This would not do. This would not do at all.
NOVEMBER 25, 2009
The Karens left us with a bag of little unguents and creams, herbal salves for cracked nipples and sore perineums, a tiny round jar of golden powder to help dry up Asher’s umbilical stump. When Arin and Hannah were babies, the belly button process seemed to take weeks—smelly, oozy weeks of swabbing around the stump with alcohol, being careful to not irritate it with the edge of their diapers. With just a couple of days of the sweet smelling pixie dust, Asher’s stump has fallen off, leaving a perfect, clean belly button in its wake. It’s like magic. Asher is like a magic, cartoon baby—he rubs his eyes with his fists when he’s tired; he coos—he actually coos. His skin is so soft, it almost burns my hand. He’s like this enchanted little beam of light, as if he doesn’t want us to worry about him so we can focus all our worrying on my mom.
Still, I can’t help but worry about him, at least a little. I worry I might not be making enough milk, that Asher’s nursing latch might be a bit askew. I tell my sister and she asks me if she can take a look. I lift my shirt, and there is a frisson of awkwardness. We haven’t seen each other naked since we were little girls, when our bodies were an extension of one another’s, when we took baths together, sat on the toilet back to back together, “touched tongues” to feel the electric shock that knocked us both backwards. She reaches out to touch my breast, and it feels like the weirdest thing in the world and the most natural thing in the world all at once.
The bedroom has become even more of a swamp—we still haven’t emptied the birthing tub and it’s growing more fetid each day. I don’t have the energy to figure out how to drain the thing, much less do it; I find myself getting used to its humid boggy breath.
Elizabeth screws up her face, though. “We need to take care of this,” she says, and soon a hose is snaking out the high window. Soon that soup of shit and blood and amniotic fluid is whooshing out of the tub and onto a strip of dead grass.
I watch my sister work, all decisive action and economy of movement. Her long, graceful fingers, her capable midwife hands, always seem to know exactly what to do.
ARLENE: Well, since then, she’s had negatives, she’s had positives. We don’t know if that’s a definitive diagnosis, but that certainly is not Crohn’s disease.
Mom,
Sometimes I could feel my edges getting blurry. I wasn’t sure where I ended and where the air began. I spent so much time reading and writing—as a sick girl, as a healthy girl—I often lost track of where I really was. I dissolved into ink, became blank as paper. When I wasn’t reading, wasn’t writing, I wasn’t sure who I was. When I was reading, was writing, I wasn’t sure who I was, either; I lost myself in the flow of words. I lost myself, in general.
When I looked in the mirror, I often didn’t recognize myself. Sometimes I felt like part of me had drifted away into some collective consciousness and I couldn’t quite believe I lived inside my particular skin. I would stare at my face, touch my own cheek, and barely grasp that those brown eyes, those funny teeth, belonged to me. I felt like an alien inside my own body.
Pain used to bring me back. It focused my body into sharp relief. It gave me a touchstone, a place to inhabit. But the pain had gone, and I felt lost.
I launched a new tactic: constipation. If I claimed to be constipated, I wouldn’t have to show you the contents of the toilet. The longer I went without a “BM,” the longer I could hold on to my Sick Girl identity, and the more of a quest I could generate for you. You seemed a little lost without the constant demands of my illness.
One day, two days, didn’t seem so bad in your eyes. It was almost a reprieve after all my bathroom racing. But when I got to day four, you began to get gratifyingly concerned. You gave me laxatives, which I pocketed; enemas, which I emptied into the sink.
I started to spritz Love’s Baby Soft every time I pooped to mask the smell. once you swooped in after I flushed but before I had a chance to spray the room.
“It smells a little like BM in here,” you said, voice tinged with hope.
“I just windered,” I said quickly, our family’s term for passing gas.
“At least things are moving in there,” you said. When you left the room, I sprayed Love’s Baby Soft everywhere, heart pounding. That was close. Too close.
Five days, six. I acted like I was in agony, doubling over like the good old days; you moaned whenever I did, just a hair behind me, a ghostly duet. When you talked to my gastroenterologist, he said the longest one of his patients had gone without a bowel movement was ten days. When the woman finally pooped, my doctor gave her a rose. My doctor, who palpated my belly on day six and said he couldn’t feel much stool in my colon. He eyed me suspiciously, and I turned away, cheeks burning, as you said, “Do you think her colon could be paralyzed?”
By day eight, I couldn’t keep up the ruse; I finally invited you into the bathroom to see what my body had produced, and you acted as if I had just won an Olympic medal. Still, I wanted my doctor to give me a rose; I wanted him to give me a whole bouquet of roses. Maybe even a tiara. I wanted to be queen of the sick girls forever.
My body, however, was starting to conspire against me. I was starting to gain back the weight I had lost from malabsorption. I was starting to get taller. My legs grew so fast, bright red stretch marks spread from my hips down my thighs, striping me like bacon. And then my period began. This felt like the biggest insult of all.
I hid my period from you. You didn’t hide yours from me, occasionally telling me you were hemorrhaging and showing me a toilet bowl full of bright red blood. But I wasn’t ready for you to see that I was growing up, to see that I was a normal girl. I wasn’t ready to see it myself.
I rigged pads out of folded stacks of yellow Kleenex, then flushed them down the toilet to avoid any trash-can discoveries. Eventually the pipes clogged, and I feigned confusion when the plumber came and fished out a gruesome yellow wad. I started to buy brick-like pads from the high school bathroom dispenser for a quarter a piece, the kind that came with two little safety pins to secure them to one’s underpants. I hid the pads at the bottom of my backpack; after I used them, I wrapped them like mummies in toilet paper and shoved them into a laundry hamper that held my old toys until I had a chance to sneak them out to the big garbage can outside.
One night, you and Dad hosted a business party at our house. I didn’t feel like talking to anyone, so I pretended the pain was flaring again. I had just taken a shower to get myself ready, but I put my nightgown back on and crawled back into bed. I could hear chattering and laughing downstairs, could smell wine and whiskey and perfume, and was thrilled to not have to be part of it.
A couple of guests insisted on seeing me, the poor brave sick girl, and you ushered them into my dimly lit room. One woman crouched beside my platform bed and touched my hair. It was still damp, and her hand recoiled. I was thrilled that she probably thought I was clammy with fever, not freshly shampooed.
One of the guests gave me a book: Books from Writer to Reader, signed by the author. I was known as a writer throughout my dad’s company—his secretary, Doris, often typed up my handwritten stories and poems; coworkers often read them before my dad brought them back home. I had my own little fan base there. I wondered if anyone could tell I was being author of my own illness, author of my own life. It was the best thing I had ever written.
I decided to try another round of “constipation.” This time, you convinced my doctor to have me hospitalized. I was excited at first as you checked me in to Billings—back to the place of my Sick Girl reign!—but then I went into the bathroom and realized my latest period wasn’t over. Two spots of blood splotched my panties. A nurse noticed as I climbed into my hospital bed, my gown riding up.
“Want me to get you a pad, honey?” she asked.
“Oh, no,” I said, heart racing. No one knew I had my period, and that wasn’t going to change now. “It’s just a juicy winder.”
She had no i
dea what I was talking about. Apparently not everyone shared my family’s vernacular for sharts.
“You sure I can’t get you a pad?” she asked, eyebrows raised.
I hoped she hadn’t noticed the toilet paper I had tucked inside my underpants. “No, thank you,” I said and pulled the sheet up over my body.
All the tests they took during that hospitalization came back normal. I was either in remission, or the Crohn’s disease was a misdiagnosis from the start. You insisted it was the latter, especially when my doctor told you, “We think there’s a psychological element to Gayle’s illness. We think she’s lying about the constipation.”
“They’re crazy,” you said to me as you sat at the foot of my bed. “They’re crazy if they think you’re crazy.” I nodded in agreement, tears prickling my eyes.
NOVEMBER 26, 2009
On Thanksgiving day, my mom’s green Sonata is not filled with casserole dishes as they were in my “ideal but realistic” birth story, at least not for her family; we have no idea where she might be. She could be with her friend Richard; she could be in Santa Barbara; she could be anywhere. We find ourselves half dreading, half hoping to see her car pull up outside the window. We don’t really want her here, but we want to know she’s safe.
Elizabeth and I are trying not to worry about our dad, too; he hasn’t driven this far on his own in ages. Our mom always drives when they come to visit from Oceanside, over an hour away, but he decided to make the trek in his gold Infiniti. He loves to drive, even though he usually only goes short distances; he is proud of the fact that he just renewed his driver’s license for five more years. My dad is no normal ninety-year-old. Most people who meet him think he’s seventy; when he was truly seventy, he looked decades younger—he started a whole new advertising career at that age, and worked full time for fifteen more years at an agency that revered him so much, they painted a Warhol-esque mural of him in a conference room. For his ninetieth birthday last month, we surprised him by self-publishing The Book of Wonders, a collection of funny and provocative things he wondered about (the first one being “Do birds ever get constipated?”). Before her latest breakdown, my mom helped squire away all his notebooks containing these wonders, and I transcribed and formatted them into a book, a book he wasn’t expecting, a book he’s now very proud of. He’s spry and hilarious and handsome, like a pale Harry Belafonte. When he arrives and sits down, a bit tired from the trip, I lower Asher into his lap. It’s an instant love connection. They stare deeply at one another—ninety-year-old to ninety-hour-old. They can’t stop staring.
“I’m never going to forget this,” my dad says, one eye a little blue from glaucoma, as he and Asher keep their gaze locked. “This is burned into my heart.”
In all the chaos, we haven’t planned our Thanksgiving meal, although Elizabeth and I had independently pored over Mark Bittman’s list of 101 Thanksgiving side dishes on the New York Times website last week, and we both thought the pumpkin noodle kugel sounded amazing.
Noodle kugel is one of our mom’s signature dishes, but she’s never made it for Thanksgiving. Her kugel is luscious, rich with cream cheese and egg, topped with crushed corn flakes, dusted with cinnamon sugar. A couple of years ago, she sent in an audition tape for The Next Food Network Star. She billed herself as the “Good for You Chef” and made a kugel with low-fat cream cheese, egg substitute, just a touch of agave nectar for sweetness. In the audition tape, she takes a bite and says Mmmm, closing her eyes in a self-conscious swoon, but when she fed it to us, it tasted like cement, heavy and flavorless. Not the dish’s usual golden succulence. Still, she was shocked when she wasn’t chosen for the show; she later accused Rachael Ray of stealing her “healthy cooking” angle.
Hannah and Arin are at Matt’s mom’s house, per Thanksgiving tradition, and I miss them terribly. I feel a pang as I think about my former mother-in-law’s pearl onions, the gold-rimmed goblets clinking. For twenty years, Patricia was more of a real mom to me than my own mom had been. Part of the reason it took me a long time to leave my first husband was because I didn’t want to leave her, too.
Elizabeth makes a run to Gerard’s, and returns with an abundance of grocery bags. She bought a turkey breast for herself and our dad—the only meat eaters in the house; it was barbecued in a large drum right outside the market, and smells amazing—smoky and savory. She lugs the bags into the kitchen and gets to work. Michael tries to help, but she shoos him away. “I need this,” she says, closing herself behind the kitchen door, giving herself over to the therapeutic properties of knife and cutting board, pan and heat.
She whips up a feast, a true feast, in less than two hours—roasted brussels sprouts, sweet potatoes brightened with orange juice and zest, mashed potatoes with mushroom gravy, stuffing studded with dried cranberries and pecans (some tucked into mushroom caps), fresh green beans with almonds, even the pumpkin kugel we had drooled over in the New York Times. There’s barely enough room on our small dining table to hold it all.
We eat mostly in silence—other than the near constant stream of “Wow” and “Mmmm” as we try each new dish, followed by a stream of praise for Elizabeth’s seemingly miraculous feat.
“This feels like an island in the storm,” I say, Asher tucked against my body. I know this phrase is a cliché, and I have no idea what kind of storm might be barreling down upon us, but I am grateful for this island, this lull, this peace. I am grateful to be in a room suffused with love and calm and delicious food, the air warm with all of it.
After we’re sure we can’t swallow another morsel, Elizabeth brings out a pumpkin pie made at Gerard’s. Somehow we manage to devour it, groaning with each sweet, smooth bite.
My dad says he needs to close his eyes before he attempts the drive back to Oceanside. Asher is drifting off in my arms; I know this is my cue to nap, too.
“Why don’t we lie down together?” I ask my dad. Elizabeth and Michael wave us off to the bedroom as they start to clear the table.
With the birthing tub gone, the room feels lighter now, fresher. The sun melts, buttery, through the small windows.
My dad slips off his New Balance sneakers, the only shoes he’s found that fit his long, flat feet, and climbs into our bed. We changed the sheets right after Asher was born but haven’t removed the waterproof mattress cover that was part of our birth preparation supply list; it crackles as my dad slides over to give me room on the pale-purple flannel sheet. I scootch to the center of the bed. My dad falls asleep almost immediately; he sleeps on his back with his mouth open and it freaks me out a bit—he looks so much like a corpse, I check to make sure he’s still breathing. Asher, nestled against my side, is asleep, too; so soundly, I keep putting my hand on his chest to check for his breath, as well. As tired as I am, I can’t seem to nap. I lie between my dad and my baby—ninety years old, ninety hours old—and it occurs to me this is the purest experience I’ll ever have of middle age. Here I am, firmly—sweetly—in the middle of our spacious generations, dead center between the edges of human existence, listening for signs of life.
[CUT to outside shot of Medical Center West Los Angeles, then back to conference room with DR. NEVILLE PIMSTONE, gastroenterologist; DESIREE LYON HOWE, founder/executive director of the American Porphyria Foundation; and MIRA GEFFNER, porphyria sufferer.]
ARLENE: Now, one other symptom you didn’t mention, and I know it can be very prevalent, is violent episodes of vomiting and regurgitation, and my daughter has had episodes like that, where she would become totally dehydrated if she didn’t get to an emergency room setting or have medications that would stop these episodes.
[DR. PIMSTONE, HOWE, and GEFFNER all nod in understanding, and it is strange for said daughter to watch this, as if she is watching a panel of judges determining her fate.]
[Cut to screen that says acute porphyria can be misdiagnosed as Crohn’s disease or other inflammatory bowel diseases.]
ARLENE: Is that very common in porphyria or not as common as these other symptoms?
DR. NEVILLE PIMSTONE: I think you’ve just underscored one of the key reasons for guidelines. The symptoms that you mention are nonspecific; there are so many reasons for vomiting and nausea and abdominal pain that to think of porphyria is just one of the many things one could think of. There are many more common causes for nausea and vomiting, but if one thinks porphyria, yes, this can be a presentation because the metabolic reason for the attack is that the small molecule which goes up in making the porphyrin heme can affect the nervous system which controls the movement, the motility or the movement, of the bowel. It affects the way the stomach empties; it affects the way the small bowel contracts, and that is probably the basis for the abdominal pain that occurs and for the nausea and vomiting that occurs. [Daughter hears this and starts to wonder: Maybe it really is porphyria. . . . Those symptoms do sound familiar. . . .]
Mom,
My constipation tactics may have been a bust, but they left me with an abundant stash of laxatives. I discovered that if I took four of the small pills at a time, I would get diarrhea.
“See,” you said to my doctor after I showed you the results in the toilet. “She’s not making this up.”
“Maybe it’s irritable bowel,” he said. “Alternating constipation and diarrhea points to it. Maybe that’s what it’s been all along.”
“It’s not irritable bowel,” you insisted. “She had the cobblestoning.” You were pretty sure the Crohn’s was misdiagnosed, but in my early X-rays the classic Crohn’s ulcers had lined my small intestine like a European road. You didn’t want the word “irritable” attached to me—and to you, by proxy.
The Art of Misdiagnosis Page 8
