I have spent countless days in hospitals: Someone checks you in, you fill out papers, they take copies, you wait. Someone else rolls your son in a wheelchair down the wide corridor, past the grand piano where elderly volunteers play “Let Me Call You Sweetheart,” up the elevator to a private room on the sixth floor where you’ve been before. You follow behind, making small talk and smiling, packing the necessary equipment – cell phone, laptop and an unread book – you will need to stay occupied while you wait. And wait. You wait for blood tests and x-rays and doctor visits while you play with your cell phone, downloading worthless ring tones and pictures of purple mountains you will never look at again. You watch the black shadows move down the concrete walls on the buildings outside the window. You rub your son’s palm with your index finger, the way you did when he was a baby. You try to read, but your eyes blur. You fill up the room with balloons from the gift shop, because no one even knows that your son is in the hospital, again, and no one sends balloons or stops by or calls. So you fill in the space.
It’s May 2004. My son, Zeke, is in the hospital this time for a heart transplant evaluation. I try to act confident and cheerful and ask appropriate, intelligent questions of the doctors and social workers from the transplant team or the nurses who visit Zeke’s room unannounced, twenty-four hours a day. When a doctor says he will be in to see you in the morning, it may be noon, or it may be evening, or it may be tomorrow morning, or he may have come while you stepped out for ten minutes to bring up a tray of tomato soup and iceberg lettuce from the basement cafeteria and you missed him but no matter because he will be back tomorrow, or maybe not, and the nurse will contact him, or maybe not. And then, after two heart catheterizations because one is not good enough, they finally have some results to share and a treatment plan and the results are all bad and they have no plan because there are no real options and they tell you your son has “a year-and-a-half to two years to live” unless he has a heart transplant. Blood work reveals he has Hepatitis C (this is a new thing!), no doubt from past blood transfusions, probably cirrhosis of the liver from the Hepatitis, and his lung functions are extremely poor (you knew that) and consequently he may not be a candidate for a transplant and the transplant team quits visiting; they will change his medications and send you home – and discuss him in conference next week and let you know. And they tell you that he has “reached the normal life span of a child with a heart condition like this” and they tell you again that there are really no good options and his pacemaker is not working right and his mitral valve is leaking but they are not certain it would be worth the risk to open his chest again to fix these minor problems. I sit and smile at the doctors with my lips closed and I purse my lips wisely and nod my head and laugh a lot and I try to find something to be hopeful for because Zeke is sitting in the room with me and I want to act brave and optimistic for him because I am still the mother and he still leans on me, a lot. I squeeze my eyes and don’t let one little teeny drip escape because I know there are gallons more where those come from and I have learned after countless hours curled up on bathroom floors sobbing: There is no such thing as a good cry.
I was twenty-four when Zeke was born. Young and naïve about everything, but who knew about birth defects? When people asked if I was hoping for a boy or a girl I replied, “Oh, it doesn’t matter, as long as it’s healthy.” That was in 1978, prior to testing to determine the sex or complications before a baby was born. Zeke had his first heart surgery at three days old.
He was a “blue baby,” doctors said, born with a missing ventricle: a three-chambered, scrambled heart. Tricuspid Atresia, the official diagnosis, means the tricuspid valve never opened and consequently the lower right chamber never formed. Mike and I stared at the cardiologist who gave us the diagnosis. “So this is serious?” I asked, wide-eyed. “Very serious,” he said.
A five-pound-ten-ounce infant, the surgeon operated on Zeke under a microscope. They didn’t have a corrective procedure for Zeke’s defect so the team of surgeons created a shunt; they re-routed the main artery to the right arm into the lungs to provide more oxygen to the blood. The cardiologist came out mid-procedure and told Mike and me they didn’t expect Zeke to survive. I folded my arms across my chest and stared at the floor. The vessel they were trying to sew into was “like wet tissue paper” as the doctor described it, and would collapse if they attempted to suture it. “We’re standing around meditating,” he said.
I locked myself into the waiting room bathroom and did my own meditating – forehead flattened into the mirror, my hands stripping milk from my swollen breasts into the porcelain sink, the antiseptic soap smell making me nauseous. My legs buckled and I slumped to the linoleum floor, head held on my knees, sobbing in silent gasps, praying – no, demanding – that my baby survive. “I want this baby,” I told God. “Please, please, please, please, please,” like a child begging for candy at the grocery store.
Eight hours later a nurse ushered Mike and me into the neo-natal intensive care unit. “Scrub your hands to your elbows for a minute,” she told us softly, then led us to a tiny, naked infant, arms and legs outstretched and strapped to a table, warming lights blaring over his head. The baby was crying but not making a sound – a breathing tube was stuffed down his throat. My God, I thought at first glance, that’s somebody’s baby.
We ate and slept at the hospital. At night we spread out a thin piece of foam on the waiting room floor and buried ourselves in the white cotton blanket the nurses provided. In the morning we rolled up our meager bedding and wadded it into a closet.
Four weeks later we walked out the hospital door, Zeke cradled in my arms. We took the first picture of his sleeping face swaddled in a blue flannel blanket. If Zeke was a cat, he had lost his first life. The morning we finally emerged from the hospital, I was startled by the colors. The air was blue and crisp, the sumac brilliant orange and yellow, red maples glowed gold in the sun. What a welcome to the land of the living. I took off my shoes and let the dew-covered grass cushion my feet. I have rarely felt more alive.
The two-year death sentence ended. The hourglass emptied. Zeke didn’t die. He is twenty-eight and has out-lived everyone’s best guesses. Sallow-skinned, arms and legs thin as kindling, eyes sunk, bloated belly, multiple chest incisions, ankles deeply scarred from ulcerations due to poor circulation, a tiny scar on his small left index finger from a paint-scraper I dropped on him while scraping porch windows from a ladder when he was three, short, dark-haired, going bald at the peak from twisting his fingers in his hair, wisps of hair trying to be a beard, Polish nose, eyebrows ramping over the bridge, sweet, gentle, and soft-spoken: Zeke lives alone with his cat, Tigger, in a low-income apartment in Kalispell, Montana. He lives alone by choice. After high school he spent a year at a Bible College, living on campus, then moved back to Kalispell and into his own apartment. He had a good job for four years after college as a video-editor for a TV station, until he grew too sick and missed too much work. Now, he wakes about noon every day, sometimes showers, sometimes not, and opens up his laptop to connect with his only “friends” – his internet circle. In the past two years he has been scammed by Nigerian sleazeballs professing true love and the desire to have his babies if only Zeke would send them money for a ticket to come to the U.S. to live with him till eternity. His current “girlfriend” lives in Florida, ten years his senior, has five children that have all been taken away from her by the state, is on welfare, married, living with an abusive husband and his cousin and four children in a two-bedroom trailer.
About three in the afternoon Zeke might drag his disheveled self out of bed for a hot dog with gobs of mustard and mayonnaise and an ice glass full of Gatorade or lemon tea. He leaves the dirty plate on the kitchen counter or the tiny red coffee table in the living room. He might turn on “Dr. Phil” or a professional wrestling DVD, maybe play a Wii racing game, eat frozen pizza for dinner, or instant-message his friends. Some days I can coax him out of the apartment for a trip to Best Buy or Target. He doesn’t have much energy to get out of his hovel. I gather his dirty clothes once a week and haul them to my house. He has a housekeeper that wades in once a week and scrubs the toilet, washes dishes, freshens the cat litter, changes the bed sheets, hangs up new bathroom towels and pushes a vacuum. Every month or so I scour, trying to be respectful of his space but filling a personal need to keep him clean. I defrost the freezer, suck out the corners of the rooms layered with cat hair, shampoo the couch and recliner chair, shove furniture around to vacuum, dust, destroy moldy sub-sandwiches left half-eaten in his fridge, wash windows, and hang scented air fresheners. He prefers canned chicken soup to my homemade variety, frozen lasagna to home baked, bottled spaghetti sauce to slow-simmered fresh tomatoes and spices and meatballs.
There are other things to worry about besides his poor eating and cleaning habits. Zeke has esophageal varices – bad veiny things in his esophagus – a complication of cirrhosis that could rupture. It would be nearly impossible to stop the bleeding, I am told, because he is on massive doses of Coumidin, a blood thinner, to prevent the possibility of stroke due to the poor circulation and pooling tendencies of his blood. An internal pacemaker paces his heart and one of the leads screwed into the muscle of his heart wall is inoperative. His abdomen is full of ascites fluid, also a consequence of cirrhosis, which is drained via a paracentesis procedure; every two weeks he is admitted for an outpatient “tap” to suck out the accumulated swampy red liquid pressing on his organs. If this fluid infects, it could kill him in twenty-four hours. All this besides the fact he is experiencing heart failure, liver failure, and his oxygen saturations hover around eighty percent. If he sleeps late, past three in the afternoon, I’ve been known to drive over to his apartment to make a surprise visit. I breathe a deep sigh when he answers the door.
Zeke is alive, but is this a life?
I give pause and respect to those terminally ill who choose assisted suicide. Eighty-percent of total medical costs are accrued during the final six months of a terminally ill patient, keeping them pain-free and their vital organs medicated to help them function at their maximum. You and I pay for this medical care through escalating insurance costs and pharmaceuticals. But who pulls the plug? Who stops the medications? Who decides when a life is not worth living? Or is worth saving?
I spend days trying to find hope in the face of hopelessness, trying to stay useful. Make-believing that life has happy endings, trying to make a life. Remembering that all endings are new beginnings.
It is July 2007. I am in Zeke’s apartment for the afternoon. The two of us are watching Charlotte’s Web, sipping sodas; he is laying on the couch, his feet in my lap, socks off, home from his twenty-third or forty-eighth–I can’t remember–paracentesis procedure this morning at the local hospital where they drew off five liters of fluid from his one hundred twenty pound frame. It is eighty degrees in his apartment and he is wrapped in a down comforter. I am rubbing his feet and ankles with peppermint cream, massaging the soles, the toes, his hands locked behind his head, his head tilted sideways watching the new flat screen TV Mike and I bought him for his birthday. Tigger is sprawled on his belly kneading his sweatshirt with clawless paws. A great white grin spreads across Zeke’s face as Charlotte writes magic words in her web to save Wilbur’s life: “Some pig.”