Mom,
When you died, you were almost done with The Art of Misdiagnosis—everything was in place but the audio, which needed to be “normalized” (a word that I had trouble associating with you). I got in touch with the producer and sound guy you had hired after you broke things off with your original production team, and arranged to have the work completed posthumously. We didn’t know what we’d do with the documentary when it was ready, but we knew how important the project was to you, and thought seeing it through would be the best way to honor you. The post-production audio specialist sent a sweet e-mail after he finished the work:
When I first set out to clean up the audio I was uncertain as to whether the film could capture an audience due to its length & nature of content. After the dialogue was adjusted & Arlene’s music choices were set in place I felt the whole dynamic of the project shift—no longer was it simply a documentary about two evasive medical conditions, but it was a door opening to a rich personal story.
Art of Misdiagnosis is unlike any documentary I have ever seen because not only does it offer detailed science, but it brings you along for the journey & illustrates how a creative person like Arlene was able to channel her past into something positive. It is a beautiful example of the human ability to forge diamonds in the darkest times under immense pressure. I am proud to have been a part of this film’s creation.
For all the complicated feelings I had about your project, it was good to see this response. The Ehlers-Danlos National Foundation also wrote a lovely tribute about you and your project, and included many photos of your paintings in their newsletter. Your work may not have changed emergency room procedure the way you had hoped, but it did touch people.
I continue to be grateful for your example, for the way your desire to make a difference has influenced my own desire to inspire change, a desire that helped me in the midst of my grief. Asher came down with pneumonia when he was three months old, and of course I went into a panic, worried I was going to lose him, too. Around this time, the women’s peace organization CODEPINK asked me to write an action alert about a NATO airstrike in Afghanistan that had killed twelve members of one family, including six children. I had been writing the action alerts for CODEPINK for many years, but had planned to take a break from work after giving birth, a break that felt even more necessary after your death. Even so, I knew I needed to say yes to this project. Writing about such devastating and completely unnecessary loss helped put my own situation in perspective. Asher was going to be fine, our doctor had assured us; he had access to good health care—he was being treated; he was improving. Families bombed by our drones weren’t so lucky. I was grateful to be of service, to be able to give people concrete actions they could do to speak out against further drone attacks; it helped take me out of my own little bubble of grief and anxiety, helped connect me to the pain of the wider world. It reminded me that I didn’t want to just sit around worrying about the danger of every little cord, every little crumb. I wanted to reach out again; like you, I wanted to make a difference, even when I was feeling lost.
I wasn’t able to bring myself to watch your completed film until almost five years after you died. I was at a weekend women’s writing retreat at St. Mary’s Art Center in Virginia City, Nevada; the building had originally been built as a hospital for miners in 1873 and is supposedly one of the most haunted sites in the country. The three days away from mothering and other responsibilities seemed like a good opportunity to face you, to face what you had made, what you had done. When I popped the DVD in Asher’s portable player and heard you say, “I fully feel that the spirits of my family have propelled me to do this documentary” through my headphones—the first time I had heard your voice out loud since you died—a sob ballooned in my chest, but I held it in and heaved silently, not wanting to startle the women writing in the quiet rooms around me. When your image appeared on the tiny screen, my eyes were so full, I saw you through water—wavy and spectral as any ghost. Once I blinked, there you were, alive and standing. You, speaking about illness as I sat in an old hospital. You, whose mental illness was never diagnosed; you, who may have killed yourself to escape what you feared was imminent institutionalization, visiting me in a place once used as an asylum.
I still don’t know what to do with your film. All I can do for now is weave it into my own story, give you a chance to speak for yourself.
DECEMBER 2013
Michael and I start to tiptoe toward one another again. Our months apart have been good for us. We’ve each realized we needed to be alone to grow stronger as individuals, to face our grief on our own time, in our own space. His family offers to fly me out to Louisiana for Christmas, along with Michael and Asher, even though we’re still technically separated, still not sure what the future will bring. I am nervous—his stepmother’s large family is Southern, quite religious, quite conservative, and I worry that I will be lectured or shunned, that I will be hated for what happened to our marriage—but everyone ends up embracing me. They practice what they preach in the best way, showing me forgiveness, showing me love. We end up having a wonderful time, and maybe it’s the home-distilled apple pie moonshine, but I start to open my heart to Michael again. I start to remember he is kind and loving and patient, and, now that we’re not seeing each other through a lens of bitterness, a lot of fun to be with.
I fly from Louisiana to Chicago for a sister retreat with Elizabeth, a chance to reconnect with our hometown and meet with our mom’s sister. Sylvia is ninety-two now, happy to show us how she, a former Vaudeville dancer, can still touch her toes; when we were kids, she used to show us how she could do the splits. our mom had told us that when she was born, Sylvia had to miss her prom so she could stay home and take care of the younger kids; supposedly Sylvia had resented her for this her whole life. We ask our aunt about missing her prom, and she says no, that never happened. “I used to wake up half an hour early every day so I could strip your mom’s crib,” she tells us. She would take the wet clothes and diapers off our mom’s little body, bathe her and clothe her without complaint so their mother could get some rest.
We ask Sylvia about other stories, the one about their father, our grandfather, witnessing the rape and murder of his pregnant mother in Russia at the hands of Cossacks. And Sylvia says no, she doesn’t know anything about this, and no, she doesn’t know anything about their father letting Al Capone’s men store weapons under his market in exchange for protection. At first we wonder if maybe our grandmother had only told these stories to our mom, her youngest, her princess, her pet, maybe she hadn’t opened up to her older children the same way, but we also have to face the possibility that all our mom’s stories were fiction; that she had made every single one of them up.
Muriel Rukeyser famously wrote, “The Universe is made of stories, not of atoms”; if this is true, what happens when our own foundational stories are exploded, when everything we thought we knew is shattered into subatomic particles? Elizabeth and I are shaken but surprisingly okay with this fresh discombobulation. Maybe it doesn’t mean we’re lost. Maybe it means we’re free.
[As credits roll, image of GAYLE moves to a small square in the upper-left corner.]
GAYLE: Well, I really hope that my mom opens people’s eyes and I think this film has a great potential for doing that, for educating the public and for getting these diseases sort of into the common consciousness. Um, yeah, and my mom does that all the time in our lives; she is kind of, uh, diagnosing people from a distance (laughs), such as my fiancé and people like Bernadette Peters, who have very clear, uh, beautiful skin, and um, she’s on a mission, she’s driven, and I just love that she has that energy. She does feel compelled.
[Note: After ARLENE showed Gayle and Michael the rough cut of the film, she gave Michael a gift-wrapped, economy-size bottle of vitamin C to help him with the Ehlers-Danlos she was sure hadn’t been diagnosed properly yet.]
GAYLE: I hope that my mom will continue to follow her instincts both creatively a
nd as an activist, and I have no doubt that she will (laughs), but I look forward to seeing where it will take her next.
MARCH 11, 2014
Elizabeth and her husband, Craig, are in town from Toronto; I meet them for lunch, along with my dad, Arin, Michael, and Asher, at the Salted Pig, a gastropub in downtown Riverside. Michael moved into my little bungalow last month and while we’re still working on repairing trust, things are sweet between us.
There’s not much I can eat on the pork-heavy menu as a vegetarian—even the popcorn is cooked in bacon fat—but the vegetable sides are amazing, and I haven’t been able to eat much lately, anyway. My belly has been in fairly constant pain since December, and eating only makes it worse. I haven’t had one of my episodes since I was hospitalized for a few days last August—no vomiting at all—but for the past several months, I’ve felt like I’ve been stuck in an extended episode, the violent pain from my usual attacks stretched into one long attenuated ache. My new gastroenterologist has just put me on a hard-core drug that requires four hours in the chemo lab every week, one that will shut down my immune system. I resisted this treatment, but she said it was the only way to avoid surgery. The strictures the CT scan found in my small intestine were dangerously close to obstruction; this was a last-ditch effort.
My doctor calls after my family has ordered our lunch. I walk over to a corner of the noisy restaurant, tuck myself against a wall and hold my hand over one ear so I can hear her.
“How are you feeling?” she asks me.
“I’m still having pain,” I tell her, “but it’s not too bad right now.”
“Your new blood test came back positive for Crohn’s,” she says. It somehow always sounds like “Chrome’s” in her mouth, something shiny and hard. She had assumed that Crohn’s is what had caused the strictures, but I hadn’t been convinced, not fully, my mom’s insistence I didn’t have Crohn’s still strong within me. This call makes the diagnosis real. I look over at my family sitting at the long table made of reclaimed wood. What would my mom say if she were with them, alive, and I came back with this news? “You have the marker for high risk of complication,” the doctor tells me.
“Interesting,” I say, my forehead against the wall now. The music from the speaker system thumps into my skull. All these years of misdiagnosis, and I am back to my original diagnosis, the one my mom was so certain was wrong. I thank the doctor and return to my family.
“Is everything okay?” my dad asks.
“I have Crohn’s disease,” I say. “It’s official.”
He lifts his eyebrows.
“Weird,” my sister says.
Then the food comes; our server sets my order before me—brussels sprouts tangled with kimchi and fennel; butternut squash roasted in brown butter, dotted with pomegranate seeds, dusted with peanut-butter powder. My mouth waters.
I don’t yet know it’s the last solid thing I’ll eat for eleven days.
After lunch, Michael, Asher, and Arin take off, and I follow Elizabeth and Craig back to Olive Grove. Pain hits me in my dad’s living room, doubles me over by the wooden chest he uses as a coffee table. I kneel on the tan carpet, lay my belly against my thighs. I ate too much, I tell myself; this will pass. I will feel better soon. My default still tends to be denial.
When Elizabeth and Craig are ready to head to LA for the night before they fly back to Toronto, I can barely stand. I crouch in the ancient elevator; crouch in a bed of pansies when we get to the parking lot.
“Can I drive you home?” my sister asks, concerned.
I shake my head, encourage her to hit the road before traffic gets too bad, but I can barely see straight as I head back to my house. I almost stop the car in the middle of a railroad crossing because I’m about to throw up. Somehow I press on, hold it in until I get to my bathroom, and then I can’t stop.
At the emergency room, I tell the doctor my pain level is a nine, but it really feels more like an eleven. It takes a while for the nurse to hook me up to the IV and start the pain medicine, and I writhe around on the ER gurney, vomiting into a little kidney-shaped bowl, peeing my pants more each time I throw up. The CT scan shows an obstruction; they decide to admit me into the hospital for further observation. The pain medication finally kicks in, and I feel like I’m floating as they wheel me into the elevator.
I look up at my reflection in the mirrored elevator ceiling. My legs, bent together to one side, look like a mermaid’s tail beneath the thin blanket; my dark hair fans around my head like I’m in water. I am floating, floating, floating right out of my skin.
I find myself chronicling my hospital stay over the next few days, posting jokey things like “Feeling some cognitive disconnect as I attempt to eat my liquid breakfast (vegetable broth, Italian ice, hot water) while watching ‘Deep Fried Masters.’ Damn, those deep-fried deviled eggs on a stick look tasty” and “In my fine tradition of wardrobe malfunctions, I appear to have gone through my entire surgical consultation with my right boob hanging out of my gown.”
A friend who brings clean underwear tells me that when she visits, what she sees is different from how I present myself online—online, I offer a brave, funny face; in person, I’m shaky and tearful. I realize I need to share this part of my experience, too. I don’t need to pretend to be a hero—I can let myself know hard feelings now, know them and give them voice.
March 13: “My doctor told me I need to complain more, and I burst into tears. I’m way too good at acting as if everything is okay, as if pain is normal, as if I should just be able to push through it without asking for help, even though here in the hospital, I’m surrounded by any kind of help I could possibly need. Working on claiming and voicing my own hard truths—easier for me as a writer than a person in the world, sometimes.”
March 17: “A belligerent, disoriented woman was moved into my room during the night. I’m mustering all the compassion in my thin blood that I can for her, all the patience; it’s forcing me to process a lot of stuff about my mom, and I’m trying to see this as a good thing, a way to learn and grow. But I’m also remembering what my doctor said about how I need to complain more, so if it gets too much, I’ll ask for another room. . . .”
My posts are getting more comments than I can ever remember receiving and I worry I am letting myself become the Sick Girl all over again, gaining the spotlight through illness. This feels different from when I was a teenager, though. This feels very different. I write about how scary it is to have a PIC line installed, watching on an ultrasound screen as the tube snakes toward my heart; I write about spilling pee all over myself as I try to move the collection container off the toilet. When friends comment back, I know they see me as I truly am, human and flawed and vulnerable and real. I can show myself at my lowest and people are willing to meet me there.
Dear Mom,
As I was wheeled into surgery to remove several inches of obstructed intestine, I was carrying so many people with me—all my family, of course, plus friends who had dreamed about me, friends who had sent messages and flowers, friends who were helping with Asher, friends I hadn’t ever met in person who were sending hope my way.
I know I was carrying you, too.
When the surgeons reopened my Caesarean incision, when they sliced out the part of my intestine that was scarred—in so many ways—when I was sick as a teenager, they sliced part of you out, too, the part that’s lived in the darkest recess of my body, the place where so many silences have accumulated. Then they stitched the rims of gut together, trusting my body would fuse them back into a single channel, open now, but forever marked by its rupture.
Shortly after you died, Elizabeth’s husband, Craig, marveled at how it was a story that had killed you, a story your brain had made up. Writing our story now is saving me. I’m writing my way toward a more honest, more vocal life; I’m writing my way out of my anger toward you, writing my way toward compassion, toward admiration. I’m writing my way into feeling proud to be your daughter.
You would b
e so proud of your grandkids, Mom. I was surprised and grateful to discover the treasury bonds you had left for Arin and Hannah and Elizabeth’s daughter Mo in your safety deposit box. They have used them well. Hannah got her GED, scored a perfect 800 on her verbal SATs, and moved to New York to become a standup comedian. She flew there having no idea where she’d live or how she’d support herself, and your generosity made it possible for her to get settled there, to create the life she’d dreamed of when she was camped out on our couch. Arin used the money to further his competitive cycling career, buying new bikes, taking three months to cycle across the country with his best friend. It fills my heart to see them both pursue their passions—something you cultivated in me; a legacy that lives on in them. I’m eager to see what Asher’s long-term passions will be—so far, they’ve been trains and kitties and Legos and super heroes. And words. He loves words. He’s such a sweetheart, Mom, such a light. You would have been wrapped around his pudgy little finger. I have to admit, sometimes Michael and I feel a sense of relief that Asher doesn’t have to grow up surrounded by your and Jette’s chaos, but more often than not, we feel sad that you don’t know this beautiful boy.
Grief is such a strange process, so much more fluid than I ever could have guessed. Even more fluid than the grief map I found in your voice—the seasons come and go in strange order; I have moments where I feel I’ve reached season four, the creation of a compassionate heart, the opening to a larger story, but sometimes a scent or snippet of song or some other unexpected trigger will take me right back to the shock of the first season. Before you died, I imagined grief was a fixed thing; I thought it would be like carrying a bag of wet sand around in my heart all the time. Unyielding. Unrelenting. I thought that because of the way you grieved your mom; every time you talked about her, you cried horrible, gut-wrenching tears. Decade upon decade upon decade. I imagined there was no chance of healing, no chance of processing; grief just sat there, a bag of wet sand in your chest. And sometimes it does feel that way. I do always carry its weight. But its weight changes. Wet sand becomes a nest of wasps becomes water becomes anvil becomes a delicate soap bubble, iridescence swirling across its skin.
The Art of Misdiagnosis Page 19
