kw: book reviews, nonfiction, librarians, illnesses, memoirs
In 1972, I experienced three significant events. My wife divorcing me was the least significant, in the overall scheme of things. Next, as I count it today, my mother's sister's husband divorced her. Most significant, from a long-term perspective, was the story she told me, during a visit shortly after the other two, nearly simultaneous events. My uncle was a rough man, yet wonderful in ways. A geology professor and well-honored; a classically trained pianist who had taken umbrage at my guitar rendition of "Moonlight Sonata" (movement 1 only, guitar is only capable of 2-octave chords and the Sonata uses 3+ octaves); father of my biggest group of cousins and a great grill chef. Yet my aunt told of a peculiar affliction he managed to keep secret from everyone but her. She said that often, at the end of a day, he'd go a little crazy, stomping around for a while, and groaning or roaring. "Sometimes," she said, "he would hit himself, and even knock himself out with his own fists." She attributed it to self-hate. I knew the verse in Ephesians, "No man ever yet hated his own flesh, but nourishes and cherishes it." I didn't comment, but marveled and remembered her words. I have had occasion in later years to know a stunning variety of people, and learned compassion for their afflictions. I learned that apparent self-hate is usually a distorted kind of self-love. I know people with several kinds of mental illnesses, and some whose symptoms were quite distressing and disturbing. But none I have met are as afflicted as my uncle, so far as I knew.
Reading Josh Harnagrave's amazing memoir has brought it all together for me. In The World's Strongest Librarian: A Memoir of Tourette's, Faith, Strength, and the Power of Family we learn of Josh's titanic struggle to live with Tourette Syndrome. His case is one of the most severe on record.
In the following I will use the abbreviation PwT for "person with Tourette's". PwT's experience numerous involuntary actions that are called "tics". A Tourette tic is, we learn, like a sneeze, but imagine every possible level of sneeze, from a silent jerk to a tiny "choo", all the way to something that seems it will blow your head off and can be heard a county away. Some sneezes we can anticipate, and perhaps stifle, or press our philtrim to stop, but others happen suddenly and without warning. Now imagine the smaller ones happening a few times per minute, and so on. A PwT may experience many smaller tics without noticing: grimaces, tiny sounds, rapid blinking and head jerks. The classic Tourette tics I read about many years ago are less common: louder grunts and shouts, even spoken words, seemingly picked at random from a common vocabulary of one-syllable words.
A side note at this point. The "travesty" program gathers all possible strings of 1 to 3 characters, including blanks and punctuation, from some moderate size text, such as a Shakespeare play or a short story by Hemingway. It arranges these statistically according to frequency of use. Then it randomly picks text snippets from this database and strings them together. The result is a piece of text that can be read aloud, is meaningless, but sounds like something written by that author. Many longer strings make actual words. Here's the interesting point. Travesties in English always contain numerous examples of the word "shit". The reason is simple. "sh" and "s" are the most common word endings, while "t" and "it" are very common word beginnings. Divorce them from the words they started with, mash them together statistically, and you get a lot of shit! (along with "st" and "sht" and so forth). Accidental occurrences of other popular swear words are not nearly so common in travesties. In addition, "shit" is one of the easiest words to say.
When a PwT is having strong vocal tics, if the sounds resemble words, they are likely to be words that are easy to say, and "shit" tops the list. Thus arose the common perception that PwT's swear constantly. Actually, they don't. A few who have more frequent vocal tics make such words mainly by accident. They have no more control over the sound than any of us have over a sneeze, once it begins. If a series of vocal tics is a series of swear words, the PwT probably has partial control, and is swearing his (rarely her) heart out, with good reason!
I won't attempt to summarize Josh's life story. Rather, two items stand out. Firstly, in his late twenties, he began having more violent tics, which began when he slugged himself, drawing blood. Throughout the book, he describes how he could sometimes control the tics for a short time, but this would be followed by a more severe series of outbursts. He had a kind of theory that a certain amount of energy had to be expended in tics each day, and it was better to have a lot of littler ones. Once he began having such dangerous tics, he became more desperate to learn to control them. He had learned that vigorous exercise seemed to quell the tics for a time, or perhaps he was channeling their energy into his iron-pumping motions. But this resulted in great strength, and he was getting seriously hurt. Then (the second item) he stumbled on an extreme strength trainer named Adam T. Glass, who taught him a different way to think about himself and Tourette's. In particular, he needed to think about motions, and which ones helped or hurt. Over time, Josh began to focus on breathing. With time and patience and effort, he gained a measure of control. Spoiler alert: Then Adam confided that he is autistic. Josh writes that it took a different kind of mind to see through what others could not.
This is not the end of the story. Today Josh is 35 or so, and has found that some techniques that once helped have become less effective, but by focusing on motions that help or hurt, has learned to modify what he does to retain some semblance of balance and control. In all this, I am amazed at the composure and support he gets from his wife. He and his family are Mormon, and at times in his life he was helped by his faith. He explains some aspects of Mormonism "from the inside". He is closer to an agnostic stance now, yet acknowledges the comfort faith can bring.
I wonder how my uncle and aunt would have fared if my uncle's affliction, which was probably Tourette's, were more appropriately dealt with. He had apparently learned to bottle up his tics while in the classroom or among us, but paid for it with damaging outbursts later. He lived to be nearly 75. I hope Josh does better than my uncle did. He certainly has a better handle on it than anyone had 40 years ago. His web site contains a blog and helpful links for PwT's. And you can find more about Adam T. Glass here.