It's Only Temporary: The Good News and the Bad News of Being Alive (11 page)

I decided what I needed for my reconnaissance mission was an ally. There was a woman I’d befriended during my years as a patient at Sloan-Kettering, a nurse I’d stayed in touch with for some years afterward. Her name was Olivia, and she was every bit the full-fledged incarnation of compassion and dedication you’d want from someone in whose hands you were to place your care. Years after my medical treatments ended I’d call Olivia on the phone to give her updates on my life. I’d listen in amazement to her tales from the battlefield, wondering how she could still be operating within the same theater. I’d invite Olivia to join me and my friend Jackie, who had been my girlfriend during the years of illness, for dinner, or Olivia would take us to a Mets game, to sit in her uncle’s seats right behind home plate. Olivia was one kernel of proof that I wasn’t the ingrate many of the doctors and nurses had experienced me as being. If I could befriend and enjoy her, I reasoned, it must demonstrate that I’m capable of appreciating those who truly were dedicated to delivering compassionate medical care. I went to the staff phone to see if I could have her paged. If for nothing else, just to prove that she really did exist.

“Oh…my…God…!,” Olivia said into the phone. “Oh…my…God…! Don’t move. I’m coming right down.”

Olivia is an ebullient woman. She talks fast, gets excited, laughs easily, and while her instincts lead her toward relentless optimism, she has no trouble handling sarcasm or doling out a dose of her own. Olivia had come to see my off-Broadway show, and she’d read the book it was expanded into when it was published. She was able to integrate her passion for her work with her agreement with many of my criticisms of the place where she did it.

Olivia had aged noticeably since the last time I’d seen her. Her body had thickened, and her hair was beginning to gray. Still, I recognized her immediately. We hugged and giggled, a rare display of euphoria within those walls. When I told her I was nervous about running into some of the doctors I’d taken to task in years past, Olivia dismissed my concerns.

“Oh, they don’t even know you insulted them,” she insisted. “Are you kidding? Their egos are so huge, they wouldn’t even be able to tell.”

I told Olivia about how difficult the year had been, and about the morning I’d spent across the street. I told her how, in the aftermath of my most recent relationship, not to mention the international catastrophe just a few weeks past, I’d been thinking about volunteering as some sort of patient advocate or advisor at a hospital somewhere. I was finally interested in finding a way to be helpful to somebody other than myself.

“That is so
great
!” Olivia said. “Why don’t you do it here?”

That would be an odd twist, I thought.

“I’m not sure that’s the best idea,” I told her. “I don’t imagine I’d be welcomed with open arms.”

“Don’t be ridiculous,” Olivia insisted. “They’d be happy to have you. Look,” she said, pointing down the hall just past the information desk. “That’s the volunteer office right there. I’m going to walk you over.”

I knew I’d have a lot to offer. The fact that I’d suffered so much difficulty in my own treatment gave me a useful perspective from which to help others who might be struggling themselves. Olivia ushered me past the information desk I’d avoided on my way in. I felt a chill as I passed the demarcation line between the public areas and the interior of the hospital. We said our goodbyes, promised to get together soon, and I opened the door to the volunteer office and walked in.

Things wouldn’t prove as simple as I’d hoped. There were forms to fill out, and an official interview process to endure. Apparently, I was going to have some explaining to do.

Complete disclosure. That was going to be my policy. Whoever I need to speak with will hear straight from me that I’d had problems with the place when I was a patient. I’d tell them that I’d spoken freely in the years since I’d been an inmate, and that – as much as such a thing were possible – I simply had the desire to be helpful, on an interpersonal level, with others who might be suffering through similar circumstances.

A woman introduced herself to me as Jane Rockingham-Dystal, the coordinator of patient volunteers. She told me we’d need to set up an appointment for an official interview on another day, but she asked me to join her in her small office for an informal chat. I gave her a brief overview of my history, including the details of my book. I assured her I no longer held any ill will toward the hospital or any of its employees, and I shared with her my belief that, especially in light of the way I went through my illness, I could be a valuable resource to patients.

Ms. Rockingham-Dystal listened intently, and she seemed intrigued by my story. She said she looked forward to hearing about the experiences I’d had as a patient – good and bad – as well as the work I’d done as a health care writer and activist. She concurred that, as an actor and a figure visible in the media, I had an unusual platform from which to offer opinions. Perhaps, she offered, I might even be welcomed by patients who might otherwise be resistant to assistance. She told me about the volunteer program, what important work it was, and how central it was to the success of the hospital. We set up an appointment for Friday of that week, and I left the office with my head spinning. It was the most pleasant, welcoming encounter I’d ever had in that hospital.

The most common question I’ve been asked about my illness and treatment over the years has been, “Do you think things at Sloan-Kettering have changed since you were a patient?” My response has always been that I can only guess.

“I assume things must have changed, somewhat,” I say. “But I have no way of knowing.”

After all, the world has changed so much since then. Awareness of the need for compassionate medical care has increased. The benefits of proactive patient involvement – already proven by the time I was a patient – have become even more widely embraced. It would stand to reason that some of those principles have taken hold, even if I’d personally found them lacking during my own treatment.

After my visit in the volunteers’ office, I wondered if I’d just experienced my first taste of some of those changes. I crept down the narrow hall that led from the lobby toward the cafeteria. I turned the corner to face the entrance to that bustling room. There, I came up against the question of whether things had ever been the way I’d perceived them to begin with.

The room was teeming with white lab coats and blue surgical scrubs. If I were to run into any of the people I’d known years before, this would be the place for it to happen. A parade of medical professionals swarmed around me. I had a brief premonition and swung to my left. The first being to come into focus looked vaguely familiar. As soon as I glanced at the name-tag pinned to his lab coat, I pulled back around the corner to hide. My heart was pounding. I leaned slowly toward the edge of the wall to take another peek.

“Leonard Zweig, M.D.” the tag read, the word “Attending” stitched into the fabric.

Holy shit, I thought. There he is. The man I’d represented as the most malevolent creature in the story of my survival. I’m staring at him, maybe ten feet away. I wonder if I should go up and say hello.

I vetoed the idea quickly and settled in to observe. What I saw from my perch bore no relation to what I remembered. He seemed a small, nebbishy man. Benign. Where I remembered someone portly and unkempt, this man was trim and well groomed. I remembered a man who was a loner, disliked by even his colleagues. This man was laughing easily with a large group. Maybe he’s changed, I thought. Maybe he’s happier now. But even the age was incompatible. The Leonard Zweig I was spying on toward the end of 2001 looked younger than I remembered the evil Dr. Zweig being in 1985. I’d guess the age of the man I was watching to have been in his late forties, maybe fifty. But that meant the doctor I remembered, the one who’d scolded my father for phoning him at home to ask if it was all right to give me a Valium the night of my diagnosis with acute leukemia, would have been no more than thirty-five. That was six years younger than I was, as I cowered behind the corner studying him. Could he have been that young a man? Could my memory have so distorted him? If so, what other personalities, characteristics, and events might I have twisted over the years?

My rage years before hadn’t been unfounded. Of that I’m certain. But maybe, just maybe, it had been misdirected. The indignity of illness is the severest one I’ve ever known. When it was exacerbated by understaffing, lack of supplies, arcane and archaic traditions, not to mention occasional lapses in judgment and carelessness on the parts of medical professionals – all while battling a devastating disease – it became too much for me to bear silently. Now, after loitering in the lobby and examining the staff in the cafeteria, I couldn’t locate the evil intent I’d assigned to them back when I’d been in their charge. More than anything, the place had the feel of a tiny, inbred community, like a small, provincial high school. Obsessed with itself, perhaps, but there are worse crimes than being oblivious to the world beyond one’s neighborhood. Tunnel vision in the quest of a cure for cancer can’t be any worse than tunnel vision in the search for a successful sitcom, right? Had I been mistaken in my condemnations? Or is there something in the dynamic of desperate need and excessive authority that can’t be discerned by those not enmeshed in the equation? Had I misinterpreted people struggling to do their best under impossible conditions? Or did they all now seem so innocuous simply because I was no longer subject to their sway?

I walked out of the hospital into a perfect, cool, autumn afternoon. I had such a feeling of rebirth and of hope for the future. Of hope, if this makes any sense, that I might have been mistaken about my past. I thought maybe some good might come out of the car wreck of a day. Maybe, by falling as low as I had, I could now make a positive impact, which might make up for the carnage I’d wrought the past year. I wandered along side streets and up avenues. I lost track of my route and stiffened from the cold as evening enveloped me walking across Central Park. I let myself into my apartment and hit the button on the answering machine.

“Hello, Evan. This is Jane Rockingham-Dystal at Memorial Hospital. I’m afraid I won’t be able to interview you on Friday. Thank you. Goodbye.”

It was spoken in a bright and optimistic tone. One that suggested a scheduling conflict, as if I should call to find a better day. But she hadn’t said that.

“I’m afraid I won’t be able to interview you on Friday.”

Not that she won’t be able to interview me
at all
. Not that it’s been decided another interview will be
unnecessary
. Yet there were no instructions to call back and reschedule.

“…won’t…be…able…to…”

What…does…that…mean…?

I called several times over the next few days after conferring with various friends. Opinions seemed split over what to expect, or if it had been madness on my part to anticipate ever being accepted. Jane Rockingham-Dystal proved difficult to get on the phone. I would have thought she was avoiding me, except for the fact that I wasn’t identifying myself before being told that she was unavailable. Finally, after more than a week had passed since the date of our canceled appointment, I sent an email. I explained my confusion in regard to her phone message, especially when viewed in tandem with the cheerful tone of our meeting. I acknowledged, again, my awareness of the delicacy resulting from my criticisms of the hospital. I reiterated my belief that my experiences made me a more valuable resource for those now in the thick of things. I found myself getting worked up and emotional. I
wanted
to volunteer. And not just anywhere. I wanted to be a volunteer at
Memorial Sloan-Kettering Cancer Center
. I’d become enamored of the symmetry and didn’t want to have it denied. About ten seconds after I hit “send,” my phone rang.

“Hello, Evan. This is Jane Rockingham-Dystal calling you from Memorial Hospital.”

I was frightened to be on the phone with her. I had the feeling I knew what was coming and was concerned about whether I’d be able to handle it graciously.

“Evan, I would have told you this personally if I’d gotten you on the phone the other day,” she continued. “I’m sorry if there was confusion about it. But, after you left my office I spoke with the patient advocate’s office. It seems there was a good deal of controversy regarding the treatment you received here, and in light of that, the feeling was it wouldn’t be appropriate to have you working here as a volunteer.”

My God, I thought. I’m like the bogeyman to them. I didn’t know what to say. It wasn’t a surprising reaction, yet I was shocked. First, that thirteen years after my last treatments there my name still carried so much weight that I could be nixed as a volunteer candidate within moments of vacating the premises. I tried to imagine how those conversations had gone. Had research been necessary? Did someone do a Google search? Or did the mere utterance of my name elicit a gasp?

And I was angry. In one moment I went from being eager to join their team, to wanting to blast them in the press all over again. How small-minded, I thought. Nothing’s changed at all. It’s the same story: you’re either with us or against us. If you’ve got anything critical to say, no matter how constructive it might ultimately prove to be, we’d rather not speak with you. We’ll banish you, ensuring nothing can ever upset our entrenched ways.

Even as I was shocked and angry, I was taken aback by my own naiveté. “What did you expect?” I asked myself. “You kicked the shit out of them, as often and as loudly as you could. Why on earth would they want to have you around?”

“Well, yeah,” I answered myself back. “But I have something to offer. I possess knowledge and insight that could be helpful to them.”

“Hey, Evan, you idiot,” I heard myself shouting in my head. “They don’t want it from you. Not now. Not anymore. Maybe if you hadn’t set it up so accepting you would equal total surrender.”

“Yeah, but…” I kind of whimpered to no one in particular. “That was a long time ago. It was all a long time ago. I’m over it. Why aren’t they? I’ve forgiven me. How come they won’t?”