To Whom It May Concern,
First, though I am writing this letter to you today, I would ask that you do not share the following story publicly. At least for the time being.
Last week, I wrote a friend of mine — a renowned storyteller and videographer — with the idea that my wife Jeanette and I have been considering:
sharing our son’s story.
And, inevitably, our story. As parents, painful as it is to admit, we didn’t do this right. You’ll see what I mean in the ensuing pages.
In conclusion to this story, I have attached a brief write up as penned by Nolan, detailing his experience. The combination of our narratives should give you a clear picture of what the past few years have been like.
We haven’t shared this story with anyone. Given Nolan’s current acting and modeling career, we’ve been cautious. We don’t want to ruin his shot at growth within the industry he loves. How, then, can we share our experience in such a way that it doesn’t come across as crippling, but rather: empowering? At this point in our journey, it is finally becoming the latter, but the road has been long and lonely. Only a few people know about what I’m here to share, which I would assume is similar to many of the stories you hear.
What follows is the letter I sent to my friend, and I am forwarding it to you, here, as well, for your consideration.
I have been married to my wife, Jeanette, for 18 years. We have a son, Nolan, who is 13 years old, and a daughter, Elise, who is 11. We live in Pasadena, California.
My wife and I couldn’t be more different from one another. Sharing this story will be a challenge for her, but it will also be richer thanks to the emotion and sensitivity she brings to the table.
Our son, Nolan, is destined for greatness. We believe that. He is a natural-born leader. He’s fearless. He loves performance and has never shied away from the stage (more like: he has always gravitated toward it). He loves people.
Aware of the lack of musical talent in the Gross family, Jeanette and I decided to steer Nolan in the direction of acting over and above the pursuit of music. He thrived. At seven years old, he had a Hollywood Agent and was cast in back-to-back Super Bowl commercials for Hyundai and Cadillac. He got involved in acting classes and went out for auditions weekly. His hard work, even then, led to guest roles on big-name shows like American Horror Story, CSI, Masters of Sex, and more.
At the age of nine, he auditioned for a supporting role in Darren Aronofsky’s movie Noah. The directors cast him as “Young Ham” — a role shared with Logan Lerman — opposite Russell Crowe and Jennifer Conley. That summer, he spent upwards of three months on set between Long Island, New York, and Iceland.
The following summer, he went on to shoot Terminator Genisys in New Orleans, Louisiana.
Roughly eighteen months ago now, Nolan signed on with a manager named Nils Larsen, in Beverly Hills. Larsen represents some of the biggest, most “up and coming” young talent in Hollywood. Nolan is the “least famous” actor on his roster, but Larsen saw something in my son, and he began his 12th year on planet Earth with all of the momenta anyone could want or hope for.
And then, Nolan nearly lost it all.
When I think back to the earliest days of Nolan’s career as a performer (or, at least, as far as I can remember), I can recall my son’s “habits.” Or, so we called them. These “habits” would come out of nowhere, hang around for months at a time, and then disappear as replaced by something new and unexplainable:
- The “Justin Bieber” hair flick
- One hand down the back of his pants, itching
- Incessant eyebrow-raising
- Quick, constant eye-blinking
- Moving his neck like a giraffe
- Ceaseless sniffling
Perhaps each of the odd habits sounds harmless enough, but Nolan would be stuck on them for ages. His sniffling, for instance, began with a cold, but then lasted three months beyond it. Every day. All-day long.
We would yell, “Nolan, stop sniffling!”
“Nolan, do you even know what you are doing?”
“Nolan, get a tissue!”
When it came to hair-flipping, we’d tell him, “Nolan, we are cutting your hair if you don’t stop.”
When it came to scratching himself, we say, “Nolan, what’s wrong with you? You don’t have an itch.”
We assumed, because of the way that Nolan would only practice one of these odd (and increasingly irritating) habits at a time, that that’s all they were: habits. Bad habits that could be undone.
We never knew. We assumed that no one else knew, either, or paid attention to any of the things that were ever before us at home. But we were growing increasingly frustrated with Nolan, and — although nothing had yet begun to interfere with his acting career — I was becoming increasingly afraid that these habits would start to impede his upward momentum.
Immediately after signing with this manager and experiencing the craziest pilot season ever, I began to connect the dots. The habits moved to his face, and they were hard to hide. At that point, not only were we upset at him for his “lack of self-control” in everyday life…now he had his driven, competitive dad on his back, driving him around to auditions and attempting to coach him about how to suppress these habits during auditions.
Nolan would come out of the room and instead of asking him how he did, or if he had fun, or if he felt confident-would ask, “Did you watch your face? Did you do any of your habits on camera?”
Of course, Nolan would tell me, “No.” But then, he would also tell me “no” when he was right in front of me, doing it. He’d say to me “no” even though I’d just witnessed it seconds prior.
Jeanette and I grew more and more concerned until — finally — we took Nolan to Kaiser for a medical check-up.
The doctor informed us that these “odd habits” were not habits at all. They were “tics.”
Unfortunately, he didn’t give us much information beyond the name-change. He recommended that Nolan begin to see a counselor and — though I understand therapy is a beneficial aspect of many people’s lives — I admit that I took it poorly. There my wife and I sat — great parents (so we like to consider ourselves) — watching as our son sits in a room without us, talking to someone we don’t know about whether or not he is sad, or depressed, or considers his tics a result of either.
Eventually, we found someone who would allow us to be present in the room during his sessions with Nolan. He used redirection techniques to teach Nolan how — when he would have otherwise experienced a facial tic — to focus instead on something he could do off-camera like squeezing his fists or clenching his toes. We thought this might work.
At the time, we couldn’t (or didn’t want to) tell anyone about what Nolan was dealing with. Jeanette began to worry about his social experience at school. Kids are mean-what if they make fun of him? I grew increasingly afraid that Nolan would never work again. He hadn’t been receiving many callbacks as of late, and I assumed this was the reason.
Last summer, when Terminator Genisys released, Nolan’s facial tics were particularly dominant. He was scheduled for multiple Red Carpet interviews, and I remember being so worried about whether his “inconsistencies” would be visible on camera, or threaten his career. There are certain interviews we can’t watch for how noticeable they are. Nolan would get angry that he ticked on camera and — to my shame — so would I. Our displeasure began to corrode at his confidence, and the fearlessness that I always loved in him waned.
Shortly after that, I called Nolan’s acting coach and said, “I have to ask you about something we’ve been dealing with for quite some time. Nolan has been doing some…well…things with his face…”
Before I could finish, she said, “Craig, I instruct Nolan face-to-face. I’ve seen it. I’ve never said anything to either of you about it, but yes: I’ve seen it.”
I asked, “Do you think it is hurting him? Is it keeping him from getting roles?”
She responded, honestly, “I don’t know for sure, but he should be fine if he can hide them.”
Our $200+ redirection sessions with Nolan’s therapist were giving him tools to use, but he was only able to do so when he realized that he was ticking, and most of the time…he didn’t.
Nolan doesn’t know when his tics are happening.
In my mind, I know that. I can nod in assent to the reality of his uncontrollable situation, but I still grow impatient. His tics still bother me. I still yell at him even though I know that he has no idea what he’s doing. I feel like I’m losing it.
One day, I Googled “Tourette Syndrome.”
Jeanette freaked out. She got angry. Embarrassed. Afraid. She swore up and down that Tourette’s is for people who — like Cartman’s stereotype in Comedy Central’s South Park — cuss and yell uncontrollably.
I read the following:
What Is Tourette Syndrome?
Tourette syndrome is a condition that affects a person’s central nervous system and causes tics (movements or sounds that a person can’t control and that are repeated over and over).
There are two kinds of tics — motor tics and vocal tics. Motor tics are twitches or movements a person makes but can’t control. Vocal tics are sounds a person makes but can’t control. To have Tourette syndrome, a person must have at least two motor tics and one vocal tic. The person has to have the tics every day or off and on for over a year — and they have to start before the person turns eighteen.
Tics are kind of like hiccups. You don’t plan them, and you don’t want them. You can try tricks to make the hiccups stop, like drinking water upside down, but you can’t just decide to stop hiccuping. Hiccups that last too long can even start to hurt and feel uncomfortable. Tics can be like that, also.
I kept reading. I stayed up most of the night. I watched a Netflix documentary and, in the morning, asked Jeanette to do the same. We both cried, and through tears, finally admitted what had become undeniable: Nolan has Tourette’s.
The problem with the documentary, though, is that it only detailed super extreme cases of Tourette’s. Like that South Park episode. Like the movies, or the stories that are so difficult to stomach that they almost appear embellished. I can’t imagine it. Nolan wasn’t yelling cuss words, but what if he started to?
Our worry overwhelmed us. We made Nolan watch the documentary, too — a true parenting fail if ever there was one. “Hey, Nolan, come watch the worst of what you might become. Enjoy.” What the hell were we thinking?
Still, we kept it quiet. We only spoke about it between the three of us. We were afraid of how sickly the word “Tourette’s” sounded. It rang too difficult to admit.
I tried to channel our new information into my efforts to become a better parent, but if I’m honest, Nolan’s tics continued to annoy me. Because of that, it was easy for me to harp on him even when I knew he didn’t deserve it. I’d get angry at the tics and take my anger out on him. Then, I’d wallow in anger toward myself, with no one to turn to in the silence and secrecy we created surrounding his condition.
Since Nolan signed on with his new manager, he has auditioned for over eighty roles on both television and film and booked two jobs. I can’t blame it all on tics. Half the time, casting directors don’t know what they are looking for. But I know that the tics have stripped away at Nolan’s confidence, and that has been difficult to watch.
While all of this was happening, Nolan’s print and modeling career took off. He booked jobs for Target, Disneyland, Nescafe, Nike, and Nordstrom. Last month, Nolan did a photoshoot with Kristina Pimenova — the world’s youngest supermodel. The campaign isn’t out yet, but the point is: Nolan can book print because it doesn’t matter what he does with his face. The photographers are always able to capture a great shot.
Because of his success in the print world, Jeanette suggested that Nolan take a break from acting until the tics subside, or disappear altogether. I refused her proposal, saying that these things Nolan can’t help aren’t going to take away his shot at a legitimate acting career. I said, “We’re not taking a break…let’s just figure out how to keep hiding.”
So we did. And how? We went to see a Botox specialist as recommended and paid for by Kaiser. Botox was first licensed for a less than glamorous purpose than that for which it is now known: to treat muscle spasms around the eyes. What doctors soon realized was that it also cuts movement and motion, which is why it’s such a joke when you see people on TV whose faces look plastic.
That said, though, the firming up of the skin also allows for a covering up of facial tics.
When you get cosmetic botox, they (whoever they are) charge you by the unit, and there is no shortage of these toxins injected into a person’s face. My son’s face. I held Nolan’s hand a few short days before the Terminator Genisys Red Carpet as the specialist injected his whole face with Botox.
He cried. He thought that he was going to pass out and asked, “Dad… do I ever have to do that again?”
Botox takes about two weeks to go into effect, so the whole procedure made no difference whatsoever at the Terminator premier. Of course, though, I was convinced that no one could tell because no one said anything about it. It’s like when you have your zipper down. No one wants to be that guy who tells the person his zipper is down, but everyone is looking at it. Perhaps the saddest part about our story is that, after having concluded that hiding is hard, and doing no good for anyone, we continued forward anyway, convincing ourselves that we were doing a great job.
Nolan has continued to receive the Botox shots, which he goes in for every three months. The doctor always jokes with him, saying, “You’re an actor, so we can’t give you too much of this; otherwise you won’t be able to smile!” Amazingly, they have helped him hide his tics from the camera, and even if a new one arises — depending upon how wide the injection area — the new muscles have a difficult time picking up the slack. Additionally, most kids grow out of their tics by the time they hit puberty, and as of yesterday, Nolan’s doctor says that appears to be the case for him, as well. He hopes that he won’t have to see Nolan again.
As parents…we were so excited.
For those parents whose kids have an even more debilitating syndrome, our whole story will probably seem like it’s no big deal. I understand that, and I’m not trying to compete. The reason I am writing this, though, is because I believe — given our experience — that Tourette’s Syndrome has the potential to be more embarrassing than many others.
It might not kill you, but the hiding will.
The tension developed and pain caused in your relationship with your child might.
I’m furious at myself right now, as I type some of these very words to you, because — though it all makes sense to me today — none of it made sense to me for five years and the last two of which have been an utter nightmare.
Ten days ago, Nolan and I went to an LA Galaxy playoff game. Tim Howard — the USA National goalkeeper — was on the opposing team. He is the greatest USA goalkeeper of all time. Nolan loves soccer, and halfway through the game to said, “Dad, Tim Howard has Tourette Syndrome, and he’s a beast!”
I don’t know of anyone else who has talked much about this. Jeanette and I certainly haven’t heard from other parents about what to (or not to) do. I do know that Nolan hasn’t ever talked to another kid his age about it, and at this point in our journey, we all think it’s time to change that.
These days, Jeanette and I see kids like Nolan everywhere. It is easy to spot.
Between my work, life, marriage, and — despite all of the failures I’ve detailed above — attempts at good parenting, I am busy beyond belief. I don’t need a cause to champion, but I wanted to reach out to you today because I think there is a story here. A story that would speak to parents, or their children, or a world that only views Tourette’s through the lens of its worst symptoms when so many more than they exist.
I don’t know what else to do about it other than to share our story, trials, mistakes, and cover-ups.
Personally, if you agree that our story might be helpful to others, I think we could capture a powerful and resonant video that helps get the word out. That will likely be only the beginning, but I know — for as fearless as my son is — he’d be willing to talk about it. And as hard as it may be for my wife, she’d open up if it meant another family — or other parents — didn’t have to go through what we did.
Earlier this evening, I asked Nolan to write his story down for me. I didn’t tell him why, or that I’d spend the next few hours doing the same. I just wanted to see his take on what this journey has been like for him.
To complete the narrative, here it is for you to read, as well.
Genetics: a unit of heredity that is transferred from a parent to child.
I don’t know if my parents had tics or habits, or if anyone in my family ever had them, but I always wondered if this was because of them.
I always thought that having tics and habits was a bad thing. Now that I think about it, though, they have shown me a different side of myself than I have never seen before.
Dealing with habits and tics taught me that when I am faced with a difficult situation, I have to find different ways around the problem. When the solution doesn’t show itself, I have to keep persevering.
I don’t remember anything before my first habit: hair flipping. I would do it all the time. My excuse was that my hair was always in my face (even though, when I would flip my hair, it would go back to the same place every time). There wasn’t ever any reason for flipping my hair in the first place. I was growing out of the habit, and when I cut my hair, it ended completely.
I would always roll my eyes, too. I hated this one (well, I hated all of them, but this one might have been the worst). It burned my eyes, and I had no idea why I was doing it.
One night, I started crying in my bed and thought to myself, “Am I going to be doing these tics and these habits for the rest of my life?”
I hated that thought because it meant that people might notice. They might say something. They might make fun of me.
I did an interview on the Terminator Red Carpet. I just watched it back, and the first thing I saw was my nose twitch. It just kept twitching. Then my neck tic started. It saddened me to see myself do that because it was on camera and other people could see it, too. If a kid at school had said something, I wouldn’t have given a crap, but because it was on the internet, it made me mad.
I’ve always bitten my nails, too. I don’t think that nail-biting is a tic, but it has been a habit for a while now. When I first became a hand model, I had to put this stuff on my hands so that I wouldn’t bite my nails. It tasted horrible, but it didn’t stop me. It’s like someone who keeps going back to the thing that hurt them because they can’t stop.
When I moved to LA to pursue acting, I didn’t know that I had a mild case of what I now know is called Tourette’s, but I knew that I had been dealing with these things for a few months.
My tics progressively got worse. I remember my parents always talking to me about them and how I had to stop doing them. At the time, though, I wasn’t fully aware of when I was doing them. I would always feel bad when my parents would tell me to stop my tics, but I don’t think that they realized I couldn’t control them most of the time.
I still wanted to be an actor, and I knew that this was going to be something hard for me to overcome. I had to figure out how to make these things go away.
The two tics that I have been dealing with for the longest time are:
- I move my eyebrows up and down and then flicker my eyes. I know, it sounds really weird. At least I’m not barking.
- I pull the muscle on the side of my neck while I tilt my head. It’s not like it feels nice, but it’s something I can’t stop.
The reason I said “at least I’m not barking” is because my dad showed me this documentary about a few kids with very severe cases of Tourette’s. While I was watching them, I kept thinking about how thankful I am that my situation did not escalate as theirs did. Inside, I felt awful for them because I knew that I had something like them.
I started to see this guy who would give me techniques on how to control my tics when I had to. When I first began “therapy” (which I wouldn’t even call it that), I remember feeling uncomfortable because I didn’t want anyone to know about any of the things that were going on with me, even though my parents said that he couldn’t say anything. The man would ask me how I was doing, and then he would talk to me about my tics. How could I work on them? How could I make them go away? At first, his techniques were working well. I thought that they would work for a long time, but that wasn’t the case. Even though they were good, they weren’t working for me when I needed them. I stopped going to him because it wasn’t helping and if something isn’t working, fix it.
The last path that my parents and I thought that we could take was getting Botox. It wasn’t because I had wrinkles. It was because I wanted to stop the muscles from “ticking.” The first time I got Botox, I thought that I was going to faint because they put so much in. They put it in my neck, my forehead, and close to my jaw. I left worried that I would have to get that much Botox every time. When I kept going, though, the pain of the needles in my neck started to fade away.
This last time that I went in, the doctor said he noticed that it was getting harder for me to pull my neck out so that they could put the Botox in, which also meant that it would be harder for me to do the tics. I looked at my mom and thought, finally. For the first time in this five-year experience, there was a sign of relief. I wasn’t going to be doing these tics for the rest of my life!
So, this started as a sad story about not knowing how long these tics would go on. But it ends with conquering tics and finding ways to kill the opponent (which, in this case, are the tics).
The best news that I have heard in this whole process came through eight simple words, “I might never have to see you again.”
That meant I might not ever have to get Botox again, and that I finally (almost) overcame something that I had been dealing with.
I consider you to be a master storyteller, and — if you are interested in this one — would love to receive a “pitch” from you about your ideas for this project. Timeframe. Cost. Perhaps even a release strategy, if you’d want to take it that far. If it’s not in your wheelhouse, I get it. I get pitched all day long about ideas for non-profits and new things people want to do. I know when I hear a good one, and I know when it’s best to tell someone not to quit their day job. I know this is coming at you out of the blue, but any insight or direction on where to go from here, if anywhere, would be awesome.
I’ve always thought that if I ever get around to this, I would reach out to you. On top of that, finding out Nolan was almost out of the woods on all of this seemed like great timing.
Thanks for considering it,
At this point in our journey, it is 2019, and we’re five years removed from the letter above. It wasn’t the right time, but I do think that the time is still coming.
Nolan is a young man now, and at sixteen — though we suppressed it in the past — his love for music continues to grow. So does his resolve to speak boldly about things that we should never have kept hidden.
As Levi wrote into his forward at the start of this process, sometimes the things a person best champions for others are also those that he struggles most with, personally. I am aware of the disconnect between my beliefs about transparency and the way that we closeted the realities our family was dealing with during this time. As I wrote above, there’s plenty to be upset with myself about, but what else do I do now then share our stories, trials, mistakes, cover-ups, and conclusions, especially now that Nolan has decided to do the same?
I think that honesty breeds a sense of empowerment. Just recently, he has begun to find his voice as a lyricist, even going so far as to spend studio-time vocalizing his experience through the power of song. Personally — and I know I’m biased because I’m the dad (and also, the dad experiencing a sense of redemption for the years “the locusts” stole) — I think there’s huge potential for my son’s story to be heard by many a person who needs it in this world. Maybe more. We’re in the process of figuring out how best to release it now. When the time comes, I’m sure I’ll participate in spreading the news.