better during her time on the planet.

Tomorrow, January 7, is my birthday, I tell her. I will be 50 tomorrow. Can you believe it? She makes no sign she understands me. Has she shut me out? I am crying and snot is pooling in the N95. I can’t wipe it because my hand is in a glove and anyway I can’t get to my nose behind the mask and the shield. I’m very hot because I’m crying, but there is no steam on the shield and I can see her and she could see me if she turned her head to look. The N95 is doing its job. My fluids are contained.

It is all so confusing. How much time has elapsed? Five minutes? Have I exceeded 15? Would she have acknowledged me on the iPad? I move through the departure steps as instructed, leaving the room without gloves. I think this is what I am supposed to do.

“She looks a little better than when we called you,” the nurse says.

“She does that,” I say.

I’m ashamed I say this, but it is true. She has been in and out of the hospital and on the brink of dying so many times, and I have been there each time. I think to myself that she’s not actually dying and they don’t know because they don’t know her body and I do. The nurse tells me that I can call anytime. But I tell her I won’t be calling. I cannot imagine going back into the iPad now that I have seen her.

I leave the hospital with my N95 mask. That was my mother in there.

The night after I see my mother in the hospital, my body does not feel safe to me. This has happened before, though never so intensely. Imagining myself in her body and feeling what she is feeling so I can diagnose her symptoms has increasingly landed me in bed with migraines and heart palpitations. I have become acutely aware of aching tendons and weakened eyesight. I have told myself that the pains are not real and that nothing is wrong with me. But my body revolts. It knows, even if I don’t, that I am relying on an automated system that does not think.

When you walk or eat or have sex, you are, whether you know it or not, moment by moment taking a leap of faith that your desires will transmit to your body and your body will respond and the world will be there for you under your fingers. The world will meet your touch. When you are afraid of your body, when you are so scared, when you know that so much depends on ignoring the fusing of tissue to nerve and muscle, and when you know that joy depends on an absence of pain and on so much in your body working correctly, when so much can work wrong, you cannot — I cannot — move.

Or maybe I have just become lazy. Maybe in pacing myself through the pandemic and in trying, like a good sport, to adjust to life on a screen I have decided to ignore the physical world because that’s the only way I can cope. I should have tried harder back there to get through to her.

When she did not seem to see me in the hospital, was that a ruse? Did she know it was me and did she pretend not to know me so as to spare me the pain of a horrible, timed final visit? She would have been irritated at my nervousness over the virus and that I would need to leave when 15 minutes had expired. Or did the morphine obscure her perception? I was the only person in her world, in these last weeks, to speak to her in Japanese. She had to know it was me.

I decide I will not go back to see her in the hospital again.

But she’s my mother. When the doctor on duty calls me the following morning to tell me that my mother’s blood pressure has fallen, I realize I can get my body to cooperate. I can go to the hospital one more time.

This time the directions are easier to follow. It makes sense why there is a station outside her door with wipes: That’s so I can clean the mask and reuse it if I go back in again. This is also why there are gloves by the door; I dump the gloves in her room, I come out, and then I can go back in again with new gloves and the same face shield. But I know I’m going in only once more.

It’s still her. She’s breathing more easily now that she is unconscious. The news is off and someone has selected a channel with fish on the TV screen. I wonder if this is the designated dying channel and every TV in the hospital is preprogrammed with the fish video. I have to touch her. She can feel it, they told me. So I touch her. And this time the list I have prepared in my mind comes out of my mouth easily. She is going to miss the hundreds of bulbs I planted. I planned to pick the tulips and daffodils in February, after the vaccine, and bring them to her. I am sorry she just missed the vaccine. I ask her to remember the time we went to Japan in May and saw the first geisha dances of the season. I ask her to remember the hot springs in Lake Towada and the time we stayed in the inn with the rocking chair and the staff made my son, Ewan, then a baby, a little bed out of towels so he could lie next to us while we ate in our room. The best food we have ever eaten in Japan. I run through all the things she loves. The opera. The times we hand-rolled sushi. See these things in your mind. I know that you can see them.

Thank you for being here on my birthday with me one more time. I will miss you, I say. I will miss you forever. Then I leave the gloves in the trash and again the nurses tell me I can call anytime and be connected by the iPad. But I don’t want to see her on a screen again. I want to remember this image in my mind: She is asleep, and the fish on her screen and I are breathing water. I depart with tears and snot again collected inside the N95 mask on my face.

The doctor calls me again, perhaps an hour later. A procession of strangers will now help me. I can arrange for cremation, the shipment of her bones, and the ordering of the death certificate online. Someone else will convert her body to ash and prepare the paperwork and deliver it all to me. It is so efficient and considerate of my feelings — the very best of what technology can do.

In the Japanese calendar, there are days of good luck and days of bad luck. The bad luck days are “friend-pulling days.” You must consider where your friends are on friend-pulling days or they may take you there with them. My 50th birthday was on a friend-pulling day.

Because I was exposed to my mother and she had COVID, I have to isolate alone for two weeks in my home while my husband and child are elsewhere. In the days that follow, I feel the friend-pulling days tugging me to her. I wonder if the neighbors hear me howling at night.

My mother told me often that she was not afraid to die. She told me she would die in the fall because when she flatlined when I was ten, this was what she saw before she came back: huge, orange European maple trees. We never went to Europe in the fall out of the fear that she would meet her trees.

I have studied not only my mother’s descriptions of what awaited her on the other side, but what other people have seen. I have tried to touch the edge of the place where she went, the way you might tempt yourself to touch a frozen signpost with your bare hand or your tongue. There is no technology to visit the land of the dead and which would allow you to come back with a sample of the earth there, the way a NASA rover could bring us a piece of Mars. You have only your imagination. Even so, this kind of trespassing leaves its mark. Every myth tells you not to do this. But in a pandemic, everyone is trespassing death, and whether it is real or not in a way that we can prove, I am here to tell you that your body doesn’t know the difference. Your body knows when you spend too much time trying to see into a space where you physically cannot go.

A few weeks after my isolation ends and I test negative for COVID, a strange thing starts to happen, and maybe it is another gift of the iPad. I am forgetting that my mother was sick. Her essence has clarified. The sickness that was in her body has gone and my mind is furiously picking through memories, panning for gold, holding on to the nuggets that were her. I do not have to imagine her sick anymore to try to determine what I need to do for her. My imagination is free of this task for the first time since I was ten.

When I can move again, when I can inhabit a body and not feel as though the world will take it away from me, I begin to walk to the beach and back. I still cannot believe she is gone. I am also relieved. There is a warning in this. When the pandemic ends and most of us are free from monitoring of the barrier between the sick and the well, we, too, will forget the pandemic. We will go back to moving our bodies freely. There will be relief in letting go of the moments we sat beside the sick. It will become harder and harder to remember.

My Mother in There