At long last, here is Chapter 2 of my book “Happily Ticked Off” for you to read if you’re interested. I hope to share more with you on this book’s progress, my writing progress and my kid’s crazy life in 2015.
As always, I’d love to hear from you, too!
Chapter 2 — CinemaTIC
Tourette Syndrome – Movie Style!
If Tourettes’ was your movie, what genre would you write? Whatever you choose, be prepared for lots of action, drama, tears and laughter.
Selling a movie isn’t much different than being handed a Tourette’s diagnosis. Both involve stories of heartfelt love, drama and unpredictability. Most people have a general idea of what might be involved to proceed, but when push comes to shove, no one is really prepared for all the twists and turns.
What path does one take?
What people do you need to speak to?
Do you have to spend a ton of time and money to get great results or is it just one giant crap shoot? And really, like the script itself, is there a happy ending?
It occurs to me that despite big talk about loving the adventure of movies and parenthood, everyone feels the most safe and satisfied when they can count on the big shiny finale. Give us happy bows and Happy Meals. Let us get fat on security and hold a bit tighter to our overpriced gallon sized Diet Cokes through the scary parts, because at the end it’ll be worth it. That theme song will blare and the credits will roll. Boy that was sure scary there for a while, but look how great it all turned out. And that heroine sure had great hair the entire time – even during the knife fight.
The problem with tics is that you can’t count on that perfect happy ending wrapped up with a bow. There are millions of ways to manage Tourettes, and with a personal plan, created through trial and error, oftentimes one can suppress the symptoms a good deal, but there is no perfect solution.
With this syndrome, you can’t sit back, like at the movies, and watch the hero make a few mistakes but ultimately gain the shiny prize of happiness in the end. You have to be the hero.
When it comes right down to it, watching the hero and being the hero are two completely different ballgames altogether. Viewing the hero from a comfortable theater seat is encouraging and uplifting. In a cocoon of complete darkness, you are akin to a child in the womb – enjoying life from in an insulated bubble of complete and total safety.
When you are the hero, it’s downright terrifying. Despite heart pounding anxiety and abject terror of failure, you have to forge a new path to a new land – not just for you, but for the well being of your entire family. You don’t get to be inspired, you have to be inspiring. You don’t get handed the happy ending. You have to earn it.
When Nicky got his diagnosis at age four, I was by no means ready to be a hero. I wanted a hero to save me. I would gladly enjoy an action adventure, but I wanted to watch it, not live it. Where was the caped crusader when a gal needed him? The movie could have been so awesome. I watched it so many times in my head those first few months, I memorized the script.
The Tic Wrangler Rides Again
THE SETTING: BEDROOM.
A YOUNG MOTHER is reading by the light of the moon at her bedroom window. Tears of frustration fall onto her 2000 page self-help book.
Close up of book title: The Incurable Curse of Tourette Syndrome, its Psychopaths, and its F–k F–k F–k You Motherf—-r Cursing Component
She looks up from the page and her eyes widen like saucers. Standing, in her bedroom window, is none other than the handsome rugged hero she has been longing for – The Tic Wrangler!
With a strong jawline, long legs and a five o’clock shadow, he looks exactly like her handsome husband, only he’s wearing cowboy boots and has a cartridge belt filled with silver bullets slung round his hips.
He leans against the doorjamb with his white Stetson on cocked at the perfect angle.
She drops her book to the floor. “Be still my beating heart,” she whispers. There’s a new sheriff in town, and he’s not leaving to fix his car or watch Modern Marvels: The History of the Cheese Wheel. Those gray green eyes are looking at her – through her – and he understands it all.
The Tic Wrangler: Sounds like you ran into some twitch trouble, little lady.
Mother: Oh, I have! Those darn nasty tics! I just can’t fight them!
The Tic Wrangler flexes his bulging muscle and the silver bullets glint like stars in the warm summer light.
The Tic Wrangler: What’s a pretty little lady like you taking on such villains on all by your lonesome? It would be my honor to fight those pesky T.S. varmints for you.
Mother: Oh, Tic Wrangler, you would do that for me?
The Tic Wrangler: Yes, and I won’t even beg for sex.
Mother: You really are my hero!
The Tic Wrangler: This town ain’t big enough for those tics. High noon, it will all be over.
He sweeps her up in his arms. For the first time since her son’s diagnosis, she feels safe. Someone, besides her, is in control.
Mother: Where are we going?
The Tic Wrangler: Into the sunset, my dear.
Mother: Oh, Tic Wrangler! Is there anything you can’t do?
Super Tic: Laundry.
Mother: Fair enough. Call that horse of yours!
A beautiful white horse appears majestically at her window. The Tic Wrangler jumps onto it. He then lifts the mother in his strong arms and places her in front of him. She rests her head in his chest and takes in his scent of leather and Musk.
Mother: All feels right, finally!
Tic Wrangler: Like the gorgeous view, the sun is setting on your little tic problem.
As they ride off into the sunset, the clouds form the words Tourettes Cured.
Cue Theme Music. Words slowly run across the screen: And they all lived happily ever after, Tic and Fancy Free.
The above script might appear a slight exaggeration. After all, as much as I wanted the TS to vanish, I didn’t really expect a superhero to hitch his horse to my mailbox and fix everything. But the reality of a syndrome that had no answers felt equally far-fetched.
Having lived 35 years where no ailment of the body couldn’t be fixed by a prescription, and no ailment of the heart couldn’t be soothed by friends, family and the balm of time, I was completely unprepared for the life script I was handed. The theme felt so dark. The characters felt so rigid and boring. The plot felt so dismal. What producer in his right mind would finance a film like this?
Perhaps if Nicky’s diagnosis were presented to me as a French film, complete with English subtitles, I’d ease into the experience more easily.
THE SETTING: NEUROLOGIST OFFICE
The location is a cross between a doctor’s exam room and a chic French café. A young MOTHER, dressed in a designer outfit and heels, sips cappuccino at a red checked café table. Candles replace overhead lights.
There are canisters of cotton balls and stirring sticks, along with cookies and coffee grinds. An exam table is present, where her YOUNG SON lays in a vintage coat, wool shorts and cap. His chubby legs sport fat feet which are are tucked into leather walking shoes. He is so friggin cherubic the mother could eat him, but she sticks to her bread and olive oil instead.
The son is being examined by a HANDSOME DOCTOR who wears a white lab coat and a beret on his head.
ENTER SOUND EFFECTS: Soothing French music
The doctor, after winking at the young boy and handing him a bright yellow balloon, turns to the mother.
Doctor: Beautiful madame, no worries. It’s a small case of zee tics. Have some Chianti, switch to gluten free baguettes and enjoy your life.
Instead, this was my experience.
SETTING: NEUROLOGIST OFFICE
Glaring overhead lights shine down on smudged white walls and grey linoleum. A YOUNG MOTHER sits on a plastic chair with a TWO YEAR OLD GIRL (EVIE) on her lap singing the alphabet song. A curly topped FOUR YEAR OLD BOY (NICKY) bounces a white balloon made from a doctor’s plastic glove.
A DOCTOR, dressed in a white lab coat, turns to the mother. She does not smile.
Doctor: Your son has Tourette Syndrome.
Mother: (Shaken) But… wow… really? You’ve only seen him for five minutes.
Doctor: True. But based on the information you gave me – that he’s been making slight vocal sounds and movements for over one year – he has it.
Mother: This just seems… I mean… what now?
Doctor: You can consider medication. Or you can just wait it out. Some kids don’t need it and just live with the condition. (Looks at boy) It doesn’t seem to bother him.
Mother: Not now. But what about later?
Doctor: Well, that’s where the “wait it out” part comes in.
Mother: What about the whole cursing part of Tourettes?
Doctor: Coprolalia. Yes, that’s an unfortunate component for some kids. But less than ten percent get that.
Mother: So the chances of my son getting that?
Doctor: Well, you have a ninety percent chance of avoiding it.
Mother: You are a completely cold jerk. I hope if you ever have a child you get assigned a doctor just like you who tells you that instead of a penis your child has grown a honking elephant trunk. What about progression of symptoms?
The doctor continues to look at her. She does not blink. Clearly she does not have Tourettes. Good for her!
Mother: Since he was diagnosed so young, will it get worse and worse, or do you think it might remain the same or even get better?
Doctor: Hard to say. It could get better. It could get worse. We’ll have to wait and see.
Mother: What about his social life? Will he have behavior problems or trouble making friends?
The doctor looks over at the boy who is sucking on three of the five fingers of the blown up glove, making his sister giggle.
Doctor: It depends on the child. You’ll have to wait and see.
Mother: So you’re telling me, after giving my boy nothing more than a five minute physical exam, that my son has some major neurological disorder that may or may not get worse? It may or may not impede his social and emotional growth? It may or may not warrant heavy narcotics, depending on twists of fate, his own brain chemistry, or some combo of the two?
Doctor: That’s correct. Would you like a follow up appointment in six months?
The mother glares at the doctor.
Mother: I suppose I’ll have to wait and see.
After hearing the above scenario the first time, a dear friend of mine asked if perhaps I portrayed the doctor too broadly. “Is it possible,” she prodded, “That in your grief over the unexpected diagnosis you perceived the neurologist as harsher than she actually was?”
I took a moment to think about it. I wish she were right, but the truth of that visit was as cold and flat as the neurologist’s bedside manner. I looked my friend squarely in the eye. “No. That woman needed a class in Empathy 101.”
Turns out the nutritionist we saw next needed a class in Stupidity 102.
THE MEDICAL DRAMA
SETTING: DOWNTOWN HOSPITAL HALLWAY
A MOTHER pushes a YOUNG TODDLER GIRL in a stroller. Her FOUR YEAR OLD SON walks next to her down a dated corridor. After jumping from one speckled vinyl square to another, he hangs around his mother’s legs.
Boy: Mama, why did we have to drive so far to come here?
Mother: Because we don’t have a food expert at our local doctor’s building.
Boy: How come?
Mother: Because we have an HMO.
Boy: What’s that?
Mother: It’s medical language for cheap ass insurance.
Boy: What is cheap ass-inclearance?
Mother: I said sweet class insurance, baby. And it’s something we have that helps us when we’re sick.
Boy: But I’m not sick, Mama.
She hugs him. Right after she does so, he clears his throat. Once, twice, then three times.
CLOSE UP: Of the boys eyes. They dart a bit from side to side.
CLOSE UP: Of the mother’s eyes. They are full of love and concern and don’t blink.
Mother: Of course you’re not sick. Insurance also helps people who are already healthy and happy.
Boy: Like you and Papa!
The mother’s mood starts to darken as she walks past door after door after door.
Mother: Oh, yes! Even though Mama goes to all these fun appointments alone and eats lunch out of a brown bag while Papa sits surrounded by interesting people in restaurants every day who wear fancy suits without stains, she is so happy because your father has a job and makes money! Lots of money! Cold hard cash is fun!
She is now walking faster as the boy runs next to his mother to keep up. The boy starts to giggle.
Boy: Mama is running! I run when I’m happy, too! I also jump!
The boy jumps. The mom, who is punchy, starts jumping also.
Mother: Why not! Jumping is fun! Jumping and running late and pushing secondhand store strollers is fun! And really, who needs new strollers or gym memberships, because it’s not stuff that makes someone happy, right? Happiness is losing your marbles in Downtown L.A. while your father socks all the money away for our future retirement because that makes him happy and if Papa is happy then Mama is happy. Happy Happy HAPPY!
The boy starts singing. “If you’re happy and you know it clap your hands!”
The mother claps. Too loud. The toddler girl starts crying.
Boy: Evie is not happy. Maybe we should just go home.
Mother: (Through gritted teeth) No. We came all the way down here to meet an expert who has the answers to everything!
Boy: I thought Papa was the expert who had all the answers!
Mother: Not when it comes to cooking healthy.
They come upon a door that reads “Nutritionist”.
Mother: Ah! Finally! Here we are. This person is going to teach us a whole lot about good food to help our bodies stay even healthier.
Boy: She sounds really smart.
Mother: She’s beyond smart. I can’t wait for you to meet her.
Smash cut to:
SETTING: NUTRITIONIST OFFICE
A bumbling woman with a thick accent reads a chart.
Nutritionist: Your son has… how you say… Torest?
Nutritionist: I never heard of it.
Mother: (dumb founded) How can that be?
Nutritionist: Mam… Mam… we treat so many people. Is impossible for us to know about every condition out there.
The mother starts to well up with tears. The toddler is still crying. The boy, who has been playing with a blow up doctor’s glove, pops his balloon. Now he’s crying.
Nutritionist: Oh, no, da pity! Da pity!
She hands the boy a lollipop and the mother a tissue.
Mother: (To boy) Oh, sweetie, you shouldn’t eat that.
The boy starts crying harder.
Nutritionist: Oh, can he not have sugar? Da pity!
Mother: It’s not just the sugar. I hear the food dyes can really interfere with brain synapses, triggering tics.
Nutritionist: Everything in moderation, Mam. It’s fine. Beside, he tic. So vat? He no have cancer. He be fine.
The boy grabs the lollipop and stops crying. The toddler, who now has a sippy cup , stops crying. The mother blows her nose and tries to stop crying herself.
Mother: (wiping her tears) I’m sorry. I just drove all the way out here in traffic… and I’m tired… and…
The boy starts coughing.
Nutritionist: And your son has a cold on top of it.
Mother: Not exactly. It’s part of… oh never mind! (She takes a deep breath.) Look, maybe if you can’t help me with Tourettes specifically, you can tell me your thoughts about food related tics. I’ve done a lot of research on the internet and I’ve heard going gluten free can really help. What do you think?
Nutritionist: I think you need be careful about trusting everything you read online. It not like many these people are experts or anything.
As the mother’s jaw drops, her daughter drops her sippy cup. The boy drops his lollipop on the floor. Her children’s screams match her look of incredulous horror.
Over the course of the next few months, there were many rewrites to the above scripts. Often they consisted of changes of scenery. Instead of optometrist or neurologist offices, I’d find myself in Urgent Cares oror emergency rooms due to face scrunches so severe I was sure Nicky was having a seizure.
“There is nothing out of the ordinary,” the doctors would tell me, pulling him out of an MRI machine.
“That was better than the Star Tours ride at Disneyland!” my son would proclaim, despite laying still for 30 minutes straight while I told himstories of Scooby Doo and the Spooky Tunnel of Light.
From blood work to EKGs, I did everything in my power to find a reason for my son’s condition, but in the end found nothing but clean bills of health. I was happy he wasn’t dying of a brain tumor, but was beyond frustrated that there were no concrete answers.
Perhaps a more rational person would stop fighting at some point. But at the beginning of my son’s diagnosis, I was far from rational. And how could I be? This was my baby, and in my gut, it didn’t make sense there wasn’t relief out there. Nothing my husband or friends could tell me about “acceptance” would do.
Perhaps no cowboy was going to take me away to Twitch Free Country, but I wanted answers. Nothing but complete annihilation of those tics would do. Tourettes was my nemesis and I was John Wayne: I wanted a silver bullet.
One year later…
With the tics still waxing and waning with no seeming pattern, the one preditctable piece of his future was his education. At least he’d be going to school with his buddies from preschool.
Oh, wait, he would not be.
While all my friend’s kids received formal welcome letters to the grammar school, my son did not. I wondered this had to do with the fact that I’d been so open about my son’s diagnosis? Should I not have said anything to his teacher? Was I too transparent with other moms about my fears? Was this letter a passive aggressive way of telling me, “We don’t want his kind here.”
I was bewildered, hurt, but most of all, angry. After three years of financially supporting the preschool, and getting nothing but glowing reports about my son’s educational capabilities, I never saw this coming.
Spurred on by fury, I set an appointment for the following day. Rejection letter in hand, I wanted an answer, and they were going to give me one. I sat in the lobby and waited, steam coming out of my ears.
As a do-gooder Catholic schoolgirl, I wasn’t used to sitting in the principal’s office. Little did I know that this would be the first of many principal meetings, over many years, regarding my son. Experience would make such conferences easier, and a sense of humor would help make a few of them laughable. But that day I was in no mood for a chuckle.
After finally being lead into the principal’s office – the principal being a somber woman five years my junior who also happened to have gone to school with me – I was informed that “Nicky didn’t grasp his pencil correctly in the interview process.”
“You’ve got to be kidding,” I chortled in shock. Before I could continue she added, “He seemed a bit immature.”
After peeling myself up off the floor and holding back my impulse to scream “Jesus Christ!” – and not because there was a lovely oil painting of our Lord standing behind this woman’s head – I told her how disappointed I was. “He’s 5! He’s not supposed to be mature. And why does it matter if he can grip a pencil correctly, anyway? Isn’t this what he’s supposed to learn in kindergarten?”
She responded, “His lack of coordination is disconcerting. It implies that he’ll need some special attention that we just can’t give when there are thirty kids in the classroom and only one teacher.”
To this I responded, “With a ratio like that, why would I want to spend six grand a year on his schooling?”
To which she responded, “For the Christian education.”
“Oh, yeah, I can really feel God’s love in here.”
I walked out of that office shortly after, enrolled my son in a public charter school, and have never looked back. It’s not as fancy as the private school of my dreams. But behind peeling paint is a structure built on joy that fosters creativity, self-worth and joy beyond my wildest expectations. And guess what: It’s FREE and the student to teacher ratio is twenty four to one. Jesus would be proud.
- Remember that you are not a secondary player in your movie script of life. You are the lead! Make your story exciting!
- Remember, you are a hero! Heroes make mistakes, but they win in the end. What do they win? Character and the envy of others who weren’t courageous enough to leap to the challenge. YOU can do this! (PSSSST: Heroes cry. It’s OK. But they also laugh like crazy. )
- Don’t be surprised if it takes a while to get an appointment with a neurologist.
- For your own peace of mind, get your child checked out from head to toe to be sure that nothing more serious is going on.
- Ask yourself if you’re making medical appointments from a place of fear or place of logic. If it’s fear, take a deep breath and slow down. If it’s truly TS, the symptoms aren’t going away any time fast. Treat it as a marathon, not a race. Lace up and prepare for the long haul.
- Consider not telling everyone you meet that your son has TS. Most people won’t even notice. Find a few trusted comrades you can confide in rather than telling the world.
- If your child isn’t accepted into a certain group or school, it’s okay to be mad about it. But afterward, consider saying “Thanks for the clarity!” Our kids deserve environments that they can grow in. Plus, pressure brings on tics. Consider a peaceful learning environment over an intense one.
- Speak your mind, but try to be graceful. Yes, your child is the best thing since sliced bread. But the fact is, not everyone is going to think that. It’s a fact of life.
- If your child has siblings who aren’t ticking, don’t forget to pay attention to their needs, too!