WHAT IS TEN YEARS TO A TWENTY-FIVE-YEAR-OLD WOMAN? MOST likely a long, busy, enjoyable time. It could very well encompass a career, marriage, a child or two, the beginnings of a few wrinkles around the eyes, maybe a small skin cancer nipped in the bud, the death of a favorite grandparent, three leased cars come and gone, a change in hairstyle or political party, a thirtieth birthday celebration, followed some slow-motion years later by a thirty-fifth, and then perhaps a quick look ahead toward a fortieth with easy disinterest: “Oh, forty—that’s so far away.” And, of course, it was far away—or at least would appear this way from the perspective of the young and trouble-free who’ve still got enough innocence left to believe they have forever on their side.
But I had lost my innocence.
As the horror of what happened to me settled in with the passing of time and became tinged with an increasingly philosophical viewpoint, I came to divide people into two categories: those who face serious illness early in life, and those who avoid medical tragedy straight into old age. At some point, it seemed, everyone would have their body stolen from them—and, with it, the ability to set themselves apart from medical misfortune. But timing is everything; the longer this loss can be delayed, the better. Being able to hold on to one’s easy health, I came to believe, was the mark of true good fortune. The very lucky get hit later, simple as that.
I was twenty-five when Dr. Ganz offered me ten years—along with the surgery that would buy them for me: a heart transplant. Just moments before hearing this once-in-a-lifetime offer, I’d done the unthinkable and failed an electrophysiology test in the worst way, by flat-lining. But even this near-death experience had not robbed me of my youthful mindset—at least not yet. I was still just a woman for whom ten years could be perceived as a good long time. These years amounted to nearly half of my life so far. I flashed back quickly on a tumble of images and divided them into ten-year intervals—from birth to age ten, and from ten to twenty—and saw at once the tremendous changes in and around me that had been a natural part of the passage of time. I was amazed at all the living that could be stuffed into this small space. What couldn’t I do in ten whole years? It was practically a lifetime. If I were to have this precious time with Scott, we would grow old together—into our midthirties, just imagine. I could finish law school, work as an attorney, live the New York City life I always wanted, see my friends marry off and my father and Beverly pass the sixty-five-year mark. I could learn a new instrument, a new language. Read a hundred books. Maybe even write one.
Yes, ten years sounded pretty good to me as I lay in a recovery room just minutes after slipping through death’s fingertips. To be able to project myself up and out of this moment and into the future—a date that was far enough away to blur the reality of how close ten years really was—made Dr. Ganz’s offer seem like a generous gift. It was a notion I could hold on to in the moment when I found myself grasping for something—anything—positive. It was hope. It was enough.
Until it wasn’t anymore.
Time passed more quickly after my transplant than I’d anticipated. Perhaps this was because of the way I counted the years: one post-transplant year, two, three, and so on, until somewhere around seven years, when I redirected the count to be more future-focused—death-focused, as it were. Year eight would become “two years left before I’m supposed to die,” and year nine was the one-year warning for my impending demise. At ten, the whole counting system shifted into a borrowed-time scenario, where the years became eggshells that I would walk on with ever-decreasing confidence: I should have been dead one year ago; I should have been dead two years ago.…
Ten years was no longer a gift, it was a curse. With the squeaking by of each unlikely year, I felt more and more vulnerable. Reality was not my friend; data showed that transplant recipients like me were unique in how their likelihood of survival decreased as time went by. The “cure” that transplant patients receive (a donor organ and immunosuppression) actually lowers their chances of living disease-free over time. There is no point at which, statistically, a heart-transplant patient is on safer ground, because from the moment a donor heart begins to beat in a foreign chest, the immune processes of the body begin to destroy it. Since the day of my transplant, this very process had been happening inside of me. I knew it and sensed it, and my annual exams showed the beginnings of it—but at the same time I still had a strong sense that I was very much alive and way too young to die.
My mind did not reconcile well with the creeping awareness of a time-bomb heart. It left me with a blank, confused space between my thoughts and caused a disconnect between wishful thinking and reality. How could I be twenty-five—or twenty-six, or twenty-seven—and be so close to death? It didn’t make sense. My mind pulled me toward the normal and ordinary for a woman in my age group—cute shoes, new lipstick colors, marriage, career choices—while my body tugged hard in the opposite direction, toward artery disease, rampant infections, medicines with side effects, and a life expectancy that had begun to seem rather optimistic, given the suffering and death that I saw around me in the transplant clinic waiting room. Like the puckered scar that ran down the center of my chest, there was a division within me I could not escape; I was part young woman, part sick girl. Neither part of me knew what to make of my split self—or my ever-shrinking ten years. People around me—friends, family, and even doctors—had some ideas. But as much as these good people might have wanted to understand, they could only see my life through their own, so their words would leave me as confused and frustrated as ever.
Only lonelier.
Long after my wedding night was over, the picture-perfect images I’d created during my walk down the aisle, out on the dance floor, and in front of the buffet table would become the enduring public illusion of what it was like to live in my body with a heart transplant. And I would feel forever compelled to keep it up somehow. In the name of appearances, I would spend my post-surgery years hiding away in a never-ending series of coat closets like the one I’d sought out at the Pierre, midway through my wedding celebration. Except for Scott, hardly anyone in my life had the opportunity to glimpse the jealousy, fear, and frustration inside of me; details of ugly things like heart biopsies, dead transplant friends, and sickening medicines were mine alone to know and keep quiet about. With sustained effort, I was able to create and enjoy everyone’s false impression of my transplant life.
Then resentment set in. After a few years of trickery, I began to expect the people in my life to recognize in me the very things I’d fought so hard to hide. I came to rail against everyone I knew and loved for not seeing through my screen of normalcy—for not busting open the coat closet, grabbing hold of my oily bottle of cyclosporine, and demanding, “What is this stuff? Why do you have to take it? How sick does it make you feel?”
Instead, I got what I had asked for on my walk down the aisle: misunderstanding. Misunderstanding that hurt. Misunderstanding that ground away at me until I felt like the loneliest sick girl who ever lived a day with a heart that wasn’t hers. Misunderstanding that took the form of a dangerously attenuated inner fuse that would ultimately short circuit a good deal of my patience, grace, and kindness.
Sometimes I’d lash out.
I once complained to Lynn, a close friend, that I’d just been diagnosed with another sinus infection—my eleventh in less than a year. Yet again, I’d been put on a twenty-one-day dose of heavy-duty antibiotics, and my sinus doctor admitted that he was beginning to run out of ideas. But Lynn, a cheery problem solver and highly educated suburban housewife, wasn’t at all daunted; she had a terrific idea of her own—a well-informed layperson’s medical solution. And she was going to share it, without the slightest hesitation or self-doubt, over tea and a piece of pound cake split down the middle.
“You’ve got to stop getting all these infections, and that’s the bottom line,” she said, beginning her usual step-by-step approach to unpleasantness that needed fixing. “You know what I think? I think you should do what the AIDS patients do. They have problems with low immunities, just like you, don’t they? I read somewhere about these new drugs that help AIDS patients fight off infections by pumping their immune systems way up. If you just found out what the pills are and got your doctor to prescribe them for you, you wouldn’t be so sick all the time.”
Simple as that, huh? I didn’t even try to hold back. “Yes, but I would be dead!”
Such unexpected unpleasantness at teatime. Lynn put her cup down and stared into it, intent on allowing the remaining rumbles of my thunder to dissipate before continuing on. “Don’t be such a silly. Lots of people take these drugs; they’re pretty common nowadays. And they don’t make people die, that’s for sure. These medicines actually save them.”
“Well, I can promise you that I would die from them.” Thunder was quickly giving way to an edgy nastiness. “A strong immune system would kill me real fast. My body would attack my heart. I’d be dead before my second dose of those AIDS pills. Yeah, they’d cure me of my sinus infections, all right. Cure me straight into my grave.” Lynn shifted uncomfortably in her chair and raised her hand to the waiter, signaling for a check—please. A quick pang of regret told me maybe I shouldn’t have been so hard on her, but I sure would have expected a dear friend like Lynn to understand more of the fundamentals of transplant immunosuppression, given that she’d seen me live by the sheer grace of them for so many years.
Then it occurred to me: perhaps Lynn would have been able to grasp more if I had hidden less.
I took a few calming breaths and continued. “You see, I take handfuls of pills every day just to keep my immune system down. If I wanted to lift my resistance to infection, all I would have to do is stop taking my medicine. I don’t need more pills to strengthen my immune system—I need fewer ones. You see what I mean?”
She looked puzzled.
“It’s like this. If I had more immune cells, white… blood… cells…”—I started to separate each word like an overwrought schoolteacher—“I would reject my heart. You know: rejection? The thing that can… kill me?”
The swipes had begun again.
“Sure, I know about rejection. A little bit anyway.” Lynn pulled her wallet from her purse in anticipation of the arrival of the check and placed it down on the table next to mine. “And look, I was just trying to be helpful here. Sorry if I made a stupid suggestion. I guess I just misunderstood—your medicines, your transplant, the rejection thing. How it all works.”
Yes, Lynn had misunderstood. And whose fault was that, really?
Mine.
Again, I found myself feeling the sting of the cover-up I’d been putting on for so long. Today Lynn felt it as well, and our friendship might not withstand the fallout. The consequences of hiding were quickly becoming too steep. Maybe for once it would be better if I just cleared away the fog, lifted the veil. I could open up to my good friend here and now, tell her all about the complexities and compromises of heart-transplant life. Then she would understand how the onset of another sinus infection could so easily become cause for intense despair and hopelessness; she would see the frustrating dead end that followed most of my post-transplant medical problems. Maybe the best thing to do, after all, was to be frank, honest, and understood rather than put on a show and be forever misconstrued.
Maybe.
The check still hadn’t come. I tossed my wallet back into my bag and settled myself into a comfortable position that had some staying power; what I was about to say—or try to say—would carry me and Lynn through at least one more cup of tea. “Let me explain it to you, all right? Here is the problem with my medicines; really, it’s kind of ironic if you think about it, but stay with me on this and I’ll lay it all out for you. You see, I can’t possibly take a drug that would increase my immune response, because then my transplanted heart—which my body recognizes as foreign—would be attacked.”
But I’d already lost her. Lynn had begun to slouch down in her chair, not quite uninterested but not exactly eager to follow along either. I wrapped up the conversation with a shrug and a change of subject. My dear friend didn’t seem to mind at all.
Soon the check arrived. We each set down a few dollars on the table and walked out of the café together.
Someone, please, hand me back my veil.