Mr. Pope is a novelist and free-lance writer who lives in New York City.
This article appeared in the Christian Century October 12, 1977, p. 916. Copyright by the Christian Century Foundation and used by permission. Current articles and subscription information can be found at www.christiancentury.org. This material was prepared for Religion Online by Ted & Winnie Brock.
The author relates his visit in the hospital to Birtis, a small boy with a lethal disease: “I leave the hospital: back among the germs, back to my everyday life of compromises, relative failures. Here’s to it, then. And to Science. And to friendship with a person whose struggle makes our lives a little nobler: Birtis the true revolutionary, Birtis the hero.”
How should I act, when I get in there? What should I say? My steps sound along the empty corridor, deceptive with its yellow-papered walls and neat reproductions, linoleum gleaming.
NO VISITORS. CAUTION. AUTHORIZED PERSONNEL ONLY. How do you play with someone who is half-paralyzed?
I enter; the ritual begins. In the first small room I am masked, hair and forehead, nose and, lower face: only the eyes transcend, and must try to smile. My shoes are covered as well -- they hold daily communion with the betrayer, earth.
In the second room I wash compulsively, scrub hands, wrists, elbows in Betadine solution until my shoulders ache. (But how do you amuse a child preoccupied, in tête-à-tête with cancer?) Then careful rinsing, hands up so no soap or wash trickles down, stains their purity.
Then to the third room, strictly supervised. I put on the sterile gown, two pairs of surgical gloves, like an automaton. Even here, one touch of an unclean thing and the process must start over.
The nurse nods at me, I may enter the sanctum. Through the glass partition I see a small boy sitting quietly, on a bed surrounded by surreal equipment. His head is large; dark skin drawn finely over his features, subject for a painter.
What are his interests, withdrawn from life this way? I don’t see toys. But the nurse is waiting, time to make an attempt.
He looks up when I enter, stares. I sit by the bed.
“Hello, Birtis. How are you?”
“I’m all right.”
“Good . . . been doing anything lately?”
“Not too much.”
Silence. He looks away, down at his left hand hanging limply in his lap.
“Well, what about. . . a game of tic-tac-toe?”
Don’t know how.”
“That’s okay, Here, let me show you. . .”
It was six months ago. In Kentucky, the media focused people’s attention on a small boy with a lethal disease. He was flown semiconscious -- medically attended, in the governor’s private plane to this sterile, silent room filled with forbidding machines.
His body lay scourged by disease, strength and resistance ebbing. Hepatitis led to aplastic anemia; his bone marrow shut down operations. No red or white blood cells, no platelets were being produced. With the white cells went Birtis’s Immune system, and his life became a prize target for any malingering germ with a big ambition.
Sick, scared and bewildered, he mistrusted the unceasing attentions of staff revolving around him. They gave him shots, asked him to hold out an already scarred left arm for more blood-taking, more pain. Strong-willed by nature, he fought with them, lashed out, and had to be pinned down. Since the disease all but stopped his blood’s ability to clot, bruise marks appeared where people merely grasped him. On two occasions he nearly bled to death resisting procedures necessary to his life. Then the left side of his body was paralyzed, his eyesight impaired, by a brain hemorrhage.
His mother, sister and brother were found not to have bone marrow close enough in type to his own, and the standard transplant was overruled. In the case of identical twins, and sometimes of siblings or members of the immediate family, bone marrow can be transplanted. But the process is highly individuated. And matching grafted cells with those of the host (patient) to produce the required “state of tolerance” is a delicate matter. The hosting body is likely to reject, kill off the grafted cells.
So the doctors attending Birtis, in the great hospital fighting cancer, decided to attempt a landmark cure. They would transplant fetal liver, which produces blood cells during prenativity. With fetal liver -- from precise stages, necessarily, of gestation in the fetus -- there existed the advantage of greater antigen tolerance. The chance of cells being rejected lessened.
Thus, fetal liver was obtained from recent abortions. It was injected into Birtis’s body: the first time, ever, it was tried on a human being. Unanaesthetized, of necessity, he managed somehow to endure the pain.
III: In Limbo
“Know how to play dots?”
“Want to try it?”
He nods. He doesn’t say much, with a strange thoughtfulness, different from being shy. He wears a pair of rodeo pajama bottoms, cowboys, dogies and broncos, with a faded hospital top. His brown eyes grew large and warm a moment ago, sympathizing with my defeat in tic-tac-toe.
“How old are you, Birt?”
“Six on my birthday, in June.”
“Hope I’m not scaring you, in this Halloween outfit.
High, thin eyebrows beneath a dark wash of hair; full nose, lips like a piece of sculpture. His drawl rises on the end of each sentence, produces few consonants.
“What’s your dog’s name?”
“Brownie. . . . Just got back from bein’ sterilized.”
He hands me a black poodle with a red, half-moon tongue.
“How old is Brownie?”
“Seven in July.”
“Mm. Now this is the way you play dots . . .”
The Reverse Isolation Room resembles a satellite compartment with complicated wires, apparatus behind the bedstead: oxygen unit, suction regulator, the intercom system. Ten by 12 feet with one entire wall, along the bed, a suctioning germ-filter. (I must never get between it and the patient.) Since last Thanksgiving Birtis has stayed in here, never leaving.
On a tall metal cart, at the foot of the bed, are shelves with medical accessories: clamps, scissors, Chux and gauze pads; sterile basins, alcohol and sterile water.
“See that bag?” he points, tiring of our dots game.
“This one?” I reach for it, start peeling the masking tape. “Say, this is like getting a Christmas present.”
He frowns. “That ain’t no present.”
A battered pink-and-blue dump truck. Back from sterilization.
Birtis stares up in my eyes . . . In my mind I begin digging for pastimes. Thumb-wrestling, would that be appropriate? Why not, it’s physical therapy. And if his hand bruises?
I tear a sheet from our pad and start on a paper airplane. Hand it to him, make another. Then a helicopter. He tosses them and watches glumly as they crash, fatally, to the unsterile floor. Birt makes a small rumbling sound, like an explosion.
“Hope the pilot got out an time. . .”
Next comes a sketch of a fishing boat, lone drawing in my repertoire.
“Guess what I’m making?” I ask, with enthusiasm.
He knits his brow. And when it’s finished: “Where’s a captain?”
“Yeah, with a beard and big steering wheel.”
More labor, unlikely image. Then the cruncher: “Where’s a catfish? Make a catfish in the water.
“Sure, Birt, I’ll make one. But are you tired . . . yet?”
And he, looking up in my eyes: “No . . . Are you?”
IV: Suffering Cure
As first returns came in, from the continuing round of tests and lab readings, the new procedure seemed to work. Birtis’s susceptible body, itself sterilized and living week after week in a 99.9 per cent sterile setting, began rebuilding immunity. Its red and white cell levels had risen, but the platelet count stayed very low. To remedy this, he was put on a course of steroids and his appetite became voracious.
But now another kind of struggle began. When the physical needs are taken care of, the moral assert themselves.
Birtis learned the names of his tormentors, of staff who could also play or be friendly. On this ward, unique in New York city, one of several reverse isolation units in the world -- where four patients are treated by an entire community, as well as by presiding Science -- on this ward there was intimacy. The people who treated could also care.
But his new strength made him suffer. The days in his barren cell grew endless. Their kindness was no repayment; his nerves were frayed by the incessant rounds of medical attentions. Once he went on a hunger strike, despite his strong appetite, and he kept it up through the day with the bitter revolt of a convict. He complained of migraines, fell asleep in stressful situations -- whatever maneuver, whatever way to save himself, just this once, from treatment. He grew depressed, withdrawn.
His mother spent long hours each day in the room. They both were indoctrinated into the complex therapeutic process. Their quick mastery of it -- especially his, a five-year-old’s -- amazed. He acted out, manipulated staff for all they were worth, threw things. Those were good signs. And he did start, at times, to play and kid around, to be a boy again.
No doubt a nap in his mother’s lap was the best consolation. But a father would have helped, a father to go along with his six brothers and sisters down in Kentucky. A man with the gift of seeing his children through pain.
But his mother was there. She saw him through the worst.
The minimum, the base cost of one such hospital day was $3,200.
Like a deep-sea diver, I struggle at treasure from a distant past. I grapple with a memory. Nurses, aides, pass by the glass cubicle and peer in, wonder how we’re doing.
“There, Birtis, there it is.”
“It’s a cootie-catcher. . . for germs.
Straight from a vague, long-submerged paradise: third grade.
“How you work it?”
“Like this, see -- takes care of all germs.”
He nods, growing restless -- looks back past the partition toward the nursing station. I relieved his mother when she went for dinner.
A nurse comes in with meds, giving the high sign. Birt frowns, more awful stuff to drink. We all must look like robots in our dull surgical costumes.
I stand, ready to move off. “Well, Birtis.”
He looks up. “You goin’?”
“Got to for now. Listen, I’ll see you Wednesday. Okay?”
He looks away, unceremonious, ready to accept his punishment. The one thing worse than medicines, perhaps, is when somebody checks out.
I leave, via the third room, unsterile the instant I pass the threshold. Then to the second, sighing relief (shouldn’t eat garlic when I’m a spending the afternoon an a mask’). I take off the strange suit of paper clothes. In the final room -- through the glass wall he waves at me -- I know his mind has already made the leap across separation, landing safely on Wednesday.
Before Birtis goes home -- when the day finally comes -- he’ll be swabbed, inoculated with the world’s good and neutral germs so the bad ones, on the outside, can’t take over. He’ll be recontaminated into the everyday world. Fortunately, also, his left arm has grown stronger. I can see him sitting on the bed working it, with his strange thoughtfulness.
As I’m leaving, he gestures me to the phone and asks. “Hey, how you call a werewolf?”
“Hm? I really couldn’t say.”
‘You dial ‘im up long distance. Ha ha. Ha ha ha!
Trying out his laugh. In the receiver it sounds dim, muffled: a message from a far off country, from inner space. From a small boy struggling with cancer, still all future.
In the nursing station they thank me. On my way out I glimpse the three other sterile cubicles, where two babies and a Latin girl battle for their share of life and happiness. Along the empty corridor I remember someone else I met once, here in Memorial Hospital: someone who was also up against it.
An older patient, and when I entered the room he was staring up at a TV program, “Sesame Street.” He was fun to talk to, interested ever, in the volunteer worker. Before I left he showed me a book he’d just published, and the flap described Peter Medawar: the man of science, whose work pioneered the field of transplants . . . winner of the Nobel Prize.
And I’m thinking, going along the corridor, Science and the small boy, don’t they need each other, somehow -- if the struggle is to continue, and live? Because the first prize is life, and health, at whatever cost.
Just as Oedipus, blinded, having endured an ultimate contamination, went away to the sterile-seeming place of his long convalescence holding a young girl’s hand: so you, Birt, living in your natural habitat of hope which is childhood, don’t ever give way to resentment. No letting go now that you’re stronger, and have some immunity, and an encouraging prognosis.
“Bye, man. See you Wednesday. Hope one of these days I don’t see you, hope you’re back home, and strong, and beating up on kids who try to bother you like these doctors and nurses.
I leave the hospital: back among the germs, back to my everyday life of compromises, relative failures. Here’s to it, then. And to Science. And to friendship with a person whose struggle makes our lives a little nobler: Birtis the true revolutionary, Birtis the hero.