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In memoir, Smith College student recounts how she had to rebuild her life after complete memory loss



Thursday, February 27, 2014
Some people talk about reinventing themselves, whether it’s through a dramatic job change, a new relationship or a shift in lifestyle and outlook.

Su Meck reinvented herself, too — though not by choice. In her case, the catalyst was a ceiling fan that fell on her head when she was 22, completely wiping out her memory and reducing her mental capacity to that of a toddler.

Meck, 48, never did regain her memories from before the accident; her life, in effect, began at age 22 and has entailed a long struggle to identify just who she is. Along the way, she’s had to relearn all the basic things — reading, preparing food, understanding cultural reference points — the rest of us take for granted.

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Now Meck, of Northampton, is sharing that experience in a just-published book, “I Forgot to Remember: A Memoir About Amnesia,” by Simon & Schuster, in part to bring attention to traumatic brain injury (TBI). And years after having her mind and personality erased, she’s set to graduate this May from Smith College, where she’s been an Ada Comstock Scholar since 2011, pursuing a degree in music and book studies.

“This is my story — I can’t speak for the experiences of other people who have TBI,” Meck said during a recent interview in her Northampton home, where she lives with her husband, Jim, and their oldest son, Benjamin. “But the point I wanted to make was how devastating it can be, and how it really requires a lot of patience and understanding to live with and help someone who’s gone through this.”

“I Forgot to Remember” is at once a harrowing, often painful, and medically bizarre tale. As the book outlines, Meck’s inability to recall anything of her life before her accident — a condition known as “complete retrograde amnesia” — was (and is) extremely rare, as was the fact that for months after her accident she also suffered from “anterograde amnesia,” in which a person cannot form new memories.

“Basically, every day [after the accident] was like starting all over again,” Meck said. “I didn’t recognize my children, my husband, or anyone else, even when I’d been with them just the day before and I’d been told who they were.”

At the time of her accident, Meck and her husband had two sons, Benjamin and Patrick, who were about 21 and 6 months old, respectively. In the immediate aftermath of her injury, Meck was pretty much on an intellectual par with them: She had to be taught to sit up, walk, dress herself and use utensils, and her vocabulary wasn’t much more advanced than Benjamin’s.

Today, she still has days when her memory fails her or she struggles to read or write. But her conversational memoir, written with reporting and research assistance by The Washington Post journalist Daniel de Visé, marks how far she’s come since 1988. “I Forgot to Remember,” for all its pain and often raw view of Meck’s life, offers its share of redemption in recounting how she came to terms with her “new” self, went back to school and made her way to Smith.

Though, she said with a laugh, “I wouldn’t advise anyone to try and write a book and go to college at the same time.”

Dropping the ‘e’

Meck, who was born Sue Miller in Ohio in 1965 and went to high school in the Philadelphia area, writes that she was a rebellious teenager — smoking pot and drinking, fighting with her parents, removing the “e” from her first name to distinguish herself from the other Sue Millers of the world.

Her musical instrument of choice was the drums, and she liked to listen to loud rock ’n’ roll. Then, defying her parents again, she dropped out of college as a sophomore and married her husband, an older classmate she’d met at Ohio Wesleyan University. She was married at 19 and became a mother at 21.

Yet, Meck writes, she recalls nothing of this. The portrait has been provided by family and friends: “Sure, I know the story, but it is just a story related to me by others, in bits and pieces, over many years. ... I have had to interpret the story, to picture the scenes in my mind, just as you are about to do.”

Compounding the strangeness of that, she adds, is that former Su sounds nothing like post-accident Su. “She broke rules; I follow them. She drank and smoked pot; I don’t even know the taste of beer and wine, and the smell of smoke makes me physically ill. ... She loved to swim; I am absolutely terrified of the water.”

The new trajectory of her life began May 22, 1988. Meck was in the kitchen of the home she shared with her husband, a software engineer, and their young sons, in a suburb of Forth Worth, Texas. She was making macaroni and cheese for dinner, and had just picked up Patrick, who had crawled into the room. Patrick then apparently brushed against the kitchen’s ceiling fan, which somehow came loose and crashed down on Meck’s head, according to her husband, who was the only other person in the room.

Doctors at first did not know if Meck, bleeding heavily and comatose, would live. When she did regain consciousness, she knew nothing and recognized nobody — not her husband, her children, nor her parents and siblings, who were heartbroken at the vacant look in her eyes.

Through physical and occupational therapy over the next three weeks, Meck learned to walk and even peddle a bicycle, and her speech improved. But then, still not recognizing her family, she was released from the hospital. She writes that some of the doctors thought she might even be faking her amnesia, perhaps because CT scans revealed almost no physical damage to her brain.

She recalls nothing herself of this part of the story; it’s all been told to her by others.

In retrospect, Meck said, “I wasn’t ready. I was in no position to take care of two small children. But I don’t spend a lot of time thinking about that or getting angry. That’s just the way it happened — it is what it is.”

Something missing

Over the next 18-odd years, Meck learned to function again as an adult — or at least to imitate one — by copying everyone she saw. “I was a really good observer,” she said. She learned to read, write, and add and subtract by doing homework with Benjamin, Patrick and then her daughter, Kassidy, born in 1992. Her husband, whose work often took him on the road for long stretches, helped when he could, as did other family members, but Meck still had to grapple with much on her own.

Her children became more like siblings in many ways, even mentors when they were older; Patrick, a precocious boy with an excellent memory, could remember where the family lived when his mother could not. Meck eventually became a part-time aerobics instructor and a busy volunteer in her children’s various activities. The family moved to Maryland, spent a year in Egypt, then went back to Maryland as Jim’s jobs and responsibilities changed.

Yet through all this, Meck says, something was missing. Beyond her existence as mother and wife, she wasn’t clear what was expected of her or who she was supposed to be. She was also terrified of social gatherings, fearful that adults she met would uncover how little she knew about politics, world news, or dozens of other topics. Her ignorance, she says, was a terrible source of shame to her.

And her husband seemed more parent than spouse. “I tended to agree with nearly all of Jim’s opinions, ideas, and decisions, mostly because I didn’t understand what he was talking about the majority of the time,” she writes. “I would literally nod and smile, just like some sort of creepy Stepford wife.”

Eventually, Meck was forced to reconsider her life. First she lost her job teaching aerobics. Conquering her fears that she would fail, she went back to school, enrolling at Montgomery College, a community college in Maryland. But then her husband, who could be short-tempered with her, confessed that he’d had a number of affairs over the years and squandered money on visits to strip clubs.

As angry as she was at the time about her husband’s revelations, Meck today says she tries to consider what kind of toll it took on Jim to lose the wife he knew and then have to take care of someone who for months didn’t even recognize him — or have any emotional connection to him. “Did he realize when he married me that he would have to teach me my shapes and colors?” she writes.

“Neither one of us really understood what had happened to me or knew what we were supposed to do about it,” she said. “If I’d been in his place, I don’t know if I would have had the patience to deal with it, either.”

Returning to school turned out to be the right step for Meck. Though she struggled at first, she learned to speak up and ask questions when she didn’t understand something; her teachers were extremely helpful, she said, especially after she finally told them the full story of how she was injured and lost her memory.

That led in turn to an interview with de Visé, the reporter from The Washington Post, when she graduated from Montgomery College in May 2011. The Post put the story on its front page, which prompted additional media coverage, such as an appearance on “The Today Show.” Meck also did some public speaking about her experience, including to one of her daughter’s college classes and to a business group in Maryland.

Then came a book offer and an invitation to attend Smith as an Ada Comstock scholar. Meck says she’s loved being at the college — she’s active in a number of campus singing groups and a work-study program at Neilson Library — though it’s been very hard at times.

“I felt I was really in over my head that first year,” she said. But she’s also bonded both with older students like herself as well as with the younger undergraduates.

She’s not sure exactly what she’ll do after she graduates in May, though she’s interested in doing more writing. She welcomes more opportunities to tell her story as a way of raising awareness about brain injuries, and she’s come to accept who she is.

“If all my memories were somehow restored now, where would that leave me?” she writes. “I would have to figure out exactly who I am all over again. No thanks!”

Steve Pfarrer can be reached at spfarrer@gazettenet.com.