The Art of Misdiagnosis

by Gayle Brandeis

  Mom,

  November 6, 1994, was a real turning point for our family.

  When Dad called that day, I could tell something was wrong. His “Hi, honey,” had a strange, flat weight to it. Before I could ask what was up, he said, “Mom attacked me.” You had been attacking him verbally, emotionally, for a year, but his voice told me this was different.

  “What happened?” I asked, every muscle braced. Hannah scooted across the front of the burgundy velour couch. I was so tightly wound; if she had tumbled, I could have flown across the room and caught her mid-fall.

  He took a breath and said, “I was standing at the sink and I felt something warm on the back of my neck and gefilte fish rose up my throat.”

  None of this made any sense. I could picture him standing at the sink at the house on Hibbard Road in Winnetka, looking out into the neighbor’s back yard that butted up against theirs, the one filled with gaudy animal statuary. I could picture him rinsing gefilte fish brine off a plate. The rest was a mystery.

  “It was a stun gun,” he said. “She thought it would give me a heart attack.”

  “Oh, Papa.” I could barely see straight. You tried to kill him. You actually tried to kill him. I scooped Hannah up and held her close, my heart thudding against her back. “You have to get out of there. You have to get out of there!”

  “I have,” he said. “I’m at the Marriott by the airport.”

  “Good, good,” I said, relieved but shaky. “Did you press charges?”

  Maybe you were in custody. Maybe this was the chance we’d been looking for, the chance to finally get you some help. I took in a deep whiff of Hannah’s hair as she squirmed in my arms; the scent of sunlight and dirt and shampoo calmed me. She wrestled herself away and went crawling across the room.

  “I couldn’t,” he said, his voice breaking down. “I couldn’t do that to her.”

  You called a little while later. I wanted to scream at you, but, as usual, the words froze in my throat. I told myself it was because I didn’t want to scare Hannah by raising my voice. I was grateful Arin was in preschool so I wouldn’t have to answer any questions about the call.

  “Your father attacked me,” you said, and the room started to spin.

  “What?” I asked. “What happened?” I knew I shouldn’t believe you, but part of me felt off balance, my mind taking in the remote possibility that Dad could have been the aggressor. I hated when I let that happen, when I let your delusions infect me.

  “He hit me on the head with some black thing,” you said, and just as quickly, my world shifted back to its original axis.

  Every creative writing book I’d ever read drilled in the importance of specific detail. I knew right away that Dad’s story—the warmth on his neck, the gefilte fish in his throat—was more accurate and authentic than “some black thing.”

  “If he did, it was self-defense,” I said, emboldened. Hannah looked over at me and giggled. “He said you attacked him with a stun gun.”

  “I did no such thing,” you said, your voice getting higher. “And I have the hospital report to prove it.”

  I learned later from Dad that after the stun gun failed, you went to the garage and smacked the door of your Thunderbird repeatedly against your head until you raised a bruise, then went to the Highland Park Hospital emergency room to report your husband had beaten you. I found the paperwork after your death. The doctor had sketched out a head with a smiley face—it looked like a jack-o’-lantern or snowman, something jaunty and festive with round eyes, a triangle nose and an upturned grin. A little area around the left temple is scribbled in with black ink, “2 1/2 x 3 1/2 cm hematoma” scrawled next to it; on the drawing, it looks less like an injury than a decoration, a flower on a Day of the Dead skull. The report reads “Ambulates into ER for c/o being hit by heavy black object on L side of head by husband, + bump, felt dizzy, now improved, no LOC or HA. PERL. Vision felt blurred, now improved. In process of divorce, no prior hx of physical abuse by husband, pt refuses social service at this time, number given to pt for referral in future if needed. Pt. at Police Station in Winnetka, pt refusing to make report.” You were given a cold pack to press to your head and were reportedly “in good spirits” two hours later.

  While I wished Dad had pressed charges, I was grateful you had not, grateful some part of you knew you shouldn’t send your husband to jail for something he didn’t do.

  Dad never moved back into the house. You didn’t speak to each other for the next three years.

  DECEMBER 2, 2009

  Michael and Asher and I drive back out to my dad’s house so we can be with him and Elizabeth and figure out our next step. Elizabeth and I have decided any memorial is going to be just family. Our siblings from our dad’s first marriage are flying in—our brother Jon and his wife, Magdalene, from New York, our sister Sue and her husband, Larry, from Maryland. Our cousin Bobby is flying in from Washington State. Matt will drive Arin and Hannah out from Riverside. The only nonfamily members invited will be Nancy and Jenn, who are like family, who have been instrumental during so many transitions in my life. Still, we want to let people in my mom’s small circle know about her death. Michael calls her friend Richard. “Life is shit,” Richard says and hangs up the phone. The few women Elizabeth calls who had once been my mom’s friends are sure our dad is somehow responsible for her death; Elizabeth has to tell them that she was delusional, that all her accusations were false. One woman asks, “Are you sure?” and I watch Elizabeth close her eyes as she says, “Yes. Yes, I’m sure.” Our mom’s spiritual teacher, she of the “what your car says about you” fame, says some platitudes about death and shows no sign of sympathy.

  I message a cousin—my mom’s sister’s son—via Facebook; he passes the news along to his mom, who e-mails me. “I’m shocked and deeply saddened by this horrible event,” Sylvia writes. “I suppose the fact that your mom and I never resolved our ongoing problems makes it even worse.” I still don’t know what all the ongoing problems were between them, but I’m grateful to be connected with her again.

  Father Paschal calls and tells me more about my mom’s last day. His accent makes his words tricky to understand, but I gather a few things:

  • She went to three masses. At the first one, she had approached him and handed him the letter she ultimately left for us. The letter asking for more time.

  • She spent the whole day in La Placita, staying in his office between masses. He gave her a Bible to read, and a book on depression. She told him she wasn’t depressed. He says she seemed happy; she seemed like she was with God (but still, he took her car keys, knowing she shouldn’t drive).

  • They had a meal together; she fell in love with a little girl and shared an apple with her.

  • She called him her son; he called her “Mom.” His own mom died six or seven years ago. “You have an African brother,” he says.

  • She gave the church a thousand dollars in cash. Maybe this was the money Duke Bristow had told me about.

  “We all die,” says Father Paschal. “We just never know the time. This was her time. It’s not up for us to question God’s choice.” He says we should know we did all we could.

  I thank him for helping my mom on her final day, for helping all of us. It feels weird that she gave the church so much money—part of me wonders if she was pressured into it—but it also warms my heart. It’s good to know one of her final acts was a generous one.

  PATERNAL DNA

  ARLENE: This painting is called Paternal DNA. Of course, it’s about my father. The porphyria side of the family I believe comes from my father only because I know he had a sister who died quite young and long before I was born, and it sounded like she had the same problem my sister, Rochelle, had, and, um, this rare form of hereditary corpora porphyria. My father had a very difficult end in life; he had two amputations, um, strokes. These corners kind of reminded me of those amputations for some reason; I made a connection to them that I feel. The drip painting is maybe in the
style of Morris Louis; he talked about controlled drip painting. I, um, didn’t think about it until the art piece was finished because I wasn’t familiar with Morris Louis at the time I did the painting, but he’s in just about every contemporary art museum and does a lot of this type of thing, only fewer drips and a lot of raw canvas. The music I used was Spanish Rhapsody, and his family originally came from Spain, from south central Spain, and there’s a city in south central Spain called Bailen, which is my maiden name (Baylen), and there was a castle of Bailen, which is now (word unclear), which is owned by the government, and I always jokingly say that I want to go back and claim my room at the castle. . . . The family left during the Spanish Inquisition, went to England and then to Russia when there were a couple of Russian czarinas who were the daughters of British dukes and duchesses, so how the family got from Spain to England to Russia is really interesting, and I’m trying to do a genealogy search, but his end was very difficult and I know the porphyria came from his side of the family.

  My father got sick when I was a teenager; I was fifteen. Diabetes is another thing in the family that I understand is very connected to Ehlers-Danlos syndrome, and many people I speak to who have porphyria are also diabetic, so I’ve been diabetic for about fifteen years and it’s a real juggling act to try to eat enough carbohydrates to stay healthy and to also manage a blood sugar thing. So I swim; I swim every other day; I’m on the treadmill, and that’s the way I manage to keep myself healthy with it, but my father’s illness was really so dreadful. It began when I was fifteen—he died when I was twenty—so for those five years, he was bedridden, he had strokes, he had these amputations, and my mother cared for him.

  Mom,

  Your divorce took a long time.

  You went through several lawyers, dropping one after the other when they couldn’t find the hidden assets you were so adamant existed.

  You went on a quest to find these assets yourself. You sent subpoenas to everyone associated with Dad’s business, and to people you imagined were associated with Dad in some sinister way. You drove to a company in Cuyahoga Falls, Ohio, you thought Dad was funneling money through, a company you said the Ohio Secretary of State didn’t recognize. You wrote, “When I drove by, three people were in the window trying to figure out who I was. I didn’t go inside. They must have called [name redacted] to confirm the name I used, Kimberly Bateman.” You were always reinventing yourself, taking on new names for new tasks. As a child, you gave yourself the middle name you kept for the rest of your life, June.

  You left behind boxes and briefcases full of divorce documents, boxes and briefcases full of petitions for dissolution of marriage and property settlement agreements and memoranda of understanding and angry letters you wrote to your lawyers and letters back from your lawyers saying they could not help you the way that you wanted.

  You kept trying. You knew the money was out there. You were sure you would find the right person to help you find the motherlode.

  DECEMBER 2009

  The line between dream and reality starts to blur.

  One night, I wake Michael at 3 a.m. and tell him, “My nipples are cracked, my breasts are full and they’re on speaker phone.” I tell him the contestants have gone seven rounds already, and Asher hasn’t had his turn. When Asher nurses, I imagine he’s on Top Chef, creating an amazing dish. I know I’m not making sense, but somehow it is all clear in my head. Another night, I tell Michael that my mom had so much love in her car trunk and now I’m channeling it through my breasts. I wonder if this was how my mom felt, trying to assure us her delusions were real. I am comforted by the fact that I can laugh about my strange visions; she never could.

  She keeps entering my dreams:

  • I am in an airport, walking toward a departure gate. My mom is walking in the other direction, on the other side of a rope. Her face has no expression. She walks right past without acknowledging me at all.

  • I am in a theater, possibly for a dress rehearsal of a show. My mom walks up to me, angry, and suddenly we are on the steps of the house in Winnetka, the house I so hated. My mom shoves me down, hard—I can feel this in a visceral way—and lunges toward my neck like a vampire. I wake gasping and shouting, dizzy with adrenaline.

  • I am in our house, although it is not really our house—bigger, more modern. Some of my students are renovating it for us. Suddenly, without any warning, my mother and I shoot up into the air, disoriented, the floor gone, everything askew; I realize that this is some sort of natural disaster, an earthquake, maybe. I yell “Mama!” and cling to her before we start to fall.

  And then it seems my mom comes to visit me for real. I am lying on my right side, nursing Asher, when someone lays a hand on my shoulder. Michael is in the kitchen; my sister is with our dad. No one else is in the house; certainly no one else is in the bedroom. The hand presses down, firm, but loving. My whole body stiffens. I don’t believe in ghosts, but I’m convinced it’s her. I’m not ready for her comfort, her apology. I lift my shoulder to my ear to shrug off the touch. The pressure leaves and I immediately feel awful; I want it, want her, back.

  When I was a little girl, I would prepare myself for the possibility of a ghost or alien visit. “They’re part of the world, just like us,” I would tell myself as I hunkered under my Holly Hobby comforter. I would remind myself to stay calm, to not be afraid, to listen to whatever the ghost or alien had to tell me.

  All that preparation, and I still can’t handle her ghost.

  DESIREE LYON HOWE: So, as an outcome of my own suffering, not just physical suffering but emotional suffering that no one believed me, no one believed I was as ill as I was, I decided that other people needed to meet one another and learn everything we could learn. So, starting with another gentleman whose wife had the same problem, we began the foundation twenty-seven years ago at my kitchen table, and it grew and grew and grew as patients reached out to try to find one another and to learn what they could, and also physicians.

  Mom,

  You became a crusader for divorce reform, renaming yourself A. J. Brand—A. J. for Arlene June; Brand shaved off from Brandeis, itself a fairly recent graft onto the family tree. At the urging of his brother-in-law, Dad had changed his last name from Bransky to Brandeis during the McCarthy era, when having a Russian name was bad for business. He chose Brandeis because he deeply admired Louis Brandeis, plus it let him keep the first few letters of his family name, let his name continue to assert his Jewishness.

  You chose a pseudonym for safety, you said—you were sure if you used your real name for your divorce reform work, Dad’s goons would track you down. Still, you gave a little nod to your married name at the end of one of your mission statements, writing:

  As Supreme Court Justice Louis Brandeis has said, “Sunlight is the best cure for bacteria.” The more sunlight generated in the form of publicity, education and empowerment, the sooner the “bacteria” in a portion of the “divorce system” can be eliminated.

  You created the National Foundation for Financially Abused Women—NOFAW. This always sounded like a donkey braying the words “No fault” to me, NO FAAAAAAWWW, which felt fitting; you never thought anything was your fault. You convinced a local reporter to attend a meeting you held in your living room; he published an article about it in the Winnetka Talk—“Men Get the Gold, Women Get the Shaft”—and soon you were flooded with letters from women experiencing true financial abuse. Soon you had a real organization on your hands.

  The Chicago Tribune took note; Eric Zorn wrote an article published July 23, 1995, that read, in part:

  [W]omen call or write with such stories so consistently that I have come to believe the rough outlines: concealed assets, secret sources of income, false bankruptcies, looted insurance policies, illicit stock transfers—in other words, men playing for keeps, working the system to maximize their gains in divorce and to leave their wives with as little as possible.

  A Winnetka woman who goes by the nom de guerre A. J. Brand has labeled
such shenanigans “financial abuse,” a problem that attracts far less attention and public response than the spousal violence of what we call domestic abuse, but one that Brand believes is just as common and devastating.

  Brand, 56, who is separated from a husband of 28 years whom she accuses of dreadful domestic piracy, began meeting earlier this year with four other middle-age, upper-middle-income women in similar circumstances. They had splintered off a conventional divorce-oriented support group, where the focus was on custody issues that no longer concerned them.

  The informal gatherings at which they swapped stories and strategies caught the attention of Pioneer Press columnist Alan Henry. His write-up inspired several dozen North Shore women who felt they had been victimized in the same way to contact Brand, who in turn incorporated the not-for-profit National Organization for Financially Abused Women.