His latest book is crap—in my mind anyway. Jonathan Lethem’s The Arrest takes place in the near future, some years after everything stops. You know, everything: electronics, motors, hydraulics, solar power, indoor plumbing. Amenities, creature comforts. It all stops, but you never learn why. Witchcraft is my guess. As good a reason as anything else.
The cartoon cover should have been my clue, and it almost was. It drew an eye-roll, but then I read the back cover; they called it a dystopian story. I’m a sucker for dystopian. But here’s the thing, they actually portrayed a utopia. An agrarian society, bicycles as transport, homemade wine, bushels of weed, a community library. It all seemed pretty A-OK to me. But of course, there was the stupid car on the cover. And around that stupid car sat a stupid plot. Whatever. I gutted through the book, the whole way wondering why I wasted my time. My answer was tucked inside the back cover, Lethem’s list of previous books. One of them, Motherless Brooklyn, caught my eye.
I do almost nothing on Facebook. When I published my first book, I set up an account. Read anything on the topic of marketing your book, the first thing they say is you gotta be on Facebook. I friended everyone I know, and just as many people that I don’t. And I’ve been unfriending them ever since.
This is how it works: I wake up in the morning to one of those alerts—a little red pool ball sitting on the bell at the top of the page. Today is Martin Smith’s birthday, wish them well. (Facebook was gender neutral when it was still considered bad grammar.) And I say “Why do I care about Martin Smith’s birthday?” And then I unfriend them. This has been going on for years. I give the same birthday gift to everyone: one less friend. I have about forty friends left.
Now my main activity on Facebook is my membership in the group “Only Adults with Tourette Syndrome.” It’s the only place I can talk with others who know what it’s like. What’s it like? Unceasingly annoying. Somewhat embarrassing. A little painful. I squish my eyes together so hard I make a fist with my face. I grunt. Yes, grunt, just like a hog. Or sometimes it’s more of a bark, like a seal. Recently, I stick out my tongue. Or flip it over. Or scrape it against my teeth until it hurts. I get caught doing these things and people act like they don’t notice. Tourettes is awkward. Those people on Facebook understand this.
From time to time, someone in the group mentions Motherless Brooklyn—the movie, not the book. From IMDB: Set against the backdrop of 1950s New York, “Motherless Brooklyn” follows Lionel Essrog, a lonely private detective afflicted with Tourette’s Syndrome, as he ventures to solve his friend’s murder. Armed only with a few clues and the powerful engine of his obsessive mind, Lionel unravels closely-guarded secrets that hold the fate of the whole city in the balance.
Six point eight stars, rather meh. Although I keep hearing great things about it. Not just from the Only Adults group but critical reviews as well. And when I found out my Arrest author, Jonathan Lethem wrote it, I grabbed a library copy to understand the hype.
Actually, that’s not really true. I grabbed a copy because I wanted to read something empowering and uplifting about this absurd affliction that colors every day of my life. My disorder is on the move. It keeps getting worse. As the pandemic heated up, my tics, those unbidden movements and sounds, increased. When I began to feel depressed, my doctor increased my Bupropion, warning me, correctly, that it might amp up my Tourettes. So I increased my Risperidone to calm down my tics. But the whole reason I take Bupropion in the first place is that Risperidone causes depression. I think I’m in a spiral.
I grabbed Motherless Brooklyn because I thought it might make me feel better about myself. The book, it turns out, is pretty different from the movie. From Goodreads: Lionel Essrog is Brooklyn’s very own self-appointed Human Freakshow, an orphan whose Tourettic impulses drive him to bark, count, and rip apart our language in the most startling and original ways. I should have read that blurb before I read the book. I don’t feel any better about myself.
I thought Motherless Brooklyn might portray a protagonist who rises above Tourette Syndrome, proudly wearing his affliction like a badge, winning over everyone with his pluck and courage. Instead I found someone beaten into the ground. Everyone calls Essrog a freak, crazyman, even his one and only friend, his boss. On the rare occasion someone isn’t making fun of him, they simply have no patience for him. He’s viewed with the sort of disdain my wife and kids reserve for the stink bugs that sometimes invade our house. Even his night of love making with what seems to be a nonjudgmental Buddhist woman winds up being sympathy sex. She wants nothing more to do with him ever after.
I’ve made it this far through my life without teasing, without ridicule, at least not to my face. I’m certain people consider me weird, a freak, but fortunately I don’t ever hear about it. Still, it’s hard to read a book like this and not internalize the insults. Motherless Brooklyn was published twenty-one years ago. Understanding and acceptance of mental illness and brain disorders has changed dramatically in that time. I can’t imagine the book being written now. The critics would revolt. Still, based on the stories told by people in my Facebook Group—those people with more disruptive tics than mine: cussing, flailing, punching, screaming—that disdain for the disorder is still rampant. I hear it in my head even though I never hear it out loud.
Motherless Brooklyn is an honest book, and I really hated it. I don’t need that much ugliness in my life. I don’t need Jonathan Lethem, who doesn’t have Tourette Syndrome, telling me I’m a freak. I feel that way every single day.
I appreciate that you read this all the way to the end. If more people understand Tourette Syndrome, acceptance (or least tolerance) will grow. Writing a story like this is the only way I know to help. Please share it with those you think might need it.
The Other Stuff 
Reblogged this on King Ben's Grandma and commented:
I don’t reblog very often, but this honest, well-written essay about Tourrette Syndrome needs to be read!
From what I’ve learned, Tourette Syndrome and Autism share a lot of similarities. Real people have these syndromes or disorders or whatever. Awareness and acceptance start with knowledge.
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You’re right. More people need to know what it’s really like. Thank you for being real, and honest. It takes courage to start the conversation.
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What the crap. Why do the people in your Facebook group rave about this awful book? Jonathan Leman sounds like a terrible author. You know, I’ll probably never be able to fully understand what it’s like to live with tourettes, but you have family and a bushel of friends that care about you and don’t think you’re a freak at all. Also I laughed out loud at “And I’ve been unfriending them ever since.” XD
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Well for the most part, they rave about the movie, not the book, but a few have said how great the book is. I’m certain to draw some ire from this post at some point.
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Oh, have you seen the movie? Maybe someone took the liberty to turn it into a more positive story. Trying to give them the benefit of the doubt haha.
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I’m sorry you read a book that made you feel bad about yourself. That stinks. I don’t think you are a freak either. I can’t imagine what the tics feel like to you. Thank you for sharing your experiences. It really does help bring awareness and understanding!
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Your book reviews rock so much! I don’t know these books but I was smiling at the first line and chuckling by the third paragraph. Strong finish as well. Keep up the honest work Jeff!! By the way when I thought I might have some mild form of Tourette’s I remember finding this really positive guy on Youtube who had it. I just spent a few minutes looking around but could not find it again. That was a couple of years ago I think. Anyway, maybe the upside of Tourette’s is blunt honesty. Which is very helpful at times. I love it in you!
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Thank you Nadine. TS is often accompanied by autism or autistic tendencies. I think that’s where my bluntness might come from. I definitely need to find some positives in TS. Susan and I talk about it all the time. I nature sends me into negative territory and there I sulk.
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As I was watching the most recent season of American Idol last night (S4, E1), I thought of you, Jeff. One of the contestants auditioning is a young woman with Tourette’s, and she’s open and accepting about it. She killed her audition. Apparently when she sings, she doesn’t have tics. A truly positive depiction of the condition.
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I’ve heard she’s a fantastic singer. I haven’t watched American Idol since the inaugural season. Maybe I should look it up now. Thanks.
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You are correct, Jeff. More people do need to know what it’s like. Tourette’s Syndrome is personal to you, so you have strong feelings about Tourette’s. We need more empathy in all areas. It sometimes seems to me that our ability to walk a mile in another’s shoes is decreasing dramatically. Then I read a post like this, and I think maybe not. As you wrote…”Understanding and acceptance of mental illness and brain disorders has changed dramatically in that time.” I hope you are right.
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In college, there was a freshman who came to all of the parties on my dorm floor. And every time, she’d end the night in tears. We called her the headcase or the drama queen or (unbelievably) tell her she was ‘on the rag’ all the time. My kids wouldn’t treat people this way. They would recognize the insecurity the woman harbored and offer empathy. Maybe I’m just looking at it through the lens of a family that’s been dealing with mental disorder issues for all these years, Maybe nothing has changed. I guess someone else would have to tell me.
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I think you are right, Jeff. We are evolving. S-l-o-w-l-y.
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I think anyone who has felt ‘different’ can at least sympathize a little with what you must face daily. I have a special needs child. He makes loud, sometimes gutteral noises. He has some tics brought on the medication that keeps him calm. He bites himself or others when his medication doesn’t help. He has so many challenges. So, even though we do not share the same conditions, we can give each other support for knowing what it’s like to go through life as ‘other’ than normal.
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I don’t think you can compare our situations. I feel like a cry-baby when I consider what you and your son go through. But yes, I do think it helps us be empathetic to each other. My level of empathy for all people has grown in direct proportion to my escalating tics.
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So many people, and I will include myself in that group, travel through life unaware of the challenges that others experience. Those challenges may be the result of brain disorders, poverty, race, or any number of things. Thanks for spreading awareness about life with Tourette Syndrome.
When I wrote my book, I was advised to start up a FB business page in addition to my regular personal page. While, of course, there is still some overlap of followers, I don’t get birthday reminders for those who follow only my business page. Debbie Frick – Author on FB also belongs to some local autism parent groups where I share things that might interest them.
The other “nice” thing about a business page is that I have more stats to follow. I know you would love that, right?
You are such an entertaining and honest writer and your story can help many. I have shared to both my FB pages.
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Debbie, thanks for all the shares. My post is getting a lot of ‘action’. I’ll pretty much only share a Tourette piece once a year on facebook (during TS awareness month). No one really seems very interested, and I don’t have many followers anyway. I think these personal stories of dealing with a disorder (like in your book) are one of the best ways to educate people and make them actually think about what it might be like. I think, that like tourette, there is a ton of judgment around people with autism too. Judgement that people are weird and judgement of parents’ ability to ‘control’ their child. I wish we could get everyone to read these blogs.
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Reblogged this on Conversations About Autism.
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