I Forgot to Remember: A Memoir of Amnesia (36 page)

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.

© JARED LEEDS

S
U
M
ECK
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.

D
ANIEL DE
V
ISÉ
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 Northwestern 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