by Mira Bartók
Norma—“Mom.”
She asked me to come to her art show. What should I do? How long will she stay in that place? If I lose her again to the streets, what then? The day the monks tossed Kalachakra into the river, I watched colored sand that had once been palace rooms of red, yellow, blue, and green sink below, forming a final mandala on the surface of the water. A few rippling circles spread outward, and then, in an instant, they were gone. “May I be a protector for those without one,” said the Buddha of Compassion. “May I be a bridge, a boat, a ship for all who wish to cross the water. May I be a shelter for those without a home.” I finally have an address for my mother. Can I find her safe and permanent refuge? I don’t know if I can see her again, for in my dreams she still holds a broken bottle to my neck. But can I find her a place where she has enough to eat and a quiet room, and people to watch over her every day? The Buddha of Compassion said, “How is life precious? O ignorant one, do not fall asleep now.”
Could I be a bridge, a boat, a ship?
Five months later, at the end of September, a truck driver falls asleep and goes hurtling down the New York Thruway right into my car. When the doctor at the hospital in Schenectady discovers that I had only been unconscious for a few moments, he briefly checks my neck, asks me a couple curt questions, and sends me home. The man I had been dating at the time, who had been driving my car and who had sustained mild whiplash, finds a rental car and drives me back to Massachusetts. I call my sister to tell her I had an accident but am fine.
The next day, I wake up in a fog. I wander from room to room, not sure what I’m looking for. I call a friend, then put the phone in the freezer. I boil water for tea and leave the burner on for most of the morning. I try to read the paper but the words blur together and nothing makes sense. When I talk, some words get stuck and can’t come out. All I want to do is sleep. I can’t remember what happened the day before, or the day before that. Or what I did ten minutes ago. When I go see my primary care doctor the following week, he says I look and sound fine. “Nothing to worry about,” he says, patting me on the back. “It’s just a little concussion. You were only out a few moments,” he says, “so it can’t be that bad. You’ll be back on your feet in a few weeks, tops.”
How we measure the severity of head trauma has a lot to do with a rather flawed system called the Glasgow Coma Scale. Doctors look at how long a person has been unconscious, how well he or she responds to stimuli such as voice commands and touch. If a person is only unconscious momentarily or not at all, he or she is often given cursory neurological examination and sent home, which was what happened to me. But even though my doctor says I’ll be fine, something isn’t right in my head. I can’t seem to focus and can barely read. Going to the grocery store is now a harrowing experience. I can’t bear the music they play and all those bright lights. I can no longer find my way out of the store without help. I find myself standing in an aisle, crying and confused. Then I get lost walking the two blocks home. And those sounds on the street—so many people talking, dogs barking, and people honking horns, children shouting—the world around me is unbearable. All those voices coming at me wherever I go. This must be what my mother feels, this relentless assault to her brain.
In an accident like mine, a coup-contrecoup, your brain rings back and forth like a bell inside your skull. As a result, the back and front of the brain can get serious contusions, causing a cascade of problems. The prefrontal cortex is the seat of executive functioning, problem-solving, emotions, and concentration. This is one part among many that isn’t working but I am so out of it that I don’t really notice or understand what is going on. Even though I look and seem fine. On the day I move into my new apartment a couple weeks after my accident, I have no idea how to put things away. Two friends come over to help. “Here is where the cups go,” they say. “Here is a good place for your books.” One friend sees the confused look on my face. She puts her arms around me and says, “Do you want me to post little signs so you know where things are?”
Not long after I move in, I break up with the guy who had been driving my car and try to simplify my life. Over the next few months, I cover all my bookshelves in white sheets; I can’t read right now anyway, so why bother having books? All those colorful spines and titles are distracting and make my head throb. I take down the art my friends had helped hang and stick my CDs in a box. The slightest sound can give me a migraine even if the sound is a favorite piece by Bach. If this is supposed to be a “mild” brain injury, then why do I get lost on familiar streets?
My sister sends me money to buy a secondhand car. That way, I widen my chances of finding a job and can also drive to my medical appointments. But I quickly find that I can’t drive farther than fifteen or twenty miles without getting lost. I try returning to my freelance work writing educational copy for magazines, and to my other job, teaching art to adults. I find that writing only one page can take several days and then afterward I have no recall of what I wrote. When I try to teach, just one short class makes me a zombie for days. All I want to do is sleep. One by one I lose my jobs. And my creative projects—my children’s books, my short stories and essays, and a memoir I started about the Sámi—I stick inside a box. I don’t even remember writing them. After I use up all my savings, I live on credit cards and start applying for grants. My new boyfriend, Doug, a musician, helps me out a little with bills, but he can only do so much, what with having to support his two teenage girls. But having him around makes life much easier. He drives me to doctor appointments, reminds me where I put things, walks me to places so I don’t get lost.
You’ll be better soon, my doctor assures me. I write my mother and tell her the same. It’s been months since I’ve written her or even checked my post office box. “I had an accident,” I say in my letter. “But the doctor says I’ll be fine.” My letter comes back “Addressee Unknown,” just like ten years ago in 1990 when my mother first disappeared. A fuzzy memory rises to the surface—didn’t she say she was living in a place with a phone? I search for her letter and find it. I think about the monks for the first time in ages. I wonder what Tenzin Y. would say. Maybe he’d say that this is the moment for me to be brave, to walk across the mountains. I call the number. “She left months ago,” says the woman on the other end. “She didn’t leave a forwarding address. Left her room in a hell of a state, though. Set two chairs on fire. We had to kick her out.”
One day, while hiking on a trail with Doug, my legs suddenly give out. I feel jolts of electrical pain everywhere—in my legs, my arms, behind my eyes, my tongue, my feet and hands. The pain is excruciating and escalates over the next few weeks. I don’t know if it’s my spine, since I had injured my back in the accident, or if it’s my brain. Along with the pain and the feeling of hot lava that’s been there from the start, I feel other odd sensations now, like ants crawling up my arms and raindrops falling all over my body. When I sit down in a restaurant, I tell the server that there is a leak in the ceiling and that water is dripping on my head. I tell her she better get a bucket; she looks at me as if I’m nuts. At night, I can’t control my legs and I wake up in pain. Doug is beside himself and doesn’t know what to do. He comforts me and rubs my legs. Massage is the only thing that seems to help but I can’t afford the treatments. The neurologist puts me on antiseizure medication that makes me groggy all the time. My world becomes flat and gray. Was this what my mother felt when she took her meds? I get scanned and probed and X-rayed but all my tests come back borderline normal. Finally, the neurologist announces that he can’t find a single thing wrong with me. He tells me that it must be all in my head. I turn to him and say, “Well, Doctor, where else would it be?” and walk out.
The new doctor I find believes me. He explains that, with the kind of TBI, traumatic brain injury, that I have—a diffuse axonal injury—there can be widespread damage that is undetectable in fMRIs and other tests. In an accident like mine, the rapid acceleration and deceleration of the brain within the skull causes the axo
ns, the parts of nerve cells that allow neurons to send messages, to become disrupted. Tissue slides over tissue, and shearing, swelling, and microscopic bleeding can occur. Cells can also die, which causes swelling, decreasing blood flow to the brain. The shearing can release chemicals, contributing to further damage. “You need to see a neuropsychologist and get in rehab,” he says. “You should have gone right after the accident. Have you ever tried meditating? Some people swear it helps.”
After months of silence, I finally get a letter from my mother, with her new post office box number. She is back to sleeping in motels and shelters, airports and bus stations, and park benches when it isn’t too cold. The letter is more disturbing than usual to read because the way she writes reminds me of my own damaged brain:
Dear Daughter,
Painted my Reebok shoes today with yellow and black, thinking of a pirate flag. Of study, I am reviewing tree identification. One looks not just at leaves but general shape of tree. Deciduous trees, as opposed to Evergreens, shed leaves annually. Not to be confused with deciduas, lining of the uterus, cast off by pregnant females in childbirth. I feel great unfamiliarity with the Midwest where I have lived most of my years. Strange feeling I was born in New York, or was there in my infancy. My memory is impaired due to chemicals and gas. Thinking I am on edge today because I have “so they, so he” thought interference. My Post Office box is always empty. I eat lunch at a shelter on the east side. What I am wondering now is: In England, if a Queen dies, is there royal ascent or is the throne left vacant? When are you coming home?
Love, Mom.
When I write her back, I am so out of it that I make a grave mistake. I write Mira Bartók and my real street as my return address. She writes immediately. Is that your real address? Did you change your name? I shoot another letter off to her. “No, it’s just an old friend from school,” I write. “I have a new post office box. Don’t write there anymore. She’s not such a reliable friend.” Fortunately, she believes my lie.
By 2001, I can’t keep up with health insurance or daily bills anymore. The first lawyer I hire tells me that my lawsuit against the trucking company won’t be settled for years, so I best find some way to survive. Finally, after maxing out my credit cards I end up, like my mother, on disability and welfare. I receive $850 a month from the government to live on. I wonder who gets more, my mother or me.
My new neurologist tells me that even so-called “mild” traumatic brain injuries, MBTIs, can cause lasting damage. But he’s optimistic. Cells can regenerate; new pathways can be formed, detouring around damaged spots. He insists I go to a rehab center. “You need to start monitoring your progress,” he says. “And exercise your brain.”
At a brain trauma center in Springfield the doctor asks me, “What’s a proverb?” I stutter out an answer: “A word that means something b-b-but I can’t explain what it means.” What is the speed of light, she asks, what direction does the sun set, what was Mahatma Gandhi known for? Pretty damn fast, I say, the light I mean, making light of my damaged brain, my loss of multiplication tables, my memory of what I ate for lunch that day. I am taking a cognitive test to see what my deficits are and am stuck on two words—peace and light. For the first time in ages I think of the Palace of Kalachakra, the monks making all those rooms of color from tiny grains of sand, only to sweep them away after three short weeks.
“Let’s move on,” says the doctor.
But move on to where? When all is said and done and the cards and blocks and lists of related fruits and vegetables, and animals beginning with the letter B, and all the sequences of numbers, going backward and forward, are put away and the test is completed, the score tabulated, filed, and assessed, my thoughts will still be a gaggle of noisy geese. I’ll still be unable to work and my mother, who will soon turn seventy-five, will still be homeless and begging me to take her in. I have yet to answer the question I wanted to ask Tenzin Y. the day the monks dismantled their palace: should I find my mother and see her again?
While struggling to read a short story one afternoon, I get fixated on the word birdsong. It looks like bridge-song to me, and I can’t get the image of birds on a bridge out of my mind. I can’t follow words and sentences in a straight row anymore, even when I try what my new doctor suggests: place a piece of paper below each line so my eyes don’t skip too far ahead. I am frustrated and feel like crying. But even though the emotion is there, nothing comes out of my eyes. B-b-b-birdsong, I stutter to the empty room. I am tired and want to give up. Who am I now, if I can’t be the person I was before? My brain is just a field of scattering deer, a birdsong is a bridge of wings, there are ants crawling in and out of my ears. Why can’t I just accept it and move on? What about the monks—did I learn nothing at all? Tenzin Y. said to me once that the only thing we know for certain is that things will change, sometimes in an instant. Their palace was like my brain is now, a palimpsest—an illuminated manuscript that has been scraped away, over and over again, so something can be created anew. When buildings are rebuilt, wherever spaces are shuffled or destroyed, ghost shadows still remain. These too are palimpsests. What’s important is the impulse to go on, to create, even if tomorrow you can’t remember what it was you made the day before.
I finally begin to write again, a little each day. My neuropsychologist suggests that I start drawing too. I hang a card above my desk that says, “Remember what you love.” Then, in September, two airplanes hit the World Trade Center. The personal consequence is that my mother loses her home, where she has been sleeping in baggage claim at Cleveland Hopkins International Airport off and on for weeks. Everyone is kicked out—of airports, bus stations, train depots, the Rapid Transit that my mother rides long into the night. Where will she go now?
Months later, my mother sends me copies of some of her medical reports. I had asked her to send them because she had complained of so many ailments—blindness, vascular disease, heart problems, stroke, rectal bleeding—and I wanted to know if any were true. Enclosed, along with the files, is a police report and part of a long document from a mental institution where apparently she had been kept for observation a couple weeks after the 9/11 attacks. The hospital document stated that while the owner of my grandparents’ old house on West 148th Street was out of town, my mother somehow convinced a locksmith that her own house had been robbed. She paid him to change all the locks. The owner, who had lived there for the last few years, came home to find a strange woman pacing in his living room, smoking and talking to herself. After she was arrested, they put her in restraints and brought her to the hospital for observation. When they asked her if she had any children, she told them, “I don’t have any kids. I had an adopted daughter once but she lives in another
state.”
Some of her other medical files validate how ill she really is. She definitely has something wrong with her gastrointestinal system—all the alarming signs are there—but she refuses to be X-rayed or examined without her clothes. Her heart shows signs of irregularity and she does indeed suffer from vascular disease, which is why it’s so hard for her to walk. Her partial blindness is due to cataracts, though, and can be repaired if she agrees to have the operation. But try telling that to a woman who thinks the Nazis had removed her womb. There must be something I can do but I can’t figure out what it is.
I live in a cramped duplex with Doug out in the country and although my condition has improved it’s clear that there are many problems that will never go away. Weeks blur into months and years. I’ve lost the order of things. To the outside world, however, I show a different face than the one I show with Doug at home. Children of the mentally ill learn early on how not to be a bother, especially if they grew up with neglect. As my sister insisted once, when she was in severe pain after injuring her ankle, “This isn’t me! This is not who I am!”
Then one day, a gift from my mother arrives in the mail. It’s Chanukah 2004. In the box is a pair of a small child’s blue slippers, decorated with gold stars and moons, and a plush
toy owl with a little cap. For my mother’s return address, there is a real one on a real street—the shelter on Payne Avenue. I live in pain on Payne, she says on the enclosed card. It’s the first thing she sends me with the Community Women’s Shelter’s address. Very good holiday recognition at Shelter, she writes. We were given each two boxes, presents, and an envelope with five dollars. But I am feeling very bombarded by events, insights of past months and days. I feel very much hated by unknown parties. When will you come see your old lady again? They sometimes have extra cots in the large room downstairs. Or you can take my bed and I can sleep on a mat on the floor. Love, Mom.
She mentions a social worker named Melissa who helps her out. She’s from an organization called MHS, Mental Health Services for Homeless Persons, Inc. I write back and ask if I have permission to contact her social worker. She writes to say of course, but can I please come to Cleveland to help her find her keys? My mother says, I’m seventy-eight years old and I want to go home. I want to see her again too. I’ve already lost her once, and have, at least for a time, lost myself. I don’t want to lose her again. But I decide I can only see her if she is in some kind of supervised setting. Otherwise, she’ll try to come home with me. I contact the social worker and we begin the long process of finding my mother a permanent home. Which, in the end, turns out to be a quiet dark room in a hospice ward.
Finally, I have built a palace within my palace, made from bits of colored sand. One breath could sweep it all away. It is protected by blue waves and fire, by elephants and incandescent shells, lotus flowers and horses, cryptic words and prayers. But the palace cannot possibly last; it will, like everything else, eventually disappear. It is the essence of memory, ephemeral as sleep, unsettled as the sea.