NOVEMBER 9, 2009
My mom leaves a voice mail that makes my belly contract. The baby isn’t due for a few more weeks, but I can picture him shooting out of me now like a cannonball.
“I don’t know why you won’t help me during the most difficult time of my life.” Her voice quavers several octaves higher than normal. “I ask you to write one simple log line for Sundance and you won’t do it. You’re the writer; I’m not.”
I take a deep breath and the scent of cat pee rushes in from the laundry room. The smell has plagued us since my new husband, Michael, and I moved to this little midcentury ranch house in Redlands, California, last month; we haven’t been able to get rid of it, even after we ripped up the linoleum with our landlord’s blessing and doused the floor boards with vinegar. But the office has French doors leading to a deep back yard, and the living room came with a piano, and the bathroom has vintage sky blue tile, and I’m going to give birth here—it’s hard to not be fond of a house where one’s going to give birth. And, truth be told, I’m starting to get used to the smell—it doesn’t make my eyes water anymore, doesn’t make me gag. Amazing what we can get used to, what we can learn to live with.
I call my mom back, but there’s no answer, a relief; it’s easier to deal with her over e-mail. I resend the log line I had written and shared with her last week, a fact she has forgotten, so ready to believe I’m part of a plot against her.
The Art of Misdiagnosis explores the abstract paintings of 70-year-old Arlene Brandeis, and how her art reveals not only her family history, but a larger story of medical ignorance and malpractice. The film features interviews with the Oceanside, CA, artist and her family as well as experts on the subjects of Ehlers-Danlos Syndrome and Porphyria, two disorders that have wracked the artist’s family and are largely under- and misdiagnosed in the general population. Brandeis sees herself as a medical advocate and wants this film to ultimately change emergency room procedure and doctor/patient communication in order to save lives that would otherwise be lost through misdiagnosis.
I have to admit, there are moments I let myself believe her propaganda, propaganda I helped her write. I know this documentary isn’t going to get into Sundance; it’s not going to change emergency-room procedure, either—it is more about her own paintings and her wild conjectures about our family’s medical history than it is about changing the health care industry—but somehow when I wrote this log line, I let myself believe she could make a difference. Maybe because she has, in the past. She can be persuasive when she isn’t delusional; sometimes even when she is. She spearheaded letter writing campaigns that removed guns and ammunition from the shelves of our local Kmart; she lobbied Congress to change divorce law.
The Art of Misdiagnosis has become my mom’s magnum opus, her albatross. The project has brought her to the breaking point and has dragged me and my sister right to that edge, too. Elizabeth and I had asked our mom not to talk about our own journeys with illness in the film, but when she showed us the rough cut, there she was, talking at length about how her poor daughters had been misdiagnosed. She doesn’t say anything about how both of us had fabricated our own illnesses, at least in part—we’ve tried to tell her this over the years, but she hasn’t been able to hear it. She doesn’t want anything to disrupt her own storyline, the story of herself as the heroic crusader, the warrior martyr of a mother who stood up to the big bad medical establishment and saved her blameless girls.
The mockup of her DVD cover features a photo of her perched at one end of a chaise lounge, legs crossed, her weight tilted onto her right hip. Her hair is dark and close cropped, a touch of white at the temples; she wears a mustard-colored jacket over a black turtleneck and black slacks, her fingernails cherry red. It looks as if she’s either holding in a laugh or smirking, her lips pressed into a tight smile. Behind her hangs the triptych she painted, three large abstract canvases collectively titled “The Art of Misdiagnosis.” The one on the left, It Was Not Rheumatic Fever, references her own childhood illness; the one in the middle, It Was Not Crohn’s Disease, references me; the one on the right, It Was Not an Eating Disorder, references my sister. Three canvases full of geometric shapes she had blocked off with tape, then painted in muddied jewel tones. Three paintings that look like they should be hanging in the lobby of a Holiday Inn but somehow are supposed to represent medical injustice.
I want to drive the hour and a half south to her house in Oceanside and rip the paintings to shreds. I want to send an explosive through the back of each canvas, the way the resident director of my dorm detonated a cherry bomb through the painting of a naked woman he had asked me to hold out in front of my chest, the unexpected bomb scorching a hole straight through her belly. I wasn’t hurt, but the speech he had spouted, pre-explosion, about innocence cut into me as if he had known I wasn’t as innocent as I appeared, as if he had known something dark was hidden inside my own gut. He was fired shortly afterward, but not because I said anything. I won’t say anything to my mom, either, won’t do anything, now that she’s almost done with the film. I’ll bite my tongue, as I always do. I’ll keep my hands to myself. I’ll even help her with this project, this noble, misguided project, this project that perpetuates some of my biggest lies.
My mission is to empower and educate
those of us and our loved ones
whose conditions are not easily
diagnosed and sometimes
misdiagnosed by the medical community.
Making links for the little
known conditions
of Ehlers-Danlos Syndrome (EDS)
and joint problems,
cardiovascular problems,
even Sudden Cardiac Death with
Vascular Ehlers-Danlos Syndrome.
Making links from the
Acute Porphyrias and EDS
to Inflammatory Bowel Disease.
The links to undiagnosed
Acute Porphyrias and misdiagnosed
mental illness may be greater
than any of us realize.
There may be simple things
to do, to treat these conditions
when correctly diagnosed.
. . .
I would like to save others
from the pain,
loss and frustration my family
endured from the misdiagnosis
of these conditions.
This film and my artwork were inspired
by my own family experiences.
Arlene Baylen Brandeis
Artist/Executive Producer
[Camera pans over close ups of abstract paintings: The Art of Misdiagnosis, Death and Transfiguration, Paternal DNA, Rochelle’s Rhapsody]
ARLENE BAYLEN BRANDEIS (Voice-over): I fully feel that the spirits of my family have propelled me to do this documentary, to tell this story, to try to educate doctors, emergency rooms, nurses, the lay public. I mean, this is my mission in making this documentary. I think it has the potential to save lives and to stop a lot of the misdiagnoses that go on in this country and around the world.
Mom,
I keep thinking about your “scenarios,” the stories you used to make up about people around us, the stories that delighted and troubled and sometimes scandalized me. I remember a particular one at Sam and Hy’s Deli in Skokie when I was ten.
“You see that guy over there?” You pointed your bagel toward a portly man a few booths away. “That girl he’s with? She’s not his daughter.”
I tried not to be obvious as I looked over at the girl at his table. She was probably around fourteen, a few years older than me, with dirty-blond hair, a smattering of pimples on her chin, dark makeup around her eyes. The girl reached into the stainless steel vat of complimentary pickles that sat on every table, using her fingers, not the metal tongs. Sam and Hy’s Deli made the best new pickles—crisp and bright green, still tasting of cucumber. I shuddered a little, imagining strangers sticking their hands in our own vat.
“Who is she?”
Elizabeth asked, her mouth full of kreplach from her bowl of mish mosh soup.
“She’s a runaway,” you said, a devilish glint in your eye. “She was hitchhiking in Schaumburg when he picked her up. He’s far enough from home that no one will recognize him here. He thinks if he buys her enough chocolate phosphates, he can have his way with her.”
I wasn’t sure what that meant exactly, but I felt a shiver of embarrassment, a sizzle of thrill, as I watched the girl eat her pickle. Would she give in to the sweaty man, pink as pastrami across the table from her? Or would she take the chocolate phosphates and run?
You did this at almost every restaurant. over shrimp and lobster sauce at ChiAm in Chinatown or snappy Chicago-style hot dogs at Fluky’s, you would point to a table and tell us the diners’ stories—who was angry at who, who was betraying who, who had the most horrible disease. You were utterly convincing. If the people themselves ever were to come up to our table and told us about their lives, I doubt I would have believed them. It was your stories—your “scenarios,” as you called them—that carried the weight of truth.
Years later, when you started to accuse Dad of all sorts of criminal behavior, it was hard to know at first if you had lapsed into mental illness or if this was just another one of your scenarios, an elaborate story built from the barest of evidence.
Joan Didion says we look for the sermon in the suicide. I’m not sure I’m looking for a sermon. I’m just looking for you. I am aching to understand you now, to figure out your story, the path that led to your unraveling. All I can really do is patch together a narrative from the spottiest of clues—the fragments you handed me, the shards I can gather on my own. All I can really do is write my own scenario, my own (mis)diagnosis of your life.
NOVEMBER 16, 2009
Thirty-seven weeks pregnant and I can’t seem to stop crying. This is unusual for me. I tend to be an optimistic person. Relentlessly so. Probably obnoxiously so. I tend to be not just a glass-half-full kind of person, but a person who may just point out that the rest of the glass is filled with sunlight; an everything’s-going-to-be-okay, go-with-the-flow, isn’t-life-amazing type of person—in the world, at least, if not always in my own head.
Part of the reason my first marriage fell apart two years ago was because I didn’t know how to let my husband know when I was upset. I spent way too much time smiling when I should have been honest with him. I kept so much frustration and anger pent up inside, so many silent things accumulating until they turned toxic under my skin. I’ve told myself I won’t make the same mistake with my new marriage, and it appears my body is holding me to that, at least for now. My habitual smile is starting to fracture; whatever has been hiding behind it is seeping out.
Half the time, I have no idea why I’m crying. I cry at the midwife’s office; I cry at our childbirth class. I cry when I learn on Facebook that my nineteen-year-old son, who lives with his dad, was hit by a car as he was riding his bike. He’s okay, it seems, just banged up a bit, but that’s not the kind of news a mom likes to stumble upon on social media, even when she isn’t deeply hormonal. I cry when I get scared I’ve forgotten how to be a mother. It was so easy and joyful when my kids were babies, when they were young, when I created creativity festivals for their preschools, when we made “color meals” together—red bread with green butter, pasta with creamy blue sauce—when we curled up together with books and crayons and silly songs, when we crawled on the grass together to peer at ladybugs and worms. Now my kids are both teenagers—my daughter is almost sixteen—and parental instincts seem to have fled my body.
I always told myself I would be a mom whose kids could tell her anything, but I fear my kids have as much trouble talking to me as I do with my own mom. I love them both with all my heart and worry I’ve taken a wrong turn somewhere, maybe by smiling too much, by not acknowledging hard things enough, by not modeling how to be real.
I get another voice mail from my mom, this one saying she is driving to my house, saying she is going to spend the night. I leave a panicked voice mail on her phone, telling her it isn’t the right time; I have grading to do—my Antioch MFA students have just turned in their work and I want to get to it before my UCLA Writers’ Program students turn in their work, want to get to it before the baby comes, which feels like it could be any minute now.
“There’s no place for you to sleep,” I tell her voice mail, belly contracting again. Hannah’s been using her bed as a desk and has been sleeping on the couch.
My mom calls back. She’s turned around; she’s on her way home. I am flooded with relief. Relief tinged with guilt, but relief all the same. There’s no way I could have gotten work done with her there, wanting my attention. She gets offended if I so much as glance at a newspaper when she’s in the same room; if I read my students’ fiction in her presence, she’ll find some way to make me feel horrible about it. Likely by inventing some medical emergency. Or telling me about my father’s latest supposed acts of betrayal.
The doorbell rings around 10 p.m. Hannah, camped out on the vintage leopard print sofa, answers it. “Oh, hi, Nana,” I hear her say, and my heart drops to the floor. I walk out of the office, bleary eyed from critiquing fiction. One of my students is writing a novel where a woman and baby die in childbirth and hang around their apartment as ghosts; another student is writing a novel in which a woman suffers horrific pregnancy complications during the Holocaust. Amazing novels, but not the most uplifting of pregnancy reading. This is reality, I tell myself as I read scenes of blood and rot, the baby twisting inside me—it’s good to be in touch with every aspect of reality. When I was pregnant with Arin, I avoided all the pages about C-sections in my childbirth preparation book, and I ended up getting sliced open. Sometimes we’re thrown face to face with the very things we’re trying to avoid. Like my mom, here in my living room. She has a long cushion from an outdoor chaise lounge tucked under her arm. A few ties dangle down from the sides, like tiny insect legs on a huge thorax.
“I can sleep on this.” She pushes past me and lays the cushion on the floor of my office, right behind my desk chair. When she looks up at me, she says, “You look awful.”
“Thanks,” I tell her. “I was just about to head to bed.”
“Okay,” she says, disappointed. There’s clearly so much she wants to tell me, epic tales of her latest persecution. She’s probably been repeating them to herself the whole seventy-five-mile drive from Oceanside. All she can get in, though, is “There’s something wrong with my furnace” before I give her a cursory hug and close myself up in my bedroom. I hate to leave my husband and daughter to deal with my mom, but I am in no state to handle her. I may be able to face painful realities in my students’ novels—in my own novels, even—but my own life is another story entirely. I lie down and my belly collects itself into a tight knot and the tears stream freely yet again.
When I get up in the morning, as late as I possibly can, my mom is calmer; I am less afraid of her. Michael has already left for work. Two mugs sit on the kitchen counter, encrusted with remnants of hot cereal; my mom’s clearly held grits, Michael’s cream of wheat. It touches me to think of them sharing this simple, pale breakfast. My mom has loved grits ever since we had them for the first time in Colonial Williamsburg when I was eight. She always buys boxes full of the instant packets to give to my sister, who can’t get them in Canada. She buys them for me, too, even though I can find them at any grocery store.
“We didn’t have a meal together,” she says, almost mournfully, as if this had been our last chance to break bread. “It feels funny to be here and not have a meal together.”
“Yeah,” I agree, hesitant to say anything else. When I get near her, words harden in my throat, get stuck there, like the grits I’ll have to clean out of the mug later, stubborn as crystals in a geode.
Her face is softer this morning, more open. In fact, she seems to be pouring love and compassion toward me out of her eyes. It makes me flinch.
“I really have a lot of
work to do today,” I tell her and she looks predictably betrayed.
“I was thinking of going to my spiritual class, anyway,” she says, her features closing themselves off again. She attends classes given by Nancy Tappe, a woman who developed the concept of “Indigo Children” and has written such books as Understanding Your Life Through Color and Get the Message: What Your Car is Trying to Tell You. The latter talks about how cars are mirrors of our own “internal warning system,” what happens in our Hondas supposedly a metaphor for what’s happening in our souls. My own internal warning system is beeping now, red lights clanging inside me. Get her out, get her out, get her out now.
I call Michael as soon as my mom and her cushion leave. Hannah’s still asleep on the couch; once again, I haven’t been able to get her up for school. A truancy officer who goes by Sergeant Hammer came to the house a couple of weeks ago and threatened her with “Hammer Time”; she was freaked out when he was standing in our living room, but now she sees him as a joke. (And, really, how could she not?) She’s gone to class maybe a dozen times this semester; most of the time she’s here, sleeping during the day, on her computer all night. I console myself by telling myself it could be a lot worse: she could be running away, shooting up, getting pregnant. At least I know where she is.
“What happened after I went to bed?” I whisper into the phone.
I can hear him sigh. “She had me check her laptop for bugs,” he says. This doesn’t seem so unusual at first. Part of his job is to check the computer system at UC Riverside for bugs; friends and family often use him as a free IT guy. But it soon becomes clear he means microphones, tracking devices, not computer viruses. “She keeps seeing pop.sbcglobal.yahoo.com inside her e-mail, and she thinks it’s your dad hacking in. Pop, Papa.” “Papa” is what my dad’s grandkids call him, what I’ve taken to calling him, too, although my sister still calls him “Daddy.” “She didn’t believe me when I said it was the name of the server.”
The Art of Misdiagnosis Page 2
