Finding the Right Words: A Story of Literature, Grief, and the Brain tells the moving story of an English professor studying neurology in order to understand and come to terms with her father’s death from Alzheimer’s 

 

Read an excerpt from Finding the Right Words below. 

 

I think I was dreaming in Berkeley and only woke up to reality when I was with my dad (and then finally when I wasn’t). Case in point: going with him to a supermarket in Berkeley on one of his and my mom’s last visits to California. This visit was the first time that I witnessed my dad not knowing who my mom was. When we walked to the supermarket, he asked me with a combination of fright and curiosity, who is that woman in the house? Being asked this question by my father made writ- ing two pages a day, which is what I did to get my dissertation done, feel like a piece of cake.

It was a beautiful spring day in Berkeley, and that evening, we were going to make dinner at my house. Dad wanted a salad with his chicken. This seemed like a rather straightforward proposition until we got closer to the market, and Dad realized he wanted something very specific in his salad but couldn’t remember what it was. I was always good with words, having been trained in the arts of playing Scrabble at a very young age with a very competitive mother, and then spending hours on the New York Times crossword puzzle as a college student (pre- Google). I was therefore confident that I could help Dad get to the right word with little fuss. Cocky, rational me went into problem-solving mode. Initially, I thought he wanted a cer- tain kind of lettuce and not just iceberg. We were in Berkeley after all, and Dad had succumbed to the charms of the gourmet ghetto with its gorgeous produce and cheese varieties. Aru- gula? No. Red Leaf? No. He made it clear that it wasn’t lettuce that he wanted, but it was something in the salad. Goat cheese? No. Tomatoes? No. Chickpeas? No. Sprouts? No.

I was starting to get a little antsy myself as I realized I wasn’t hitting my mark. Dad picked up his pace as if speed would help him find the word more quickly, as if the word were running away from him and walking faster would help him catch it. I suggested that we might be able to figure out what it was that he wanted once we got to the market, and we could go through the aisles. Use your Saussure. Find the visible referent in the absence of having the signifier (at this point, Dad had the sig- nified). That calmed him (and me) down for a bit, and then we entered the market. For some reason, I was set on the idea that it was chickpeas that he wanted, but he just wasn’t connecting the word to the thing. Thus, I gently directed us toward the beans. Bad move. He got angry not only because he didn’t want chickpeas, but also because he realized that I was behaving as if I thought he didn’t know what the word “chickpea” referred to. He was right to be angry, and I was right to treat him like a child because he was one, sort of. I now see his anger as a good thing—he was angry that I was treating him like a child, and he was healthy enough to know it. As the disease progressed, I came to miss that anger because it had confirmed for me that some structures remained in place. He was still my father and I his child. Absent the anger, that was gone. He was gone, too, and so was I.

I regrouped us, and we walked toward the produce aisle. He told me it wasn’t anything like that, as in nothing refrigerated. What the fuck was it? Capers? I didn’t think he liked capers, but the past was pretty irrelevant as I also thought he knew the woman to whom he had been married for over thirty years. At a certain point, my dad’s desperation became my own. I couldn’t find the word, the thing—who cared which? Saus- sure wasn’t helping. No longer were we walking through the various aisles, which was another one of my initial strategies (saunter through the aisle and maybe he’ll see what he wants and that will be that), considering other things we might have wanted with dinner. It was all about finding whatever it was that we were looking for. Our white whale. Who knew it was croutons?

The two of us began a frantic search through the aisles. With fear and hope, I watched my dad looking at the various cans and boxes of stuff on the shelves, his expression turning from hope to disappointment to sadness and back again with each swift rejection of not seeing the thing he could not name. I decided it would be worse for me to keep guessing, so I shut my mouth and just kept him company on his heartbreaking journey through the supermarket. Eventually, we found the croutons. Dad’s face lit up. He was so incredibly happy; I could have cried for joy myself. It was over. The relief was physical. Our hunt through the oceans of salad paraphernalia was over. We could go home, make the damned salad, and eat.

Until my dad decided that he wanted to rent a movie. I’ll cut to the chase and tell you it was Ferris Bueller’s Day Off. But my dad didn’t, couldn’t find the words. And so we started all over again.

 

 

Where Dementia Decides to Dance

A crouton is a small, square-shaped piece of fried bread that is placed into soups or salads. The crouton originated in France in the 1800s, where a rich and complex food culture was emerging, and humans were creating a new way of cooking and eating. Croutons are an acquired taste, rarely appreciated by young children, but by early adulthood many of us begin to enjoy the aesthetic of eating a soft and chewy green salad with dressing that is dotted with hard and crunchy croutons. The actual origin of “crouton” is from the Latin word crout, which signifies crust. As is often the case with the English language, simply following phonetic rules does not help us to spell “crouton.” Rather, we associate the orthograph—the writ- ten constellation of letters—with the meaning for the word, which allows us to remember the correct pronunciation. Most of us infre- quently eat, speak about, or write, the word “crouton.” It is a word that is used with low frequency by most people. Unless, of course, we are cooks and place croutons in salads every day or fanatically eat salads with croutons on a daily basis.

Ordinarily, words that we use frequently, like mother, father, shirt, cup, table, or house, are more facilely produced than a word like crouton. Therefore, it is not surprising that Jerry Weinstein, as part of his inability to name items (anomia) had difficulty gen- erating “crouton” during a conversation with his daughter. Jerry’s struggle to remember “crouton” is the first moment that Cindy be- comes aware that he is having cognitive issues. Anomia is one of the earliest manifestations of Jerry’s Alzheimer’s disease. Soon after- ward, Cindy realizes that there are other signs of trouble. Jerry was never much of a reader, but now his spelling is off, and his writing is shaky. How disturbing for Cindy, a voracious reader, writer, and emerging literary critic, to see her father struggle to name, spell, or write. A steady cascade of losses soon follows, and, like many, Cindy watches her beloved parent descend into the dementia of Alzhei- mer’s disease.

Notably, his first symptoms are in the domain of language. The language form of Alzheimer’s disease that begins with anomia is called logopenic aphasia, or the logopenic variant of primary pro- gressive aphasia. This Latin phrase, logopenic aphasia, is loosely trans- lated as a paucity of words. Logopenic aphasia was first described by my colleague Marilu Gorno Tempini at UCSF in 2004, and it is char- acterized by anomia (inability to name), loss of reading, or alexia, and loss of writing, or agraphia. Scientists are just beginning to un- derstand these deficits, and the findings hold unexpected implica- tions about how our brains work and how this influences the sorts of disorders to which we are vulnerable.

The preceding is an excerpt from Finding the Right Words: A Story of Literature, Grief, and the Brain, published by Johns Hopkins University Press. Copyright 2021. Used with permission.