ID: 59 year old woman with no past medical history presents with Budd-Chiarri Syndrome. Lives with husband. Works speech therapist.
“Lea is here,” my Dad greets me, as I walk through the sliding glass doors, spitting me out of Customs. “She’s with Geoff, over there.” He points to a crowd next to the baggage carousel. “They’re back from Honduras.”
I put my purse on the wire baggage cart my father has brought. I wheel it toward the carousel, watching my blue backpack riding by. I chase it, grab the bag and haul it onto the cart. We head to carousel B.
“Lea,” my father exclaims as he stops next to a man I recognize as Geoff. “Miri is here.”
I am confused until I look down, and see a thin, grey-haired wrinkled women, in a wheel chair. Lea? “Lea,” I bend to give her a hug, noticing her bones under my embrace. “How are you feeling?” I ask as I stand up again.
“I’ve felt better,” she smiles. “Just glad to be home.”
“It’s so good to be out of that hospital,” adds Geoff. “They said her shunt should be good for awhile. It was crazy being in the States for all this. Los Angeles was the closest place we could get help.”
Lea frowns and looks down at her lap.
“We have to get going,” Geoff tells us. “She gets worn out easily.” He gets behind the wheelchair and grabs the handles.
Lea smiles again and closes her eyes. Geoff whisks her out the sliding glass doors, into a gray winter day.
“What’s going on?” I ask my father as we watch the doors
close behind them. “Why is she in a wheel chair? She’s so skinny. She looks so old . . .”
“Her liver,” my father replies. “Something wrong with her liver.”
‘What? Hepatitis?” I speculate, wondering if she contracted
it in Honduras. “Don’t know,” he sighs. “They had to fly her to California. Josh and Emily flew there, too. She had two operations. They were worried she would die.”
“She’s very sick,” my Dad nods his head and looks at the floor. I glance at him, then gaze at the linoleum at my feet. My father gets behind the luggage cart, “Let’s go.” He pushes the cart alongside me through the sliding glass doors, stepping into the cold air outside.
A blob of brown clay sits on a wooden table. I have already created a few lop-sided vessels tonight, and am ready to give up on the wheel for now. The fluttering in my throat and under my sternum distracts me, muddling my breathing, scrambling my thinking. I stare at the earthen loaf in front of me. My fingers finally grasp the mud dough. I start kneading, pulling with my fingers, pushing with my palms against the hard surface underneath, gathering, rolling, turning. . . . I take the bundle off the tabletop in both hands, pat it into a ball and place it back on the table.
I grab a green wine bottle, and roll it over my sphere to mold a thick pancake. I dive into my knapsack and pull out my pathology textbook, laying it on the table. I flip it open to find a couple sheets of wax paper and extract green birch leaf between them . I place it on the clay and roll the bottle over it. I repeat this a few times. Looks like fossils of leaves.
I cut around the shapes, and lift the clay leaves, pinching their edges before putting them back on the table top. I trace and cut out the Hebrew letters, Chet, Yood : “Chai”. Life. My hands intertwine letters with leaves.
Fluttering creeps up my thorax into mthroat. Breath.
Through your nostrils. Breath. Breath again. A few minutes later, my eyes assess the bowl, smooth on the inside, rugged on the outside.
I will glaze it green.
Lea will like this.
I don’t know what else to do.
From across their dining room table, I hand them the info I printed from Medline, about Leidig V clotting factor heritability, and give a quick summary. They thank me. Don’t know if it’s any more than they already know. Hope it helps Emily and Josh figure out whether to go ahead with genetic testing.
We are in their living room. I sit on the beige shag carpet. Geoff is perched on the sofa’s brown velvet cushion. Lea is tucked in her throne, a curved seat covered in white woven wool, hands resting on her lap: a serene, frail, queen in a long white Mexican gown, embroidered with red, orange and green daisies, down her center.
The backdrop is a quilt from Guatemala, hung on the wall.
Her surroundings and colorful dress say “Lea”, reminding me
of countless Thanksgiving meals and multi-cultural cocktail parties hosted in this house. I’d often retreat to help Lea out in the kitchen. We’d chat of travel and art.
“I’m sorry I can’t stay up long,” apologizes Lea. “I get so tired so easily.” She puts a hand on each side of her abdomen, bulging under her dress.
“I have something for you.” I crawl to the mantle behind me to grab a brown paper shopping bag and place it on her lap. She reaches inside, retreiving a flower of pink crepe paper. The blossom opens to reveal a silvery black stone.
“Obsidian,” I explain. “For the blood.”
“Thank you,” Lea smiles as much as she can.
“There’s something else,” I note. Lea looks inside again, and looks at Geoff. “Can you open it? It’s too much for me.”
Geoff leans over toward her and takes the bag off her lap onto the carpet in front of him. He puts both hands into the bag and takes out a white cardboard box, cradling it in his large hands. One hand opens the top, plunges into a nest of white tissue paper and surfaces holding a gleaming moss tinged earthenware vessel.
“I made it in my pottery class,” I point to a green edge. “It’s made of leaves and,” I point to a brown curve, “Chai“.
Two years later, I am back in my hometown, after the first
few months of my psychiatry residency. Relieved to back in familiar territory, I look forward to my month of elective: palliative care.
Although the unit is tucked up on the eight floor, its halls dingy and morale fragile due to repeated budget cuts, I find the staff are friendly and my Buddhist preceptor is like-minded. He brings me articles about opiates, humanistic charting and contemplative psychology. I spend mornings on the unit and afternoons with the team on house calls. Each day, I arrive, noticing which beds are now empty or occupied by a long white plastic bag. I am reminded of the ICU. This is darker and quieter. No beeps to alarm anyone of death drawing close.
“Mr. Parker just passed away,” announces a nurse as she enters the small staff headquarters, where Dr. MacIntosh and I are huddled, writing orders for morphine and Oxy-Contin in patient charts.
He turns to me, “Have you ever pronounced someone dead?”
“No,” I reply. “Let’s go,” he stands, takes the stethescope off the table, wraps it around his neck and strides out of the room.
I follow, stethescope already adorning me. We walk down the hall to Mr. Parker’s room, step over the threshold and head to opposite sides of the bed. Here lies Mr. Parker, glazed eyes and gnarled mouth frozen open.
I am relieved Dr. MacIntosh is here with me, consecrating this moment, knowing that in the future, death certificates will likely be signed alone, in a sleep-deprived haze. Facing me, Dr. MacIntosh puts the ear pieces of his stethescope in place, lifts the white sheet, takes hold of the head of the stethescope and places it on the left side of the motionless chest. I mimic him, placing the head of my stethescope next to his.
I hear waves of air exitting my nostrils.
New Year’s Day.
“Lea’s in the hospital,” reports my mother. “Two days after their anniversary. Forty years . . . ” My mother stands at the kitchen sink, staring at a purple jar on the counter. “Can you go visit her? I can’t face it.”
“I’ll go tonight,” I reply.
“Good,” she hands me the jar. I see it is blackberry jam. “Take this.”
I enter Six West and walk down a familiar hallway, entering room 209 of the GI ward. Lea is in the bed on my right. Geoff sits next to her, reading a magazine. He stands up when he sees me, “Miri,” we hug. “Thank you for coming.”
Turning to Lea, I smile and lean over to kiss her cheek.
I hold out the purple jar, “My mom sent this,” and place it on the night stand.
“She’s been so wonderful, driving me around, waiting with me at appointments,” she responds. “She made me a huge jar of matza ball soup. And challah. I just wish I could fully enjoy it.”
“And your dad keeps dropping off supplies at the house,”
adds Geoff. “Your folks have been great. Good people. Really good people.”
“Hearts of gold,” whispers Lea.
“I know,” I agree. I reach into my coat pocket. “This is for you too.” I hand Lea a little bundle made of paper and a fir branch. She reaches her finger into the cardboard tunnel, pulls out the folded paper, opens it and reads my hand-writing.
“I close one eye. I close the other eye. Now, I see. . . . . from the Talmud” Resting the card on her chest, Lea stacks her hands atop of it and closes her eyes.
January 2, 1998. 8:10am
I step past the nurse’s station into the ICU, scanning the beds for my destination. Geoff catches my eye. I stride past gurneys to a bed in the corner, where he stands. There lies Lea, eyes smiling, mouth immobilized by the plastic doughnut between her teeth, attached to the tube that reaches down her throat. I try to hide my wince as I bend to kiss her bony cheek.
“She almost stopped breathing last night, so they had to put in an airway,” Geoff tells my back. “They hope it can come out in the next day or so.” He pauses. “One blink is yes. Two is no.”
My breath sounds loud to me. I lean toward Lea, “Are you in pain?”
Two blinks. “Can I do anything for you?” Two blinks. “My mom and dad send you their best. We’re all praying for you.” She motions with her IV tubed hand toward a folded piece of paper and pen on the table next to her head. I hand it to her and watch her scrawl letters on the corner of white paper not yet filled with similar markings. “Send them my love.”
“I will. Definitely.” Stumped for more words, I stand up.
“I have to go.” I hug Geoff. “I’ll be back.” My knees bend, bringing my lips close to Lea’s ear. “I’m sending you angels.”
Her eyes sparkle as she reaches for my hand. My fingers squeeze her palm and reluctantly release. Legs straighten and propel me out into the hallway, where I hide my contorted face.
January 3, 1998. 12:08pm
At lunchtime, I venture a floor above the Palliative Care Unit, to see how they are doing. I enter the Family Room, to find Josh, Emily and Geoff sitting on the pink vinyl furniture, strewn with wrinkled white-cased pillows and brown acrylic blankets. Emily is reading a magazine, as Geoff and Josh, the speech pathologist and veterinarian, hover over drawings on a brown paper bag between them, discussing anatomy. “They have to get the tube into the portal vein…”
I tap Geoff on the shoulder and wave when he turns to face me. Geoff spins around, stands up and hugs me, “Miri!”
Emily looks up, “You look so professional.”
“I’m working downstairs,” I become aware of my white coat. “How is Lea?” “They’re doing more blood tests,” explains Josh. “Hoping she’s strong enough for a transplant. They’ve got a liver. Have to fly it from New Brunswick. Dr. Hashem thinks it could work, if she can just breath on her own.”
Geoff walks to a white board on the wall. He takes a black marker from the ledge at its base and draws a couple of lines. “They have to hook up . . . ”
I turn my attention away from him and sit with Emily. She puts down her magazine and I see the gray crescents under her eyes. “They said Mom is in ‘critical, but stable’ condition.”
I ask if there is anything I can do for them. They offer no suggestions.
I stay with them for the few remaining minutes of my break.
January 4, 1998. 5:50pm
After my workday, I walk up the flight of stairs. My visit a couple of hours ago found Lea sleeping in her corner of the ICU, and the Family Room filled with a a few people I did not recognize. This time, Josh and Geoff are pacing the hallway.
“What’s going on?” I ask.
“They took the airway out,” reports Josh. “She’s breathing on her own. They’re preparing for surgery tonight. It’ll be a lifetime of immunosuppression. Tons of drugs each day. . . . but we’ll help her. Lots of people manage . . .”
“They cut along the portal and hepatic vien,” explains Geoff, leading me into the room, to the white board now covered by more elaborate black-markered diagrams. He points to one of the double lines. “They cut here and –”
“No, Dad,” Josh interjects. “It’s the hepatic vien not –”
I am dizzy, searching my mind’s filing system for the section entitled “liver anatomy”.
Emily rests on the couch, knitting. I join her. “How are your kids?”
“They’re fine,” she replies. “Matt is home with them. They don’t know what’s going on.” She sighs. “I don’t know how to explain why grandma hasn’t visited in so long.” She keeps her gaze on the yarn and needles in her fingers.
I stand up again, hug each of them and wave as I exit the room, buzzing with their new optimism. I glance in the ICU. Lea’s eyes are closed. I do not disturb her.
January 5, 1998. 11:04 pm
The black and white stripes of the fish in the aquarium at the base of my boyfriend’s bed distract me, for awhile. Before we go to sleep under his forest green sheets, I phone my parents for an update.
My father answers. “Lea had to have an operation today. Didn’t go well. Geoff called a few hours ago and said she was bleeding a lot.”
“So, how is she?”
“I don’t know.”
“Is she alive?”
There is a pause. “I don’t know.”
I hang up the phone, and curl into warm arms.
January 6, 1998. 8:30am
I sit in Dr. MacIntosh’s office, fidgeting with my stethescope. We had planned this meeting to wrap up on my final day of the rotation. My eyes dart around the room, my hands interwine, unravel, interwine again . . .
“Are you okay?” asks Dr. MacIntosh as he places a file folder on the table between us.
“No,” I reply. “No, I’m not.”
“Would you like to share what is happening?”
“I think a close friend of my family just died,” Iexplain. “She’s been upstairs in the ICU this week.”
“What would you like to do?” My breathing quickens. “Can we meet in the afternoon?” Dr. MacIntosh agrees and I leave the room.
I call my parents’ home.
“Dad went to the hospital to find out what’s going on,” my mother informs me. “Geoff called at eight and said they were all going there. We haven’t heard anything since.”
“So you don’t know if . . .”
“Can you find out?”
I climb the flight of stairs to the Family Room, and find it empty. On to the next stop.
The ICU is busy with its usual chorus of beeps and blips, monitoring the hearts and lungs occupying the room. I enter, spying the charts lined up on the cart against the wall. “Lea Manser,” says the black marker on one blue binder’s spine. Resisting the temptation to look inside, I walk through the room towards Lea’s bed. As I move closer, I see the curtains are drawn closed.
Are Geoff, Jonah and Emily still with her? I walk to the opening in the curtains, and peak inside. On the bed is a long zippered white plastic bag.
I dart out of the unit, through the corridor into the first empty room I find. Sitting on the bed, I lean over, head in my hands, taking quick, shallow breaths. I wish I would sob, cry, wail but the waves in my belly and throat are left mercilessly unreleased.
Have to call.
Catching my breath, I reach for the telephone on the table in the room and punch my twenty year-old home phone number.
“Miri! Where are you?”
“At the hospital.”
“Dad’s back. He couldn’t find them. Do you know what happened?”