I Forgot to Remember: A Memoir of Amnesia

by Su Meck

  Yes, there were many unexpected things that were uncovered. The biggest of all is the degree to which my family and friends saw me as back to normal and pretty much fine—with just a few “memory issues”—simply because that’s what they wanted to see and believe. There were so many strange incidents that happened that were overlooked; so many odd remarks that I made that were ignored; tons of little quirks that I had that were simply disregarded over the years. And on the flip side, and just as astonishing, is the degree to which I was an actual accomplice to all of this. I have asked people—mostly Jim and my parents—numerous times over the past two years as I have been writing, “Didn’t you think it was weird that I said that? Or acted that way?” They will often laugh and then give me pretty much the same answer every time: “Well, we do now!” And then those same people will admit to me that they didn’t understand and realize all of the difficulties I was having.

  I have gained a far greater appreciation for everything my kids have done for me through the years. That being said, I also feel guilty that I didn’t even ever realize their incredible efforts on my behalf all along. It must have been such a struggle for them at times. The dynamics of our family were clearly far from conventional, and yet Benjamin, Patrick, and Kassidy just accepted things the way they were and did what needed to be done.

  Tell us about the process of writing this memoir. You mention in the book that you had trouble meeting deadlines because you find time difficult to keep straight in your mind. Dan de Visé, who wrote the initial article about you in The Washington Post, helped with the research and writing. Was that an easy process? How collaboratively did you work?

  I met Dan de Visé for the first time in the spring of 2011, when he came to our house to interview me for the Washington Post article. When I made the decision to attempt to write a book about my experiences, I was initially more than a little bit overwhelmed and daunted by the task, so I asked Dan if he would be willing to help me. Dan agreed, and our first task was to write a book proposal that would be sent around to several publishing houses to gauge interest. Dan came back to the house a few times that summer, and through our conversations, he collected various anecdotes that could be used for the book proposal. Neither Dan nor I had ever written a book proposal—I had never even heard of a book proposal—and we didn’t get too much guidance, so we were a bit like the blind leading the blind at first.

  Then, Jim and I left Maryland late in August and moved to Northampton, Massachusetts, in order for me to start at Smith College in the fall. From that point on, Dan and I rarely spoke and I haven’t seen him in person since August 2011. He interviewed my parents, my sister Barb, and Neal at one point, and also spoke to Jim a few times when he had specific questions. But for the most part, aside from a handful of e-mails, we didn’t really collaborate at all. I did my thing, and Dan did his.

  It had been my original plan to try to write for the book every day, seven days a week. But I found it extremely hard to work on my book on the days and weeks when I also had to write papers for my Smith College classes. For whatever reason, I couldn’t ever switch gears effectively between academic writing and the kind of writing I used when telling my story. Because of that limitation, great portions of the book came from hours and hours spent writing during my winter and spring breaks from school. And then additional large sections were written in Josten Library during the summer after my first year. Mostly because it was one place on campus that was quiet and had air-conditioning.

  Do you think your friends and family will be surprised by some of what they read in this book? What do you hope their reaction will be?

  I didn’t initially think who people that know me well, especially my family, would be shocked by what I had written. But when I e-mailed out copies of a nearly finished manuscript to my parents and my brothers and sisters, I got some surprising reactions. Some of my sister Barb’s comments: “How did you manage to survive this?” And “I want to cry at parts of your story and I can only be thankful that you don’t remember much of what happened during this time.” And then my brother Mark: “The whole story helps me to understand the context through which you were functioning. I (probably like everyone else) just assumed after a little while that you were fine. Thank you for helping me to understand the whole picture.”

  My parents’ reaction was a mixed bag. I am certain they are proud of me, but I got a phone call from my mom late in August, and she mentioned that she hadn’t been sleeping well “since reading my book.” I was intrigued. She went on to say that all of the “language” and “the teenage sex” were getting to her and that I shouldn’t include any of that stuff. She said things like “What will all our friends think?” and “I raised you kids better than that!”

  I was certainly upset by her reaction, because, like most authors, I want people to read my book and like it, or even love it! But I also know realistically that not everyone who reads my book will like it, or even believe it. And I will have to learn how to be okay with that.

  You hadn’t seen most of your medical records until you started working on this book, and then, you say, they raised more questions than answers. How did it feel to see the discrepancies between what different doctors said? How did you decide, especially so long after the fact, who to believe?

  I had not seen any of my medical records from Texas until 2012, and I was more than a little disappointed by them. I was truly expecting that after reading through these official documents, I would somehow have all the answers to all of my questions, and then writing this book would be a snap, or at least easier. Instead, the medical records did just the opposite by raising even more questions. I ended up having to depend on what people told me about my time in the hospital instead of accepting a lot of what was in my records as the truth. I honestly still don’t know what to make out of all the inconsistencies and outright mistakes detailed in my records.

  How have common perceptions of amnesia—what you refer to as “Hollywood amnesia”—affected how people respond to your story?

  Most people have a fairly consistent reaction when they find out about me: “OMG! You’re kidding! You don’t remember anything from your childhood?” Sometimes I get: “You poor thing!” But the thing people have to keep in mind is that I don’t know any differently. This is my life. And for a long time I didn’t even realize that I was impaired in any way, so, except for the lightning episodes, and almost unknowingly trying to blend in, I was fairly unaware and mostly content.

  For me, what is especially interesting now is connecting with other people in the TBI community who have had similar experiences with amnesia, and similar reactions from the medical community regarding their amnesia.

  I recently discovered www.brainline.org, a fabulous website that posts information on “preventing, treating, and living with traumatic brain injury.” Publishing this kind of information online opens up endless avenues for discussion, ideas, treatments, and services to anyone dealing with TBI in any way.

  You mention that some people prefer your new personality to who you were before. Do you find statements like that hard to deal with? How do you typically respond?

  For many years I think I was mostly confused when people would say things like that. I didn’t necessarily equate “personality” to “the way I acted” or “my character.” I was under the impression that my “personality” was me. I thought of it as more “person me” because the end of the word, ty, even rhymed with, and was therefore connected somehow to me. Go figure! I would get frustrated and confused that people would say that I was not me anymore, and yet somehow that was a good thing. But then I would also be told, “You always loved to swim!” or “Don’t you remember when we went [somewhere] and you did [something] and you were so funny?” I never knew quite how to react. Most of the time I just laughed and went along with whatever was said.

  In 2010, when I started to openly talk about all of this, I began to gain an appreciation for what it meant to be my own
person, with my own thoughts and feelings about things. Taking classes and working toward a degree at Montgomery College helped me to realize that I could think for myself and develop my own personality. And it didn’t really matter that I didn’t have the same personality as I used to. Who I “used to be” was all but irrelevant. This new awareness that I had for myself was a really big deal!

  These days I attempt to ignore it when such things are said. I have a little bit more faith in myself now than I used to, and I am who I am. Not to say that it isn’t incredibly easy for me to slip back into my old habits, where I actively try to figure out “who exactly am I supposed to be right now” and “how am I supposed to be acting.” But for the most part, I just try my best to be me. To be Su.

  You talk a lot about how your kids took care of you when they were young, and mention that you and Kassidy grew up together. Now that your kids are grown up, do you feel that your relationship is more parental, or are you something more like friends?

  Remember, I am more grown up now, too!

  I don’t think I ever had what could be honestly called a “parental” relationship with my kids. I acted like a parent sometimes by doing and saying stuff that I observed other parents doing and saying. Especially when we were out and about with other families. But when it was just the four of us, we acted more like siblings with each other. We argued like siblings, we shared inside jokes like siblings, we competed with each other like siblings often do, and sometimes we even teamed up with, and against, each other.

  So many parenting books talk about how it is best if parents give their children definitive rules and guidelines, because children crave those kinds of boundaries. Parenting books will often also say that one of the worst things parents can do is to try to be friends with their children. But then I think there are probably as many different ways to raise children as there are parents and children. In my case, my kids and I continue to be the best of friends.

  How did you choose the song title that starts off every chapter?

  Each chapter had a dozen or more songs associated with it when I began writing. As chapters became more finalized, I either totally got rid of or sometimes just moved certain song titles to other chapters. Somehow they needed to feel to me as if they fit with the chapters. I wanted every chapter title to give subtle hints—and sometimes not so subtle—to the reader as they read.

  One other “rule” I had for myself was that a different band or artist would represent every chapter. I could have just as easily picked songs from only the Who or Queen or Pink Floyd, for example, for every chapter, but I wanted the variety, because there’s so much music that I love.

  Are you still enrolled at Smith College? What are you studying? What has been your favorite thing about being there?

  I am currently enrolled in my first semester of my senior year at Smith College, with my plan being to graduate in May 2014. I am a proud member of the Ada Comstock Scholars—the one hundred nontraditional-age students on campus. In fact, one of my best Smith memories was performing in the first annual “Ada Monologues” in the spring of 2012.

  I am a music major at Smith, with a book studies concentration. As a drummer, my future aspirations include being part of a local rock band someday. Unfortunately, that particular aspiration hasn’t always fit in too well with the mostly classical course of study here at Smith. But I have had fun being a part of, and performing with, the Smith College Glee Club, the Chamber Singers, and the Smith Handbell Choir.

  Since being at Smith, I have become a strong proponent of a liberal arts education as I learn how to think about, write about, communicate with, explain to, argue with, and consider differing opinions of people throughout the world. I also have had a wonderful work-study job in Smith’s main library—Neilson Library—since my first semester. I get to work for the best supervisor ever—Joe Bialek—processing new books and media; processing and sending broken, sad books to the bindery; searching for lost books; and occasionally shelving. I sometimes think that what I have learned working every day in Neilson Library is just as important as what I have learned from my professors and fellow classmates in my classes.

  What’s next for you? What do you hope to do when you graduate from Smith?

  I plan on staying here in Paradise—a nickname for Northampton, Massachusetts, because it was known as “the Paradise City” in the 1850s—and I hope to write another book or two.

  There are so many other situations, people, and anecdotes that, for whatever reason, were edited out of this book. In a perfect world, I would be given the chance to rewrite and publish a lot of that material, giving me the opportunity to explain even further what it is like to live both as someone with TBI as well as offer some more insight, from Jim’s perspective, as to what it is like to live with someone with TBI. Plus, I would very much enjoy writing about my adventures as a student here at Smith. My time here has been quite the wild ride.

  I also have a vague idea in my head for a series of children’s books that might help explain TBI in a more kid-friendly way—without all the language and teenage sex. I am certainly no artist, so I have preliminarily asked my sister Diane if she would perhaps be willing to be my illustrator. What fun it would be to work so closely with Diane if these books actually become a reality.

  You end by saying that you hope your story brings awareness of traumatic brain injury. What can your readers do to help spread the word about the devastating affects of this condition?

  If something should happen to me, somehow preventing me from having the chance to do anything more in my lifetime, it is my greatest hope that this book can one way or another at least start to help people understand and appreciate exactly how debilitating TBI can be. This condition exhibits itself in people in so many different ways, with very few of those ways even considered to a skeptical medical community. It would be great if people with TBI could find their own ways to speak out and spread the word about their conditions and their own experiences even if it means getting viewed by others with suspicion. I never realized what a horrible disservice I did to people with similar circumstances as me by staying quiet, and trying to be invisible, for so long. Looking back, I was kind of selfish. And I cannot explain the great relief it has been to share my story.

  I also cannot stress enough how important it is for caretakers of people with TBI to please be patient. It is oftentimes left up to you to be the one and only advocate for your struggling spouse, parent, child, sister, or brother. And that role is not going to be an easy one for a variety of reasons. Doctors, nurses, therapists, and even friends and relatives may think that you are just as crazy as the person suffering from TBI. The person who you are trying your best to care for may drive you to drink, or worse. If there are children involved, please look out for their safety. It was but for the grace of God that Benjamin, Patrick, Kassidy, and I all lived to tell this tale. But I think my story shows that with time, remarkable things can happen.

  About the Authors

  © JARED LEEDS

  SU MECK is pursuing degrees in music and book studies from Smith College. She has high hopes of playing her drums in a local rock and roll band, playing handbells in a New England ensemble, and continuing to sing in community and church choirs. Su wrote a piece for the New York Times Magazine, but this is her first book, and she plans to continue writing books while drawing attention to what it is like to live with a traumatic brain injury (TBI). She and her husband, Jim, have three grown children, and currently live in Northampton, Massachusetts, with their two Lab rescue dogs, Fern and Farley, and their two tuxedo cats, Apollo and Athena.

  DANIEL DE VISÉ is a journalist and author who has worked at the Washington Post, the Miami Herald and three other newspapers in a twenty-three-year career. He shared a 2001 Pulitzer Prize and has garnered many other national and regional journalism awards; his investigative reporting has twice led to the release of wrongly convicted men from life terms in prison. A graduate of Wesleyan and N
orthwestern universities, he lives with his wife and children in Maryland. He is working on his second book.

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  SimonandSchuster.com

  authors.simonandschuster.com/Su-Meck

  authors.simonandschuster.com/Daniel-de-Vise

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  First Simon & Schuster hardcover edition February 2014

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