I Forgot to Remember: A Memoir of Amnesia (34 page)

For so long, I lived in perpetual fear of sounding stupid, of getting lost, of forgetting what to do or say, of getting caught for being who I really am, of losing my husband and children. I was exhausted a lot of the time and terrified of so much because somewhere deep down I was always afraid of being found out. I think about things differently now. I get frustrated these days because I don’t have the same kind of connection to my parents and siblings as most people do. I get irritated with myself for not being able to read and write as I once did. I feel stupid for being unable to sometimes have “adult” conversations, and for getting lost on my way to places that I’ve been to a thousand times. There are so many annoying gaps in my basic comprehension of life that I haven’t yet discovered. I still don’t even know everything I don’t know. And I get incredibly embarrassed. And angry. Angry because I think that no one else can ever really understand what it’s like to live this way. Angry because a medical community could see nothing wrong, and thus didn’t know how to fix me. And even worse than that, that same medical community assumed there was some kind of attention-getting or psychiatric reason for my condition. No wonder I didn’t like talking about it. No wonder I stopped asking questions. I felt like a fraud at times, but it was also clear that nobody was going to tell me how to get back to being the person I once was.

I get asked now if I would ever consider going to see any of
these world-famous brain specialists. Pure curiosity would incline me to say, “Yes. Of course.” And yet I wouldn’t want to be turned into some kind of a human guinea pig. I know now that my condition is considered highly unusual, but maybe it’s really not as unusual as people think. Maybe there are many people out there with the same, or at least similar, circumstances as those that I have lived with. Maybe they were told there was nothing that was medically wrong with them, that it was probably all in their heads. Maybe they had doctors tell them that their symptoms were not real. Maybe they have resigned themselves to just getting by as best they can in the world, or worse, maybe they have just given up. Maybe there are people out there who don’t have it as good as I had it, surrounded by a supportive family.

Traces of my anterograde amnesia endure to this day. I still experience occasional blackouts, particularly in unfamiliar surroundings, like a hotel room or a friend’s guest bedroom. These episodes leave me with entire days of my life that I cannot recall. There are still days when I find myself unable to read or write. And I struggle with the concept of time: I have a hard time putting myself in the future, making decisions about the future, and understanding exactly how far away is next month, or next year. And also the past: how long ago stuff was. I am still forgetful, and I tend to lose memories unless I have a specific reason to retain them, or I write them down. (Jim and our kids used to follow a “three-day” rule: “No matter how badly we screwed up, if we could ride out your wrath or anger or disappointment for three days, you more often than not seemed to forget completely, and it would be as if nothing had ever happened,” Jim recalls.)

It is beyond hard to live like I do. Even if I couldn’t be “cured” or “fixed,” I would be content if some specialist could explain
what exactly happened to my brain and why I am the way I am. Especially if what the experts conceivably found with me could somehow add to the body of brain knowledge and help future head-injury patients and their friends and families to avoid what I have had to go through.

All that being said, a very wise woman, my daughter’s professor at Barnard College, Alexandra Horowitz, asked me not long ago, “Su, if there was somehow some magical or medical way, would you really want all your memories back?” My knee-jerk reaction was to say, “Duh! Yes!” But I’m not so sure now. Alexandra said I should instead be happy with the years and all of the memories that I do have instead of languishing over all I don’t remember. And that makes a certain amount of sense to me. So many facts, details, people, and places I don’t know will, of course, trip me up at weird times, and it really sucks. But if all my memories were somehow restored now, where would that leave me? I would have to figure out exactly who I am all over again. No thanks!

And then there is Jim. Jim is obviously not a saint. (Neither am I.) But I have realized it isn’t fair to judge him only on the bad stuff he has done. There has been, and continues to be, an awful lot of good stuff, too. Everyone experiences ups and downs in life. Our family’s ups and downs have just been a little bit more . . . unusual, and perhaps a bit more extreme. Does
anyone
really know what life has in store? Did Jim know when he married me that he was going to have to at some point show me how to use a toaster safely? Did he realize when he married me that he would have to teach me my shapes and colors? Of course not. I can’t imagine what it was like for him to wake up with me every morning for
months
after coming home from the hospital and hear me ask him, “Who are
you
?”

Jim is not a bad person. He has done bad things to my kids, and to me, but for me that is somewhat overshadowed by the fact that he has been okay with me telling “the whole story” like this. It speaks
volumes
to me that he would be willing to go on record so that people can begin to understand how devastating a head injury can be to everyone involved. He agreed to put his entire personal life out there right alongside mine because he, just like me, strongly believes it is that important to get the word out about the incredibly destructive nature of brain injuries. Will some people think that I am throwing Jim under a bus? I certainly hope not, because that is not my intention. Why have I stayed with Jim? Dependency? Maybe. He knows me better than I know myself, and even though I know this is going to rub some people the wrong way, I’m just going to come right out and say it: If I didn’t have Jim, I wouldn’t have me.

That being said, I can’t say that I love Jim in the conventional sense that most married couples love each other. I have no idea what it feels like to “fall in love” with another person. I seriously doubt I ever will fall in love, and I am totally okay with that. But this book is not about a never-ending search for love. I simply wanted to tell my story—the entire story (so far), with all the facts (to the best of my knowledge), in order to, I hope, prevent these things from happening to someone else, or at least to try to help people in similar situations. To be honest, I didn’t even know half of my own story when I started this project. Since taking the first steps, I have met and had the opportunity to talk to so many people who have been instrumental in filling in huge gaps: my immediate family and Neal Moore, of course, but also Kathy,
Michele, childhood friends Robin and Diedre, Janet, Valerie, Pam, Jodi, Heather . . .

But learning everything about my own life has been secondary to my initial mission. When I began this book project, all I really wanted to do was to explain what it really means to live with a head injury to as many people as would listen. I wanted people to stop saying, “Oh, he just had a concussion. He’ll be fine.” Or, “Gosh, she’s been acting wacky since she bumped her head.” I want everyone—parents, spouses, siblings, friends—to start paying attention. I would
love
to get the medical community on board as well. Stop telling people they are crazy. Stop telling people that they can’t possibly have forgotten everything just because you—the doctor, the neurologist—don’t see anything unusual on an MRI. Please don’t tell them that you think they are just seeking attention. Please listen to your patients. Spend more money on brain research. Real research. Discover
new
things. I did.

I
t’s extremely hard to even know where to start! There are so many people who have helped me get to where I am today, but who, unfortunately, didn’t make it onto the pages of the final version of this book. The cuts I had to make to this manuscript were positively heartbreaking, but I am hoping that this book is only the beginning. . . . It’s true that I don’t directly remember anything about, or anyone from, my childhood and teenage years in Mentor, Ohio; Beaver, PA; Wayne, PA; or from my first two years of college at Ohio Wesleyan University. But it is a goal of mine to take a tour someday back to all the neighborhoods where I lived and visit people who may have known me. But until then, I have Facebook, and through it I was able to connect with
two of my best girlhood friends and playmates, Robin and Diedre; Lenny, from the Conestoga Marching Band drum line; Laura and Mary, two of my Delta Gamma pledge sisters; and Bob and Paul, two of Jim’s fraternity brothers. I have been fortunate that Kathy, one of my best friends from high school, as well as Michele, my sidekick, roommate, and best friend from college, continued to stay in touch with me, even when I had absolutely no idea who they were.

Thanks to Pam Knote, Janet White, Neal Moore, and Valerie Willey for agreeing to be interviewed by Dan. You all helped to shed light on particular details of my story and in turn assisted with the enormous puzzle that is my life.

Special thanks to
anyone
who ever worked with me or took aerobics or Spinning classes from me at any number of clubs where I taught in suburban Maryland both outside Baltimore as well as outside Washington, D.C. I love and miss you all! You all deserve an entire book simply titled
Su: The Strength and Stamina Years.
That being said, I should probably let you all know that, chances are, I wouldn’t last through even one class anymore.

To the entire Farrell family, but especially to Imelda. There is a very good chance that I may not have survived without our noontime dog walks together and our enduring friendship.

To countless of my fellow students, faculty, and staff at Montgomery College. You all pointed me in the right direction by giving me the opportunities, encouragement, and confidence that I never knew I had. Again, I thank God (and Mark Zuckerberg) for Facebook and the ability to still keep in touch with so many of you!

And of course to numerous fellow students, faculty, and staff at Smith College. You all know who you are,
and
you should be aware that your book is coming!

Last but certainly not least, to my family. My parents, Bob and Janet Miller; my sister and her husband, Barb and Scott Griffiths, and their daughter, Emily; my other sister and her husband, Diane and Paul Clear, and their kids, Kaitlin, Kevin (and new wife Ashley), and Keenan; my older brother and his wife, Rob and Tracy Miller, and their kids, Amanda, Brandon, and Jake; and my younger brother and his wife, Mark and Tiffany Miller, and their daughters, Morgan and Madeline.

And of course, to Jim and our kids, Benjamin, Patrick, and Kassidy. This thing was quite an adventure, wasn’t it?

Family is always family, no matter what. . . .

I love you all.