Gayle and Elizabeth, For once in your lives, give me a 30 day benefit of the doubt.
My heart sinks. The very words my mom had yelled at me, the very words burned into my brain—“For once in your LIFE!”—were not as impulsive, as passionate as they had seemed. They were part of her script. Either that, or the letter is a continuation of that conversation, but she left so quickly, she must have written it before she called.
Elizabeth continues reading; it feels strange to hear our mom’s words in my sister’s voice, which she manages to keep remarkably calm and steady.
I know this all appears unbelievable, but it is not.
I left my car at the hospital Friday night where I went with chest pains, given blood thinners, the under the tongue medication, blood tests and heart monitoring. The Sherman Oaks Hospital on Van Nuys, in Van Nuys, where the 101 merges with (near) the 405. All was going well at the hospital until a Middle Eastern couple, appearing to visit across the hall, seemed to watch only me. After breakfast, I felt the same reaction to whatever Dad sprayed onto me. The woman, not an employee, came in to ask how I feel. She seemed surprised I appeared to be doing well. Drinking large amounts of fluids helps. It occurred to me I would be left in a permanent state like that drug induced condition if I did not leave, if I were released to this couple. Find out who they are and why they were permitted access to me?
My car is full of fast food stuff, my computers, my project’s original film and external ports. My project is completely gone without that. Feeling safe again is the only concern right now. I always am surrounded by Middle Eastern men, in flat bed trucks, hotel rooms (wall apart), on buses and stores. The spray seems to come from a high tech phone and makes a ping sound when it goes off. Some of the same license plates are 8W87425—white Titan, 8A01957 Red flat bed truck and SUV 6V12067. The first two followed me from La Jolla to Coronado to Santa Barbara and left when I pulled into the emergency room, between Thurs and Sat. I have asked some of these men why they follow me. Two said “You will be caught.” Others deny any contact. I don’t know what if any trumped up charges were being cooked up. Ask at the hospital and especially why they (the couple) were given access to me. At the last hotel to be given safe escort from my hotel to my car, I asked hotel management to call police. The police did not write a report and gave me the wrong address to the Enlightenment Fellowship Retreat. Many of those men at that hotel were white, not Middle Eastern.
You can get my license # from Hyundai in Carlsbad’s service department.
I still need to find a safe house, the one in Irvine I was headed to on Thursday did not answer their phone when I got close.
Call to cancel Maria [number]
Sandra Wed. 5:00 [number]
Sarita [number]
Ask Adam Lansky, sound editor [number] and Frank Quattrocci [number] if my project is or ever will be complete?
I know how baazar [sic] this seems, but just give me 30 days to try to work this out.
Give the beautiful baby boy a big kiss from me. Tell Michael how appalled I am that he asked me to leave like that, in front of my grandchildren. Your golden husband is badly tarnished.
Sarita may have my key (house). DO NOT let your father have access to my home.
The things I need most—all vitamins and Jenuvia [sic] samples, cabinet and bottom drawer to the left of the stove. Diabetes testing equipment in the back bathroom, bottom shelf next to the toilet. The Sherman Oaks Hospital still has my medication and vitamins in their pharmacy.
Please—Please—Please work with me here for the next 30 to 45 days.
Mom
CINDY LAUREN, executive director, Ehlers-Danlos National Foundation: There’s a human truism that we all like stories, so me quoting facts and statistics is like “ugh.” (Closes eyes and throws back head and hand) But your story, or her story, is going to engage someone’s attention, and they’re going to remember when that next patient walks through the door and this weird constellation of symptoms that doesn’t seem to fit; it’s not nothing, but it’s not the biggies—cancer, diabetes, or MS—it’s something, and what we’re looking to do . . . is asking physicians to stop for a minute—hmmm, maybe I should consider this.
Mom,
One night when I was sixteen, we were on our way out to dinner. Dad was driving the Park Avenue while you were in the passenger seat, sealed in your own thoughts. Now that both your daughters were well, you seemed a bit lost. You were drinking less, but you didn’t seem to know what to do with your time. Years later, you would sue Elizabeth’s doctors, would force her to fly home from college and sit through a trial where she couldn’t bring herself to tell the truth about making herself throw up, but we weren’t there yet.
I had my Walkman clamped over my ears, my eyes closed, head tipped back against the plush burgundy seat. I was thinking about being in the backseat of another car, with my first serious boyfriend; we had parked behind a theological seminary the night before, Howard Jones crooning, “Don’t always look at the rain . . .”
Elizabeth must have known. After weeks, months, years of barely touching, I could feel her reach across the gap between us. I could feel her hand hover over my face, could smell the corn-chip dust on her palm. She must have known I was thinking about a kiss. She laid two fingers across my lips—her index finger, her middle finger; she laid them lightly across my lips like she wanted to take me back to that other backseat.
I opened my eyes, startled. She lifted her fingers from my mouth and looked right at me. Her eyes healthy. Her eyes not shadowed by dark circles, her eyes not bloodshot, her eyelids not heavy and oily looking. Her healthy eyes looking into my healthy eyes. Both of us healthy together. Both of us healthy and looking at each other and not sure what to do next. It had been so long since we had known what to do.
After I went off to college, Elizabeth and I found each other again, found fierce, sweet reconnection. The first time she came out to visit me on her own, we tried to concoct a way for her to stay a while longer. The only way we could change her ticket without penalties, we learned, was to get a doctor’s note to prove she had been too sick to fly. We spent our extra day together driving from one clinic to another, looking for a doctor who would write us this note. She pretended to have flu, she pretended to have a sore throat, she pretended to be constipated, to have trouble peeing. No one would believe her. We found this hysterical. Neither of us had admitted to having fabricated illness at this point—our confessions would come several years down the road—but we knew. We knew we had been the divas of disease, the starlets of sickness. The sick girls who were now girls glowing with health. Girls who, for the blessed, blessed life of us, couldn’t convince anyone we were anything other than well.
NOVEMBER 29, 2009
Elizabeth ends up riding around downtown LA in the back of a police car with two cops: a fresh faced rookie, and a burly guy who seems scary at first, but is respectful to everyone he meets—from a homeless woman they encounter to the doorman at the fancy hotel where our mom had spent the night. The police had checked our mom’s credit card records and learned she had stayed at the Kyoto Grand, where she had checked in under the name Ann Brand, similar to a pseudonym she’s used before. I wonder what sort of life she imagined for Ann Brand, wonder if she’s still using the name now.
Michael’s sister and her two sons are due soon. I’m not sure I’m up for a visit, given my general state of deshabille and panic, but it seems unsociable to tell them not to come. And we have a present, thanks to Elizabeth. I don’t know what we’d do without her.
Michael takes Asher so I can slog off to the shower; each step feels like pulling my feet through mud, like my body is full of lead. My breasts are rock hard with milk and aching; my right armpit is, too, some breast tissue having migrated there. If I sliced my swollen armpit open, would milk come gushing out?
Once the water starts to pour over me, I feel lighter. I feel myself dissolving into steam, milk flowing down my body, my edges blurring, mind emptying.
Bliss. I stay under the shower head until my skin is poached pink, until the hot water runs out and goose-bumps prickle me back into my body and my arms start to ache for Asher again.
My hair is still wet when Mette and the boys arrive. They are instantly enamored with Asher and take turns holding him on the couch. I worry they won’t remember to support Asher’s head, but of course, they do fine; they are utterly responsible and charming and careful.
I feel myself on the verge of hysteria. As soon as Mette asks about my mom, I burst into tears.
“Let me know if I can help,” she says. “I know what it’s like to have to go looking for your mom.” She rolls her eyes and gives a little laugh.
Mette and Michael’s mom has had issues with substance abuse—prescription pain medication. She has disappeared at times, too, once after her live-in boyfriend was arrested for parole violation. Her kids sent her back to Denmark a few years ago because her addiction had gotten out of control; they thought she’d have a better chance of getting clean at home. It seems to have worked. She moved back to the States last year; she stayed with us for a couple of tense weeks until we found a subsidized apartment that would take half of her $447 monthly Social Security check. Jette is a difficult woman—racist, intolerant, snippy, judgmental. Whoever says Denmark has the happiest people in the world has not met this sour puss. She makes me miss my former mother-in-law all the more deeply.
“Are you doing anything special for your birthday?” I try to sound like a normal person as I talk to the birthday boy, try to sound like my body isn’t a grenade of milk and anxiety. He doesn’t seem to notice I am holding on by a thread; he shrugs and smiles at me shyly with his big, gorgeous eyes. Both boys are beautiful; if Asher grows to look anything like them—or anything like his own siblings, for that matter—he’ll be a stunner.
“We were thinking of finding a movie,” says Mette.
“I’ll check the listings,” I say, suddenly eager to have the house back to ourselves. I want to be able to take off my shirt and sob without scaring anyone. I find a kid-friendly movie starting at 4:45; it’s 4:50 now. “It’s right down the street,” I tell her. “With all the previews, I doubt you’ll miss a thing.”
After our guests leave, I check my e-mail again. I have been keeping Duke Bristow up to date about my mom’s whereabouts; when I told him she was at La Placita earlier today and my sister was on her way there, he was so relieved. “Your mother seems to have an angel looking out for her,” he wrote. I suddenly remember my mom telling me that she had once tried to gas herself in the garage, back in 1994. She said the ghost of her mom had pushed her out of the car just as the world started to fade. And another time, she said that she had taken too much Tylenol—an intentional overdose?—and when she looked in the mirror, she saw her mother’s face, the way she looked when she had died, and that’s when she knew she needed to get her stomach pumped. Stories I never fully believed; stories that didn’t get the response from me she had been hoping for. Duke Bristow now knows she has run away. “Please tell me if you successfully recover her,” he writes. “It seems you are very close.”
DEATH AND TRANSFIGURATION
ARLENE: This painting is called Death and Transfiguration, and I call it my family portrait. It’s about all of the deaths in my family. The first one, as you can see, is not connected to the bloodline—um, that was a friend of mine, who died back in 1965 [she doesn’t say this was her sister’s psychiatrist, Eli], but all the others are my brothers and one sister who died, in the order in which they died. The G is for my mother, Gertrude; the B for my father, Benjamin. So it’s a pretty sad family history. My brother Harvey, the first one to die, in 1970, was forty-two, and then Leonard was forty-five (starts to cry). Al was forty-eight, Sheldon was fifty-one; Louis, my oldest brother, was sixty when he died; Don was sixty-five, and Rochelle was sixty-five. The family history is so profound that I think it’s a story that has to be told, not just because it’s my family but because of lots of people’s families, who are dealing with this, who don’t know what they’re dealing with, who really need help in dealing with their doctors, and I think it’s crucial to pay attention to these spirits that came to me to tell this story, and it’s, I think it’s the hour of the moment of my life to be able to do this (nodding, closing her eyes as she cries some more).
Mom,
When I did my study abroad in Bali my senior year at the University of Redlands, I ended up with a bad case of Bali Belly.
I blamed the fruit ices. They had been so refreshing, those glittering mounds of mango and passion fruit and papaya snow. They had been so artfully arranged in their large glass bowl, decorated with spears of pineapple and sprigs of mint. I neglected to ask whether the water for the ice had been boiled, whether the fruit had been soaked in bleach. I don’t know why I had overlooked it; I loved the word for boiled—rebus. I loved the word for water—air. I was paying the price for being so remiss with my words. Now my language training was expanding to include words like sakit perut (stomach ache), kentut (fart), and bau (bad smell).
I was on the Indonesian island to study the local dance and music; my eyes and wrists had grown more flexible while learning the graceful, twitchy pendet, a dance of greeting, of offering; my ears had acclimated themselves to the jangly gamelan instruments. I had fallen in love with the green terraced rice fields, and the cheeky monkeys, and the women holding towers of fruit and flowers on their heads, and the tempeh satay with peanut sauce. It was my final semester of college at the University of Redlands; I had chosen to travel to the island for my study abroad with a group from the Naropa Institute, a Tibetan Buddhist college out of Boulder, Colorado. For about a week, while most of the group began their day with sitting meditation, I began (and filled and ended) my day squatting over the pit toilet in my outdoor bathroom.
I shared a stone bungalow with three women—my roommate Celia was a healer; next door were Rebecca, an herbalist and former midwife, and Angela, a nurse. If I had to be sick in Bali, at least I was surrounded by the right people.
While the rest of the group attended a cremation ceremony, Angela stayed behind to act as my guardian angel. Every time I stumbled out of the bathroom, or drifted out of sleep, I found a small gift on my bed stand—a fresh bottle of Sprite, a sprig of flowers, a bendy straw, a mini Paddington bear clipped to the handle of a mug. Rebecca—who, to my continual amazement, had one brown eye and one half-brown, half-blue, split down the center—introduced me to the pleasures and healthful properties of ginger root tea. And Celia saved me.
One day, when I was feeling feverish and fretful, she climbed inside the mosquito netting around my bed and knelt beside me. Light poured through the window cut into the stone wall, filling her curly hair with fire. The air was humid as a mouth. She put one hand flat on my stomach. I flinched.
“You’re carrying a lot of pain in there,” she said, her British accent an instant balm.
“I was sick as a teenager,” I told her, blinking back tears. I watched a lizard climb through the window, skitter across the wall. “I spent a lot of time in the hospital.”
“For what?” she asked. I could feel heat pour from her hand, through my shirt, through my skin.
“They thought it was Crohn’s disease, but that was probably wrong. I found out a couple of years ago that I have porphyria. . . .”
I didn’t tell her about my year of pretending to be ill. I hadn’t told anyone yet. It was my deepest, darkest secret.
“You have a lot to release,” Celia said. I really started crying then, but she continued, her voice as calm as ever. “I know you’ll probably want to have a baby someday, and you won’t want to have so much negative energy stored up in your belly. The baby wouldn’t like that.”
I nodded, sniffling. My period was a week late at that point, but I hadn’t said anything, hadn’t been ready to confront my own suspicions. I would find out a week later that I was pregnant with Arin, the same day your sister, Rochelle, told you she had a dream that I
was going to have a baby.
“I’m going to lift my hand,” she said, “And I want all the bad stuff in your belly to lift up with it. You don’t need it anymore. Let it go and trust in your body’s ability to heal itself.”
I closed my eyes. I felt her hand rise from my stomach. My diaphragm bounced like a trampoline. I felt a space open near my solar plexus. I felt the pain and shame of those earlier years begin to dribble out, then stream, then shoot into the monsoonal air like a sprinkler, a geyser, a fine gray spray.
RE: SEARCH II
Diagnosing Myself
MALINGERING
ma · lin · ger
/mə’liNGgər/
verb
gerund or present participle: malingering
exaggerate or feign illness in order to escape duty or work.
synonyms: pretend to be ill, feign (an) illness, fake (an) illness; shirk; informal: goof off
“he was put on report for malingering”
I didn’t hear the term malingering until I was in my thirties, or if I had heard it, I probably thought it meant something like “loitering.” As soon as a friend mentioned that a professor had accused her of malingering during a year when she was frequently ill, I looked up the definition and felt a shock of recognition. That’s what I was, I thought: a malingerer. It felt strange to know I had fit a pattern, a diagnosis, that this shameful secret, this weirdness that had seemed so unique to my family, had a clear, solid name. If I had been given this diagnosis when I was in the midst of my prolonged teenage illness, I would have been aghast. As a Latin student, I knew “mal” meant “bad,” so I would have inferred that “malingering” meant lingering in the bad. I never wanted to be associated with the word “bad” in any way at that age. Of course I knew illness itself was de facto bad, but being the sick girl had somehow bathed me in a pallid glow that could so easily pass for goodness.
The Art of Misdiagnosis Page 11
