Advance Praise
“Janet Cromer has captured so elegantly and emotionally the ups and downs and roller coaster ride of experiencing a brain injury in her book “Professor Cromer Learns to Read.” I found myself eager to turn each page, cheering on the little accomplishments and grieving with her at the very complicated loss and grief that accompanies this devastating life change. Cromer takes us beyond the injury and into the recovery, which, while painstaking, never fails to help us understand the beauty and the grace in little things and to cherish what we do have.”
Lee Woodruff, coauthor of In an Instant: a Family’s Journey of Love and Healing, and author of Perfectly Imperfect
“Professor Cromer learns to read is an intellectual and emotional road map for anyone who has, is currently, or may in the future navigate the swampy waters of caregiving for a loved one with serious disability. It is the compelling story of love and struggle in the midst of illness, of the strength and frailty of the human spirit looking straight into the eyes of the beast, a starkly honest and forthcoming account of the ins and outs and ups and downs of their lives following the transformation of Janet’s husband by brain injury after a cardiac arrest. Extremely well written, I could not put it down.”
Mel Glenn,MD, Director, Outpatient and Community Brain Injury Rehabilitation, Spaulding Rehabilitation Hospital; Associate Professor, Department of Physical Medicine and Rehabilitation, Harvard Medical School
“During the seven years of Alan Cromer’s entry into the worlds of brain injury, dementia, and Parkinson’s, his wife, an experienced psychiatric nurse, is there to observe and report upon the initial crisis in an airplane, the long rehab in which her professor husband learns once again to read and write, and his death at the age of seventy. She also observes the changes in herself as she adjusts to life as a caregiver in a new kind of marriage. “The original Alan was not coming back,” so how to survive? Janet Cromer answers this question for herself and offers her strategies to others in her situation in this extensive examination of one well spouse life.”
Maggie Strong, Founder of the Well Spouse Association, author of Mainstay: For the Well Spouse of the Chronically Ill
“Janet Cromer has written a valuable, detailed account of the nitty gritty of caregiving for a spouse through four major progressive, destructive diseases from heart attack and accompanying brain injury to Parkinson’s disease. An “insider” on two counts – as a professional, a psychiatric nurse and therapist, and as a spousal caregiver – she writes from both points of view, of how the ravages of her husband’s illness took over his life; and of how as his caregiver she went through rolling grief (repeated mourning) and some very difficult emotional readjustments in their relationship and intimacy.
This is a book that works on two levels: for the professional caregiver and spousal caregiver. For the former it cannot but help to increase the empathy for, and admiration of the family caregiver, supporting their loved one. As for the latter, as a former spousal caregiver, her descriptions of her ambivalent emotions, joys and travails, ring absolutely true.”
Richard Anderson, Board and Executive Committee Member; Immediate Past President, Well Spouse Association
Professor Cromer Learns to Read:
A Couple’s New Life after Brain Injury
Janet M. Cromer
Copyright 2010 Janet M. Cromer
Smashwords Edition
Alan, I love you forever,
Janet
This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.
©2010 Janet M. Cromer. All rights reserved.
No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.
First published by AuthorHouse 1/9/2010
ISBN: 978-1-4490-6421-1 (e)
ISBN:
978-1-4490-6419-8 (sc)
ISBN: 978-1-4490-6420-4 (hc)
Library of Congress Control Number: 2009913944
Cover photo by Michael Hoyt, "Alan and Janet at the 2004 "Heads Held High" Walk at Jamaica Pond.
Contents
Foreword
I
Foreword
II
Introduction
1.
July 5, 1998
2.
Lessons from the ICU
3.
Shattered Identity
4.
Initiation into the Brain Injury World
5.
Professor Cromer Learns the Alphabet
6.
Coaxing Memory, Connecting Cognition
7.
The Surging Tides of Emotions and Behavior
8.
“Who Am I if I Am No Longer Myself?”
9.
“Listen to the Sun on My Face”
10.
Molly the Rehab Dog
11.
Mending Broken Hearts
12.
Lurching toward Equilibrium
13.
Narragansett Homecoming
14.
Ceremony for a Second Marriage
15.
Crafting a New Retirement
16.
“All of the Above Is True”
17.
The Quest for Upwardness
18.
Baptism in Provincetown
19.
Descent into Parkinson’s Disease
20.
The Loneliness of an Intimate Marriage
21.
“Alan’s Quality of Life Analysis”
22.
A Place to Belong
23.
Coping: The Good, the Bad, and the Ugly
24.
The Most Tragic Year
25.
Parallel Paths
26.
“Less Grief, More Green”
27.
The Dementia Chronicles
28.
“Am I Dying? I Forget.”
29.
May You Rest in the Sweetest Peace
Acknowledgements
References
and Readings
Selected
Resources
About
the Author
Foreword I
What does it really mean to live with the effects of a brain injury long beyond discharge from rehabilitation? How does one begin to redefine themselves with incredible limits on needed services? How much is needed of family caregivers and advocates? What are the human costs? How does this injury test the limits and capacity for love and devotion?
With daring honesty, compassion, and intense love, Janet Cromer has given many readers a gift. This book will serve anyone interested in the difficult journey of recovery after an acquired brain injury, understanding the huge commitment required of a family member in this recovery, and navigating and overcoming our healthcare and human service delivery system. This book provides the details of what it takes to undertake the awesome roles of survivor and caregiver.
Janet shares her insights with no holds barred. This is a story of very personal and emotional experiences. She uses her professional expertise and objectivity when appropriate, and she naturally exposes her special brand of humor and compassion for others. This is not only Janet’s journey; it is also her husband’s journey. She merges their shared attributes and gives us a picture of her loving and gifted husband to tell a very real story. I witnessed and learned from their story by observing and working with both Alan and Janet.
Having had the pleasure of knowing Alan as he was challenged in his struggle with his own rehabilitation and ensuing medical crisis with so much courage, optimism, and honesty was an honor. I could only imagine who Alan was before the brain injury, but imagining was not hard. I do know Janet, and reading her book will leave you better informed and a little anxious as we all know life can change in an instant…and through this story.
By reading Professor Cromer Learns to Read, we increase our understanding of the level of love, caring, and respect that makes a marriage or any loving relationship complete as it is so clearly described through the living of each day and of every stage of Alan and Janet’s lives.
Marilyn Price Spivack
Co-Founder of the Brain
Injury Association of America
Foreword II
…You and your husband have just boarded a plane to go home after a fun-filled weekend away with people that you love and that love you. Within minutes, your husband suffers a massive heart attack, cardiac arrest, and subsequent anoxic brain damage. An hour later, you don’t know if he’s going to survive. Days later, he’s still alive, but that man connected to all kinds of machines with tubes and wires doesn’t look or act like your husband. Your life as you knew it is irreversibly over…
…You and your wife have just boarded a plane to go home after a fun-filled weekend away with people that you love and that love you. Within minutes, you suffer a massive heart attack, cardiac arrest, and subsequent anoxic brain damage. An hour later, no one knows if you’re going to survive. Days later, you’re still alive, but you’re medically unstable, agitated, confused, in significant pain, and you can’t communicate. Your life as you knew it is irreversibly over…
This book, written by Janet Cromer about her and her husband, Dr. Alan Cromer, following his heart attack and cardiac arrest, is simultaneously a beautifully written portrayal of a couple’s love and commitment to each other and an honest depiction of their experience of the health care system in this country. The book chronicles this couple’s life from that fateful moment on the plane until Dr. Cromer’s death seven years later. It describes two lives filled with dignity, integrity, and strength, lives that were united by love, passion, and a sense of humor. It candidly shares their unrealized hopes and expectations, conflicts and unmet needs, and successful and not-so-successful strategies to deal with these. It illustrates ongoing re-invention, re-prioritization, and survival of relationships and of self. Consistent with their dedication to their professional roles as college professor (Alan) and psychiatric nurse, teacher, and registered art therapist (Janet), this book TEACHES the reader about anoxia, brain injury, Parkinson’s disease, and dementia. It portrays the shared and individual needs of patients and their spouses, the art and the science of rehabilitation, and the health professionals who commit themselves to the care of others. It highlights the strengths of our healthcare system and exposes its weaknesses.
Life is characterized by a series of ups and downs- some anticipated, and some not. Throughout it all, people continually search for dignified ways to peace, fulfillment, and love. Whether or not you are a husband, wife, daughter, or son; health professional; policy maker; insurer; we all share the responsibility and the desire to provide and receive life-long support with which to live lives of dignity, as Janet and Alan’s “Odyssey” teaches us in the book.
Knowing Janet and having known Dr. Cromer, it is my honor to write the foreword to this beautifully written personal and professional legacy of life after brain injury. May it give you hope and inspiration.
Therese M. O’Neil-Pirozzi, ScD,
CCC-SLP
Associate Professor; SLP Graduate Program Director,
Northeastern University
Spaulding Rehabilitation Hospital, Boston
MA
Introduction
One minute, I had my husband, Alan. The next minute, he was dead. Our lives changed forever on July 5, 1998, when Alan suffered a massive heart attack and cardiac arrest on an airplane. Alan was left with a severe anoxic brain injury from lack of oxygen to his brain during the prolonged resuscitation effort.
In an instant, Alan went from being a professor of physics at Northeastern University, a prolific author, and an engaged and loving person to being someone with a life-altering brain injury who had to learn how to do everything all over again. And all at the same time. Alan lost his abilities to read, write, walk, talk, think, and remember. Over the ensuing months and years, he regained all of those abilities to varying degrees, and we made a new life with meaning and gusto.
But this story is not just about Alan’s experience. As Alan’s wife and caregiver, I went through many parallel changes, losses, and adaptations. We learned the art of composing a whole new life and marriage as individuals and partners through determination, courage, grace, mistakes, and humor. This is our story.
When Alan became ill, I read several excellent memoirs about life after brain injury. But they all covered just the first year or two of the experience, and often ended at the peak of improvement in rehabilitation. My intention for this book is to share our experience over several years, through the challenges and triumphs of rehabilitation to our adventures getting to know each other all over again and redefining marriage—at least a few times. Like many survivors, Alan developed additional major medical problems. For Alan, those were dementia and Parkinson’s disease (PD). Those conditions brought their own complications and limitations to be reckoned with.
Alan was truly a “Real Professor” both before and after his brain injury. He taught all those who loved him and those who treated him a new meaning of courage, resilience, determination, motivation, and passion. He most loved to share his experiences with patients and families at Spaulding Rehabilitation Hospital’s community and professional education programs. When he described what it was like to learn to read and write again, the college student with a traumatic brain injury (TBI) and the mechanic just beginning stroke rehab listened intently. Then they carried Alan’s message of hope and motivation to their next treatment session.
I decided early in this journey that I wanted to write a book to make sense of all that happened to us, and to share our experience honestly with others on the same rocky road. This book is not meant to be a case study or an instruction manual. Every brain injury is different, and every person is unique. I humbly offer some of what we learned, what sustained us, what pushed us forward, the mistakes we made, and how we made a new life with love and meaning.
The main lesson I’ve learned about writing a memoir is that you have to leave out 93 percent of the story and focus on a realistic number of themes. I chose the themes that interested or troubled Alan and me the most:
What is it like to relearn everything you used to know?
How can you possibly build a new identity when you have forgotten who you are and lost many parts of that person to brain injury?
How can individuals and couples grow in love and adapt to challenging circumstances?
What makes life worthwhile, stimulating, and fun in the face of progressive illness?
What does it mean to live a good life and prepare for a good death?
Medical treatments and medications recommended for specific conditions change frequently and vary widely with each person’s needs and the preferences of his treatment team. I chose not to go into details about the particular medications Alan received, since the information would be outdated now. I describe the underlying principles when that might be helpful.
Most of the research and writings about brain injury focus exclusively on traumatic brain injury. I searched in vain for material specific to the long-term effects of anoxic brain injury and the different needs of survivors of cardiac arrest. I hope this book will contribute to our understanding of anoxic brain injury.
In recent years, there has been an exciting revolution in understanding the neuroplasticity of the brain—the brain’s capacity to change and alter its structure and functioning. Neuroscientists and clinicians now know that the brain can continue to heal and adapt for years after injury with specialized treatment, including cognitive rehabilitation. The Brain Injury Association of America defines “cognitive rehabilitation” as “a systematically applied set of medical and therapeutic services designed to improve cognitive functions and participation in activities that may be affected by difficulties in one or more cognitive domains.” In other words, the ability to think, remember, solve problems, make decisions, communicate, and get along with other people, which we all need to be independent, social, and productive people.
Alan benefited from intensive and sustained cognitive rehabilitation and made gains in several areas for years after the brain injury. Our story illustrates how building on his strengths and interests made life rich and worthwhile.
I’ve been privileged to talk with a few hundred brain injury survivors and their closest family members. Every family caregiver tells the story of the “Moment Everything Changed,” with the emotional charge of an event that happened yesterday, even if the accident was twenty years ago. That’s how dramatic the turning point is, regardless of the cause of the brain injury or the age of the person affected.
All of the statistics about brain injury are really about huge numbers of human beings whose lives are dramatically changed, often forever. Every year, 1.4 million Americans sustain brain injuries from falls, motor vehicle accidents, sports concussions, assaults, illnesses, and accidents. Over 125,000 of those people who suffer a brain injury become disabled. According to the Centers for Disease Control and Prevention, at least 3.17 million Americans currently live with disabilities resulting from brain injury. Most of those people are cared for at home by family members and want to be part of their community.
I’ve been a medical and psychiatric registered nurse since 1970. However, like most of us, I’d had very little exposure to the specific deficits and ravages brain injury can impart. Brain injury is called the “silent epidemic” because the consequences are often not visible to a casual observer. The young man walking down Broadway who was hit by a car last year may look just like you or me, but his personality along with his abilities to learn new information, recognize you and say hello, and find a job he can do now may all be seriously affected. These are the functions that make us who we are and allow us to participate fully and independently in the world.
Now there is a new type of brain injury disrupting the lives of mounting numbers of veterans of the wars in Iraq and Afghanistan. A 2008 Rand Institute report states that nearly 320,000 individuals suffered a probable traumatic brain injury while deployed. Those injuries range from concussions to severe blast injuries from improvised explosive devices (IEDs). Brain injury is now considered to be the “signature injury” of this war. Many of these veterans and their families will require intensive rehabilitation followed by long-term treatment and services for the chronic problems that can be the consequences of brain injury. Only then will they be able to lead satisfying and productive lives.
Much has changed even since Alan‘s brain injury occurred in 1998. Advances in emergency and battlefield medicine, rehabilitation, and technology have improved survival rates. That means that more people are living with brain injuries they would not have survived even a few years earlier. For many, the chance of resuming a life with dignity and meaning is enhanced by excellent rehabilitation, community reintegration programs, and specialized educational facilities.
But here is what everyone should understand, which never changes:
First, a large percentage of persons who sustain a brain injury require and deserve lifelong support and specialized cognitive rehabilitation to reach their best outcomes and lead satisfying lives.
Second, there is an increasingly urgent need for research and clinical programs to prepare and coach family caregivers to manage the complex needs of the person with a brain injury as well as the family’s needs for years after the brain injury occurs.
Once a person leaves a formal rehabilitation program, family members are expected to continue teaching the strategies necessary for daily activities, relearning cognitive and social skills, and managing psychiatric and behavioral issues. The best rehabilitation programs try to train family members to carry on the work of specialized professionals, while supporting the family’s intense emotional adjustment. However, even those programs are not equipped to provide the training necessary when the survivor’s needs change as the years go on.
Putting these services in place is a public health issue that will require collaboration and conviction between those affected by brain injury, medical professionals, policy makers, public and private insurers, and concerned citizens.
Only when the combination of ongoing specialized rehabilitation and improved family resources are in place can we, as a society and medical community, provide the treatment and quality of life every person with a brain injury and their family caregivers deserve.
Janet M.
Cromer
Jamaica Plain, MA
August 2009
Alan experiments in his home science lab in June, 1998.
1. July 5, 1998
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.
2. Lessons from the ICU
The first night of Alan's new life in the ICU was horrific. All the indicators of potential recovery were absent. His blood pressure (BP) kept plummeting, even with vasopressor drips to elevate it; his heart kept reverting to dangerous rhythms; his pupils were dilated and didn’t shrink down when a light was flashed in his eyes, which indicated brain damage. He developed pulmonary edema from fluid building up in his lungs, aspiration pneumonia from vomiting during resuscitation, and gastrointestinal bleeding.
All this within a few hours.
"Mrs. Cromer, your husband's condition is grave, very critical," each new medical specialist told me.
"Mrs. Cromer, what do you understand?" each nurse asked repeatedly.
Impatiently, I repeated the latest crisis synopsis and added tersely, "I get it, I get it. My husband could die again at any moment."
No one had called me “Mrs. Cromer” in the eleven years we had been married. But now it fit. I wanted everyone to know I was attached to Alan Cromer and guarding him closely.
The nurses were very kind about letting me stay right beside Alan all night. Letting them know I was a nurse set up an unspoken agreement that I had more freedom to visit and stay during procedures than other families did. In exchange, I was not supposed to get in the way or become hysterical without warning. It was a fair deal. Alan's family gathered in the ICU waiting room, an uncharacteristically quiet group of grim people who usually talked, debated, and laughed all at the same time. And Alan, always the most gregarious but now unresponsive, was the most silent of all.
Stark overhead lighting intensified Alan's waxy pallor and the engulfing machines that pumped, wheezed, dripped, drained, and clicked continuously. High-tech equipment monitored his heart rate and rhythm, blood pressure, urine output, and oxygen level as well as giving sophisticated information about his entire cardiovascular system. He was in a coma, partly because of being so sick and partly from sedative medications he’d been given so his body could rest as much as possible. I carefully snaked my fingers through the bedrails and wires to grasp his cold fingers. I whispered, "I love you, Alan. You are going to live." I just had to touch him, kiss his forehead, watch his chest rise and fall. Let him know I was there.
Around midnight, a Catholic priest shuffled in and haltingly asked, "Would Mr. Cromer like to receive Last Rites?”
I didn’t reveal that Alan considered himself a scientist-atheist and scorned organized religion. It was one of the areas on which we’d agreed to disagree. I just said, “Alan isn’t Catholic, but I’d appreciate it if you said a blessing for him.”
Bringing my mouth closer to his ear, I shouted, "Alan, there are no atheists in the ICU; I want this priest to pray for you, Alan."
The blessing did not have an immediate effect. His condition continued to worsen.
I’d been stoic and in control from the time of Alan's cardiac arrest at 5:00 pm Sunday. Somehow, I made numerous decisions and translated the medical jargon for the family. I made a list of people in Boston for Pam to telephone; I even called my sister and Alan's closest friends myself. But at 2:00 am, as the staff rushed in to respond to another episode of Alan "losing" his blood pressure, I finally crashed into sobs of realization at all that had happened. I was terrified that Alan might die, even with the best medical care. I thought, I don't know if I can cope with this. I have no reserves left after caring for Mom. It would have been better if I'd had a year in between to recover; what am I supposed to do?
As if any of us get to schedule life’s great catastrophes.
Regret gnawed at me for not reacting to something Alan said a few weeks earlier. One morning, he leaned against the door on his way to teach a physics class at Northeastern.
“Janet,” he said, “I’ve never felt this tired, this exhausted. This is very strange.”
I gave him a sympathetic look, but answered without fully taking in his concern. “Oh, honey, that’s understandable. You’ve been flying to California, consulting nonstop, plus teaching classes. In two more weeks, we’ll go down to Narragansett and collapse on our beach.”
Now that scene haunted me. I should have known his exhaustion heralded heart problems.
Around 3:00 am, I noticed with horror that Alan was hemorrhaging blood from all the wounds on his body. A young intern with red hair steered me to a chair in the waiting room. Kneeling on the floor beside me, he carefully explained that Alan had developed disseminated intravascular coagulation (DIC), a condition that combines excessive bleeding and the formation of hundreds of tiny clots. The treatment for DIC could have the adverse effect of causing bleeding within his brain and further damage. Untreated, the DIC could cause clots to block off major blood vessels, leading to a different kind of death. "What do you want us to do?" he asked. The optimism I was clutching slipped out of my grasp, and my heart plummeted.
I needed time to think and craved the familiar solace of lighting candles while offering intentions and hoping some greater power could intercede with fate. So, in the chapel with Barbara and Pam, I prayed to Kwan Yin, the Buddhist goddess of compassion, God, my mother, the Blessed Mother, St. Anthony: "Please give me guidance, guts, wisdom, and fortitude. Help me make these decisions the way Alan would make them for himself."
I finally turned in the bench and explained the medical considerations to Barbara and Pam. They were considerate, but Pam said, “You are Alan’s wife and will have to make the ultimate decision.”
Alan and I were no strangers to medical illness and loss. Alan's first wife, Margie, had died of Hodgkin's disease when she was thirty-five, ten years before we met. My father was killed in an industrial accident when I was twelve. I had been the nurse manager of a hematology/oncology unit and knew that life could be altered in the instant of diagnosis. We'd had many long conversations about our final wishes and agreed not to postpone the things we most wanted to do, such as travel. We had traveled around the world twice, a decision I was even more pleased by now.
But I couldn’t remember a single conversation about sudden death, resuscitation, and probable brain damage.
I decided to sign the consent form authorizing treatment of DIC, but knew the attempt might be futile. My decision-making compass started to shift from "I want Alan to have a fair chance, I want to try everything" to a more tempered "I want to do whatever is in Alan's best interest." I was beginning to realize that we faced choices that could keep Alan "alive,” but with no quality of life.
Because DIC is so difficult to treat, the doctors told us we should take this opportunity to let Alan know we loved him and, essentially, to say good-bye. Sitting on the edge of the bed, I cradled my husband's machine-driven body in my lap, while one by one, his family members whispered their anguished love and gratitude to him. A solemn procession of the people Alan loved most in the world said the things we never can tell each other often enough in life. Alan had played a major role in each nephew's childhood, and now they reminisced about learning to swim or being tutored for an important exam.
Toward morning, I noticed that the lap of my dress was soaked with Alan's blood. I thought, I'll have to go home to Boston carrying my husband's ashes in a box on my lap. I'll look like Jackie Kennedy: bereft, stricken, and wearing the bloody evidence of what happened for all to see.
To the staff’s amazement, the DIC treatment improved Alan's clotting mechanisms enough for the bleeding to stop. While I counted the hours since his heart attack, the ICU staff moved into a system of counting days. Monday was day one.
That morning, Dr. H., a tall, athletically built neurologist, asked me to recount the exact details of Alan’s arrest and resuscitation. He nodded and shook his head sadly when I described the scene on the airplane.
"You realize that Alan's brain might not be viable, don't you?" he asked.
I shrugged my shoulders and said, "I know what the words mean, but I can't imagine how that will look on Alan.”
It was implausible to me that Alan, the physics professor and textbook author, might not have his intelligence, engaging personality, or sharp wit. What would be left?
I came up with a manifesto: "If anyone has extra brain cells, it's Alan. He has the brain of one-and-a-half people because he constantly teaches himself hard subjects. His hobby is teaching himself computer languages. He’s always looking up something in Encyclopedia Britannica. If anyone can bring his brain back, it's Alan!"
Dr. H. didn't dispute me. In fact, he said that people with higher intelligence tend to have better outcomes after rehabilitation. One reason could be that they are accustomed to the rigorous discipline required for rehab.
Running on a combination of adrenalin and sleep deprivation, I boasted, "I can go the distance with Alan." But no one could anticipate what that journey would involve or where the finish line might be.
The cause of Alan's heart attack was still a mystery. We never knew he had serious heart disease until his heart stopped. To investigate, the doctors needed to perform a coronary angiogram, even though his condition was so unstable. The results would provide critical information for the next series of treatment decisions. During the angiogram, a thin catheter was threaded through Alan's groin and advanced through the major coronary blood vessels to locate blockages or clots. The angiogram results showed that four main vessels were blocked from 80 to 100 percent.
According to the cardiologist, Alan would need coronary artery bypass surgery if his condition ever stabilized enough to survive it. He also said that Alan's family history was a contributing factor. Alan's father had died of a heart attack when he was fifty-nine, so Alan had led an exemplary lifestyle to avoid his father's fate. The cardiologist said that because Alan’s father had severe cardiovascular disease, Alan had a fifty percent chance of having a heart attack even if he watched his diet, avoided smoking, and exercised regularly. So far, Alan had made it to sixty-two.
As I listened to the pieces come together, I felt a white-hot rage spread through me. How had this been allowed to progress so far? Why hadn’t his doctors caught it earlier? Alan had an annual physical exam, kept his cholesterol around the 200 mg/dl level, and jogged regularly. Then, all of his strange, intermittent symptoms blew around in my mind. For months, Alan had pain behind his left shoulder that bothered him a lot. He thought he had pulled a muscle working out on Nautilus equipment. He went to the doctor a few times and had a course of physical therapy, which he thought helped for a while, but then the pain returned. Much later we learned that the pain behind his shoulder was indeed caused by a blocked coronary artery. Having less typical symptoms is a risk factor all its own.
There were times when Alan had to stop walking because he felt so weak, but it passed and he felt decent. And what were those blood pressure pills he took a few years ago? The ones that lowered his BP so much that he fainted when he stood up? And now I recognized that Alan's confusion finding the rental car return had been due to inadequate oxygen flowing to his brain. The heart attack had already started. I shuddered to realize that if his heart had stopped while he was driving, we would both have been killed.
I carried that rage about whether this heart attack could have been avoided for days. Then I had to make a choice. Alan's progress kept moving one step forward and two steps back. Each day that he clung to life became more complicated. I would be in Chicago for an indeterminate time. I needed every bit of my concentration and energy to put toward his recovery. I could choose to be consumed by my rage or set it aside and stay in the present moment in the ICU. But I couldn't do both.
Somewhat begrudgingly, I chose to set anger aside at least until we were home and I could track down medical records to put the pieces together.
On Tuesday, Alan's second day in the ICU, he had his first big breakthrough. His brother Richard, who was partially blind, maneuvered his way through the machines to stand at Alan’s bedside. I stood on the other side.
As Richard cooed softly, "Alan, it's Richard. I'm here to protect you, little bro," Alan opened his eyes and turned his head in the direction of Richard's voice.
That was the first sign that Alan was capable of responding.
When I said, "Alan, this is Janet. Your wife is here too," he turned in my direction and tried to focus his eyes on my face.
We were ecstatic! Even with a ventilator breathing for him and an intra-aortic balloon taking over his heart’s pumping action, Alan was in there. He could try to connect with us. Our hope shot sky high. But the staff emphasized that neurological responses are inconsistent and affected by many variables. Still, with each clear sign of life, we rejoiced.
Alan was bombarded by complications from not getting enough oxygen to his organs, along with the aftereffects of resuscitation. Dr. B., the chief resident who became Alan’s ally and our family’s best educator, explained that being resuscitated for an hour is the equivalent of being hit by a train. Alan developed pancreatitis, shock liver, bowel obstruction, infections, pneumonias, and renal insufficiency. His kidneys were not able to detoxify and filter the flood of broken down tissue and angiogram dye. The doctors started renal dialysis to remove toxins from his blood while waiting to see if his kidneys would be able to recover.
The only thing Alan wanted to do was to get comfortable. He wanted to get into his favorite position to relax by crossing his right ankle over his left, and folding his arms behind his head. So, he struggled. Alarms screeched and nurses came running to scold him to lie still. I implored the staff, “But he always sleeps with his ankles crossed.”
Dr. B. understood that some of Alan’s restlessness came from being restrained for hours in the same position. So, Dr. B. made sure to loosen the restraints and let Alan relax whenever he was in the room.
Some mornings, Dr. B. greeted me with, “Look Janet, Alan has a positive ankle-cross sign.”
I was elated to recognize this little bit of my husband reclaiming himself. I asked the staff, “If the gestures are the same on the outside, does it mean the person is the same on the inside?”
No one knew the answer.
Alan’s absolute worst problems were pain and agitated delirium. Each of his medical problems came with its own horrific pain. In his confused state, Alan frantically tried to pull out the endotracheal tube, IV lines, feeding tube, and catheters. When the nurses tried to restrain him, he kicked and hit at them. He was literally out of his mind from a combination of pain, metabolic imbalances, damage to his brain, the constant noise and lights of the ICU, and a buildup of medications. Who could blame him for wanting to escape from this torture chamber?
The delirium, which is common in seriously ill people, went on for days. The hospital did not have a specialized psychiatrist on staff who could evaluate Alan’s extreme combination of conditions and recommend a sedative that would safely restore him to his right mind.
One day, I was reading to Alan when he tried to get out of bed despite the huge IV lines entering his groin. I grabbed his wrist and said, "No, Alan. Please lie down, you'll get hurt. I'll get you what you want."
Alan looked at me with a wild, unrecognizing stare. Suddenly, he seized my arms with superhuman strength, let out a growl, and twisted the flesh in a burning pinch that left me bruised for a week. Before the nurses rushed in, he pinched my breast in the same way. My own husband, or this man pretending to be, had just hurt me. Was this how he would be from now on: out of control and inconsolable? It took many failed attempts before the doctors found the right medication that would calm Alan down without making his blood pressure too low. Witnessing Alan in the throes of agitated delirium was the worst part for me.
Far from home, I camped out in the ICU waiting room for almost two weeks before a room became available in the hospital’s guest house. I claimed a comfortable chair as my turf and set up my overnight bag. A bonded community soon formed among the waiting room families. We took telephone messages for each other, followed their loved one's progress hour by hour, and agreed that the person whose patient had the most horrible day should sleep on the lone couch that night.
When I tried to fall asleep, my mind swam with images, information, numbers, and reminders. This was different from the undercurrent of anxiety from worrying if Alan would live or die. It was as if I could watch the process my brain undertook each night to sort through that day’s mountain of data and organize it into a large file drawer. I visualized papers fluttering into files, tucked neatly out of sight. The work done, my brain let me grab a few hours of sleep.
I often felt powerless to help Alan with the extensive healing his body needed to do. All I could do was be there with him. I didn’t underestimate that contribution, but I wanted to do more. I often composed relaxation/healing imagery scripts for my clients. So now I wrote a long, detailed script of all the changes that would happen to Alan’s body and mind as he healed. It helped me to sit beside him and recite the litany of healing imagery that I fervently hoped would happen:
“Alan, you are wrapped in a blanket of blue light. The light of my constant love that keeps you safe and secure. Each breath you take is made up of your strong will to live, your body’s capacity to restore and regenerate, and your resilience. You are recovering through excellent medical care, along with the prayers and healing energy sent to you from everyone who loves you …
“As you breathe in, vital energy flows to your brain, cleansing the toxins, bringing fresh oxygen and nutrients to every cell to restore your tremendous mind.
“Inhale, and white light flows down to your heart, relaxing and dilating the coronary arteries, letting your circulation flow freely …”
I detailed the healing changes happening from head to toe, within every organ and system. Several times every day.
One afternoon, a visitor told me I had a call on the waiting room phone. When I answered, an unfamiliar voice said, "This is Dorothy. I was the flight attendant who did CPR on your husband."
"Oh, thank you so much," I whispered.
"Everyone on the plane prayed for you and Alan, and as we landed at Logan Airport, the pilot announced that Alan had been brought back to life," she said. "I'm so glad to hear Alan lived. We attendants were so worried that if he died, you would annihilate yourself with guilt because you kept saying, 'Why didn't I know? What did I miss?’"
I cringed to hear my words repeated. "There’s a good chance I would have felt guilty for a long time,” I said. "But now we have another chance, and I'm trying to move ahead."
Five days after his cardiac arrest, Alan was awake and looking in my direction. I said, "Honey, this is Janet. You're in the hospital. You had a heart attack. You're safe and getting better every day." As I said the words "heart attack,” Alan's blue eyes flew open, his blood pressure jumped ten points, his legs flew off the bed, his face screwed up around the endotracheal tube, and he began to cry. He twisted his head to stare at the cardiac monitor beeping above the bed. It pained me to cause him so much agony, but it was the first time he grasped an explanation. I stroked and kissed him until he calmed down. But he understood.