Professor Cromer Learns to Read

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Contents

Foreword I.........................................................ixForeword II........................................................xiIntroduction.......................................................xiii1. July 5, 1998...................................................12. Lessons from the ICU...........................................113. Shattered Identity.............................................214. Initiation into the Brain Injury World.........................335. Professor Cromer Learns the Alphabet...........................456. Coaxing Memory, Connecting Cognition...........................517. The Surging Tides of Emotions and Behavior.....................618. "Who Am I if I Am No Longer Myself?"...........................719. "Listen to the Sun on My Face".................................8110. Molly the Rehab Dog............................................9711. Mending Broken Hearts..........................................10112. Lurching toward Equilibrium....................................10913. Narragansett Homecoming........................................12514. Ceremony for a Second Marriage.................................13115. Crafting a New Retirement......................................13916. "All of the Above Is True".....................................15117. The Quest for Upwardness.......................................15918. Baptism in Provincetown........................................17319. Descent into Parkinson's Disease...............................18120. The Loneliness of an Intimate Marriage.........................19721. "Alan's Quality of Life Analysis"..............................20522. A Place to Belong..............................................21323. Coping: The Good, the Bad, and the Ugly........................21924. The Most Tragic Year...........................................23125. Parallel Paths.................................................23726. "Less Grief, More Green".......................................24127. The Dementia Chronicles........................................24528. "Am I Dying? I Forget".........................................25529. May You Rest in the Sweetest Peace.............................263Acknowledgements...................................................273References and Readings............................................277

Chapter One

One night in early October, I arrived home from the hospital, exhausted and depressed. Flipping on the answering machine, I was deluged by a cascade of messages from my husband, Alan. In rapid succession, he said:

"Hi Janet, just want to talk to you before you go to sleep. Lots of things to tell you about if I don't forget them. I love you!"

Click.

"Janet, you were here today, right? When will you be back?"

Click.

By the fourth message: "First time I've called. Just want to see if I know how to use the phone. Nothing special going on. Forgot what I wanted to say. Call me."

Click.

"Hello? I'm lost. Come get me. They won't let me leave."

Click.

The eighth message really grabbed me: "Thank you for everything you've done for me and half the things you've done I don't even know about." That was the first time in four months he'd thanked me.

Click.

"Where are you? Are you ever coming back to me?"

Click.

The last message was in a tremulous voice: "Hello? It's Alan. Is anyone there? Call me to say hello to me, okay? Calling to ask you a question about something. I forget."

Click.

In the thirty minutes it had taken me to drive home, Alan left twelve messages. As soon as he hung up, he forgot he had called. So he called again. Alan called me from his bed on the Brain Injury Unit of Spaulding Rehabilitation Hospital in Boston. As I listened, questions ricocheted inside my head: "How did this happen? Who is this person, this man posing as my husband? Where is the life we knew so well and were so happy to be living?"

* * *

Everything changed on July 5, 1998.

Alan and I had traveled from Boston to Chicago for a family reunion to celebrate the fiftieth wedding anniversary of Alan's sister, Barbara, and her husband, Sanford Kahn. We arrived Friday, and on Saturday, family and friends from across the United States gathered for a gala party at an Italian restaurant. Alan used his new digital movie camera to film the guests and record their messages to the anniversary couple. He always bought the latest technology and then enjoyed mastering the manual. While I sat at the table talking to his cousins, I could hear Alan's hearty laugh from across the room.

A few weeks earlier, Alan said, "I want to update my look for the party. I need some new clothes." Now my handsome, dark-haired husband looked like a PBS documentary director in his stylish black silk tee shirt and pleated linen trousers. When Alan buzzed by our table, I said, "Hey Larry, take a picture of Alan and me." Alan wrapped his arm around my shoulder as we added our congratulations to Barbara and Sandy. We looked like a happy and thriving couple in the prime of life. Indeed, we were. At sixty-two, Alan was a professor of physics at Northeastern University, prolific author, and developer of many educational programs. I was forty-eight, a psychiatric nurse, teacher, and registered art therapist building a private practice. We had been married for eleven years. Although we did not have children, we cherished our close relationships with several nieces and nephews.

All of the guests offered high-spirited tributes and reminiscences. Later that night, the family gathered back in the Kahn's yard for more conversation while fireflies flickered like stars.

On Sunday, the extended family shared lunch at a Japanese restaurant before dispersing back across the country.

Alan and I were running late as we drove to O'Hare International Airport. We weren't concerned. If we missed the flight, we could just take the earliest flight out on Monday. Alan was scheduled to start his favorite teacher-training program, Project SEED. I was due to facilitate support groups in a cancer program. We were in the thrall of the joyous weekend that put us back in touch with what mattered most: spending time with the people we loved.

Just that morning, we'd made love in our hotel room before joining the family on a three-mile, multigenerational walk. Alan jogged part of the route and then walked while quizzing the children about math and astronomy. Ever the science teacher, he was always good for explosive demonstrations and tricks that turned out to be elegant experiments.

I should have known something was wrong the second time Alan got lost trying to find the rental car return as we approached the airport. After the first wrong turn, I said, "No, Alan, Hertz is to the right." Even with two wrong turns, we made it to the terminal as the last boarding call sounded. We sprinted down the long corridors of O'Hare to the farthest gate.

As we handed in our tickets, Alan said, "Oh, I feel so sick to my stomach."

I replied, "I'll get you some Dramamine as soon as we get settled."

We figured he was paying the price for running on a full stomach, and it would pass. The flight attendant shut the door the second we boarded. Alan sat down while I stowed our bags. The plane began taxiing slowly down the runway.

As soon as I sat down beside him, Alan said, "Oh, I feel so dizzy," and slumped forward with his head in his hands. His face had turned pale.

I grabbed his wrist to feel his pulse. "Do you have any pain in your chest?" I asked anxiously.

Before he could answer, Alan fell back with his head resting against the window. I felt his pulse stop. I knew my husband's heart had stopped beating.

The crisis reflexes honed over twenty-eight years as a nurse took over. I started screaming, "Cardiac arrest! Stop the plane, call the EMTs, get us off this plane!" over and over. For a moment, I was stunned by how natural Alan looked. It seemed as if he was just taking a nap and his seat mate should wake him up when the flight landed in Boston. But his color rapidly faded to grey, then blue.

A doctor seated a few aisles forward jumped up to assist us. He and I dragged Alan's limp body into the narrow aisle, and the flight attendant joined the doctor in performing CPR. I kept screaming that Alan needed real oxygen while she tried to stretch the ridiculously flimsy overhead mask to reach him. There was no defibrillator on the flight, no medications, sparse medical equipment. I felt desperate and furious because the equipment was so inadequate. I wanted to do mouth-to-mouth resuscitation while the doctor did cardiac compressions, but the flight attendant told me to stand back while she used an ambu bag to squeeze air into Alan's lungs.

I knew I should be tracking the elapsed time since Alan's heart had stopped. I kept glancing at my watch, but didn't want the answer to be true. I knew that soon an emergency room doctor would ask me, "How long was he down? How long until he was defibrillated, until he got a pulse back?" The answer was already starting to be, "Too long."

The emergency medical technicians (EMTs) arrived and attached Alan to a heart monitor that showed the wild pattern of ventricular fibrillation. The chambers of his heart were quivering erratically in an uncoordinated rhythm, so blood was not being forcibly squeezed out to provide oxygen to his vital organs. Each time the EMTs slapped the defibrillator paddles on Alan's chest and yelled, "Everybody off!" my heart jumped into my throat. Once, twice ... they zapped him. His body leaped off the ground and then thumped back down from the power of the electric current. But the rhythm stayed wild.

They seemed to do everything simultaneously. Now Alan had an endotracheal tube in his throat so the oxygen piped through the ambu bag could be delivered to his lungs more effectively. An EMT inserted an intravenous (IV) line into his vein to give medications. Kneeling at my husband's head in the cramped aisle, I was horrified to see that his face was turning as dark as his black tee shirt.

My head churned with confusion and disbelief. I mumbled my questions to the backs of the high upright seats forming a canyon along the aisle. Why didn't I know? What did I miss? Why didn't we know that Alan had serious heart problems? What didn't I know that had caused my precious husband to drop dead so suddenly?

Here and there, a passenger's face dared to crane back toward the unfolding drama, but everyone seemed frozen.

The EMTs and doctor kept up the CPR, defibrillation, and medications until we had to move to the ambulance. As they struggled to maneuver the stretcher toward the open door, I was at eye level with the faces of the shaken passengers. I grabbed our books and luggage and cried out, "Why didn't I know? What did I miss? Pray for my husband, please pray for us," all the way off the plane.

One minute, I had my husband. The next minute, he was dead.

From my seat in the front of the ambulance, I could hear everything and peek back through a window between compartments. At one point, Alan's heart responded to the treatments and began to beat at a steadier rate of 130 beats per minute. He moved around in pain and showed purposeful movement when he tried to pull out the endotracheal tube in his throat. I sat stone still, chanting to myself, "Alan is going to live, Alan is going to live," in time to the rapid drumbeat of my own heart. I felt a leap of hope when I heard him gurgle and struggle-it meant he was alive.

But then Alan's heart stopped again, the EMTs shocked him and kept pushing medications into his body, and the ride to Resurrection Medical Center seemed to take forever. Resurrection was the closest hospital with a trauma unit and intensive care units.

When the ambulance pulled into the Emergency Department (ED) at Resurrection, we all ran in. Where was the Code Team? Why weren't they awaiting our arrival at the entrance? I was shuffled into a small, windowless waiting room while the staff fought to bring Alan back to life.

I sat staring ahead at the yellow wall. At first I kept up my chant: "Alan is going to live. Alan will get well. Alan will come home with me." My words were like a script scrolling down the length of the wall. My mind careened between a wife's absolute belief that my husband would live, and my belief as a nurse that it might be more merciful if he did not: "What if Alan dies? Should I have his body cremated here or brought back to Boston? But we only came for a reunion weekend. What if he lives but comes out a vegetable? His brain has been without oxygen for a horribly long time. He would never forgive me." Those words felt terribly disloyal, so I shifted back to my optimistic chant until they cycled through again.

Then I started making resolutions to change things that had been recent sources of disagreement or dissatisfaction in our marriage. I resolved that we would eat dinner together every night. As a psychotherapist, I led therapy groups or worked with clients in three different settings a few nights a week. No more late evening therapy sessions. No more, "I haven't seen you all week" from my neglected husband. Now my priorities were shifting from others to just Alan. I would take care of him in every way possible to restore him to good health.

I resolved to stop "bleeding out loud," as Alan referred to my prolonged descriptions of stressful situations or other problems. Alan hated it when I told stories about my clients (without identifying them, of course) who had major mental illness or end-stage cancer. Their circumstances terrified him, and he couldn't propose a ready solution to their problems.

While I was at it, I would give up nagging. When I went on about Alan's habit of not rinsing the sink after shaving, he would adopt a droning voice to say, "Thank you for making me a better person, dear."

I resolved to slow down my brisk walking pace to meet Alan's slower pace. Alan was a jogger, but when we walked together, he landed up several steps behind me. He had recently complained, "I feel like a dog trying to catch up to you."

We had both been unhappy with our pattern of not giving the other full attention when they wanted to talk. I'd said, "Please turn off The McNeil-Lehrer News Hour and listen to me," more than once. Now I resolved that we would give each other our full attention, be fully present when communicating. We would stop moving so fast.

For the last year, we had both been under a lot of stress. We had taken care of my mother in our home until she died of metastatic cancer ten months earlier. I was still in the throes of grieving her. I'd been spending my days off clearing out her home of fifty years in Somerville in preparation for selling it. Alan made frequent trips to New York and California, where he was consulting on educational standards and presenting at high-level conferences.

Just a month earlier, we'd made time for a few weekends at our vacation home in Narragansett, Rhode Island. There we relaxed, kayaked, and played as the loving couple we really were. Alan said, "This is what we need: time to just be together. We used to be good at this." I agreed.

The years of our marriage and hopes and dreams we shared going forward played out in snatches of imagination. I alternated between praying, chanting, resolving, and staring at the wall.

All alone.

Finally, a young resident physician in wrinkled scrubs approached from the trauma room. He sat down beside me.

"Alan has been down for forty-five minutes and is probably brain dead," he said. "You should be prepared."

I tensed up my shoulders and screamed at him, "No, it's not fair. He didn't get a chance on the airplane, there was no defibrillator, no meds. You keep doing everything possible. I want to give him a fair chance."

Because Alan had suffered a massive heart attack and cardiac arrest so suddenly, I felt that we couldn't stop treatment if he had any possibility of a meaningful life. We didn't even know the underlying cause of the heart attack. Alan was a vital, intelligent, active man. He looked much younger than his sixty-two years and was proud of his muscular physique. My moral compass, the guide I combined with medical information when making decisions, became making sure Alan received every treatment that would give him a chance at recovery and decent quality of life. But even then, I had a sense of uneasiness about all the factors we couldn't know or control. Even as minute-by-minute decisions needed to be made.

"You get back in there and keep resuscitating him!" I yelled.

The resident sighed, nodded, and turned back toward the trauma room.

I resumed my solitary vigil, wedged into the corner of the chair in the oddly silent hospital corridor. My husband will probably die. I shivered, even with my arms wrapped around myself. I hope I never feel that alone ever again.

Fifteen minutes later, a young female resident sat down beside me and said cautiously, "We did get a rhythm back. He is on a ventilator." Alan was alive.

I rushed into the trauma room to see for myself, to touch him, kiss him. From the corner of my eye, I could see the scene I had been part of countless times as a medical nurse: miles of EKG paper, discarded gloves, a forest of IV bottles. But my total focus was on my sweetheart's face, now waxy white, but no longer black. Alan was alive.

I said, "Alan, this is Janet, your wife. You're alive, you are going to be all right. I'll be right here with you. You're going to be all right."

A new chant had begun.

Someone had called Alan's family, and now Barbara and Sandy stood in the waiting room along with Alan's brother Richard, his wife Pam, and several nephews. Most of them were preparing to depart from Chicago when they received word that Alan was in critical condition in the Emergency Department. Less than three hours earlier, we had been trading bites of tempura from our bento boxes.

As I stood with the doctor looking into their solemn faces, I felt myself slip over a transom and through a door into our surreal new world. I took on the roles of wife with a capitol W, advocate, interpreter, and decision maker. Titles that would shape my identity for years to come.

I already grasped that everything in our lives had changed in an instant. But how could I know what that meant? I didn't know we were starting an epic journey to reclaim Alan's mind, body, and spirit from a devouring beast. I couldn't know the husband I loved had gone away forever without a chance to say good-bye. That he and I were now strangers who would have to get to know each other all over again. And decide to fall in love again. I didn't know anything about our future. I was clinging to the fact that my beloved Alan was alive.

Excerpted from Professor Cromer Learns to Readby Janet M. Cromer Copyright © 2010 by Janet M. Cromer. Excerpted by permission.
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