The Art of Misdiagnosis Read online

  Additional praise for The Art of Misdiagnosis

  “Riveting, insightful, and beautifully written, this memoir kept me up all night.”

  —CHRISTINA BAKER KLINE,

  New York Times best-selling author of Orphan Train

  “Gayle Brandeis dances on the edge of memory’s razor: both candid and eloquent, The Art of Misdiagnosis never fails to cut down to the truth. I was both moved and enlightened by this unflinching memoir.”

  —LINDA GRAY SEXTON,

  best-selling author of Searching for Mercy Street: My Journey Back to My Mother, Anne Sexton, and Half in Love: Surviving the Legacy of Suicide

  “Gayle Brandeis is one of the smartest and most compassionate voices in nonfiction today. Her insights about how we live as women, as mothers and daughters, and as human beings cut straight to the heart. Everyone needs to read her.”

  —HOPE EDELMAN,

  internationally best-selling author of Motherless Daughters

  “Deeply compassionate, and breathtakingly brave, Brandeis’s memoir is a raw, unflinching trip down a rabbit hole, unspooling both the chaotic life of her mentally unbalanced mother and how her mother’s obsession with physical illness crash-landed Brandeis’s own life—and health—from girlhood to marriage and motherhood. About the stories we desperately need to make of our lives in order to survive, and how the body sometimes speaks what the mind dares not, this is also an extraordinarily moving portrait of a troubled mother and of the daughter who fearlessly, poetically, writes her way into discovering her truest self. Truthfully, I am in awe.”

  —CAROLINE LEAVITT,

  New York Times best-selling author of Is This Tomorrow and Pictures of You

  “The Art of Misdiagnosis is Gayle Brandeis’s masterpiece, and it reads with the urgency of a literary thriller. Here Brandeis delves into the liminal place—between life and death, between psychosis and sanity, between love and guilt—with a poet’s heart and a detective’s courage. If you’ve ever watched someone you love unravel, or if you’ve asked the echoing ‘why?’ of suicide, you’ll find home in these pages.”

  —ARIEL GORE,

  author of The End of Eve

  In loving memory of Arlene June Baylen Brandeis, 1939–2009

  DO YOU HAVE ANY OF THESE SYMPTOMS?

  Joint pain

  Gum disease

  Detached retina, in early or midlife

  Mitral valve prolapse

  Family history of sudden cardiac death

  Crohn’s disease

  Irritable bowel syndrome

  Constipation

  Hypermobile joints

  Skin hyperextensibility

  Unexplained regurgitation or vomiting

  Sensitive to sunlight

  Nervous when dieting

  Bingeing on carbohydrates

  Intermittent psychotic episodes

  Severe abdominal pains

  Rashes

  WE ALL NEED AND DESERVE A CORRECT DIAGNOSIS

  —From The Art of Misdiagnosis:

  An Art Tour into the Genetic History of the Artist

  (DVD, back cover; Arlene Baylen Brandeis, executive producer)

  Prologue

  DECEMBER 2009

  After my mom hangs herself, I become Nancy Drew. I am looking for clues, for evidence. Answers. I put on a detective hat so I won’t have to wear my daughter hat, so I can bear combing through her house. I wrap my new baby to my chest with a bolt of green fabric—my baby born exactly one week before my mom’s death—and recommence the dig.

  When my sister and I first ventured into our mom’s bedroom the day of her memorial, Elizabeth said the space was a perfect metaphor for our mom—lovely and elegant on the surface, total chaos underneath. In the end, our mom couldn’t hide the disarray; everything had spilled out, spilled over. Papers were strewn on every surface, leaking out from under her brocade-swathed bed. I bent down that day and found an old Mother’s Day card I had written as a teenager, one that gushed about how she was “forever doing things to make me well.” I cringe to see it now.

  My sister has just flown home to Toronto; it’s harder to sift through everything without her here. In the first folder I open after she leaves, I discover notes our mom had taken during a workshop on the seasons of grief. A surprised little laugh kicks in my throat; she’s left a guidebook of sorts. The first season, according to her notes, is the “Season of Grieving.” Her notes say “Shock—shipwreck of our soul. Disbelief—Lost. Didn’t know the world anymore.

  You just don’t fit anyplace. The true ‘you’ is not present.” Okay, I can relate. The baby on my chest is a life vest; without him, I would be sinking.

  I read on to see what I have to look forward to. The second season, her notes tell me, is “Season of the Death of the Soul”: “Enter into a landscape for which there are no maps. Walk into the long dark night with no guarantee to find your way out. We must learn to wait without hope. We may hope for the wrong things.” Great. Can’t wait.

  Next comes “Third season of mourning”—“We grieve because we have dared to love and we grieve because we dare to love again. Love is the most difficult task of all, but all is a preparation for love. Fear of loss makes loving so difficult. Death is the bride of love.” Death doesn’t seem like a bride to me. Death seems more like a gangster, a gangster of love, and not the Steve Miller, space cowboy kind—this is the ruthless, brutal, kind, the kind with complete disregard for decorum. A bride leaves pastel, sugar-coated almonds on the table; a gangster leaves blood.

  In the fourth season, we are supposed to “Open to the larger story that grief can interrupt.” “Creation of a compassionate heart,” her notes say. “Our wounds open us up to others, not only to other people, but to all of creation.” Maybe someday I’ll get there.

  I keep digging.

  I find a picture of my mom and Eli, the love of her life, her sister Rochelle’s psychiatrist, the married man she loved from the time she was sixteen until he died of cancer ten years later. I’ve never seen him before; she had always described him as dashing, magnetic, but he looks like a bulbous old lech. His arm is around her in the little black and white snapshot tucked into an old address book—she is radiant, so happy; he looks so happy, too, his arm around a beautiful teenage girl, claiming her when she couldn’t claim him, although her oldest sister Sylvia told me she knew about the relationship; she said there was an energy around the two of them when the family went to visit Rochelle in the psychiatric ward.

  My mom had told me Eli was the brother of a Supreme Court justice, but when I look up the judge in Wikipedia, I can’t find any mention of a brother named Eli. I do find an article about Eli in the archives of the Chicago Tribune, however—an article that says he had been kidnapped and held for a sizable ransom, that says he had escaped. It appears to have happened the year they met. Is that what made my mom fall in love with him? Is that what led to her obsession with large sums of cash? I find a note about an independent-study high school she briefly attended on Michigan Avenue. I follow a hunch and look up Eli’s old office address. Michigan Avenue, too. Had he arranged for her to go there? Did they sneak off together during lunch breaks?

  Nancy Drew, Nancy Drew, Nancy Drew.

  Asher has fallen asleep. I unknot the wrap from my body, lay him gently on my mom’s bed. He stirs a moment; I let him nurse for a few sips until he nods off again. The pale green fabric unfurled next to him is super long—at least four yards. It could easily be used as a noose. Asher has never rolled over in his life, but I imagine him rolling across the bed, looping the heavy cotton around his neck. I gather up the wrap and set it on the end table. When I stand, my shirt is plastered to my chest with sweat and milk. I stretch it forward, let the
air touch my skin, let the sudden chill push me back to work.

  I find a list of my mom’s fears:

  Poor health

  Loneliness

  Angry feelings

  Fear of daughters not loving me

  Depression

  Always friendless

  Getting old—older looking

  Clutter—mail disorganization

  Cats

  Ants

  I find her copy of Rilke’s Letters to a Young Poet and open to a page she has marked: “We have no reason to mistrust our world, for it is not against us. Has it terrors, they are our terrors; has it abysses, those abysses belong to us; are dangers at hand, we must try to love them.”

  I find a scrap of paper that says “TAP WATER BURNED LIPS 10/17/09” next to a nearly empty glass.

  I find a letter dated November 20 to an Oceanside police officer who had apparently visited her house: “I was taken aback by your title but assume you can see I am not a psychotic Oceanside resident,” she had written. Later in the letter, she accused Dad’s “cyber goons” of wiping out her computer and stealing files relating to the documentary she was producing, The Art of Misdiagnosis. I wonder what the officer’s title was, wonder why he hadn’t recognized her as psychotic—according to the letter, he had suggested she get a restraining order against my dad. If that officer had brought her in on an involuntary psychiatric hold, where would she, where would we, be today?

  I find a red cloth-bound journal with a handwritten title page inside, “A Wife (in name only) by Arlene Baylen Brandeis,” followed by a few poems, like “invisible mom”:

  adult daughter

  walks past me

  to lavish love and

  affection upon

  her father

  don’t you know?

  i’m the one

  whose

  starving

  Most of the journal is blank, but waves of guilt waft toward me from every page. I feel even more guilty when I realize I want to correct her misspellings, change “whose” to “who’s,” add some punctuation. You criticize me even when I’m dead, I can hear her say.

  I find a shopping list with the word “Life” on it. She meant the cereal, a staple in her house, but the word looks so poignant, her desire for Life. The last word she ever said to me.

  I find a letter she had written but never sent to me and Elizabeth in 2005, when she thought she was dying of heart valve disease. Part of it says “I think I have slightly more than a year to live. Oct ’06, is the time I will pass into the next phase. Celebrate my life. I did it my way, and have no regrets. I hope the two of you and Dad also have no regrets.” It closes with “I know you’ll both keep my memory alive with your precious children. I will be a good spirit for all of you.” I find myself wishing that this was her real last letter, her true final words. I wish I could imagine her as a good spirit.

  I also find a handwritten will from her own mother inside a brittle envelope. In it, she bequeaths the family house on Mozart St. to my mom, Rochelle, and Don, “as you need a Home + you three are all ill + have to shift for yourselves.” I wonder what illness she was referring to regarding my mom. Rochelle and their brother, Don, were both mentally ill. Did she know my mom was, as well, or was this related to the rheumatic fever—or at least what was called rheumatic fever—that plagued my mom when she was young? My grandmother also wrote that she hoped her seven other children would understand and that there should be “know hard feelings.” I keep looking at that phrase, which repeats three times in the will, same spelling—“know hard feelings.” That’s what I want to let myself do now—know hard feelings. Face them and know them head on. Something that’s never been easy for me.

  And maybe it is my desire to know hard feelings that leads me to open the brown paper bag from the coroner’s office—the large grocery sack folded over and stapled shut like a school lunch for a giant—that contains the clothes my mom was wearing when she killed herself. I’ve felt so removed from the physicality of her death. Every night, just as I’m about to fall asleep, images barge into my head of her hanging herself—the wrap, the drop; sounds barge into my head, too, the different gasps and gurgles that might have issued from her throat, but these are phantom imaginings, not the visceral reality of her suicide. I appreciate how everyone wanted to protect me in my postpartum state, but part of me wishes I could have seen her body in the mortuary, wishes I could have gone to the coroner’s office to retrieve her things. This I can do, right here, right now. I can touch the clothes my mother died in.

  Everything is bunched up inside the bag as if it had been ripped off her body without any care, and this makes it worse, knowing her body was treated roughly, no tenderness in the undressing.

  My hands shake as I pull out one item after another:

  • A black, white, and gray bouclé jacket with large black buttons.

  • The red ribbed short-sleeved turtleneck she wore in her senior modeling photo, wrenched inside out.

  • Black Chico’s pants, also inside out, smelling of urine.

  • White panties, inside out, too, smelling even more strongly of urine. I learn later that when someone hangs, their bladder lets loose.

  • Tan and brown tiger-striped bra; this touches me, somehow, this touch of wildness she carried beneath her clothes.

  • Ryka sneakers, white with silver trim, the lining bunched up inside as if her feet had been yanked out, smelling of sweat.

  • Elizabeth’s tan and black batik scarf, the one our mom had draped on her head the last night we saw her. Is this what she used to take her life?

  I touch each piece of clothing gently and weep, laying them out on the floor around me the way I would lay out baby clothes when I was pregnant, imagining the life that was going to fill them; now, though, I imagine my mom’s life ebbing away inside the fabric. I try to sense any lingering traces of her aliveness here—perhaps a lingering trace of Joy, her signature fragrance—but all I smell is her death. I hadn’t known to prepare myself for this, the smell of her death. The smell reminds me of when a baby raccoon had died under my house many years ago; it took a while to find the source, and the stench kept getting stronger and stronger. But that was a dead animal, I tell myself, until I realize that’s exactly what she was, too; in the hours between her death and the time she was found, she had already started to decay. I quickly stuff everything back into the bag, stomach heaving, the smell of her body burned into my brain.

  2014

  Dear Mom,

  My therapist suggested I write to you. She thought it might help me find some clarity, help me understand how I am feeling about everything. It’s good advice—I often don’t know what I know until I write it down.

  I wish I knew where to begin.

  I suppose I could just write

  WHY?

  in giant letters smack in the middle of the page and leave it at that. I could be more specific: “Why did you kill yourself?” But even that would be too easy. Besides, I have too many other questions. Questions about our family’s relationship with illness. Questions about our family’s relationship with silence. Questions about your own relationship with your family. Questions, questions, so very many questions. Questions you’ll never be able to answer.

  It’s always been hard to talk to you.

  You gave me and Elizabeth an idyllic childhood in so many ways—I’ll forever be grateful for the freedom we had to play and create and explore, for the family vacations we took to places like Disney World and Washington, DC, for the way you exposed us to museums and concerts and good food, the way you drove us to figure skating and dance classes, the way you made us feel our possibilities were limitless. Once I hit thirteen, things fell apart, but I had a practically perfect childhood. Still, even then, I didn’t know how to talk to you.

  I do know when that started. I was five years old. You had just eased your brown Chevy Impala into our spot in the communal parking garage under our apartment building in Evanston,
Illinois, the spot you could glide straight into once the metal door clanked up on its track. The best spot, and it was ours. I suspected this made us the royalty of the building; I felt sad for all the other residents who had to back into tight spaces hemmed in by concrete pillars. You cultivated that feeling in us from the start—the sense that we were special, royal.

  The garage was cool and smelled of leaded gasoline when I opened the back door; I took a deep breath, the scent as delicious to me as bread, and tried not to pay attention as you quietly got more and more upset. I wish I could remember what I had said to you; I remember everything from this moment except the words that set you off. They couldn’t have been too bad—I was always careful with my speech—but you yanked the green and white Wieboldt’s shopping bag off the floorboards, plucked Elizabeth from her car seat, and tore toward the door that led to the elevator.

  “You never say anything unless it’s something mean about me,” you snarled. You had never spoken to me like that before. You had never said anything to indicate this is how you saw me: a girl who didn’t speak except to cut you down. I thought I had always been your special flower, your good, smart girl, but now I knew you had been harboring a secret grudge against me. Now I knew you saw me as the enemy.

  I trailed behind you and felt something slide shut across the inside of my throat, heavy as a manhole cover. It took me years to pry it back open, years before I could speak freely again. Not that I ever could around you; I wanted to, Mom, I really did, but something shut down inside me when you were around, some vital gleaming part.

  I think of Gaston Bachelard: “What is the source of our first suffering? It lies in the fact that we hesitated to speak. It was born the moment we accumulated silent things within us.” That moment in the garage was my moment, the moment I started to accumulate silent things. So many are still hoarded inside me, packed against my rib cage, settled in my gut.

  It occurs to me now how strange it is that I felt silenced by you in a parking garage and you silenced yourself in a parking garage almost four decades later. Both of us in the bowels of apartment buildings, cutting words from our throats. I still have breath in my lungs—a gift I don’t want to squander, a gift you tossed away—but sometimes I can feel the weight of that manhole cover clank back into place. Maybe writing this letter will help remove it for good.