The Art of Misdiagnosis Read online

  She had other complaints: the computer in the clubhouse of her complex was not secure; my dad somehow got his name onto her Internet account (Cox Communications denied this when she called); the producers she had hired from the local public television station were dropping The Art of Misdiagnosis from their slate. She showed Michael the e-mail in question; all he saw was an exchange where she had accused them of dropping the project and they had replied by saying they had no idea what she was talking about.

  In the morning, her accusations had become worse. She told Michael she was being drugged in her house, that she would fall asleep in weird places and wake up feeling disoriented and dizzy. She told him that she saw someone in the house next door walking around a dark room with a flashlight, sure he was spying on her. When she called the neighbor, he told her he was looking for a cricket, but she didn’t believe him. She thought her neighbor on the other side had been drilling through her floor to pump gas into her home. She thought the furnace was spewing gas.

  No wonder she didn’t want to sleep there.

  “What should we do?” I ask, queasy. Her delusions haven’t been this bad in years, if ever.

  “The main thing you need to do right now is take care of yourself,” he says. “You’re sure she’s gone?”

  “She went to her class in Carlsbad.” I try to take a deep breath, but my lungs are squashed by my enormous belly.

  “Good,” he says. “Don’t let her come back.”

  Mom,

  I guess we need to go back to the beginning—all the way back to birth.

  The story of your psychosis begins and ends with birth.

  Not your own birth at Chicago’s Norwegian American Hospital in 1939, where you were the youngest of ten kids born to Gertrude and Benjamin Baylen—only the last two born in a hospital, where your mom was happy to be knocked unconscious.

  Not my birth at Chicago’s Michael Reese Hospital in 1968, when new mothers were fed steak and lobster dinners with champagne, the same hospital where Dad was born in 1919. You used to say you would rather give birth than go to the dentist; you were so lucky to have just a four-hour labor with me, a two-hour labor with Elizabeth four years later. You even had an orgasm pushing me out into the world; as uncomfortable as it was to hear you say “orgasm,” I liked knowing this, liked knowing I was born in a rush of ecstasy, until I realized this set me up to disappoint you the rest of your life.

  No—your psychosis was framed, strangely enough, by my giving birth.

  Not the first time, in 1990, when my midwife laid me in the back of her van like a roll of carpet and whisked me to the hospital after she couldn’t find the baby’s heartbeat. I was twenty-two, had learned I was pregnant while I was in Bali for my study abroad my final semester of college. You weren’t surprised when I called to tell you the news—your sister, Rochelle, the one who couldn’t care for herself, the one who still lived in your childhood house with your equally low-functioning brother, Don, had dreamed I was pregnant the night before. You were still living in the Chicago area, two thousand miles away from Riverside, California; you fainted in the bathroom when you learned about the hospital transfer, knocking Dad over, pinning him against the tub.

  It killed you to not be in the hospital with me. We spent a lot of time together in hospitals, the two of us.

  It turned out the cord had been wrapped around the baby’s head three times, then once under his arm and around his neck again, leading to an emergency C-section.

  Hard not to think of you now. Cords. Necks.

  You never forgave me for asking you to wait two weeks to come meet your first grandchild; this had been recommended by our childbirth instructor, who said it was good to give new parents time to bond with the baby before having out of town visitors. You were so jealous of Matt’s parents, who lived in Southern California and got to meet Arin his first day in the world. My father-in-law had photos developed at a one-hour place and sent them to you overnight, but that was no substitute for holding the baby in your arms.

  Three years later, you booked a flight as soon as you heard I had given birth to Hannah. “You’re not making me wait two weeks this time,” you warned. You showed up without Dad, which seemed weird. Things only got weirder from there.

  NOVEMBER 21, 2009

  Aside from a few frenzied phone calls, my mom leaves me alone the rest of the week. I start to feel as if I can breathe more freely, as if I can focus on work, as if I’m not in anyone’s crosshairs. And then the doorbell rings late Saturday afternoon.

  “Oh, hi, Nana,” I hear Hannah say, and I feel as if I’ve fallen into a bad recurring dream. I walk out from the office to find my mom, chaise lounge cushion once again in tow. This time, she looks even more agitated. She is shaking, hyperventilating. Her voice is high pitched, hysterical—I can’t even tell what she’s saying, she’s speaking so fast. Hannah slips away and locks herself in her room. I wish I could join her.

  “Mom,” I start. “Are you okay?”

  “Of course I’m not okay!” she shrieks, lunging toward me. “What do you think? This is the most difficult time of my life!” A sentence she likes to repeat; she gloms on to certain sentences and plays them like a DJ sample.

  Michael steps between us with his lanky body, his mop of light brown curls. “Why don’t we go for a walk?” he tells her, and ushers her back outside. He looks over his shoulder at me and I mouth a silent “Thank you.”

  As soon as the door closes behind them, I try to reach my sister. I call her cell and home number numerous times. I leave several text messages—“SOS,” “Help!,” “Mom is the worst I’ve ever seen her!”—and she doesn’t respond. Elizabeth is a midwife in Toronto; maybe she’s at a birth. She’s scheduled to fly out next week to assist me in labor. I finally call her fifteen-year-old daughter and ask if she knows how to reach her mom’s pager. Once I punch in that number, Elizabeth calls back right away. She’s at a party. I can hear music and chatter in the background. It feels disorienting to know people are having fun when I’m stuck inside a horror movie.

  “I don’t know what to do!” My voice is almost as hysterical as our mom’s had been. “What should I do?”

  “Take a deep breath,” she tells me, her voice immediately soothing over the phone. She sounds concerned, but not overly so; she sounds as if she’s had some wine. I start to wonder if I’m overreacting. “Don’t let her rattle you, sweetie,” she says. “And keep me posted. I love you and that baby so much.”

  I take some deep breaths. I tell myself to detach, to let go. To not clench myself in fear. It will be okay, I tell myself; it will be okay. When I touch my belly, the baby pushes back, as if in reassurance.

  By the time my mom and Michael return, I’m feeling less doomed. My mom looks more subdued, herself, although Michael looks shaken.

  “We need to find her a safe house,” he says.

  “A safe house?” I whisper after my mom closes herself in the bathroom.

  “She’s in bad shape,” he whispers back, “and she thinks she’s being abused. If she goes to a safe house, maybe someone will figure out what’s really going on and she can get the help she needs.”

  “Brilliant.” I give him a kiss, then start to research safe houses online.

  My mom comes into the office and tosses a printout on my desk. It’s the Diagnosis column from the New York Times, one from late last month, with the title “Perplexing Pain.”

  “Your father is behind this.” She leans against the doorway, chin raised, like some thug in a ’50s movie.

  If my dad could pull strings with the New York Times, I want to tell her, I would have been reviewed by them by now. Instead, I just say, “What do you mean?”

  “Look at the name of her book.” I flip to the bio on the last page; the italicized print reads “Lisa Sanders is the author of ‘Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis.’”

  “How could Dad possibly be behind this?” I ask.

  “He gave her my
title,” she says, her voice edging higher. “The Art of Diagnosis, The Art of Misdiagnosis. You think that’s a coincidence?!”

  “Mom.” I try to keep my voice calm. “You know how slow the publishing industry is. Books take a year to be published, sometimes more. She had the title long before you did.”

  “Titles can be changed in an instant,” my mom said. “And look—this is all about porphyria!”

  Now this is unfortunate. Porphyria is one of the two diseases my mom highlights in The Art of Misdiagnosis. One of the two diseases she feels a proprietary claim over; she had wanted to be porphyria’s herald, the one to usher it into the public eye.

  I had a borderline positive test for porphyria when I was nineteen. After feeling pretty good for a few years following an early teenage illness, I was beset by occasional but intense stomach pain my first semester at college. A doctor asked my mom whether we had looked into the possibility of porphyria—she glommed on to this and dragged me to a hospital in Connecticut that specialized in the metabolic disorder during my summer break.

  I found porphyria quite intriguing—the name come from porphyra, which means “purple pigment,” my favorite color, and the illness is responsible for all sorts of strange phenomena: purple pee, vampirism, werewolfism, the madness of King George. My stomach pains were tame as far as porphyria symptoms went, but perhaps some of the weirdness would rub off on me. At the very least, it would be a cool disease to tell people about, much less embarrassing than the Crohn’s disease I had been diagnosed with a few years earlier. The tests at the hospital weren’t conclusive, but the borderline positive was enough for my mom; she grabbed onto the diagnosis and ran with it, and I accepted it by default. I accepted the fact that I should eat a high carbohydrate diet (the main way to manage porphyria), that I should avoid certain medications, that this was the illness that defined me now.

  I don’t remember much about the trip, just that everyone at the hospital was extra solicitous. My mom had taken it upon herself to circulate an article about me to all the doctors and nurses on my team; it was about me being named a “Steward of Liberty for the next 100 years” the previous fall, when one of my essays had been installed in the centennial time capsule of the Statue of Liberty. My essay was about the human spirit; it rhapsodized about how even if someone is imprisoned, their imagination can always run free.

  “I want them to know who you are,” my mom said. “They’re not going to call you crazy here.”

  Of course I couldn’t tell the doctors my real story, especially not once they started treating me like a famous writer. I hadn’t told anyone my real story yet, although my doctors in Chicago had guessed at it, and my mom had accused them of malpractice as a result. Some steward of liberty I was—not even free enough to share my own truth.

  I try to read the Times article, but my eyes keep returning to the title: “Perplexing Pain.” Perfect words for this moment.

  “Your dad is behind this,” she says again. “He wants to steal my thunder. He wants everyone to know about porphyria so my movie will be moot!”

  Over the years, I’ve been tested for porphyria again—tests where I had to gather twenty-four hours’ worth of urine in a big brown jug that sat in a tub of ice in the corner of the bathroom—and it’s always come back negative. My mom insisted these tests were notoriously inaccurate. She finally paid for me to have an expensive new blood test, a test that was supposed to be much more precise and definitive—it came back negative, too. Porphyria: yet another misdiagnosis. My mom refused to believe this. She thought I was lying. She even called my doctor; when he confirmed it, she didn’t believe him, either. She thought my dad had paid him off.

  I was a bit sad to let go of the porphyria diagnosis; it seemed to explain so much. Porphyria could be triggered by hormonal changes—I had imagined that’s why I had gotten sick when I neared puberty; that’s why I had gotten sick when I took birth control pills in college; that could be why my mom’s delusions started around the time she hit menopause. Porphyria can cause “intermittent psychotic episodes”—it says so right on the back of her DVD cover. Without porphyria, the answers are not so simple.

  “Mom,” I say, “sometimes there are just coincidences. Remember when I was writing Self Storage and I found out Michael Cunningham had just published a novel based on Leaves of Grass?” I adore Michael Cunningham’s work and worried my own Whitman-inspired novel would seem derivative, would never hold a candle to his. “Or when my working title for Fruitflesh was Writing from the Body, and a book called Writing from the Body came out just before I finished my first draft?”

  My mom gives a hesitant nod.

  “I was devastated both times, but then I realized there was still room for my projects, my voice. There’s still room for yours, too.”

  My mom actually seems to consider this. For a moment, she looks thoughtful; she looks more like her normal self. “There is the collective unconscious . . .” she starts, and it sounds so lucid, so intelligent, I start to hope she can pull out of this. Then her face clouds again. “But your father is working to get this woman a show on PBS! They’ll never air my film now!”

  “And you know this how?” I ask, heart deflating.

  “Why do you never support me?” she cries. “You and your sister call yourselves feminists but you never support your own mother!”

  “Mom.” I slump back in my desk chair, all my energy suddenly gone. “What do you want me to say?”

  “I want you to say you believe me!” she shouts.

  “I’m sorry,” I tell her. She lunges forward and for a moment, I fear she’s going to strike me. My belly tightens protectively.

  “I have to get out of here,” she says, walking past me.

  “You don’t need to do that,” I say, even though I want nothing more than for her to leave.

  “Yes I do,” she says, now in the doorway on the other side of the office. “I need to pick up some vitamins; I need to get something to eat. My blood sugar is through the roof.” She gives me a look saying that if she goes into a diabetic coma, it will be all my fault.

  Michael offers to take my mom on some errands; after they leave, I resume my search for safe houses in the area. My own house feels much safer without her in it. Hannah even ventures out of her room.

  “Are you okay?” she asks. I nod and smile, grateful; she gives me a little hug and retreats to the kitchen.

  None of the safe houses I call have any beds available, and when I explain my mom’s situation, most of them tell me they are not the right place for her, anyway.

  “We are here for women who need to get out of abusive situations,” one operator tells me. “Your mom needs a hospital.”

  The problem is, she would never go to a hospital voluntarily. At least not for this. I’m starting to realize it’s not fair to ask a safe house to do something I haven’t had the guts to do myself over the last sixteen years—force her to get help. Every time my family has taken steps in that direction, it’s blown up in our faces.

  How can you get help for someone who doesn’t think she needs it? What house is safe for someone whose brain has turned against itself?

  When I hear the front door open, I brace myself, but Michael is alone.

  “Where is she?” I ask when he walks into the office.

  “She doesn’t want you to know,” he says.

  “What does she think I could do to her?” I look down at my huge belly. I can barely get out of a chair.

  “I took her to the Best Western in Loma Linda,” he says, “but she was worried Middle Eastern men were watching her when she checked in.”

  “So she might come back?” I ask, feeling a wave of panic along with a wave of embarrassment over her recent fear of Middle Eastern men. I know it’s related to her trip to Egypt three years ago, but it seems like a strange lapse of her normally progressive values.

  “I don’t think so,” he says. “Her car is still here, and she’s pretty mad at you.”

  I can�
�t help it; I feel guilty. I wonder what I could have done, could have said differently. It always comes back to this: me beating myself up.

  Michael tells me about their conversation on their walk and in the car. She had gone to my dad’s house this morning to copy some things from his computer and return his cell phone, which she had borrowed. When he offered her a drink, she would only take a sealed one. He poisoned her anyway, she said; he sprayed her with some sort of device.

  “She kept saying she needs to get away,” he tells me. “She needs to escape. She can’t believe Buzz followed her out here to California. She wants to get away from him.” My dad moved here a few years after she did, after he finally retired from advertising at the age of eighty-five. He lives three miles from her in Oceanside. When she isn’t having one of her episodes, they are best friends and see each other almost every day.

  “She thinks if she finds a safe house, she’ll have time to pull her evidence together,” he says. “Time to make a case.”

  Her “evidence” will never make sense to anyone but herself. The notes she’s thrown at me over the years don’t incriminate anyone but her.

  “She talked a lot about you and Elizabeth, too.” He looks at me to gauge whether I want to hear this; I nod for him to go ahead. “She doesn’t understand how she could have sacrificed everything for the two of you and you still don’t believe her.”

  This isn’t new information. I’ve heard it many times over. She said as much before she left. Still, somehow, it stings. I’m such a people pleaser, I even want to please my delusional mother. Someone who could never be pleased.