“She doesn’t anymore,” my doctor said. “I think you should get her some counseling.”
But no, you would have none of that. You were offended he would even suggest such a thing. Instead, you started to look into alternative therapies.
We tried dry brushing and juice fasts, aloe vera juice and acupuncture. You took me to the Homeopathic Institute, where we ate basmati rice and yellow lentils, and a bearded homeopathic practitioner interviewed me so he could know me as a “whole person.” This creeped me out. I only wanted him to know my symptoms.
“How is your relationship with your mother?” he asked, as you sat in the chair across from the exam table.
“It’s great!” I said brightly, then burst into tears.
“Can you tell me what that’s all about?” he asked, visibly amused, but I couldn’t.
Not with you right there in the room. Even if you weren’t in the room, I wouldn’t have known what to say.
You were sure a television movie would be made of our life. Of course you would be the heroic crusader, stopping the evil doctors in their tracks. You would be played by Shirley Jones; people often told you that you looked like a brunette Shirley Jones.
I would be the heroic sick girl, played by Ally Sheedy or Kristy McNichol. I just hoped the camera wouldn’t be able to see inside the girl, the careful machinations behind her brave smile.
I wasn’t sure how to keep up my Sick Girl charade, but I wasn’t ready to let it go, either. Then one day, you asked if I was limping, and I realized I had a new avenue to explore and exploit. I acted as if my leg had turned in at the hip, as if walking was becoming more and more difficult. My doctor thought it could be bone damage from my long-term steroid use, and suggested I use a wheelchair to keep my weight off my hip joint until we figured out what was going on. A wheelchair! Now there was a solid Sick Girl accessory! No need to worry about toilet bowl contents when you have to use a wheelchair! You rented a bright-yellow Amigo mobility scooter for me, and I was able to use the elevator at school, off-limits to students without special permission; I found myself hit with a new wave of attention from kids who had grown immune to my Sick Girl mystique. The Amigo was truly my friend. And it gave me a means of escape. Before the scooter, I didn’t really have the energy to go off anywhere by myself, but now I often took the scooter, little engine grinding, into the forest preserve near our house. I would park it by the lagoon, get out and walk amongst the groves of oak trees, leaves sticking to my shoes, their scent sweet against the damp earth. Sometimes a deer would appear on the other side of the water, and I’d stay as still as possible in the dappled light that came through the branches, hoping it would look right into my eyes, that it would bless me, somehow, forgive me. As soon as it noticed me, though, it would run away, and I was sure it could see down to my most rotten core.
You learned of a craniosacral therapist in Milwaukee, and we crossed the state line to visit his office. I didn’t have any expectations for this appointment—none of the other alternative therapies had touched me in any real way. This time, though, was different. The office was homey, full of beautiful, inspiring art. It smelled like herbal tea. The young bearded doctor had me lie on my stomach on a massage table, and when he touched a certain part of my back, I started to cry.
“I’m sorry,” I said, embarrassed.
“It’s okay,” he said. “Happens all the time. Emotion is locked in the body. I’m just helping to release it.”
That gave me permission to bawl, and it did feel like a release. It felt wonderful. He had me turn over onto my back. He reached behind my neck and started to press into the base of my skull, and my leg, my “funny leg” as we had taken to call it, started to twitch, started to right itself without any conscious effort on my part.
“It’s working,” you said in awe. “It’s a miracle.”
I closed my eyes and let myself feel my body coming back into alignment. What in the world had I been doing to myself? Why had I let it go on so long?
After the session was over, I felt lightheaded. I felt light. You drove us to the Public Natatorium for lunch, an old public swimming building that had been transformed into a restaurant with a dolphin tank at its center. We ate our medium-rare burgers in the narrow dining room dripping with ferns, a parrot in a cage behind us, and watched the dolphins jump through hoops and shimmy upright across the pool on their tails. Water flumed up and crashed against the Plexiglas window next to our table. After the show was over, kids were allowed to come and touch the dolphins. I limped to the pool while you stayed with our food. I ran my palm down the slick back of one of the dolphins; I felt its wholeness, the way it lived so fully and joyfully inside its skin, and my heart ached with longing. I knew I was ready. I was finally ready to be well.
NOVEMBER 27, 2009
We start to wonder, to worry, more about my mom. Whenever we try to call her cell, it goes straight to voice mail. Michael remembers she told him she left her phone at the Best Western in Loma Linda the day before Asher was born. She had thought people in the rooms on either side of her were spying on her, had thought a white van in the parking lot was tracking her movements. She had taken the battery out of her phone, had thrown both pieces into a trash bin in her room.
After Michael retrieves the phone from the hotel, we scroll through my mom’s contacts to find Richard’s number. Michael excuses himself and gives Richard a call in the office while I rest in the bedroom with Asher and Elizabeth. I try to listen to Michael’s end of the conversation, but can only hear murmurs through the door.
Michael comes back into the room about fifteen minutes later, teary.
“What’s wrong?” I ask, heart accelerating. Elizabeth sits on the bed next to me, looking similarly on edge.
“Why did she choose him?” His voice breaks as he shakes his head in disbelief.
“What happened?” Elizabeth loops her hand into mine, bracing us both.
Michael tells us our Mom had indeed driven down to Richard’s the night she stormed away. They had watched a movie, had a bite to eat, went to bed—him upstairs, her downstairs, Richard had assured Michael. The next day, they went to a Greek restaurant. She was worried when a woman had pointed to their table; she was sure the woman would poison her food, and refused to eat it when it arrived. Richard suggested they bring the meals back to his house, suggested they both eat half of each dish so he could prove to her they weren’t poisoned. She balked; she insisted the woman wanted to cause her harm.
“Don’t do this,” Richard had pleaded. He told Michael his first wife had thought coworkers were poisoning her food. She’d lock it up at work so they wouldn’t be able to access it. Such a strange coincidence that my mom would show up at his door, thinking her food was poisoned, too. Michael pauses in his telling of the story and takes a deep breath.
“What happened with his wife?” I ask.
“She killed herself,” says Michael and a chill travels through my body. Michael looks at me with such concern, I turn my head to avoid breaking down.
“Your mom told him she wanted to have Thanksgiving with her family, after all,” Michael says. “Richard was glad; he told her that’s where she should be.”
“Do you think she drove by and saw Dad’s car and took off again?” I ask.
“I wonder.” Elizabeth squeezes my hand hard.
Richard is devastated when he learns we have no idea where our mom has gone.
“Poor guy,” I say. “He must have been so triggered by all of this.” As if I’m not being triggered, myself. As if all of us aren’t in shock. Easier to transfer sympathy to a stranger for a moment; easier to worry about someone we don’t know.
“Why did she choose him?” Michael asks again. “Of all people in the world, why did she have to choose him?”
The next morning, I get a call from an unfamiliar number with an 818 area code.
“Is this Gayle Brandeis?” a woman asks.
“Yes,” I answer and hold my breath.
&nb
sp; “Do you know where your mother is?”
My heart starts to race. “No,” I say. “Do you?”
The woman tells me she is calling from Sherman Oaks Hospital. She was my mom’s nurse, she says; her name is Mary. My mom had come in complaining of chest pain the previous night; she was hooked up to IVs and heart monitors, but had left the hospital abruptly this morning, had torn out the IVs, ripped away the wires. The hospital had notified the police. I was listed as my mom’s emergency contact; Mary hoped I would know where she had gone.
“I’m sorry,” I tell her. “We’re looking for her, too.”
I fill her in on what’s been happening with my mom for the last couple of weeks, what’s been happening for the last sixteen years.
“She’s never been diagnosed?” Mary asks.
“She doesn’t believe anything’s wrong with her,” I tell her.
“That’s hard,” she says. “I’m sorry.”
She asks for information about my mom’s car; she tells me she’ll have the security guards check the parking garage to see if it is still there; if it is, they’ll block it in. She gives me the phone number for the police department. She congratulates me on the baby. She wishes me luck.
The Van Nuys police officer on the phone is kind but cursory. He gets all the details about my mom—height, weight, what she might have been wearing. He gives me a case number and his direct line. He says we can call any time. He assures me he’ll do his best to find her.
I stare at the string of digits on the yellow Post-It. They make her disappearance feel more real, somehow. This is no longer just a family matter—it’s something much bigger; it also feels much smaller somehow now, too, as if she’s been reduced to the case number swimming before my eyes. I hope this number will help her get the help she needs, but something in me resists its order, its depersonalization. My mom has always seemed so expansive, too slippery to be contained by anything, but here she is spun down to a tidy little code, something easy for police to file away.
MISDIAGNOSIS III: Not an Eating Disorder, Ehlers-Danlos
[Cut to ARLENE in front of third panel of triptych.]
ARLENE: The panel 3 is about my younger daughter, who, at the age of twelve, had this horrific experience with regurgitation. She couldn’t keep food down for seven months and she was diagnosed with Ehlers-Danlos syndrome. Then the rheumatologist came in and said it’s Ehlers-Danlos syndrome and, you know, “What is that?” Well, it causes flexible joints; it can cause joint pain; it’s an unusual rare genetic disease. Well, I had never heard of it and no one in my family had ever heard of it, and then I was back in the library trying to do some medical research, but the doctors in the meantime, in another wonderful well-respected teaching hospital, said, “She has an eating disorder. We have to put her in the psychiatric ward.” (ARLENE clasps her hands in front of her, makes a funny smirk.) I said, “This is crazy, this is the most mainstream kid you could ever hope to find. She has loads of friends; she’s not a people pleaser; she’s very much her own person.” I said, “This is not an eating disorder.” Well, I become immediately like the scourge of the doctors. (Laughs) I said they were wrong, and, uh, I guess you’re not supposed to do that, but I did. And so the battle began with the doctors; I was the “controlling mother” [ARLENE gives a look like “How could they ever say this?”], trying to control the medical team. In the meantime, I said—and I had no support for what I believed, I mean, I didn’t have support from anyone—she continued to lose weight. She was really in terrible shape, and I was just going off the wall.
Mom,
I still miss our old Evanston apartment, the apartment you so resented—5B, on the fifth floor of the five-story red brick building, 550 Sheridan Square. It’s what I still think of when I think of “home” at its most archetypal level. You didn’t think we should be renting—you wanted to buy a house. You never let Dad forget this, even though he tried to explain to you that his company was going through bankruptcy and having assets would be risky. I am glad we didn’t buy a house then; I loved Sheridan Square. It wasn’t actually a square, just half of one, that L-shaped, one-way street that started in Evanston and emptied out into Chicago, bordering the lakefront. I loved saying I lived on an L-shaped street. Maybe that’s where my love for letters was born, living on the forearm of those two perpendicular lines, the L bent like an elbow, holding me close to the heart of my life.
Elizabeth and I spent a lot of time at Garden Park, that little meadow dotted with trees and playground equipment on the corner, flaring out from the joint of the L, overlooking the lake. You let us go there unsupervised—you let us go a lot of places unsupervised—and we often had the place to ourselves. We spent a lot of time just sitting in the grass, making necklaces out of rusty clover flowers, prying open damp, furry dandelion buds, sucking the sour milk from dandelion stems. We peered at the ladybugs, mating by the hundreds in the stone basin of the water fountain, a writhing mass of red and black. We stood in the pebbly picnic area overlooking the lake and watched the waves roll toward us. We smushed the poisonous-looking berries that grew on vines along the back fence and thrilled at the bitter, illicit scent they left on our fingers. We picked the violets that also grew along the back of the park and often came home with little bouquets for you, limp from the heat of our hands.
We invented a special game in front of our building. We each stood in one of the little patios that flanked the sunken entranceway, then pointed to each other and yelled, “That’s my house!” We’d run down the little steps and across the concrete to the opposite patio, giggling as we passed each other. Then we’d run up the steps of that patio, turn around, look at each other, point, yell, “That’s my house!” and we’d run back again. This would continue, back and forth, back and forth, until we were too exhausted to go on.
When we were little, we were each other’s house. We were each other’s everything.
After we moved away from the building, after you finally convinced Dad to buy the house in Winnetka, the house I came to hate, the house where our family fell apart, the game got more subtle, more insidious. We didn’t even realize we were playing it. Elizabeth wanted to inhabit my illness. I wanted to inhabit her long legs. She wanted my curly hair; I wanted her golden highlights. We wanted to move into each other’s bodies—“That’s my house,” “That’s my house.” We used to be so comfortable with one another’s bodies, but now even our own bodies had become foreign, volcanoes spewing over a once familiar landscape.
As soon as I traded in the “sick girl” mantle, Elizabeth readily picked it up. She began vomiting. Projectile vomiting, like something from The Exorcist. She would open her mouth during dinner and a huge firehose of puke would spray across the table and splat against the opposite wall. It was quite impressive. It was even more impressive when I learned years later that she was making herself do it—no finger down the throat, no syrup of ipecac; just sheer force of mind willing her body to empty itself.
When we went to visit Elizabeth at Children’s Hospital, she wouldn’t look at us. She lay on her side, facing away, a nasogastric tube up her nose, her spine as distinct as a string of pearls through her night shirt. I couldn’t look at that elegant backbone, couldn’t believe that long skinny girl was my little sister.
Her doctor had a crush on her. “She’s looking more and more like Nastassja Kinski,” he sighed. “Her eyes just keep getting bigger and bigger.”
I felt a stab of jealousy. No one thought I looked like a glamorous movie star when I was sick. I was told my arms looked like Popsicle sticks. I was told my face looked like the moon.
You just couldn’t see what was really happening with your girls.
“It’s an eating disorder,” one of Elizabeth’s doctors said.
You denied it.
“She’s doing it on purpose,” one of her doctors said.
You denied it.
He put her on behavior modification therapy. One privilege was taken away after another: first the TV, th
en the phone, then objects from home, then friends weren’t allowed to visit, then family. But she kept throwing up. And her body began to fall away, too. One thing after another was leaving her.
In the myth of Inanna, the goddess hears her sister moaning in the underworld. Inanna goes down to join her. At each gateway to the underworld, Inanna has to let go of another thing: at the first gate, her crown; at the second, her lapis beads; at the third, her sparkling stones; the fourth, her breastplate; the fifth, her gold ring; the sixth, her lapis divining rod; the seventh, her royal robe.
“You’re killing her,” you told the doctors.
“She’s killing herself,” they said in return.
Elizabeth didn’t say a word. She was Inanna. She had to enter the underworld naked and unarmed. It was the only way she could approach her sister’s throne.
NOVEMBER 28, 2009
When a person is missing, it’s hard to know what to do. When a person is missing, you can search or you can wait, wait for the police to do their job, wait to hear from the missing person, a phone call, her voice saying something like, “I’ve been in Santa Barbara,” or, “I’ve been wandering around Kmart. Why were you so worried?”
I find it hard to do much active searching with a newborn in my arms, but I do check the map around the Sherman Oaks Hospital, trying to imagine where she might have gone. The neighborhood seems to be mostly residential, but there’s a War Memorial Park with a pool—could she have gone swimming? She didn’t learn to swim until she was forty, but has become a nearly-every-day lap swimmer; she doesn’t feel right if she doesn’t get her swim in, she says. Michael goes through my mom’s phone and calls all the people with a 760 area code, people he imagines might be friends, although she has very few friends, maybe no friends at this point. No one knows where she is; few have heard from her in months. My sister makes her own phone calls—hospitals; morgues. No sign anywhere.
The Art of Misdiagnosis Page 9
