The Woman Who Can't Forget (18 page)

The organ donation network had told me that I would not be able to meet the people who were receiving Jim's organs, and that most likely they would not contact me, but the coordinator I spoke to suggested that I might want to write a letter about Jim and our life together, which would be put on file in case any of his recipients ever wanted to know about him. I did so, and miraculously, I got a call that I had received a letter from the recipient of Jim's left kidney. She expressed her gratitude, telling me she felt the donation was a blessing from God, and then she wrote something that startled me. After she'd returned home from the surgery, every morning she felt she had to have a grilled cheese sandwich. “I don't know if that was one of your husband's favorite things,” she wrote, “but I craved one all the time.” I couldn't believe it. Jim loved grilled cheese sandwiches.

She ended her letter by saying that if I would like to contact her, she would love to hear from me, and February 2006, I met the woman I now affectionately refer to face-to-face as “left kidney.” It was the Monday of Washington's Birthday, eleven months after Jim died. My mom came with me. When the recipient and her mother and the coordinators came in, she just grabbed me and hugged me, and as I put my hand on her back, I remember feeling that it was Jim in there. She gave me roses, and we sat down and talked. Meanwhile my mom started talking to her mother, and brought up the sudden craving for grilled cheese sandwiches. Her mother laughed, “Grilled cheese sandwiches nothing. This is a girl who didn't like dairy; now she needs to drink a gallon of milk a day.” My mom and I just stared at one another in disbelief. Jim absolutely loved milk; he drank it with every meal; he drank it by the gallons. They also drank the same kind of milk: 2 percent.

Before Jim passed away, I would have expected that I would have simply stopped living if he had died; I would have thought I would crawl up into a catatonic ball and drive myself mad with remembering him. In the face of Jim's death, the Jill of a few years earlier would have collapsed in a mental hell of racing memories, refusing even to admit I would need to let him go. But Jim had changed me. I was devastated by losing him, but I found that I was determined in the face of this crisis to deal with it the way Jim would have wanted me to. This was the most profound experience I had ever gone through, and the reality and finality of death shook me to the core. I realized in a deep way that I had no choice but to accept the horrible twist of fate we had been dealt and to go on.

I dreaded the first morning after I buried him—waking up a widow—and I stayed in bed most of the day. Finally, at 6:00
P.M.
I reluctantly forced myself out of bed to meet Andi for dinner. I know that it was only because Jim would have been disappointed in me if I hadn't gone on with my life that I was able to do so. Then next morning, I got out of bed and sat in a chair; that was the best I could do.

The next several months were a struggle. I could not stop thinking about Jim, flashing back to all of our times together, reliving and reliving those six days in the hospital. I walked around in a haze and cried almost continuously, spending many days largely in solitude, cycling through memory after memory of him. When my parents went out, I would call them continually, worried that something might have happened to them. I was shell-shocked by the memory of the call about Jim having collapsed, and I couldn't shake the fear I might get another call like that at any moment. To this day, I do not go anywhere without my cell phone so that I can check in with my family regularly to make sure they are okay. I found that I couldn't drive down certain streets because they would remind me too vividly of a particular day with Jim, and I still can't drive down them. I had to sell his car before long because it was too painful to see it sitting there in our driveway.

During the grieving process, many people spend a great deal of time absorbing themselves in memories of their loved one and turn inward. In what's called traumatic grief, people become intensely fixated on persistent memories of their loved one, searching desperately for the lost presence of that person, and they often are thrown into a chaotic state of mixed emotions: anger, despair, envy of those who have not suffered the same loss, and often a paralyzing sense of life's futility. I felt all of those things, and at times couldn't conceive of going on, but then I'd feel Jim's presence again and know that he was urging me to embrace life.

Due to that feeling that he was watching over me, I forced myself to function at least on a basic level. I thought back to the breakdown I had when my mother was ill, and I was determined that I wasn't going to let myself break down again. Jim had emboldened me with a new determination to live my life the way that he would have lived his. This time I would not collapse. This time I would get back on my feet. I felt his presence, and I knew that was what he wanted.

His death made me realize how short life is and how suddenly things can change, no matter how desperately we try to stop the process. I was about to turn forty, and I realized I didn't have the time to lose. I just decided, for the first time, I was going to take the punch and accept the fate that had been dealt me. I began to see in a new, deeper way that my memory had kept me much too chained to my ever-insistent past and that I had not been able to focus at all enough on the future. I had finally begun to do so with Jim, and I was determined to keep forging forward.

I've found no escape from the repetition in my mind of the day Jim collapsed, or the call from his work, or the six days I sat by his hospital bed. I find myself remembering those moments every day, and I fully expect that I will continue to do so every day for the rest of my life. I had always been afraid of death, and then after only twenty-nine months of the one true love I had ever known, my husband walked out the door one morning and died. Though remembering those last days of Jim's life is horribly painful, in this regard, my memory has been a double-edged sword. I also have the comfort of knowing that I will remember everything about him vividly and all of the wonderful days I spent with him, for the rest of my life.

In the grieving process, though memories of the loved one can be intensely painful, it seems that remembering is a more powerful salve than repressing or avoiding thoughts about the loved one. A specialist on grieving, Dr. Mardi Horowitz, has found that “at a wake or memorial service, those who were least battered by the death will have the most memories of the deceased.” And after the initial phase of shock and denial about a loved one's death, reminiscing about times spent together is important in helping the healing process move forward and in building a new relationship with the loved one, which can be thought of as the memory relationship. What a wonderful concept.

Many widows report a continuing sense of their deceased husbands' presence and find a good deal of comfort from that. A good number of widows experience what are reported as hallucinations of their husbands—actually hearing him or feeling they've been touched by him, and calling up memories of such instances of feeling his presence may help a good deal in coping with the loss. Most often, these sensations of continuing physical presence fade after about two years, but one fascinating aspect of the grieving process many widows go through is that the sense of the continued presence of their husbands is eventually internalized, so that they feel their deceased partner is living within them as an enduring companion. That is exactly how I feel about Jim.

In addition to the salve of reminiscing, a powerful source of understanding and strength in coming to terms with the loss of a loved one is talking with others who have suffered the same fate. I was extremely fortunate in the months after Jim passed away to join a bereavement group for widows, which has become a deeply cherished circle of friends. The first day I showed up to join the group, I walked into the room and marveled that one of the women was laughing about something; the thought of laughing, about anything, was beyond comprehension to me at the time. The entire room gasped when they saw me because I was so young. They were all twenty to forty years older than me; one woman, Marj, had been married for almost sixty years; another, Arlene, who was seventy-five, told me that she'd been married when she was sixteen. I wondered what I was doing there. What would these women from other generations and I have to say to one another?

We ended up having a great deal to say, and we are still talking. I get together with them now every Thursday night for dinner, whatever else may be going on in our lives. These caring and thoughtful ladies have been invaluable in helping me to reengage with life. If these women who had lost companions with whom they'd spent more years than I had even been alive could accept their losses and face their futures, then so could I. They've treated me almost as their collective child, and if I do ever have the baby that Jim and I dreamed of, he or she will have the great good fortune to have eight lovely, fawning grandmothers.

The day that Jim suffered his stroke, I had written to Dr. Parker that I was looking forward to my fortieth birthday and moving into a new phase of life with a clean slate. I would never have believed when I wrote those words that I would be moving into that new life without Jim or that I would have been capable of doing so. The ladies have helped me to understand that in losing those we love, it isn't moving on that we want to do, in truth; we want to carry them with us, to keep them inside us and hold them close, hearing them speak to us just as they did, feeling their presence, looking into their eyes and knowing that they are with us always. This, I know with complete certainty, I will be able to do with Jim, and after a lifetime of struggle, my memory has proven at last in this one special way to be a source of abiding solace.

I have learned a great deal through the course of working on this book about the ways in which memory shapes our lives. The more I have learned, the more amazing I have found the remarkable feats of memory to be. Surely, of all the many ways in which memory enriches our lives, this ability it bestows on us to hold fast to our lost loved ones is one of its most precious gifts.

In July 2005, I got a call from Dr. Parker informing me that the scientific paper that she, Dr. McGaugh, and Dr. Cahill had been working on about their study of me was ready for me to read. They were going to submit it to a scientific journal, and they wanted me to tell them about anything they'd written that I thought was inaccurate in describing how my memory works or too personal for publication. Their findings were judged to be strong, and the paper, with the title “A Case of Unusual Autobiographical Remembering,” was eventually published in a prestigious journal of brain science,
Neurocase
, in February 2006.

Dr. Parker had written to me earlier to give me a summary of what they'd determined, but reading the full paper was nonetheless quite an experience. They referred to me as “AJ” in order to preserve my anonymity, but the person I was reading about was most certainly Jill; they had captured so much so beautifully about the experience of my life. Their opening line told me that they had understood, deeply, how hard living with my memory had been for me: “What would it be like to live with a memory so powerful that it dominates one's waking life?”

As Dr. Parker had explained to me, they had decided to take an approach to studying me that would let me fully tell my story, to which they would listen carefully, and then they would seek to verify, through their testing, the things I had reported to them. As I continued to read their paper, I began to cry, because I felt they had captured so accurately all I had told them, and had verified it all in such vivid detail, and I felt truly understood for the first time in my life.

In fifteen tightly crafted pages, they had summarized all the results of their many tests of me. They reported how accurately I had responded on all their tests about dates and events, describing my answers to the Easter tests, and to the test of dates and events that Dr. McGaugh had given me the first day I met him, as well as to their spontaneous quizzes on the many other occasions. They also described in detail the results of the neurological testing. Reading an actual scientific paper about the findings was somewhat disconcerting, but doing so also conveyed to me in a new and deeper way that the characteristics of my memory functioning have to do with the way my brain operates. They are not simply matters of my perception; they are scientifically proven facts.

My general memory index—a concept somewhat related to that of general intelligence, in that it is a conglomerate measure of a range of memory abilities—was very high, near the ceiling; and I got perfect scores on nine of the tests that measured more specific memory functions. As I wrote before, the scientists explained that they do not know how much higher I might have scored on those tests if they had been designed to measure even higher ability. The skills that I was especially high on included visual memory; interpreting people's facial expressions, called “face perception”; smell identification; and sensory perception, which was strong support for my self-reports about the intensity of my sensory memory. I did relatively poorly on four of the tests, which measured such things as my ability to recall a list of words and a test of memory for faces, which is memorization of a particular face rather than “reading” a person's face. Those results provided strong support, as Dr. Parker had indicated to me earlier, for my reports about having such trouble memorizing. In addition, I scored in the average range for a whole set of tests of various cognitive abilities, such as semantic memory, which is the knowledge of basic facts that we've learned; and verbal memory for things recited to me that I had to recite back.

The particular strengths and weaknesses revealed by the neurological tests, in combination with the other data the scientists had from testing me, and from my own descriptions of how automatic my memory is, led them to posit that there may well be structural features of my brain that prevent me from turning off what is called episodic retrieval, the recall of events from our lives. Brain scanning has revealed that particular areas of the right and left cerebral cortex—the large “thinking center” of the human brain—are involved with retrieval of episodic memory, and the scientists pointed to the possibility that my brain may have some anomalies in those areas. As they wrote, “AJ seems unable to turn off episodic retrieval mode as in normal individuals.” They also indicated that my memory did, therefore, open up significant new terrain for research. They wrote: “There has been research on brain regions involved with episodic retrieval mode, but not on superabundant autobiographical memory as it has not been identified before.” In keeping with just how complex and mysterious a function memory is, though, they also wrote that there may be no direct link between what the neurological tests showed about my cognitive abilities and the way my memory works. Further work will have to address that question.

The results of the testing led the scientists to conduct brain scanning on me in August 2006. They used the MRI technique, in which magnetic and radio waves make a highly detailed image of the structure of the brain. Those scans were then sent to two specialists in the analysis of brain scans, Dr. Jill Goldstein at Harvard Medical School and Dr. Nikos Makris at the Neuroscience Center of Massachusetts General Hospital. The hope was that they would find anomalies in some areas of my brain that would lead to further pinpointing of what may be the structural reasons for the way my memory works. Just recently, I got the word that they had. Not only did they identify more than two dozen areas that are a good deal larger than normal, but some of them are extraordinarily large. As Dr. Cahill said, they are so large that it's “like the difference in size between Shaquille O'Neal and the rest of us.” Doctors Goldstein and Makris have told me that they would like to continue studying my brain, and I am excited about the prospect of ongoing work with them.

My great hope now is that they will find clues in their further studies that will lead them down fruitful paths for treating or preventing memory loss. Dr. Cahill explained that a great deal of work is going on in the effort to identify the specific structures of the brain that account for particular cognitive functions, and that great headway has been made. He even said that, in experiments done with rats, “we make stronger memories. Maybe someday it will be possible to be able to do so in humans.” I would be enormously gratified if the study of my memory and brain could in any way contribute to knowledge about how to do so.

I have gained enormous respect for the scientific process through the course of this adventure. Another thing Dr. Cahill said to me speaks powerfully about what a challenging yet thrilling process it is: “I like to describe science as this,” he said. “You're at the edge of what we know and you're trying to push back that edge and so you're sticking your hands into the dark and you get bitten sometimes, but the cool thing about being a scientist is, ultimately, with enough persistence and luck, you touch something new. We push back the frontier of ignorance.” What a beautiful enterprise, and one that I will gladly contribute as much of my time and self to as may seem to be valuable.

When the people in my life learn about my memory, they often ask me, Is having all those memories worth it? If you had your life to live again, would you want your memory to be the way it is, or would you give it up? The answer is that, despite all the pain it has caused me, if I could choose, I would keep my memory, because it's made me who I am. Though on balance I would say my memory has been more of a curse than a blessing, I think perhaps, with the scientific work progressing, some wonderful blessings are yet to come. The greatest of these would be if, even in some small way, the study of my memory were able to help someone.

So, in the end, my conclusion is hope. Rather than to be trapped by overriding compulsions, or by the awareness of every bad decision I have ever made and its consequences, or to be both tormented and comforted by the memories of my beloved husband and the impact of his sudden death, I intend to use the strength and learning I have gained to work toward the day when I am no longer the prisoner of my memory, but rather I am its warden.