Interacting with the Medical Humanities

5. Explain the role of story-telling in the healing process.

7. Engage in the process of empathizing with the disabled.

Unit 3Section 2Exercise 5Making Sense of illness: Cirrhosis

Clinical correlate 4: Hepatitis C

Richard McCann is the author of the essay, “To whom it may concern”. You have also seen him on various video clips in Units 1 and 2. In this essay, McCann explores the origins of his illness, following its roots to a much earlier time. Read McCann’s essay and answer the study questions.

Like a Fatherless Child

By Richard McCann

They shared a name and little else, besides bad luck. In the end, that was enough.

FOR A LONG TIME, when friends asked me about my father, I told them I scarcely

recalled him at all, except in fragments too small to reassemble. After all, I was only 11 when he died. I said he was a weekend fisherman. I said he liked sandwiches made of ketchup on white bread. He like “Gunsmoke,” “Perry Mason,” “The Untouchables,” “Rawhide.” He liked to say, “If you’re so smart, how come you’re not rich by now?”

If they asked how he had died, I explained he’d died of fulminant liver failure when he was 50. He hemorrhaged to death; blood poured from his mouth, as if everything inside him had suddenly erupted. Not that I was there to witness it – I was too young to visit him in the hospital he’d entered a few days before. One evening, as he stood before the bathroom mirror, lathering his face with shaving soap, he noticed his eyes were slightly jaundiced; the next week, he was dead.

And if they asked how I felt after his death? Relieved, I’d say. By the time he died, I’d explain, I’d already begun to see that I had disappointed him with my fretful giddiness, my penchants for tracing movie star photos from magazines and jumping rope with the girls in the schoolyard. “You know,” he once said when he overheard me gabbing on the phone with a neighbor girl, “you don’t need to be a Chatty Cathy.” The reason I hadn’t already missed him was that I’d never really needed him in the first place. I’d always belonged to my mother, sitting up later with her on Saturday nights to watch old movies on TV. In truth, it was almost exhilarating, saying these things about my father, as if by repudiating the bond between us, I could somehow punish him for having loved me insufficiently – or, perhaps, for having died.

Why, then, was I not completely surprised when the doctor diagnosed me with liver disease? “You’ve got cirrhosis,” she said, studying the pathology report from the liver biopsy she’d ordered the moth before, when I’d first tested positive for hepatitis C. I was 46. Without a transplant, she said, I wouldn’t live to see 50.

Oh, I thought, cirrhosis. For a moment, it didn’t seem quite true. Cirrhosis. I can live with that.

That’s when it hit me.

It hit hard, in fact — though, at least in retrospect, I can’t say it felt like a sudden explosion. It felt more as if I’d just received an oddly formal but long-anticipated acknowledgement of something I’d never voiced but had somehow known for a long time: I would live no longer than my father had. I wouldn’t even make it to 50. Hadn’t I always felt it, however vaguely, that his death had established my deadline?

The doctor handed me a referral. She said she wanted me to the transplant surgeon.

“Okay,” I told her. But even as I took the slip of paper, I was thinking, Why bother?

My fate seemed clear enough, even if I didn’t have the same form of hepatitis that had killed my father. He died quickly, of acute hepatic inflammation, possibly acquired from his having sprayed some trees with toxic insecticides a few weeks before

My disease was chronic and viral. Most likely it had been quietly devouring my liver without my knowing it, the doctor said, for more than 25 years. Because it was transmissible only through direct blood-to-blood contact, I’d probably gotten it back in college, when I’d experimented with drugs, sometimes sharing needles with my older brother, David, who’d taught me how to shoot heroin to soften the harsh edges of LSD. As for David, who had suffered from depression ever since our father’s death: He died at 36 of a drug overdose, which I had understood as being his way of following our father to the grave. “He’s with your father now,” my mother said, the morning we scattered his ashes. And though I knew it wasn’t really logical, my having contracted a life-threatening liver disease hardly seemed coincidental – that even if the disease wasn’t hereditary, it was nonetheless still familial.

This was the thought I carried with me as I left the doctor’s office, the transplant referral in my pocket. It was almost dusk. Of course, of course, I kept telling myself: I would always be my father’s son, no matter how hard I sought to disavow it. Wasn’t I the one who most resembled him in looks, as my mother had so often reminded me? And wasn’t I the one to whom she had presented his keepsake watch and signet ring the night of his funeral?

I couldn’t figure what to do. At midnight, I prepared for bed. I washed my face and brushed my teeth. I undressed in the bathroom. Naked, I studied myself in the full-length mirror. There he is, I thought. I could see I was wearing my father’s middle-aged body. His hairless chest, soft stomach. Calves varicosed with blue veins, as his were, the kind that doctors describe as “torturous”. What was the difference between us? I was the son who’d been named for him: Richard J. McCann. From visiting his grave every Sunday as I grew up, I knew what my name looked like carved in block letters on a tombstone.

WASN’T IT SIMPLY a sentimental proposition, that boys need fathers to guide them? That’s what I thought for years – at least until I needed mine. But how could I possibly initiate a relationship, if in fact I really wanted one, with a man who’d been dead so long? And how could I locate him? It wasn’t as if I could find him simply by looking in the hall closet where for years my mother had kept his U.S. Army uniform, enshrouded in a plastic dry cleaner bag.

Here’s what I knew for certain in the months following my diagnosis: I was growing steadily sicker, first with fevers and then with a constant, intractable itching, caused by my liver’s diminishing ability to rid my body of toxins. I was becoming almost jaundiced as my father had been the last time that I’d seen him, the night he’d left for the hospital, his eyes the color of dark urine.

When I asked the transplant surgeon how much time I had remaining, he demurred, “I can’t say,” he said. “Sometimes, the liver goes slowly, and sometimes it just crashes like a hard drive.” Then he equipped me with a pager to clip to my belt, so the hospital could locate me at a moment’s notice, should an organ become available; the week after that, he put me on Paxil, to dent the depression of waiting for the pager to beep. The transplant social worker gave me the phone number of the man she’d chosen to serve as my “transplant body”, a Vietnam vet who’d survived against great odds, she said, since receiving a lung transplant three years before. “You’ll like him,” she told me. “He’s a real trouper.”

When I phoned the man a few days later, he told me he’d been to hell and back, but he figured it was well worth it: Now, he could help the people who needed him – people like me, that is. He said that if I wanted, I could call him my “transplant daddy”. He suggested we meet for coffee.

But as soon as I set foot in the bookstore café where we agreed to meet, I’d knew I made a mistake. There he was, seated at a small table in the rear, tethered to a portable oxygen canister, bloated and moon-faced from prednisone and Imuran and cyclosporine, the immunosuppressive drugs that keep a transplant recipient’s body, as I’d already learned, from rejecting the donor organ as foreign. As soon as I sat down, he started talking. He’d just gotten back out of the hospital, he said, where he’d been fighting a fourth bout with pneumonia. Now he had obliterative bronchitis as well. In the hospital, there’d been some talk as to whether he’d need a second transplant.

I’ve got to go, I kept thinking. I didn’t want to stay there, nor for one more minute. How could he ever be my “transplant daddy”? If I needed a second father, I needed one who could show me how to live.

Not that I was so certain I wanted to keep on living. Sometimes, lying awake at night, I felt I would just as soon die as submit myself to what seemed a brutal evisceration, during which a piece of a dead person would be sewn inside me. But I couldn’t figure how to confide this to my hepatologist, the one doctor who sometimes seemed to be almost a father, however improbably: He was younger and shorter than I, and initially from Delhi, with pictures of Hindu deities hanging on his office walls. But I liked it when he asked me to unbutton my shirt and lie back o the cool white paper that covered the examination table, so he could palpate my abdomen. He gently pressed his hands into my belly, then leaned down to percuss its surface with two fingers, so he could assess the size of my swollen liver. I closed my eyes while he worked. Sometimes, as I lay there, I would begin to recall the father of whom I never spoke, the father I had almost forgotten: the one who sat with me in the bathtub when I was a small child, washing my back with warm soapy water; the one who came to my room at night when I was sick., laying his cool hand across my forehead in fever.

IS IT TRUE, when the Hasidim says, that when a dead person appears to us in a dream, he is making an actual visitation? If it’s true, I don’t know how my father found me, for the night he came back, I was on Cape Cod, 500 miles from home, sleeping on a friend’s futon. I’d gone there because it was the place I loved the most, and I wanted to say goodbye to it, now that it seemed time to say goodbye to everything.

Here’s how my father returned: He was driving an old DeSoto, waxed to a glossy black finish. I watched as the car advanced, moving slowly down the tree-lined street where we’d once lived, past the identical small houses. I understood he was dead.

I couldn’t tell if he knew who I was, even though I was standing in the middle of the street, right where he could see me. I remember thinking how quiet the street was, now that there were no children playing in the yards. The car drew close, then stopped. I could see him inside, though he didn’t unroll the window. We just stared at each other through the glass. He had grown no older, though I had: We were the same age now, like brothers.

Come with me, I heard him say, though he wasn’t actually speaking. Now that he was dead, it seemed he could speak in a way that didn’t use words. I didn’t want to get into the black car, not at first, but he kept insisting we had a long trip before us. He wanted to show me something he’d always loved, he said, a locust tree his father had shown him, back in the small Pennsylvania mining town where he’d grown up.

I remember riding in the car beside him. I remember noticing the door on his side had come loose; it was rattling. Then suddenly we were standing on a tarred country road, examining a large tree that someone had planted on a steep, eroding embankment.

Okay, I thought. I’ve seen it. Now let’s go.

But my father didn’t move. He was looking at me quietly, as if he were hoping I might speak. What was I supposed to tell him?

That’s when I noticed the tree’s roots – how they’d erupted through the hard, dry ground, and how they’d spread in thick, gnarled webs, now that the eroded soil had collapsed beneath them. How could anything possibly live like that, with its roots so horribly exposed?

My father was standing me. I’m asking you to live, he said.

No, I can’t. I told him. Besides, didn’t he want me to follow him, as my brother, David, had?

Then we were elsewhere again, walking through an open field behind the elementary school my brother and I had attended. It was the field where our father had taken us to fly our paper box kites on windy Saturday mornings.

I couldn’t tell from the way he was walking, with his eyes cast down, that I had disappointed him by saying I couldn’t live.

But even before I could speak, he turned toward me, his expression calm and still. I had nothing to be sorry for, he seemed to be saying, since I’d never given him offense in the first place. At that moment, I could feel from him a clear emanation, something similar to what the nuns had described to us schoolchildren preparing for First Holy Communion as God’s perfect love, the love He has for each of us just as we are, standing before Him, revealed and fully known.

I didn’t know what to say: Something was changing. He loved me; he wanted me to live. Is that why he’d come back – to tell me I’ve gotten something backward all these years, that I wouldn’t be betraying him living to be older than he had, as I’d imagined, but rather by dying, as he did?

When I awoke, my pillow was wet; I’d been crying in my sleep. It was 3:30am. How had my father come and gone so quickly?

I must have fallen asleep again, for when I awoke again, it was 10:30am, and I was running late. I had a plane to catch. I was headed home for an appointment at the transplant clinic the next morning. All the way back, on the flight from Logan to Dulles, I could feel myself suspended within the dreams debris. I kept trying to remember a passage from Homer I’d been required to learn by heart a year before in a college class in poetry, the passage in which the warrior Odysseus at least reveals himself to his son. Telemachus, who has awaited the return of his son for 20 years: “I am that father whom your boyhood lacked and suffered pain for the lack of. I am he.”

YOU CAN GUESS how the story ends: I lived.

I lived longer than my father did – actually, I’ve outlived him, so far, by three years. For how many more I’ll live, I don’t know.

In fact, there is much I will never really know.

For instance: I will never know if I would have allowed myself to undergo the transplant had my father not appeared to me in a dream, giving me permission. I do know that in the weeks before my dream, I’d be considering buying an apartment in the Dupont Circle co-op building where an EMT worker had found my brother’s dead body on the bathroom floor, though I told myself that the only reason I was considering buying an apartment in that building was that it was especially well-priced, with high ceilings and large windows. I do know that before my dream, driving home from my weekly appointments at the transplant clinic, I sometimes felt the sudden urge to swerve my car into a concrete underpass, to kill myself.

I don’t know if the dream of my father was in fact what a Hasidic rebbe might term a “visitation”, or if it was simply what Freud would have called a “dream of convenience”, in which a sleeper’s unconsciousness wish is manifested and fulfilled. I do know that my father sent my brother and me no final note from the hospital that last week that he lived, nor did he send any final words to be delivered by our mother.

I know I would have liked at least a few such words.

I know this: After my dream, I waited eight months for a transplant.

Little by little through those eight months – shuttling back and forth to the hospital, with my liver rapidly failing – I came to realize that everything that was happening to my body had happened to my father’s also, though it had all happened to him in less than a week, as if in fast motion. First there was the constant exhaustion, a weakening so profound I had to rest on a chair in the hallway to make it from my bedroom to the kitchen. Then the accelerating jaundice, as my liver ceased to rid my body of bilirubin and toxins; the ulcerations that bloomed on my ankles from portal hypertension; the pale stools, streaked with bile. And after that? Muscle wasting, as my body cannibalized itself for nutrients and proteins. Brief spells of aphasia. Cramps and sudden hemorrhages, blood puddling in my mouth from ruptured esophageal vices.

My father had bled to death in the hospital, with my mother standing beside him. The first time I hemorrhaged from the mouth, I was alone in my apartment, washing dishes at the kitchen sink: the blood I vomited was black and thick, like coffee grounds mixed with bloody spittle. It wasn’t until three days later – after I awoke in the hospital, where I learned a radiologist had saved my life by introducing a small mental shunt into my jugular, then snaking it all the way down to my liver, rerouting my blood flow from the portal vein directly to the vena cava – that I realized that I’d the exact sort of hemorrhage that had killed my father. Had there been so advance sin the management of liver disease in the years since his death, I would have died then too. After that, it grew harder to hold it against him for having left me.

In those eight months, to the best of my knowledge, I never dreamed again of my father, though I often thought of him the way he’d been before he’d gotten sick. I could picture him standing at his workbench, for instance, building birdhouses from scraps of spare wood, or walking down the path from our summer house to the river, pushing back the cattails to clean his way, his wicker creel slung across his shoulder.

In the last few weeks of waiting for the transplant, I remembered almost nothing. I developed hepatic encephalopathy, the mental confusion and disorientation that often accompany the final stage of the liver disease. Sometimes, when close friends came to visit me, I had trouble recalling their names. I couldn’t find the words for the things I wanted, like “magazine” or “pillow” or “ice cream”.

Then the transplant coordinator called one night to say that the doctors had located a suitable donor. My friend Sarah drove me to the ER, where the transplant surgeon was standing at the ready. I remember walking down the windowless corridor that lead to the room where a nurse was waiting to prep me for surgery. I was walking slowly, because I knew it might be the last time I walked on earth.

And as for the rest: Sometimes now when I look back, it’s the transplant that feels as if it were a dream, and the dream of my father that feels real.

I’ve never seen my father’s autopsy report, if in fact an autopsy was ever done.

But I have read my surgeon’s report. I know the transplant took 12 hours and three minutes. I know I required 15 units of packed red blood cells; 13 units of fresh frozen plasma; two units of platelets; and one unit of Cryoprecipiate, for clotting. But I don’t remember the surgeon cutting a “bilateral chevron incision with vertical midline extension with a knife through the skin and then through the subcutaneous tissue and fascia,” as his report describes it. I don’t remember that “the Iron interne with Steiber attachment was placed for retraction of the ribs” or how “the liver was excised using the curved Mayo scissors, leaving a large cuff of vena cava…”

I remember walking in the surgical ICU, a tube down my throat, my brain buzzing like high voltage from prednisone. At first I didn’t know where I was. But I knew I was living. I knew a piece of a dead person had been placed inside of me. My name was Richard McCann, the same as my father’s.

Who would I become now?