i’ve been thinking lately about the importance of ritual- not to be confused with habit. there aren’t many that i have– maybe two. first, running into atlantic ocean in late spring. welcoming summer. the other is lighting a yahrzeit candle on january 17th, the anniversary of my mother’s death. you’re also supposed to fast, as well as say yizkor prayers and kaddish, but that’s not really my thing. usually i just light the candle. maybe once every few years i’ll say the prayers. this year i watched a video of a speech my mother gave in 1988 a couple of years before she died. she was speaking to doctors and social workers, telling them her story from diganosis to treatment. it’s a speech about survival, but in it she’s really explaining how it feels to be treated like a sick person, how dehumanizing the medical industrial complex [my words…not hers] can be, and how doctors and social workers and therapists and nurses, all with the best of intentions, generally don’t understand what it’s like to be a ‘patient’. so, my mother broke down for them, in true, neurotic, jewish form, how so many times she was made to feel invisible or diseased. she also talks about my sister and me, which is nice to watch and listen to. i work with film and video every day and, while i have an intellectual appreciation for the medium, it’s only when i watch this video of my mother, that i am amazed by its power to bring back to life someone so dear to me, who has been gone for 17 years.
i don’t think about my mom all the time. not daily, sometimes not even weekly. a couple of years ago, as january 17th came and went, i observed that i’d spent more years without my mother around than with her. that was striking to me and i sat for an hour and wrote down some of my memories:
Boston 1986-87
I was 12 and on vacaction in Florida when it happened, with my friend Justin’s grandparents. We were playing with walkie talkies. I have a picture of it. We snuck off to a golf course. We climbed the fence to the pool at night and went skinny dipping. I got a phone call from my parents explaining that my mom was going to the hospital for some tests. They thought it might be something called mononucleosis. I knew what that was from a Judy Blume book. I knew it was sometimes called the kissing disease and that it made you really tired.
Funny thing is, that I actually got mono some 4 years later from making out with this girl during the last week of summer camp. It was lucky. I missed the first six weeks of school and stayed home every day with my mom, who, at that point, had been in remission for two years. A month after my recovery from mono she relapsed. We all went out West for her treatment. But when I was 12 in florida I didn’t really know what to think.
In the videotape that I have, my mother recounts how the doctor came in and with a grave countenance explained that she had leukemia, that chances did not look good. At the time, she was alone in a room. My father and grandmother were in a waiting are. When my father received the news he started to pass out. The doctors and nurses were so busy reviving him that my mother was left alone in a room to ponder her newly diagnosed terminal illness.
When I returned from Florida, they explained leukemia to me. I had read about it somewhere and already knew what it was: a blood disease where your white blood cells multiply and cannibalize all of the other cells in your body. They said that she wasn’t going to die, at least not for sure, but that it was possible.
My mother had to live in a hospital room for weeks. I remember her throwing up a lot. I remember everyone being silent and numb. I was angry, a wise ass, trying, like my mother, to keep things light. As the chemo began taking effect, I played along with a shaky smile when she asked me to pull her hair out in clumps. We celebrated my sister’s birthday in the hospital. My father bought her a red ten speed and hid it behind the hospital room door as a surprise. I don’t think that she ever rode that bike. It sat in our garage and was consumed slowly by rust, a reminder of a time that none of us wanted to remember.
I remember schmuties, our mispronounced Yiddish for the bandannas that she wore when she had no hair. After a year of off and on hospitalization she finally felt strong enough to go outside and take a walk. She and my father came down to the school fields to watch my baseball game. I hissed at them to leave and then avoided them when they chose to stay. I was embarrassed because my mother’s bald head was showing through the bandanna. I didn’t want anyone to know that she was sick.
I vaguely remember nice nurses and the smell of that hospital. Hospital cafeteria food. I remember nosebleeds and having to rush to the hospital to get them cauterized. I remember midnight fevers and possible infections and more mad rushes to the hospital.
I remember the hat that I brought my mother from Florida, before I knew that she was sick. It was a white baseball hat with a little pom pom on top. On the front in raised pink cursive lettering: “Beach Bunny”. It was just about the saddest thing I had ever seen: her in the hospital, propped up in bed with no hair, grinning her toothy grin with that hat resting on top of her head, the bill creased sharply down the middle. It nearly killed me. But she thought it was hilarious. It was through her humor and charisma that she maintained a sense of control, of being able to take care of herself, and by extension, all of us. Maybe it was what she needed to do in order to survive: to do her nails, to gossip on the phone, to keep up with soap operas. If she could keep being our laughing, smiling, potty-mouthed mother everything would just have to be fine because how the fuck could this be happening? Even while retching into a hospital toilet, she’d come up for air, turn to us, crack a joke and roll her eyes to remind us that she wasn’t some diseased monster. She was our mother.
Boston 1987-88 (remission)
These are the years that I remember the least. Possibly because they were somewhat normal. My mother’s hair grew back and she resumed carpooling and socializing. I started messing around with girls in our basement, skateboarding, and listening to punk rock. I was also awkward and painfully self-conscious. I was bar-mitzvah’d and while almost my entire 7th grade class was invited, I felt pretty alone. I was pissed off at the world, including my mom. It was strange to fight with my mother after spending two years tiptoeing around her. But eventually I got used to having her around and we’d scream at each other, and my room was a mess, and every few months or so she’d go to the hospital to get a bone marrow test– just in case. She’d always let me know when she was going. And I’d always shrug, look sideways at her and say “I don’t care.”
We went on vacations. Drove up and down the West coast in a rented Lincoln Town Car. Flew in a helicopter over Bryce Canyon. Borrowed some couple’s jetskiis in Lake Powell. Laughed and joked and made fun of each other. My dad drove the whole 3 weeks. My mother was afraid that he was going to fall asleep at the wheel, so they bought him a machine that they wired to his head. There was a sensor, and if his head began to tilt, a loud buzzer would go off and wake him up.
We went to Jamaica and rented a villa (complete with staff) on the side of a mountain in Montego Bay. Of course I cringe at this now but at the time, I was 13 and just happy to be somewhere with my family that wasn’t a hospital. We were doing ‘normal’ family things, like going on vacation.
On Halloween in 1988, I was upstairs smearing green facepaint across my forehead. My mother, father, and my sister (who was 11 at the time) were downstairs in the den watching TV. My mom had gone to have a bone marrow test earlier in the week and the results had seemed a little off. They brought her in for more tests, the results of which she was awaiting. I heard the phone ring as I rubbed the green makeup into my nose. Three minutes later, my sister appeared at the bottom of the stairs with tears in her eyes and cried, “She’s got it!” I smashed the heel of my palm against the wall leaving a green dent. I stood silently for a minute and let it sink in, before dragging myself downstairs to sit with the rest of my family. After sitting together, holding each other for an hour, I went trick or treating with my best friend Justin, who was almost as shocked and upset as I was. A week later I was on a plane to the West coast with my whole family.
Seattle 1988-89
We moved into a two bedroom apartment and went out to Sizzler for a final celebratory meal together the night before she was admitted. She was going to have a bone marrow transplant at the most advanced facility in the country. They had a whole floor reserved for transplants. We sat at the brightly lit table smiling and joking awkwardly with each other. The next day we went to the hospital, where she settled in to her side of the room, and we settled into ours.
Her room was divided in half by a plastic curtain and a waist-high partition: a sterile side, for the patient, and an unsterile side for visiting family and doctors. The curtain had rubber gloves bolted into it so we could reach through, hold her hand, play games: two lips together bind them together bring back my love to me. There was a constant hum of air, a current that flowed from her sterile side of the room to our unsterile side.
Each day, while she was in between sessions of radiation one of us would stand in the doorway-sized opening between the septic and antiseptic, and, in the fluorescent light and artificial breeze, would pull on sterilized pants, gowns, gloves, masks, hats, and booties and walk in to see her. It reminded me of ET when ET is quarantined in the house and everyone has to wear those white crinkly outfits and yellow masks. Anything that went into my mother’s room had to go through the autoclave. She brought things that we made for her.
A month later I wrote her a goodbye note that I still have. Not goodbye you’re dying, but goodbye my sister and I are going back to Massachusetts to have a few weeks of normal schooling and I WILL see you again. Back to school…not like the hospital school, which was a sad little clubhouse five minutes’ walk from the cluster of hospital buildings where we spent most of our time. There was dim track lighting, brown rugs, books and toys. The place was staffed by young tutors, maybe college students, who seemed to know less algebra than I did. We gave up on them pretty quickly and did our assignments on our own. This was probably why our parents sent us back East in early December: to take final exams. Or maybe they wanted to get us out of there during the time of the bone marrow transplant.
We returned home to our empty house and tried to forget and remember at the same time. My mother talked to us over the phone, sounding cheerful even through the chemical haze. It reminded me of when we were younger, when she was in the hospital for the first stretch of time. We would call before school and no matter how drugged or sick she was she would always get on the phone and talk to us. Always. Even back then, when death wasn’t so imminent, we needed her to keep being our mom. And, perhaps, more than that, she needed to keep being a mother to us. This time, the second time around, because of the time difference, we must have called her at night. We would hang up the phone, do homework, and watch television. Normal stuff. Anything routine was welcomed. The next morning we would wake up and go through the surreal and empty motions of school, where exams and crushes and detention felt like a game we had long outgrown.
A few weeks later we returned to Seattle. I remember getting off the plane and my dad telling us that the shit had hit the fan. I didn’t really know what that meant, but he told us that our mother was on oxygen. That the marrow seemed to have taken, but this was a hard time and it was difficult to say what would happen. He told us that Honey, my mom’s mother, had taken down the plastic partition in the middle of the night, when my mother, crying in pain, began calling for her. Honey, who had been living in an orthopedic chair on the other side of the room from day-one, tore down the curtain and climbed into bed with my mother, holding her, whispering in her ear. The doctors must have been horrified to see my Grandmother breathing all over their patient. But my grandmother understood that the cruel, sterile isolation was killing her daughter more than any fluid in her lungs, any virus, or bacteria.
I came into the room, fresh off of the plane, and she sat up in bed. She had tubes in her nose and was sitting cross-legged. She patted the blankets in front of her and motioned for me to come sit with her. I did. I held her hand and we talked, looking at each other, smiling. An alarm went off. Something about her breathing triggered it. Doctors rushed through the door and I was ushered out while trying to ask someone what was going on. My mom looked over at me from the bed as I was backed out of the room. There was terror in her eyes as the doctors and nurses closed in on her.
Later that day we were told was that she was on a respirator. They fed her sedatives and muscle relaxants so she wouldn’t panic or choke if she became conscious. We were gently told the statistics: within the first 24 hours on a respirator, a person has an eighty-plus percent chance of getting off and surviving. But, after being intubated for more than 24 hours, the chances of survival drop to below ten percent. At one point during that first day, they took her off the machine and tried to let her breathe on her own. But within an hour it was clear that she wasn’t getting enough oxygen. The respirator was wheeled back in.
I don’t remember her ever letting us see her truly, frighteningly sick until she was on the respirator and had no say in the matter. And from that point on it was all machines- dialysis, heart monitors, catheters, machines that became permanent fixtures inside her body and in her room. We spent our days talking to doctors about her blood counts. They came bearing printouts full of exciting news: the bone marrow seemed to be taking and she was producing her own white cells! But then they walked us over to the lightbox to inspect x-rays of her infected lungs which, as days passed, were filling up with more and more junk.
For two weeks I slept in the 4th floor lounge on an egg-crate mattress and would walk down to her room to watch her lying there. At first she was on the transplant-side of the floor. Then they moved her over to the dying-people’s-side. I guess they segregated it that way so incoming patients weren’t horrified by the large percentage of people just not making it. I sat in her room alone and with the rest of my family. We would talk to her, hold her hand. I watched her get thinner and thinner. Her muscles seemed to dissolve into the mattress of that hospital bed, leaving only bones and loose skin. She became jaundiced and leathery. Dehydrated. Cold. Her heart was strong and the doctors couldn’t believe that she was still alive.
The nurses told us to keep talking to her because the hearing is the last thing to go. I held her hand and said, “If you can hear me and you’ll keep fighting for us, squeeze my hand.” Her hand squeezed gently around mine. Her heavy eyelids creaked open and she looked at me with yellowed, bloodshot eyes. For a few seconds we stared at each other, full of love and fear. In that look she told me she was doing all that she could do to fight to stay alive. And in that look, we both knew that these were our last moments together.
The nurse [or was it my grandmother?] came to the door of the lounge in the dark early morning. “It’s time,” she said. We all gathered in the room and held my mother. The machines stopped, the bed deflated. We hugged silently. They pulled the tubes out of her. She looked like a bird, lying on her back, her neck permanently arched from the breathing machine. Mouth frozen open in the shape of the tube, strands of thick saliva stretching from her lips. She was yellow. No hair. I didn’t recognize her at all.
The room breathed a deep sighing breath and a wave of relief swept over me.
