The Art of Misdiagnosis

by Gayle Brandeis

  124. Describe How Injury Occurred (Events which resulted in injury)

  HANGING BY ELECTRIC CORD FROM PIPE

  The words “cord” and “pipe” make the act feel more stark. More real. The syllables lodge themselves deep in my body.

  125. Location of Injury (street and number, or location, and city and ZIP)

  1000 EL CENTRO STREET, SOUTH PASADENA, CA 91030

  We knew she had hanged herself in a random parking garage, but until now had no idea what sort of establishment the garage served—a medical building, perhaps a restaurant. Now, an actual address. I plug it into my computer, and the result forces a sharp laugh from my lungs, startling Asher off my breast.

  Golden Oaks Luxury Apartments.

  I find myself strangely comforted as I click around the website of Golden Oaks, which turns out to be apartments for seniors; this is so much better, more fitting, than if the address had revealed a Walmart or a Starbucks or some generic office building.

  My mom had been on a delusional quest for gold, for luxury, for the last sixteen years. It appears she had finally found it.

  ARLENE: It’s just remarkable that there hasn’t been more stressing on vitamin C. I mean certainly Dr. Pinnell told me to take it when I had my genetic test, my positive test for vascular Ehlers-Danlos syndrome, and it just made a world of difference in the way I feel. So each of these vital, healthy men died of what was thought to be sudden cardiac death. Now, there are 310,000 sudden cardiac deaths in America every year. I can’t believe that many of them aren’t connected to vascular EDS. So vitamin C is such a simple thing to take and especially after reading Linus Pauling’s book, I am more and more convinced that my own personal experience was spot-on with my bruisability just almost disappearing. So it’s an important message to get out there, and I mean, this is my mission in making this video, this documentary. I think it has the potential to save lives and to stop a lot of misdiagnoses that go on in this country and around the world. So 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, that there are such simple things to do to manage these problems. High carbohydrates—not a high diet, I mean, you don’t have to get obese.

  Mom,

  You never did give an Artful Conversations talk, but you recycled the name for your nascent author escort service. After I told you that people were employed to drive authors to and from events on their book tours, that Michael Chabon’s mom had driven me around on one of my tours in the Bay Area, you wanted in on the action.

  You saw yourself as a book publicist long before I had a book out. As I was digging through your papers, I found a letter you had sent to Golden Books, along with a collection of my juvenilia, when I was eight years old. “You would be wise to snatch up this young talent,” you trumpeted. An editor had responded, thanking you for the submission, saying it wasn’t right for Golden Books, but she hoped I would keep writing—my first positive rejection letter (the likes of which I would be heartened by a couple of decades later when I started to send my work out, myself). You, undeterred, wrote back to the editor, warning her in playful yet firm language that one day she would regret her decision.

  As much as I appreciated your support, your publicity schemes embarrassed me over the years. I cringe to think of how the New York Times or the Washington Post must have reacted to your passionate and creatively punctuated letters, urging them to review me or excoriating them for not doing so. I doubt I ever would have gotten any closer to Oprah just because you sent numerous entreaties on my behalf. I would tell you this was the job for professionals, that I would be taken less seriously when you tried to promote me, and you would bristle, offended I considered your efforts amateurish. “Besides,” you would say, “sometimes personal is better than professional. It will stand out more.” That’s exactly what I was afraid of.

  When my novel Self Storage came out in hardcover, the dust jacket featured a red bra stuffed inside a mason jar. You jumped on that immediately, purchasing a red bra (slightly more orange than the one in the image), folding it into a mason jar, and affixing the Starbucks logo to the side with scotch tape before sending it to their corporate office. “Books in Starbucks do well,” you said. “They could give bras away with it as a promotion.” My head spun trying to imagine the logistics of such a campaign, but you weren’t tied to the mundanities of reality, even when you weren’t having one of your episodes. I also found copies of letters you had written to Steven Spielberg and Nora Ephron, pitching my first book, Fruitflesh: Seeds of Inspiration for Women Who Write, as the next animated hit. Somehow you thought that a book full of writing exercises would make a great cartoon. You asked Steven and Nora to imagine fruits “sensually interacting with one another.” I wish I could have stepped inside your brain to see what you had been visualizing.

  Some of your publicity ideas did bear fruit. You started a book club at the Oceanside Museum of Art, primarily to create a venue to promote my novels. You made calls that led to both reviews and interviews in the San Diego area media, as well as speaking engagements in libraries and at political functions. And you beamed at all of these events, ever the proud mama, unless I said something you weren’t happy with, and then I had to try not to be thrown off by the daggers shooting from your eyes.

  After serving as the fundraising chair for the local Democratic club, you decided to turn fundraising into a way to make money, yourself. You pictured a line of nutritional bars that could be sold door to door to raise money for different organizations, a healthy alternative to Girl Scout cookies and Sees chocolates.

  You used swaths of your “Art of Misdiagnosis” triptych paintings as background for the labels you had mocked up; you imagined you could use these nutritional bars to raise awareness and money for both the American Porphyria Foundation and the Ehlers-Danlos National Foundation, among other organizations. You toured different Southern California factories that manufactured nutritional bars—I helped you taste-test some of them and was especially fond of a raw bar with a cashew and sesame base (I can still taste it now). You never found the perfect product, but you kept looking.

  You were searching in other ways, too. You got involved in Kabbalah around this time, and it was like a dose of magic, like you had finally found the medicine you needed—the deepest, most profound medicine. You started to look at yourself and others with more compassion. You started trying to let go of old hurts, to let go of ego. You sometimes proselytized a bit, sometimes got a little overbearing with your spirit talk, but we didn’t mind—it was vastly preferable to your usual harangues and accusations. This is it, we thought. She’s better now. She found the cure.

  How easily we fooled ourselves.

  You just couldn’t let well enough be, a common theme. After your frenzy of abstract painting, you weren’t able to let that be its own gift, to be grateful for the creative outpouring. It had to be recognized, monetized. You contacted the curator at the Museum of Contemporary Art in Chicago where you had been a docent and suggested they mount a “40 Day Retrospective” of your work. It wasn’t enough that you had reconnected with your estranged family through your paintings—in your heart, if not in the world. It wasn’t enough that you discovered you could paint. You wanted to be celebrated as the next Grandma Moses.

  The same thing happened with Kabbalah. The sense of peace and spiritual connection it offered wasn’t enough. You set up a meeting with the head of the Kabbalah Centre Los Angeles, where Madonna studied, and proposed that you and he work together to create Kabbalah Bars as an off-shoot of Good for You Nutrition. When the director wasn’t amenable to this idea, you soured on Kabbalah, itself. You stopped your exploration, your earnest quest for knowledge and growth.

  Soon, you were convinced Dad was trying to sabotage your business. When you visited the company that was going to help you with distribution, you thought you saw the name of one of Dad’s former business associates on the visit
or list; you were sure Dad had sent him to undermine you. Then you were sure the business partner you had enlisted was trying to undermine you, too. It wasn’t long before you washed your hands of the whole business. “‘Good for You’?” you’d mutter. “More like ‘Good for Nothing.’”

  JANUARY, 2010–MARCH 15, 2010

  Michael and I have been looking at real estate on and off over the past year; we took a break right before our wedding and haven’t resumed until now. The cat pee smell of the house is getting to us again, plus the dishwasher makes the whole house shake, and the sewer has a nasty habit of flooding the side yard and sometimes bubbling up the shower drain. Plus, grief has become synonymous with this address, has seeped into the very walls of the place. post-traumatic torpor has led us to neglect the back yard, and the weeds have grown taller than our heads. It is remarkable to watch nature take over, to see what entropy spawns, life growing lush and unchecked around us as we sit, numb, on the couch, but we receive a nasty letter from the “Buena Vista Beautification Committee”—likely a solitary neighbor hiding under the first person plural—threatening to report us to the city if we don’t mow everything down.

  We decide to look in Riverside after Matt insists Hannah move in with him so he can oversee her shift to a new school—a request that guts me; haven’t I lost enough? Michael works in Riverside; as much as we like Redlands, nothing is keeping us here now, and life would be easier for Michael without a long commute. The night we look at an eccentric mountain lodge plunked into the middle of town, a place at the furthest reaches of our budget, a place with an abundance of fireplaces and a sunken living room and funky photo murals on several walls, I dream my mom left a note in its dated ’80s kitchen. I read her familiar handwriting as I lean against the pine cabinets, the white tile countertop dotted with brown flowers.

  “That was not me,” the letter says. “The woman who killed herself—that was not the real me.”

  I can hear my mom speaking in my head as I read, and it is the first time I’ve heard her true voice—calm, reassuring, not strained with paranoia—in a long, long while.

  I wake knowing we need to buy the house.

  Michael and Asher and I continue to live in Redlands while we renovate the new place. One day when Hannah is over, a little before Asher turns four months old, we get a call from Riverside Community Hospital. Michael’s mom Jette has been brought to the ER, but they can’t tell us her condition over the phone. Michael doesn’t take the news seriously—his mom often ends up in the ER seeking pain medication—but Hannah knows something is wrong, very wrong. Hannah has really stepped up since my mom’s death; she’s been very kind, very helpful, for which I’m deeply grateful.

  “You should go,” she tells Michael.

  And when he does go and finds his mom on life support, Hannah suggests we go there, too. She and I sit outside the ER on a concrete bench; Hannah stays with her baby brother whenever I go inside to check on Michael, who is teary and shaken. I find myself trying to not breathe too deeply, not wanting to take hospital air into my lungs. I have become a germaphobe since my mom’s death—every time we go out into the world, I am afraid someone will breathe a virus or bacteria onto Asher his new immune system won’t be able to handle.

  And it’s not just germs—I’ve started to see catastrophe everywhere. Every time I walk through a doorway, I worry I’ll trip and crack Asher’s skull like an eggshell against the doorframe. Intrusive thoughts like “These are the stairs I’ll fall down while I’m holding him and he’ll break his neck” and “This is the tub he’ll drown in” barrel into my head multiple times a day. I try to not see them as prophesies. I try to stay present, to just enjoy Asher’s babyhood, but the whole world feels rife with potential peril.

  I recently told a friend about these obsessive thoughts, scared she’d think I was losing my mind—I was starting to worry about my mental health, myself—but she said, “It’s normal. It’s normal to be hyper-vigilant when you’ve been sideswiped.” It gives me a measure of relief to know this is a common reaction to unexpected loss. And now Michael and his sister, who drives out from LA, make the decision to turn off Jette’s life support, and we have yet another unexpected loss to face.

  GAYLE BRANDEIS, Daughter/Author.

  [Gayle is sitting in front of The Art of Misdiagnosis, panel 3, looking puffy with pregnancy—even her neck looks puffy—wearing a dusky lavender tunic.]

  GAYLE: Well, my mom had such a profound influence on me when I was young, as a writer and as a budding activist, because I would see her write what she called poison-pen letters if she was ever upset about anything, and this could be something minor, such as, you know, a hair in her soup. I don’t know if that ever actually happened, but something along those lines. She would write to the restaurant and often get a free meal in the process, and so I would see that if you’re upset about something, you raise your voice, you use your voice, and you let them know that this thing upset you. If you see injustice you raise your voice, you let them know; if you see something that needs to change . . . Um, she was involved in the safety council at my elementary school and she was able to (clears throat) excuse me, get a stop light put into a dangerous intersection near my school where there had been a lot of accidents, and through a letter-writing campaign, she and other mothers were able to make it a safer intersection, and they also were able to, at my mom’s organization, get guns and ammunition out of our local Kmart, and this was decades before Michael Moore did that in his film Bowling for Columbine, and I watched her do these things and could see how a singular voice could make a real difference in the world and how the written word could make a real difference, and how when you join voices together, it can make even more of a difference.

  Mom,

  I don’t know where all your ambition and creativity came from. You grew up in a home where art wasn’t valued, where education wasn’t valued, where your family would eat the huge Sunday dinners your mom had prepared—pot roast your father had butchered in his little grocery store, kasha, solid Jewish food—mostly in silence.

  I was groomed for a creative life, but you—you had to build it all from scratch. You were a self-made woman, and you made and remade yourself over and over again.

  Another thing you pursued later in life was a senior modeling career. You had been a model when you were young, wearing structured dresses with cinched belts that accentuated the twenty-three-inch waist you had been so proud of when you were a model, your “little pinched-in waist,” as you liked to call it. You walked around a special parlor at Blums Vogue, displaying couture for women who could afford the personal shopping service; you used the posture you had learned at the Patricia Stevens Finishing School in downtown Chicago, where you strode across rooms with books stacked on your head, where you learned to fence. I’m not sure how fencing is supposed to “finish” a girl, but I loved seeing the silver foil you kept in the coat closet, its slender blade speaking of your youth, its jab of promise.

  You never let go of that desire to be seen, admired, exalted for your bearing and beauty. After you died, I found a letter you had written to Ronald Lauder, chairman of Clinique Labs, suggesting he use you in an advertising campaign:

  Dear Mr. Lauder,

  I’d like to approach you with the idea of being your Clinique “dramatically different moisturizing lotion” spokesperson.

  I have used that product somewhere between 32 and 35 years. I’m not sure when it first came on the market, but I’ve been using it always since its availability.

  An ad campaign “65 and Glowing” for print and commercials would be wonderful, using me, of course.

  People always comment on my beautiful skin, my best feature. I credit genetics and your product.

  I’ve included my model photographs, which have darkened some in the printing process. My true skin tones are lighter and milkier.

  I hope you’ll consider this suggestion.

  Sincerely,

  Arlene Baylen Brandeis

/>   The photographs you had prepared that year to go after senior modeling and Central Casting extras jobs show you in various outfits, in various stilted poses. In your head shot on the front of the composite, you appear to be smirking; in one of three pictures on the back, you wear a red short-sleeved turtleneck, the one from the coroner’s bag, and are laughing uncomfortably; in another, you stand at an angle to the camera, a black scarf knotted around your neck, a loop of pearls arcing between it and your asymmetrical black blouse. You seem to be touching your bottom with your right hand, an unconscious movement you often performed as you walked, as if checking your panty line. You somehow look most comfortable in the picture in the center, where you’re dressed as the lady in waiting to the Spanish queen in the San Diego Opera production of Don Carlo, looking very regal yourself in a severe black gown with a black mantilla and a giant white ruffled collar that resembles a car’s air filter. It’s the only photo where your bearing doesn’t look forced and stiff. You may have been a supernumerary, but in your mind, you were always the star. You insisted your daughters were stars, too, although I think you saw us more as moons, objects that orbited around you, reflecting shards of your brilliance.