FLOATING EFFORTLESSLY in another world, I drifted over to Egypt.  I was dressed in white, and next to me was a huge marble column.  But why Egypt?  Was this a dream?  An anesthetically induced hallucination?  Was I delirious?  Had I died during the transplant and was now entering a different life?

Egypt began to evaporate as I slowly became aware of a buzz of disembodied voices calling my name.  "Claire, wake up.  It's over, Claire."  I awakened gently, feeling no bodily or physical sensation — nothing but pure consciousness and a cacophony of voices, speaking, shouting, proclaiming my name.  My name?  Why my name?  Why weren't they telling me what I wanted to know?

The last thing I had heard was that I might not get the organs.  Was the operation successful?  Please tell me!  Did the transplant happen?  I need to know.  But with the breathing tube in my windpipe, I couldn't speak.  Total frustration!  Although my hands were tied, I managed to wiggle my fingers in a writing motion.  Finally somebody noticed and brought me a pen and paper.  I scribbled my question: Did I get them?

"Oh, yes," a voice said.  "Everything is fine."

Thank you, God!  Then back down into the darkness.

Hours later, I awoke in a sweat, flailing around and calling out deliriously.  The breathing tube was gone now, and I was having my first heart biopsy.  This was the surest way to detect rejection, but so soon?  The thought of them snipping a piece of my precious new heart, which had just arrived in its new home and hadn't even been given the opportunity to unpack, was so alarming that my heart started racing.  My heart was actually running away, or so it seemed.  I could see it galloping all over the machines.

Dr. Baldwin rushed in.  This heart was still his baby; just this morning he had held it in his hands.  I looked up at him and asked for some Valium to calm me down.

"I don't believe in Valium," he said.  "I'll give you something better.  A mild suppository.  You'll love it."

Before I knew it the pellet was inside me, throwing me into a vivid nightmare, except that I wasn't quite sleeping.  My head hurt and I struggled to break free.  I was trying to scale a high smooth wall with nothing to hold on to.

Half-awake now, I opened my eyes.  A blank television monitor stared back from some place above me.  To my right, machines ticked away, recording the life inside me through a myriad of tubes.  To my left was a door with a windowpane, and now Amara's face was pressed up against the glass.  Good!  If Amara can see me, I must be alive.

Everyone who entered my room had to suit up: green gown, green mask, green cap, green booties, and latex gloves.  They all looked the same, like green blobs; the only way I could tell them apart was to learn to read their eyes.  Now a blob with the eyes of my sister came in.  For some reason I felt myself winking at her before I passed out again.

I awoke to the rattle of a huge contraption being wheeled in by another green blob.  The machine was on top of me, although I felt nothing.  "We're going to take a chest X-ray," said the blob.  "We'll be doing this every four hours?"  Really?  They’re taking this rather seriously!

An EKG rolled in with a nurse in its wake.  Its tentacles attached themselves to me and read the rhythm of my heart.  But could it possibly detect how frightened I was?  So many questions!  How long would this new heart keep beating?  How long would these new lungs keep breathing?  Would I reject these organs?  Would they reject me?  What was this rejection I'd heard so much about?  What form did it take?

I had my own ideas about that.  I envisioned the new heart breaking free of its stitches and popping right out of my body.  I even wondered whether Dr. Baldwin had sewn it in right.  I could swear it was beating deeper in my chest than my old heart did, because I could feel it beating against the bed behind me.

"It's just your imagination," a nurse assured me.  "Nothing has changed."

But I knew my body, and something was different.  When I asked Dr. Baldwin, he explained that to fit the new heart in, he'd had to position it farther back than the old one. It was nice to know I still had some connection to reality.

As the hours passed, my anxieties increased.  Maybe all the fears I had pushed away before the operation were catching up to me now, with a few new ones thrown in.  I had been told, for example, that I wouldn't be able to cough after the transplant, that some of my nerves would be severed and I wouldn't feel the familiar coughing reflex.  But I was coughing quite a bit, which made me wonder: Did they really know what they were talking about, or were they just pretending so I wouldn't be alarmed?

Maybe they, too, were afraid.  Although an endless procession of identical green blobs passed through my isolation, none of them would touch me.  I concluded from this that if I were touched, rejection would occur immediately.  Rejection, isolation — these were ugly words, and so were the other terms I kept hearing: Biopsy.  Necrosis.  Transfusion.

Through the glass, I spotted the unmistakable contour of Bernie Siegel's shiny head.  I had remembered that he was at Yale, and although we had never met, shortly after the surgery, as soon as I was coherent and able to pick up the phone, I had called him in the hope that he would visit me.  I knew him from public television, and had been inspired by his book Love, Medicine, and Miracles.  In the book, he wrote in support of the active, questioning, participating patient, who must be prepared, if necessary, to tolerate a certain amount of disagreement or even conflict with her doctor.

Although Bernie, too, was covered in green, his gregarious spirit shone through.  His bald head was covered by a green cap, but there was no mistaking those twinkling eyes.  During his brief visit, Bernie pointed out that when you're in isolation, it can be comforting and therapeutic to see at least a glimpse of the natural world.  There was, I remembered, a window behind my bed, with a view of a tree and the sky.  But in typical hospital fashion, I was facing the other way, toward the television.  As soon as Bernie left, I asked the nurses to turn me around.

On his way out, Bernie came over to give me a hug.  I instinctively recoiled: Wouldn't this kick me into instant rejection?  But I trusted this man, and I was dying for some human contact.  Bernie's hug was wonderful and warm.  I took a deep breath, waited a moment — and didn't die.  The melting process had begun.

For the first couple of days after surgery, I had been frozen, as if in a block of ice.  Maybe God planned it that way as a form of protection: if we express strong emotions too soon after surgery, the stitches could break.  But now, for better and for worse, my feelings were starting to return.

*           *          *

On the third day after the operation, two green blobs wheeled in an exercise bicycle.  Hold on, I thought.  Aren't we rushing things here?  I was still on morphine, and just out of major surgery!  But Dr. Baldwin wanted me to ride for at least a few minutes, and to my amazement, I did.  What a marvelous feeling to be moving my legs again!

With all my fears, I was grateful just to be alive.  I was also deeply thankful that a family I had never met had made it possible for me to bypass death and rejoin the world.  It was a humbling thought, and I wanted to be worthy of their amazing gift.  When I told Gail how I felt, she suggested that I write to the donor's family to express my gratitude.  While I couldn't know their identity or sign my name, one of the nurses had told me that my donor was an eighteen-year-old boy from Maine who was killed in a motorcycle accident.  And even without names, I could still write to the family from my heart, as it were, and Gail would forward the letter.  I did write — once from the hospital, and several more times from home.  But during the first weeks after my transplant I was focused more on the gift than on the giver.

I learned later that some transplant recipients feel terribly guilty after the operation because somebody had to die in order for them to live.  In the midst of their deep and complicated feelings, they sometimes lose sight of the fact that the donor's death was unrelated to their own prayers or wishes.  While I was a beneficiary of my donor's death, I didn't feel responsible for it.  I was sad that a young man had died, and I saw myself as a privileged guardian who had been entrusted with a special responsibility.  I was living with borrowed organs — not literally borrowed, of course, but that's how it felt.  And like everything borrowed, they deserved special care.

Because this was the first heart-lung transplant in New England, the event had generated a fair amount of attention on television and in the papers.  Total strangers were sending me cards and letters at the hospital, congratulating me on the transplant and wishing me a long life.  And now, on the third day after the transplant, two reporters came in to interview me.  The timing was excellent: I was still exhilarated from being able to exercise.  When my guests arrived I was all dressed up in yellow silk pajamas and a pink silk bathrobe, a gift from Marilyn.  I was so delighted to be moving again that I clowned around and climbed up on the bike, where I posed for a picture with a paper cup on my head.

"Now that the operation is over," one of the reporters asked, "what do you look forward to doing?"

"Regular things," I replied.  "I rode this bike today, and it felt wonderful to be able to exercise.  When I'm well enough, I'd love to go biking with my daughter.  I look forward to some of the simple things that she and I used to take for granted, like walking on the beach together, skating, going to the theater — all the things I've been too sick to do."

"Claire, now that you've had this miracle, what do you want more than anything else?"

"Actually," I said, "I'm dying for a beer right now."

As soon as those words came out of my mouth, I wished I could pull them back in.  I was mortified that I had answered this sincere question with such a flippant response.  I was also surprised, because I didn't even like beer.  At least I never had before.  But the craving I felt at that moment was specifically for the taste of beer.  For some bizarre reason, I was convinced that nothing else in the world could quench my thirst.

That evening, after the reporters had left, an odd notion occurred to me: maybe the donor of my new organs, this young man from Maine, had been a beer drinker.  Was it possible, I wondered, that my new heart had reached me with its own set of tastes and preferences?  It was a fascinating idea, and for a moment or two I rolled it around in my mind.

Then I let it go.  During those early days I had no idea that I would look back on this curious comment as the first of many mysteries after the transplant, or that in the months ahead I would sometimes wonder exactly who was choreographing all these changes in my preferences and my personality.

Was it me, or was it my heart?


What a week!  On the fifth day, just two days after I was clowning around with the reporters, I fell into a profound despair, a pit so dark I was afraid I might never find my way out.  I had been through the whole cycle — the long wait, the acceptance of death, the miracle of the transplant, and the first indications that my strength and stamina were returning.  But now, ironically, a depression settled in so deeply that I didn't think I could make it.  Suddenly, being in the ICU was devastating and bewildering.  I didn't know who I was or what I was doing here.

My body, the nurses assured me, was doing fine.  My recovery was on target, progressing as expected.  But it wasn't my body that concerned me.  It was everything else.

To start with, I was overwhelmed by these immense and sudden transitions.  After months of being housebound, incapacitated, and connected to oxygen tanks, I had been rushed to New Haven for a dangerous operation.  I had not only survived, but three days later, just as Gail had promised, I was actually riding an exercise bike with the help of somebody else's lungs and heart.  Almost overnight I had gone from total incapacitation to fully functioning.  The physical changes alone were so enormous and so abrupt that the rest of me — my mind, my emotions, my soul — hadn't yet caught up.  When you awaken from a nightmare, you can shake it off.  But it's a lot harder when your nightmare has gone on for years.

Part of what I was experiencing, I now realize, was a post-operative depression that is common among heart surgery and transplant patients.  I wish I had known about this at the time, but nobody at the hospital mentioned it.  This depression, which typically begins in the ICU within days of the operation, can demoralize even the most optimistic soul.  And perhaps my despair reflected the flip side of my unexpected serenity on the eve of the transplant.  "It is not uncommon," writes a psychiatrist who has studied patients undergoing heart surgery, "for a person to feel calm while going through what he experiences as a life-endangering situation. . . . When the danger has passed, however, it is usual for a wave of anxiety to sweep over the participant."*  (*Richard S. Blacher, "Heart Surgery: The Patient's Experience," in R. S. Blacher (ed.), The Psychological Experience of Surgery (New York, 1987), pp. 44— 61; p. 47.)  He could have been talking about me.

But this was only part of it. In addition to everything else, I was also going through the early stages of an identity crisis.  One reason it may have been so severe in my case is that as a dancer, I have always been deeply aware of my body.  And now, certain parts of that body — big, major, important parts — had been taken away and replaced with somebody else's.  What did that mean?  Who was this "else"?  And how did he, or it, fit into me?  I had always known who I was, but who was I now?  I had been ripped in two and sewn back up, but something was different.

I felt like Humpty Dumpty.  I too had experienced a great fall, a traumatic breaking apart.  And in my case as well, all the king's horses and all the king's men couldn't put Humpty together again.  All the king's horses were the machines that surrounded and monitored me in the ICU; all the king's men were the surgeons and nurses.  They were nimble and skilled, and they really did put somebody back together again.  But that new, reconstructed person just wasn't me.

Although I couldn't yet put this idea into words, I now believe that what made me so confused and disoriented during my early days in the ICU were the first stirrings of another presence inside me.  Increasingly in the months ahead, I would have the feeling that some aspects of my donor's spirit or personality existed within me.  During that first week, I knew only that the very center of my being was not fully mine, that it functioned and pulsated with its own rhythm, and a sense of separateness and independence.  I didn't understand what was happening to me — but whatever it was, I found it enormously upsetting.

I tried every technique I could think of to get myself back on track.  Meditation.  Visualization.  Affirmations.  But nothing worked.  I called Gail and told her I felt doomed, that I couldn't go on.  Gail was very concerned.  She called Barbara Katz, but this time even Barbara wasn't able to help me.  I was losing the will to live.

I felt claustrophobic, as if I were trapped and immobilized in an environment that was caving in on me.  I'd had the same feeling when I was pregnant with Amara.  Although I was thrilled to be having a baby, there was something strange and unknowable about this indeterminate being inside of me that I couldn't control.  This mysterious new entity, this future baby, was so precious and vulnerable that the only thing I could do was to take wonderful care of it, which meant taking wonderful care of myself.  After the transplant, I had a similar feeling about my new heart and lungs: that they were foreign and beyond my control, but terribly precious and vulnerable.

The dreams I'd had shortly before the transplant, about babies and pregnancy, now took on an additional layer of meaning.  My new organs had something in common with a pregnancy that I was just beginning to understand: like a fetus, they constituted a new life force within me, whose parameters were still unclear.  No wonder I felt crowded!

Dr. Baldwin appeared in the middle of my depression, as he had been doing at all hours of the day and night ever since the transplant.  I couldn't believe it: if I sneezed at three in the morning, he would suddenly materialize to say "Bless you."  If I awoke from a dream, he was there.  It was almost as if he, too, was living in the hospital.  Then one of the nurses told me that in fact he was.  For a week after my transplant, he slept in his office with his clothes strewn around and didn't leave the building.

What a relief it was to see him now!  While I had long ago stopped feeling awe and reverence toward doctors, in Dr. Baldwin's case I made an exception.  Ever since performing this miracle, he had seemed infallible and almost God-like to me.  And now, as I looked up at him, I felt certain that with all of his experience, he could help me.  The nurses had called me a pioneer, a real bionic woman. I had a zip-locked chest with an implanted heart and lungs.  But I also had a mind spinning with confusion.

"Dr. Baldwin, you've taken care of my chest.  Would you send in a psychologist to take care of my head?"

"I don't believe in psychologists," he replied.  This was a shock.  Not believing in Valium I could understand, but psychologists?  He and I seemed to be on two different tracks.  My feelings, it appeared, were of no real concern to him.  Only my physical body was real.

"Just keep riding your bike," Dr. Baldwin said.  "Don't even think about your head.  Act normal."

"But for me it is normal to think about my head!"

"Listen, Claire.  Stop all this touchy-feely stuff and get on with your life.  You came to me for this radical procedure, not Bernie Siegel."

I felt shattered when he said that.  I believed, and still do, that the practice of medicine depends on both the Baldwins and the Siegels, and I expect that in the not-too-distant future, physicians and healers will find ways to combine and integrate these two approaches.  But while we seem to be moving in that direction, new attitudes take time.  For the moment, I was a patient in this hospital where Dr. Baldwin was in charge.  And now my enormous gratitude toward this man was mixed with feelings of betrayal.  Although he had performed this difficult operation, and had done it brilliantly, he seemed to have no idea what it felt like to be on the receiving end.  What troubled me even more was that he didn't seem interested in finding out.

In retrospect, I was being unrealistic to expect Dr. Baldwin to help me emotionally.  We all see the world through our own eyes, and while Dr. Baldwin's vision seemed limited to me, he was a well-regarded surgeon who had alleviated a great deal of suffering for hundreds of people.  And for all my frustration that he didn't have the sensitivities and concerns of Bernie Siegel, Dr. Baldwin had saved my life.

When he left the room, I obediently climbed up on the bike and pedaled like crazy.

"Just act normal," the doctor had said.  But what was "normal"?  I wasn't normal before, and I certainly wasn't normal now.

Often, when I'm depressed, the worse I feel, the more creative I become.  Sitting on the bike, I resolved that as soon as I was strong enough, I would start a support group for transplant recipients.  Although this hospital had been performing heart transplants for years, there was no place for these patients to talk to each other.  Who else could possibly understand what this operation was like, and all the things it meant?

The workout took the edge off my anger, but I still ached with confusion.  Being thrust back into life, being reborn after being so close to death — this was overwhelming.  It would have been easier — not better, necessarily, but easier and more natural, if I had simply let go.  One reason I had been ambivalent about this operation was that assuming it worked, it would mean dying twice.  After a transplant you're thrown back into life with the knowledge that some day you'll have to go through the whole process of dying all over again.

Rationally, I knew that my new life was almost surely a blessing, even if it didn't yet feel that way.  But emotionally, being reborn was painful and terribly difficult — just as being born must be for an infant leaving the womb and being slapped into its first breath.  The physical reality of a transplant was so immense that even I, who spent so much of my life in the world of feelings, hadn't been able to see past the medical facts to even imagine the enormous emotional ramifications.  I wished somebody had warned me that these issues might come up.

A day or so later I awoke up from a nap to find a man I had never seen before, who appeared to be in his mid-thirties, sitting across from me.  He introduced himself as Gary Thorpe, and he told me that five years earlier he had undergone a heart transplant at this same hospital.  When he returned for his periodic checkups, Gail would ask him to talk with some of the newer patients, just as she would later ask me to do the same.  Gary seemed to understand what I was feeling, and his presence in my room was enormously meaningful and comforting — for the simple reason that he was alive and talking to me.  Although this man was a total stranger, I suddenly felt closer to him than to anyone else on this planet.  He knew what I knew.

Within minutes a surge of hope was moving through me.  Gary knew exactly what it felt like to have your heart pulled out of your body and replaced by the heart of a stranger.  And not just any stranger, but somebody whose involuntary and unchosen death had given you life.

What was it like when you got out of here?" I asked him.  I couldn't imagine how I would possibly cope when it came time to leave the hospital.  I could barely imagine leaving the ICU, where, for all my recent unhappiness, I felt safe and protected.  The doctors and nurses were always looking in on me.  Maybe that's why they called it the ICU.  I see you!  How could I ever survive outside the womb?"

"You just take it day by day," Gary said.  "Very slowly at first, but it gets better all the time.  You'll see."

After Gary Thorpe's visit, my depression lifted.  As soon as he left, I again thought about a support group.  I was so grateful to this man that I wanted to give others what he had given me.  There was, after all, a growing community of people who were having heart or heart-lung transplants, and we obviously needed each other.  Spiritually and emotionally, nobody else could truly understand us.


Now I had even more reason to be thankful.  Right after the surgery, Dr. Baldwin sent my old heart and lungs over to pathology, where one of the doctors estimated that my lungs had suffered so much damage that if it hadn't been for the transplant, I would have been dead within a month.  My heart was even worse; the right side was in total failure.  It's a good thing Gail had summoned me in May; June might have been too late.

At the time, I didn't fully understand that a transplant involves a simultaneous adjustment to two major changes: the loss of your own vital organs, and the concurrent acceptance of new ones.  And in case these changes aren't complicated enough, they can only occur when a life is lost — a life the recipient knows little or nothing about, except that a piece of it was transferred to her own body to give her life.  These are enormous issues, and although the operation is over in a matter of hours, an introspective recipient could spend years trying to deal with all the ramifications of the transplant.

And what about those missing organs?  As diseased as they were, my old heart and lungs were a part of me.  We knew each other like old friends.  Although they had caused me pain and suffering, we had been through a lot together.  I read somewhere that when sick people are given a theoretical choice among different illnesses, most of them prefer their own.  Your illness may not be pleasant, but at least it's yours.  It's familiar, and you know how to cope with it.  It's not that I seriously missed my old heart and lungs — or my old illness, for that matter.  But getting used to not having them was harder than I expected.

It also took longer.  Years after the transplant, I was walking down the street one evening when the thought occurred to me that for forty-seven years my life had revolved around the fact that my heart was defective.  I had danced anyway, but even so, much of my activity and my identity, especially during childhood, had centered on my heart murmur.  Suddenly I remembered: I don't have that heart murmur anymore.  Only then did it hit me with full force: I don't even have that heart anymore.

All my life I had watched the pained and contorted faces of the many doctors who listened to my old heart with their stethoscopes.  I always wondered: What are they hearing?  How bad is it?  Now, after the transplant, I had the strange and liberating experience of watching doctors listen to my heart without a frown.  In the hospital, some of them would actually smile.

Toward the end of my stay in the ICU, Ira called from New Hampshire to say that he was driving down for another visit.  A few minutes later, a nurse came in to say that my ex-husband was in the waiting room.

"That's impossible," I said.  "I just spoke to him, and he won't arrive until tonight."

"I don't know, Claire.  He's out there, and he says he's your ex-husband."

As I was trying to imagine who this could possibly be, David, my second ex-husband, came into the room.

"For all I knew, when you woke up with someone else's heart in your body, forgetting an ex-husband or two wasn't all that unusual.  Maybe it happens to everyone.  It's a good thing there are only two of them, I thought.  At least I think there are only two.  In my current state, anything seemed possible.

When David walked in, my heart was actually palpitating.  We had been out of touch for years, following our bitter divorce.  Seeing him, I felt a sudden rush of mixed memories — the arguments and the hurt, but also the love and the passion.  His showing up here was the first emotional shock to hit my heart since the transplant, and I started to worry that it might lead to rejection.

Then I realized that I was actually feeling with my new heart.  This heart, which less than a week ago was beating in another person's body, was now feeling my feelings.  And it seemed to be feeling them more powerfully than my own heart had, at least in recent months.  Maybe this new heart could withstand more emotion.  Maybe it was more resilient.  Maybe my old heart could no longer contain sharp, intense feelings.  In recent months my emotions had become faded and washed out, less red-blooded, more ethereal, and spiritualized.

It was hard work, getting used to this new me.

*