The Art of Misdiagnosis

by Gayle Brandeis

  APRIL 2010–AUGUST 2013

  We move into our new house about a month after Jette dies, after we’ve done some remodeling, after we’ve gone on a disastrous book tour for My Life with the Lincolns, my novel that came out a day after Jette’s death—a book tour during which I sobbed at one reading and ended up in the ER with one of my vomiting episodes after another, a book tour during which Michael walked into an empty classroom as I was giving one of my college talks and wrote, “My mother died two weeks ago and I still cry every day” on a white board with a fumey dry-erase marker.

  Both of us are still shellshocked.

  I am not writing much, if at all, but I tell myself I am learning about revision through renovation. Tearing rooms down to their studs, moving walls around to make the space more usable, choosing sustainable materials, updating switch plates and doorknobs and pendant lights—all of these things feel applicable to writing. Still, my lack of real writing has left me with a gnawing, growing sense of guilt and unease. I hire a babysitter to come a few mornings a week so I can attempt to seriously dive back into the world of words.

  I’ve been wanting to write about my mom for years, but she had asked me to not write about her while she was alive. Now that I have that freedom, I freeze. Be gentle with yourself, my friends and family tell me, don’t expect too much of yourself right now; maybe it’s too soon to write about her. I try to heed this advice, but my lack of any substantial writing makes me feel like a failure. I force myself to write little bits about her, although I can only approach her death sideways—it’s too hard to face it head-on. I write short fragments of a novel. Mostly, I use my babysitting time to respond to my online students’ work and watch the blue jays dart in and out of the wisteria vines outside the window and futz around Facebook, “liking” things without having the energy to comment or post any updates of my own. My limbs feel full of wet cement; my brain, too. I feel that way even more so when Michael is home.

  Without realizing it was happening, Michael and I have started to quietly loathe one another. I feel drained by his presence, by the heavy cloud of grief that surrounds him. When he comes home, my heart sinks. I’ve started to see him as weak, like his mom; I later learn he’s started to see me as selfish, like mine. We glare at each other over dinner; we grow snippy with one another; we don’t talk about what’s pulling us apart.

  We continue on this miserable path of denial for a couple of years. Not every second is torturous, of course; we garden and cook together; we run around the house and make sofa cushion forts and sing silly songs with Asher; we share blessed moments of laughter and affection. But we also fall into lots of seething silence, give each other lots of nasty side glances, and, between the two of us, we keep having lots of medical emergencies. Michael comes down with double vision, migraines, gallbladder attacks, kidney stones. I start to have more frequent episodes of pain and vomiting; they come every couple of months now, and are so bad, I end up having nasogastric tubes shoved up my nose and down my throat, something I hadn’t needed before in my many visits to the ER. Doctors still can’t figure out what’s going on. Our bodies acknowledge we’re falling apart even if our conscious minds deny it.

  To add to this list of emergencies, my dad breaks his hip in 2012. When he is done with rehab, Michael and I move him to an assisted living place in Riverside so he’ll be closer to us. After he graduates from a wheelchair to a walker, we move him to Olive Grove, which has more of an independent living focus, although care, which he still needs, is available. An apartment complex named Golden Oaks, the same name as the building where my mom ended her life, is one block away. I hate driving past it. The first time I saw the sign for Golden Oaks, I lost my breath; other times, the name makes me cringe so hard, my muscles cramp. When we first considered moving my dad, I wondered how I would survive seeing this sign on a regular basis. Over time, it has gotten a bit easier; seeing the name spelled out has become a homeopathic remedy of sorts—taken in small doses, the words “Golden Oaks” have less power to wreck me.

  But I’m a wreck in other ways.

  I enter a charged long distance communication with a writer I admire who lives on the other side of the country, a man old enough to move into Olive Grove, where the minimum age is sixty-two, although I can’t imagine him inside those walls. It’s hard to imagine him contained within any walls, his boundless sense of adventure such a contrast to the energy suck Michael has become. And this man flatters me—oh, how he flatters me. He calls me beautiful and brilliant; he says he’s intoxicated by me. And I lap it up. I’m starved for it. I’m deeply intoxicated by him, myself; I charge toward him like a freight train. When Michael discovers our e-mails, he’s understanding at first, and he and I try to work through the situation together, but when I continue to reach out to this man, Michael throws a punch through our hollow core bedroom door, bloodying his knuckles, terrifying me. Even then, I can’t seem to stop. I’ve become an addict seeking a fix, craving that good dopamine rush after months and months of stagnation and stress. I feel more seen and heard and alive than I have in years.

  Michael and I decide upon a trial separation and I arrange to stay in the guest suite at my dad’s retirement community. Olive Grove seems like the ideal place to catch my bearings, figure out my next step.

  Once I land in the apartment with its musty fake flower arrangements and its big wooden console TV, I can breathe more fully than I’ve been able to in ages. The rooms aren’t buzzing with conflict. The walls are empty of history—at least my own. I can crawl under the cabbage-rose bedspread and know no one will be seething next to me. I love having my dad nearby. And on the days Asher is here with me, he loves the place, too—the couch has become a great mountain for his action figures to climb, and there are many long hallways to explore. The residents generally smile as Asher runs past them in their walkers and wheelchairs and motorized scooters, seemingly grateful for the burst of youth he brings to the place. And I feel suddenly young and vibrant, myself, thankful for my strong and sturdy limbs, my freedom of movement. Being here reminds me these things won’t last forever.

  [BUZZ AND ELIZABETH sit together on the patio.]

  BUZZ: The fact that Arlene has pulled this together, you know, and out of the need to spread the word, about the diseases Ehlers-Danlos and porphyria, is a remarkable thing, because, as Arlene says (Elizabeth sniffs loudly), it’s part of the six thousand or so rare diseases that she feels that these two diseases don’t belong there, because they’re not as rare as people think (Elizabeth sniffs again). They’re just rarely diagnosed properly. (Elizabeth says mmmhmmm, noncommittally) So to do this and be as passionate about it and to drive it as she has is a remarkable thing, because it could affect the lives of a lot of people (Elizabeth sniffs) who don’t know otherwise, you know, how to handle these diseases. To spread the word to the medical community, I think is a terrific idea (Elizabeth says mmmhmmm and looks down), and to see the passion and the energy that she’s been putting into it is remarkable.

  ELIZABETH: The artistic expression in this project as well has been such a positive kind of project, taking elements that have been painful and difficult and confusing from her past and the family’s past and kind of transforming that into a proactive and positive kind of force, um, is really quite amazing, that you know, she’s been able to harness the pain of the past in such a positive way.

  Mom,

  In many ways, your documentary was a synthesis of your other endeavors—you were able to perform, like you did as a supernumerary, but this time, you were the diva, the one anchoring the show. You were able to talk about art the way you did as a docent, the way you wanted to do through Artful Conversations, but this time with your own paintings. You were able to raise awareness and money (at least that was the plan) the way you hoped to through Good for You Fundraising, but this time in a more personal way. You were able to work toward social change, the way you did with NOFAW, but without having to lobby Congress.

  The Art of Misdiagn
osis was a mix of vanity and philanthropy, a perfect amalgamation of you, and even though the whole process was plagued by your paranoia, even though it made your daughters’ skin crawl, it came closer to completion than any other project you had started. You became a filmmaker at seventy, with no prior experience. It’s quite amazing, really. I have to admire your vision, your follow-through. You wanted to make a film, and you did.

  NOVEMBER 6, 2013

  Celia’s name appears in my inbox and my heart does a happy flip. Other than a brief visit in New York about ten years ago, I haven’t seen Celia since she was my roommate in Bali, haven’t heard from her in ages. Celia is going to be in Southern California visiting friends, she writes. She saw my essay in the Rumpus about my mom’s suicide—the first piece of writing where I directly addressed her death—and is wondering if we might get together.

  I desperately want to see Celia, but life has me off kilter and overwhelmed. I’m still settling in to my new post-Olive Grove bungalow and grappling with the fact that the house we own—where Michael still lives—has just been burglarized. Michael is out of town and I’ve had to deal with all the insurance and police reports and clean up. The worst part was seeing Asher’s drawers yanked out of his dresser, his little clothes strewn on the floor. It doesn’t help matters that the writer I’d been pining for broke my heart after a five day vacation together and I’m reeling, in a state of despair. I think of my mom’s notes about the second season of grief: “We may hope for the wrong things.” I don’t know what to hope for anymore.

  By the time I finally write back, Celia’s almost ready to leave for the Bay Area.

  “I’d love to give you a healing session as a wedding present if you have time,” she writes; she had read about my new marriage in my essay.

  “My husband and I are actually separated now,” I tell her. I could use that healing more than ever.

  I juggle some things on my calendar so I can drive out to San Diego to see Celia before she leaves town. As soon as I find her friend’s house and she walks toward me, time folds in upon itself. Her soft British accent brings me right back to Bali, to black rice pudding for breakfast and the jangle of gamelan music and funeral processions running zig zag through the streets to outfox the demons who can’t turn corners.

  Celia’s hair is now a pale coral orange—“I have help,” she smiles when I remark upon it; my hair is threaded with white. Both of our faces show signs of the two decades that have passed, but I would never guess she is almost seventy, twenty-five years older than me. We are still ourselves, still the same women who whispered to each other through mosquito netting so many years ago.

  Celia heats up some mung bean soup she had prepared the night before, an ayurvedic soup golden with turmeric. She slices up radishes and tomatoes and celery for a simple salad, douses them with olive oil and lemon. She toasts some bread in the oven, fries up some daikon, grabs a little pot of roasted garlic. We eat our lunch, delicious, outside in the lovely backyard garden, laundry draped over the backs of our chairs to dry in the sun, and we catch up on our lives.

  “You’ve had so much to deal with,” Celia says, and the concern on her face makes me realize that yes, yes I have. Maybe I shouldn’t feel so guilty about being so upset lately—feeling weak, feeling like I don’t know anything about life or love; feeling like I don’t know anything at all. I think back to when I graduated from the University of Redlands in 1990, five months pregnant. My dad had asked me what I had learned in college, and I imagine he was expecting me to say something about literary theory or the like, but I told him, “I’ve learned three things: stay in the moment, keep my senses open, and don’t take myself too seriously.” I had been so sure at the time that I had learned everything I ever needed to know, that if I could only remember those three things, I’d be happy the rest of my life.

  We drive out to the park her friend recommends, by the harbor. As we pull into the lot, my mind takes me up the coast to the harbor in Oceanside where we released my mom’s ashes. We find a stretch of grass that seems fairly quiet, and Celia lays out a shawl for me to lie down upon, my purse as a pillow. I settle onto the fabric, the grass crackling beneath it.

  I imagine we’re going to focus on my belly, the way we did in Bali, the site of so much illness and stress, especially lately, but her hands keep being pulled like magnets over my chest.

  “What’s going on here?” she asks, and I find myself aware of a constriction I hadn’t noticed before, or maybe have grown so used to, I don’t notice any more. I inhale and my ribs contract, as if they don’t want me to take a deep breath.

  “Wow,” I say. “I had no idea my chest was so tight.”

  “How would you describe it as an image?” she asks, and a board surfaces in my head, in my chest, a heavy gray board set firmly over my heart, weathered like driftwood but solid as slate. The board I had erected against my husband, against my own grief. Somehow I had been able to open my heart recklessly, lavishly, to this other man, but I had kept it closed off to myself. Her hand stays there, sending light and heat, and I can feel that board start to soften, can feel the pain and love I’ve trapped beneath it start to pulse and breathe as tears start to stream.

  We don’t have much time—I have to race back to Riverside soon to pick up Asher at preschool—but Celia packs our hour with one profound revelation after another, saying things like, “Your mother claimed ownership over your body; it’s time to take it back,” and, “You had a contract with your mom—you need to identify it so you can break it.” She tells me that part of this contract was colluding with my mom over my illness as a teenager, that pretending to be sick is how I was able to survive.

  “Your mother is still hovering around you,” she tells me, and part of me is skeptical about this, about such things being possible, but the trees above us are full of crows. I think of the crow that swooped over our windshield at my mom’s house. I think of the time I felt my mom’s ghost hand on my shoulder.

  Celia puts her hand on my left shoulder just as I am thinking about this. “She’s right here,” she says, sending shivers through my whole body. “You’ve been carrying her on this shoulder all your life.” That shoulder has always been lower than the other one; my shirts tend to slip off on that side, Flashdance style. “It was part of your contract with her.”

  My hands and feet start to tingle.

  “I think I’m hyperventilating,” I tell her, remembering a time shortly before I left my first marriage when I was curled on our bed, crying so hard, I hyperventilated; crying so hard, I couldn’t move my tingling hands.

  “I think you know what you want to do and you’re just scared to tell me,” Matt had said, and he was right, he was so right—I knew I wanted to leave, but I couldn’t admit it out loud to him yet; all I could do was sob my body into uselessness.

  “People often experience tingling during a healing,” Celia tells me. “It’s energy being activated.”

  Breathe into it, I tell myself. Don’t be so afraid. Don’t knock her away this time. Celia’s hand is still on my shoulder, sending warmth that radiates all the way down to my hips.

  “What is it you want to say to your mom?” she asks, and I want to say something loving and forgiving, but the words that come barreling out of me, straight from my gut, words I had never thought to say before, are “How dare you.”

  “Yes,” says Celia, and the tears pour and the same words keep coming out of me, louder and stronger each time. People are walking by now—I can hear them on the grass—but I don’t care. I keep saying, over and over again, “How dare you. How Dare You. HOW DARE YOU?!” and Celia keeps saying, “Yes,” encouraging me to let it out, to get it all out.

  The words finally stop. I lie on the shawl breathing heavily, my entire body tingling now.

  “It’s time to let her go,” Celia says quietly. “It’s time to return to your true nature.” She asks me to imagine I’m holding a knife, that I should use it to cut the invisible umbilical cord that still
ties me to my mom. I start to plunge the knife toward my own belly—a hara-kiri of sorts—but then she clarifies that I should sweep it over the front of my body, slicing the knife above all the chakras. I feel an especially deep tug as my hand travels over my pelvis, severing my mother from places she never should have been.

  When I am ready, Celia helps me up and hugs me back into the world.

  “Thank you,” I tell her, but the words don’t feel strong enough. How can you thank someone for softening the board over your heart? For helping release a burden you’ve carried all your life? For resurfacing just when you need her? For saving you again, almost twenty-four years after she saved you the first time?

  I don’t have the same youthful hubris I did when I thought three aphorisms would spare me from sadness. I know I am not healed forever, absolved from pain for the rest of my life; I know I will still grieve for my mom, that my heart will still try to protect itself. But when I turn my head, I am stunned by the ocean; it looks more beautiful than ever, specks of my mom glinting in the waves.

  GAYLE: I’m so proud of my mom, that she has taken the pain of her family, the sadness of her family, that she’s transforming it in a way that’s creative and proactive, and that she’s using that pain to move forward and help others, and I think that’s a beautiful thing and something that I admire deeply. Um, it is very, you know, ballsy of her to take on the medical establishment, but I love that she’s trusting her instinct and following through with them, and hopefully they’ll listen.

  Um, as for my place within it (looks off to side and lets out a sharp exhale), that’s hard to say because I think so much of my life has been trying to see myself as a healthy person and not identify so much with illness, because I did that a lot when I was younger, where illness became my identity to an unhealthy extent, and so for my own personal well-being, I needed to step away from that and just see myself as a healthy individual, a healthy woman, and so the medical issues aren’t things I feel personally compelled to go out there and fight for, um, but I’m grateful that my mom is doing it.