‘A door with a broken hinge’
As a father waits to learn whether his deathly ill daughter will live or die, he struggles to learn the lessons of letting go
A woman sits across from me, the left side of her face swollen about twice its normal size. I have had the opportunity to study her injury surreptitiously for nearly three hours and, in my non-medical judgment, someone clocked her with the intent to do grievous bodily harm. And succeeded. Just looking at her face grieves me; I suspect that her cheekbone is fractured.
It is 4:30 on a Sunday morning. There are about a dozen people waiting in the emergency room. One of those people is my daughter, next to me, mysteriously ill with numbness in her feet and buttocks. She’s managed to live three decades without serious illness, but, though we don’t know it yet, her luck has just run out, and she squirms on the molded plastic chair, uncomfortable, worried, miserable.
She had come to the ER the night before, and the night before that, but left it each time after waiting for hours to be seen. The first time she left in frustration without being seen at all. The second time she was seen by the triage nurse after a six-hour wait, then sent away with a prescription for an anti-depressant. We have returned to the hospital because her symptoms are getting worse, and she is very sick.
But not sick enough to be admitted. If you’re an impatient patient, and you want to be admitted to the presence of a doctor in most any big-city emergency room on a Saturday night, it’s best to come bleeding. Admission to the hospital seems to go according to the old newspaper adage—if it bleeds, it leads. The triage nurse has admitted several bleeding young men ahead of the people in the waiting room, young men who have been stabbed or bludgeoned in the usual Saturday-night full-moon follies.
There are television sets mounted from the ceiling at either end of the room. A mother and four children cluster below the one farthest from me, watching cartoons. The youngest child is about 3, and she is red-eye tired, but remarkably well behaved. Her mother has gone to the triage nurse four times since I arrived with my daughter, asking each time if there is any estimate of when she might be seen. She loses her temper on her last visit, raises her voice, says: “This is ridiculous; I’ve been waiting 10 hours.”
I strike up a conversation with a middle-aged man who has been waiting six hours. His ailment does not appear life-threatening to the triage nurse, and so he waits, and we both complain about the system that has entered us, unwittingly, in a lamentation lottery.
“At least it’s better than what the Canadians have,” he says. “They have socialized medicine up there, and they don’t have a choice.”
I marvel at the capacity of the human mind to delude itself and then comfort itself with those delusions, how the power of a phrase like “socialized medicine” can trump immediate personal experience.
Another hour drags by. My daughter nudges me awake with an elbow, suggests I go home. “There’s no point in both of us sitting here, Dad.”
It takes a half hour of further encouragement to leave, and then I kiss her on the cheek and on the forehead, tell her to call me for a ride after she’s been seen, and I go home in the dawn’s early light.
Now, years later, the crisis past, I feel guilt about having left her that morning. At the time, I was busy telling myself that there was nothing seriously wrong with her, that she was simply suffering a stress reaction to the end of her first year of teaching, that she was, most probably, over- reacting, and that once she was seen by a doctor, prescribed some bed rest, given a bit of time to catch up with herself, all would be well.
Besides, I told myself, what good was I doing there? There were other rationalizations, but I can’t escape the suspicion that I left because I was tired, because the emergency room was so unrelentingly dreary and depressing, and because I wanted desperately to stretch out.
Four hours later, my daughter calls to say she’s been seen by a doctor and has been turned away once again, told to rest and come back if her symptoms worsen. My wife goes to pick her up. When they come home, I am shocked to see that my daughter’s walk has been transformed into an awkward lurch. By the next morning, she can barely stand.[page]
She has spent Sunday night awake, scouring the Merck Manual and other medical books, and she has arrived at a self-diagnosis: Guillian-Barre.
I read the symptoms, and though they seem to fit her condition, I reject her diagnosis. If you were her father, you would, too. This is a serious illness, and serious illnesses strike other people’s children, not yours. And not mine. Especially not mine. Not Kelly.
I take her back to the emergency room on Monday morning, where we once more sit for hours with other wretches. At long last she is taken in for examination, given a bed in a circular room with perhaps 30 beds separated by curtains.
The doctors order a battery of tests, but like me they reject her self-diagnosis. The consensus of their opinion is that my daughter is having some kind of psychosomatic freakout. That was their diagnosis three long visits ago, and they’re sticking with it, even though her physical deterioration is forcing them to reconsider. I think now that for some of those doctors her self-diagnosis was seen as a presumption, a layperson’s unwelcome intrusion into their exclusive domain, and I think it may have further delayed their willingness to see what she had.
The doctors don’t inspire much confidence in any case; this is a teaching hospital, and the emergency room is staffed largely by residents. They are impossibly young-looking, and it feels as though I’ve entered a Twilight Zone episode where I’m forced to entrust my daughter’s health to the care of children. They are earnest, and they are surely working hard, but I harbor the suspicion that they all have Barney figurines on their key chains.
More hours pass. The doctor who supervises the ER comes with a clipboard to talk to us. He has an unlined face. There are two perfect streaks of grey at his temples, the kind of nod to age one sees in a high school drama production. He says that it may be that my daughter does, indeed, have Guillian-Barre, that Guillian-Barre is an auto-immune deficiency disorder, that they don’t know what causes it, that it can be debilitating in the extreme, that it strips the nerves of the protective myelin sheath, which is why she is losing the ability to walk, and that it paralyzes its victims so severely that it even shuts down the respiratory system. It’s clear he’s read the same book my daughter read, and gave me to read.
He recommends that she be started on a plasma exchange, a treatment that, essentially, washes the blood, a treatment that is not without risk due to dangers of infection. Without the treatment, however, the prognosis is not good, and those risks are certain—paralysis and, in the best-case scenario, a slow, painful, and strenuous path to recovery.
So there is, really, no choice, though were there a choice, it would not be mine to make. Despite the fact that my daughter is well beyond the age of emancipation, it still comes as a surprise that I no longer have a determining voice in her care or her destiny. Years ago, I wrote a piece about teaching her to ride a bike, a piece I called “Letting Go.” A friend read it and said, “This isn’t a piece about letting go; it’s a piece about not letting go.”
Not letting go is what parents do. Though we relinquish control in ways too many to count, we do not let go, not really; we do not let loose the fear, the joy, the worry, and the love that were the endowment our children brought with them. For all of us, the prospect of their deaths, the big letting go, is simply not a permissible thought, until or unless we are standing in an emergency room, speaking to the face of Death in the guise of a prematurely graying doctor with the face of a child. Even then, denial rushes to our side and whispers: “He doesn’t know what the hell he’s talking about,” or “There is surely a mistake.”
We are left in a cubicle, waiting for tests and results of tests. The emergency room bustles with activity. My daughter is thirsty. She has been seven hours without a sip of water. A male nurse is chatting with another nurse just feet away. I go and ask if my daughter might have a glass of water. He asks the nurse on the nurse’s station if my daughter’s fluids are restricted, is told they aren’t, and then he slips back into conversation with the other nurse, talking about the past weekend’s activities. I return to my daughter’s bedside, and I wait. More to the point, my daughter waits. We wait until my patience is exhausted—nearly 20 minutes—at which time, I go back out to where they are talking and say, “Just give me a goddamned cup and I’ll get the water myself.”
This is my introduction to the unevenness of nursing care, the quality of which is to run from saintly to slovenly. People I have spoken to since have all confirmed the experience—there are nurses sublime in their goodness, and there are nurses both incompetent and slothful, rather like the range of people in any profession, except this one often plays dice with life and death.
In time, my daughter is admitted to the hospital, taken to a room, and I am sent away. My wife and I come back that evening during visiting hours. Her treatments are not yet ordered; there is still a disagreement among the doctors as to the diagnosis. I can see she is getting worse. By the time visiting hours are drawing to a close, she is having trouble breathing. An older nurse comes to shoo us out, but I protest. She says they are going to give her something to help with her breathing, and she reassures us that our daughter will be fine.
At last, I relent, take my wife’s elbow, and edge toward the door. The truth is, had I more courage, there was nothing that nurse could have done to get me out of there. The truth is, I left because I could no longer bear seeing my daughter in such discomfort. And I’m pretty sure that the same is true of my wife.
The next morning I return to the hospital alone because I am off work, and my wife is not. I get off the elevator at the fifth floor, proceed to the room where I’d left my daughter the night before, and my heart catches when I open the door to find her bed empty and made up. I hasten down the corridor to the nurse’s station. A nurse sees me coming and says, “Oh, didn’t the doctor call you?” and my clutching heart wants to leap from my chest. “No,” I say, and she says, “Let me call him for you. Just take a seat over there.”[page]
And I do, with the docility that comes over people when ordered around by people in white uniforms. For 15 minutes, I wait. For 15 minutes, I try to face the worst fear a parent can face, but it is like a door with a broken hinge, swinging open only to have me slam it shut, at which time it swings open again.
A doctor approaches, one I don’t recognize, not so young as the other, an Asian man with a slight accent. He tells me that my daughter had a very bad night and she has been transferred to intensive care, where she is resting comfortably. They’ve decided to proceed as if the diagnosis is sure, that the plasma exchange will begin that very day. I am told when I might visit, then sent away.
I call my wife. We return to the hospital and hurry to the ICU. We are buzzed in. A shock awaits us. Our daughter can no longer talk. She is hooked up to a respirator. An IV tube is in her forearm. My wife clutches my hand until it hurts, but she braves a smile for Kelly, a smile Kelly returns, though fear haunts the edges of that smile.
Within 48 hours, our other daughter is on a flight home from Paris, where she has lived for a long time. By now, Kelly communicates by pointing at letters we’ve pasted on a piece of cardboard, along with the words “yes” and “no,” an improvised Ouija board over which my daughter is the guiding spirit.
When her sister enters the room, Kelly brightens visibly, though I am sure her sister’s arrival also telegraphs the seriousness of her condition. Still, she is the picture of courage, picking out a greeting on the little cardboard alphabet. She has had one of the plasma exchange treatments; there are four more to go.
I am convinced that those treatments were not the only agent of my daughter’s recovery. The arrival of her sister was an infusion of care nearly equal to the plasma exchange.
How does one write a prolonged sigh of relief? The plasma exchange (called pheresis) works a very real miracle. Kelly spends another week in intensive care, but by the end of that week she is breathing on her own, and each new day brings improvement, each visit to the hospital is rewarded with confirmations of hope. Then she is released from the ICU, transferred to a room she shares with a woman who survived a terrible automobile crash, but whose husband did not. As my wife and I monitor our daughter’s recovery, we are surrounded by people who are not as fortunate. Nearly daily, we meet people steeling themselves for loss.
My daughter undergoes physical therapy. Within a month she is released, and she can walk. Within a few weeks of her release from the hospital, she takes up her second year’s duties as a full-time teacher.
“You don’t seem to have the idea of summer break figured out yet,” I tease.
That summer recedes in memory, joined in the past by several summers since.
The fear and desperation we knew that summer have receded in memory, too, but sometimes the thought returns of just how close we were to losing Kelly. It’s been said that God never gives us more than we can handle. Perhaps that is so, but He often runs us right up to that line.
At one point, when the outcome looked to be still in doubt, Kelly said to me: “Dad, if I get better from this, I’m going to appreciate every moment.”
She hasn’t quite managed that, of course. Her life has returned to normal, and “normal” seems to rule out appreciating every moment. She is preoccupied with student papers, weighed down by bills, car repairs and cleaning the cat box.
And I take her for granted, too, have gone back to the idea that my daughters are so special that nothing seriously bad could ever befall them. If anything, I’ve chosen to believe that her recovery is a kind of proof that this is so. I think this way because I must. If I truly learned the lessons offered during that desperate summer—of just how precarious everything is—life would be barely sustainable. It’s called denial, and though it may not be a river in Egypt, we are all buoyed by its currents.
Next week, Kelly will celebrate a birthday, and I’m not sure she would want me to reveal the number of years that birthday will commemorate. It’s a birthday we might not have had, a reminder that all the birthdays of all our children are provisional and conditional, and those provisions and conditions are mostly beyond our control.
Which is, when all is said and done, precisely what we are celebrating when we gather around the table, light the candles, and watch them flicker while we sing that old familiar song.