The Art of Misdiagnosis

by Gayle Brandeis

  All I could say was “What?!”

  “Your name is on the birth certificate,” he told me.

  I was seventeen in 1985, still a few months away from losing my virginity, but the call played with my head in such a way that part of me wondered if maybe I had blocked the whole traumatic episode from my mind. I started to feel a bit loopy, unsure of reality, unsure of memory. But I told the detective no, it must have been another Gayle Brandeis, or someone using a false name. He thanked me for my time and hung up.

  My body has no recollection of giving birth in 1985. I believe my body. My body remembers being sick, pretending to be sick. My body remembers my three pregnancies, the stretch and glow and quease, the twinges and burrito cravings. Let the records burn; the whole history is written in my flesh.

  And the body can have a sick sense of humor. As adults, Elizabeth and I have—weirdly, karmically—switched symptoms.

  She now has colitis; I puke my guts up every few months, preceded by pain worse than labor, still undiagnosed, that often sends me to the ER. A sort of medical Freaky Friday; a dramatic conclusion to our “That’s my house” game.

  Neither of us want to be sick at this point in our lives, but our bodies have another idea entirely—our bodies have found a way to have the last laugh.

  NOVEMBER 30, 2009

  Michael calls Matt to share the news about my mom’s death and ask him to pick up Hannah at school, and we head out to my Honda to drive to Oceanside. I haven’t been outside for a week. The air almost feels like a slap.

  I am so grateful Elizabeth and Michael hadn’t left before the call from the coroner’s office came in. What would it have been like to get the news if I was home alone? Would I have fainted? Would my milk have dried up on the spot?

  It takes us a while to figure out how to attach the base of Asher’s car seat—all of us are fumble-handed, shaky—but we finally cinch the seatbelt through it, then click in the car seat, covered with owls, and strap Asher snugly inside. My mom gave me this car seat a few weeks ago, asking Michael to lug the box that contained it and the matching stroller all the way to the restaurant at the end of the Oceanside pier where we had our family baby shower the same weekend as Dad’s ninetieth birthday party. It feels strange that she bought it for me and the first time we’re using it is to deal with her death.

  Elizabeth and I slip into the backseat on either side of Asher while Michael climbs into the front, our chauffeur. Asher falls asleep quickly on the road; we drape a gauzy receiving blanket over the car seat to keep the sun off his face, but I can’t help but peer under it every few minutes to make sure he’s breathing. Most of the time, my sister and I gaze at each other, our cheeks pressed against the nubby tan cloth of the seat. I feel like I could look into her eyes forever—the sun is turning them green, flecked with gold. She’s the only person who knows exactly how I’m feeling right now, grief strung taut between us, her eyes keeping me rooted, keeping me present.

  “Oh, Gayley,” she says, and our eyes fill with tears. She pulls a packet of tissues from her bag and I notice that beneath where it says “Open,” it says “Soulever” in French—soul ever—and it makes me wonder if it’s a sign that means there’s a soul, something that goes on forever, something I haven’t ever really believed.

  Open. Soul ever.

  I want to believe it now. I want to be open to the possibility, but all I keep thinking is how my mom will never see all the familiar landmarks along this much traveled road again—she’ll never see those terraced vineyards, that curved concrete bridge, the sign for the town named Rainbow. She’ll never see anything.

  We turn onto Highway 76, drive past the fruit stands where you can get twenty avocados for five dollars, past the flower stand where we bought an arrangement shaped like a turkey on our way to her house for Thanksgiving a year ago, not anticipating any of this—the wedding, the baby, her death—past the rolling hills covered with brown grass that looks like velvet, that looks like it would be soft if you were to roll down it, but would really be dry, prickly, would raise welts on my skin, past the fields of strawberries and horse ranches, the road curving gently, a road that often makes Michael car sick, but he is fine now, driving with purpose, driving his sleeping baby, driving two grieving women who don’t know what to say, who keep looking into one another’s eyes, then looking out the window at the trees, the shimmering yellow leaves.

  When we arrive at my dad’s duplex, we find him stoic, philosophical.

  “I couldn’t breathe when you told me,” he says, “but then I sat outside and felt the sun on my face and started to feel better.”

  It’s hard to believe he can be so calm, but we are grateful. He sets the tone for all of us. His apartment feels serene; it doesn’t have the same nervous energy that had filled my house after the call. His complex is built along a ridge and when you look out the living room window, you can see across a valley. So much space; so many houses. People are just going about their normal lives in the world as our lives have entered this weird state of suspended animation. Maybe we’re not the only ones. How many other people out there are mourning their own dead? How many roofs out there shelter someone’s grief? How many neighbors belong to this same strange club we’ve just entered?

  Elizabeth and I search the Yellow Pages for Oceanside funeral homes. There are some hassles involved with having our mom’s body delivered over county lines, and we need to secure a funeral home to receive her. We make some calls, hear recordings along the lines of “Welcome to Happy Endings Funeral Home, a division of Respectful Memorial Corporation.” Death as commodity. “Where is the funeral home from Six Feet Under?” Elizabeth asks and it feels good to have a brief laugh. We decide upon Oceanside Mortuary, which has been around since 1924, and Elizabeth makes the arrangements over the phone.

  “I think we need to eat,” my dad says as the sun starts to lower in the sky, and he’s right; we had forgotten to eat lunch. Did we even eat breakfast? I can’t remember. The day is a blur already. Michael leaves to pick up food from Chin’s, where we had had a raucous family dinner over my dad’s ninetieth birthday weekend last month—a long table full of siblings and cousins and hilarity. My mom had skipped that meal, claiming she was heading toward a diabetic coma; she had reclined on her couch like a dramatic Camille, the back of one hand draped on her forehead. Elizabeth and I had rolled our eyes when we left her house; it had been a relief to enter the dim restaurant, that room full of laughter.

  I never expected my dad to outlive my mom. I’ve been afraid of his death all my life. He was so much older than my mom, so much older than all of my friends’ dads; whenever he went out of town on business, I was scared he had died and my mom just wasn’t sure how to break it to me. When he called at night, I imagined she had hired an impersonator. I didn’t believe he was alive until he walked through the door again.

  I can’t stop wondering how my mom died. Elizabeth wanted to wait until we were all together to give us the details and she hasn’t been ready yet. Pills seem most obvious. Maybe in a different fancy hotel wearing one of her fancy nightgowns, opera playing in the background, a soprano ushering her into oblivion.

  Michael returns with the food and we sit around my dad’s dining table, chewing softly. We stare at the take out cartons of brown rice and bean curd in brown sauce; we stare at the cartons of cashew chicken and shrimp and pea pods; we stare at the smears of sauce on our places, the rice collapsing under the weight of Chinese vegetables—giant slabs of black mushroom, ears of baby corn. Sometimes one of us cries a little bit; sometimes another one does.

  We didn’t think we’d have an appetite, but we do.

  “This feels like sustenance,” my sister says, breaking the silence, and it does; the food feels good, elementally good, like it’s feeding some place deep inside us.

  Still, my dad has trouble finding his mouth with his fork; he opens his mouth like a baby waiting to be fed and the fork misses, jabbing his cheek, sending rice onto his lap. He looks old
er than I can remember seeing him. I am tempted to take his fork from his hand, feed him myself.

  Elizabeth breaks the silence again.

  “She hanged herself,” she says softly, and I can’t take this in, not fully. “Hanged herself” sounds funny to me, wrong; shouldn’t it be “hung”? She “hung herself”? Who decided that “hanged” was better than “hung”? If I use “hung” out loud will it sound ignorant, like I don’t know the proper terminology for my mother’s death?

  “Where?” Michael asks.

  “A parking garage in Pasadena,” she says. Pasadena, just like Michael had imagined. It happened around 4:50 yesterday afternoon, just when I was ushering Michael’s sister and nephews out the door. A worker found her this morning.

  The wordplay in my head—hanged, hung, hanged, hung—keeps the feelings at bay for a moment, but now they start to rise in my throat, along with a clump of soy-soaked rice. Hanging is so much more brutal, more violent, than anything I could have imagined. I swallow hard, keenly aware of my own neck, the breath moving inside.

  ARLENE: Well, Rochelle, at the age of sixty-four, when she was having surgery, and after my daughter was diagnosed with porphyria, I asked her doctor to test [Rochelle] for porphyria and, sure enough, she had a positive for hereditary corproporphyria. Well, I was told that’s the rarest of the rare porphyrias, and I can’t help but wonder if there are a lot of people in psychiatric wards who have breakdowns and then they’re fine, they don’t respond to traditional treatment; I can’t help but think that this is more common than we know, and I think any time they have a psychiatric patient, particularly if they also have abdominal pain, if there’s also regurgitation, if there’s also some kind of skin rash, these should be red flags to test for porphyria. How different her life would have been if we had a correct diagnosis. All of the worst medications that can be given to someone with porphyria—she was given barbiturates, tranquilizers, lithium, all of which made her very nauseated—they exacerbated the condition; it really needs to be looked at.

  I’m sure there are, I mean, there are a million people who are being treated for mental problems. She’s not the only one. She’s not the only one who has this, and it’s my understanding that my father had a sister who was dead long before I was born who had the same problem that she did. And, um, so it’s a real important message, and psychiatrists really have to read up on this, do the twenty-minute test.

  Every time she went on a diet, she seemed to have one of these psychotic episodes (crying), and carbohydrates are such an important treatment in porphyria (wipes away tears). It’s really so simple and so dramatically important.

  Mom,

  Your delusional episodes and my vomiting episodes were pretty similar in that I was never prepared for either. They took me by surprise every time. They shouldn’t have; they happened on a regular basis—sometimes months would go by, sometimes even a full year—but they kept coming back and I kept getting caught off guard. Neither of us had been diagnosed, so there were no labels to anchor us.

  Here are some things, over the course of nineteen years, doctors thought might be causing my vomiting episodes:

  • Porphyria

  • Abdominal migraines

  • Cyclical vomiting syndrome

  • Pseudo-obstructive motility disorder

  Here are some things, over the course of sixteen years, the family thought might be causing your delusional episodes:

  • Porphyria

  • Schizophrenia

  • Borderline personality disorder

  • Mismanaged diabetes

  • A lesion on your brain

  Between episodes, I would let myself get lulled into a false sense that everything was okay, that I was healthy, that you were sane, and then—BLAM!—back into the muck.

  NOVEMBER 30–DECEMBER 1, 2009

  Elizabeth decides to sleep at our dad’s place to keep him company. I want to stay, too, but we didn’t bring enough diapers or clothes or toiletries for an extended stay. When Michael and Asher and I are halfway home, Father Paschal calls and serenades me with a heavily accented rendition of Michael Jackson’s “You Are Not Alone.” Michael Jackson died earlier this year, too. He and my mom were both utterly alone at the end. I press my forehead to the backseat window and watch the dark world stream by.

  Elizabeth calls the next day and suggests I get in touch with my midwife to ask about remedies I might take to help keep my milk production up in the midst of mourning. Karen recommends agrimony and Rescue Remedy for shock, aconite and ignatia for grief. Our friends Jenn and Nancy pick up the tinctures and homeopathic pellets, along with white chestnut to help stanch unwanted thoughts and a pear tree we can plant with the placenta when the time is right. Nancy drapes a shawl embossed with a picture of Kwan Yin, the Bodhisattva of compassion, around my shoulders as I cry and cry and cry against her chest. Jenn holds Asher, looks at his wise, direct, gaze, and says, “He was brought here to be a healer.” I don’t want him to feel he has to be his mother’s healer his whole life, but for now, I’ll take it.

  My mom’s body has been delivered to Oceanside Mortuary. My dad and Elizabeth go to view her. They stand in the doorway, peek into the room the way you would if someone was sleeping. They had been told she had marks on her face—the “marbling” that happens with a hanging—and don’t want to get too close.

  The word “marbling” makes me think of my mom’s dad; he was a butcher who killed chickens in the back of his little market on State Street in Chicago. My mom watched him hold their feathery bodies and slit their throats, bright blood gushing to the floor. He didn’t kill cows, but she had been taken to the stockyards on a field trip, her class piled into buses and led single file into the slaughter house, the cows shuffling and mooing single file, too, until the blade came down and their heads clunked to the floor. They weren’t cows anymore—just bodies, just meat, ready to skin and send to her father’s market, ready to be cut into steaks, ground into hamburger, their rumps carried in a cardboard box on her father’s shoulder on the train so her mother could roast them and bring them to the table each Sunday; bodies that hung in her father’s cold-storage room, their glistening fat streaked with blue, marbling their flesh.

  It feels funny to not be at the mortuary with my dad and sister, but it feels good to be home. My breasts keep having chills through them, like I have a fever, but only in that part of my body. My body wants to be still, to sit with my baby in my arms and shiver and be still.

  When Elizabeth calls after they get back to our dad’s place, she tells me our mom looked peaceful, a blanket pulled up to her chin. She says it was a relief to see how peaceful she looked, a relief to confirm it was her. Neither she or our dad had truly believed it until they saw her in person.

  I am on the phone much of the day.

  Friends and colleagues call to congratulate me on the baby, and I find myself blurting out “My mom hanged herself!” or “My mom killed herself!,” shocking them into speechlessness. I have no filter. I feel as if I have no skin. I am a flayed creature, one raw, exposed nerve.

  My first husband, Matt, calls. He says—he urges—that none of us should feel guilty or feel there was something else we could have done. “Her modus operandi was making people feel guilty,” he says. “That should die with her.” I am flooded with gratitude. He knows me more than I had given him credit for. Of course he does. We had once loved one another madly.

  His mom, Patricia, calls a bit later. “I don’t know how to comfort you,” she says, “but I hope you can find some peace in the fact that she’s found peace.”

  Michael’s mother hasn’t said a word to me yet, hasn’t acknowledged my mom’s death. She won’t for many weeks, even though we’ll see her several times.

  Every time the phone rings the rest of the day, Michael answers first so I’ll have a chance to collect myself before I speak.

  After night falls and the calls die down, Michael turns on So You Think You Can Dance, one of our favorite TV sho
ws, so we can distract ourselves, numb ourselves out. In one duet, a woman dances a smooth waltz with a long, flowing blue scarf around her neck. I think of all the scarves my mom wore—short ones that looked like tourniquets; long ones that draped down over her arty Chico’s outfits. She never went out without a scarf, self-conscious about her aging neck. The only time her neck was bare in public was when she went swimming. Before she took to wearing scarves, she would often cut her neck out of photos of our visits together before she sent them to me. Sometimes she’d cut out her whole body; she’d just be a head floating next to us on the print.

  I start to weep, to hyperventilate. Michael wraps his arms around me. The dance music surges through the air like a dramatic soundtrack, accompanied by the heartbeat creak of Asher’s baby swing.

  “Do you think she did it with a scarf?” I ask him.

  “I was wondering the same thing,” he says.

  I watch the dancer on TV, scarf floating behind her like a wing, and picture my mom wrapping a scarf around her neck for a final, fatal time.

  DR. NEVILLE PIMSTONE, gastroenterologist: And a third attack symptom which can occur is disordered brain function, which can lead to a form which has been known as the madness of King George, possibly Vincent van Gogh.

  DESIREE LYON HOWE, founder/executive director, American Porphyria Foundation: Historians feel that madness of King George due to porphyria—and I’ll digress a minute; the reason that they feel that King George had porphyria is because of this sort of purpley red urine, which can happen with someone who has a porphyria attack, because he had these periods of mania that would come and go. . . . His royal physicians were supposed to put down everything in a report about the quote unquote “royal body,” which they did, and many years later, as these were being investigated, uh, and as many other family members were discovered to have had the disease, historians put two and two together and feel that he had porphyria. Now, how that has affected and impacted our own country is that during the Revolutionary War, King George would have these attacks intermittently and Parliament would try very hard to get him to concentrate and increase the troops and increase the monies for these colonists, but he would listen and then go into another attack and he would not allow them to move forward, or he would be sick at the time, and one of the things that he has actually said was that the great and mighty British Empire could not possibly be beaten by this group of ill-trained militia, and really, that was probably true, but since they couldn’t get him to be well long enough, it greatly impacted what happened to our country.