Noah recently celebrated his Bar Mitzvah. At the event, he gave a speech called a D’var Torah, which explains the Torah portion he chose to read. His speech focused on having Tourette Syndrome and relating it back to Moses’ last speech to his people. It was a powerful moment for all in attendance and ended with the poem written by his mother, Jennifer, called “The Real Me.”
As a special surprise, Jennifer worked with 27 different congregations from Toronto to Florida, NY to LA to also honor Noah and spread Tourette Advocacy and awareness by also reading this poem to their congregations the weekend on his Bar Mitzvah.
Here is an excerpt from Noah’s speech:
“I can relate to Moses in another way. At the beginning, Moses had a disability, where he would stutter or had a speech impediment every time he talked. You might think someone with this set back wouldn’t make a good leader. And yet, Moses was a great leader. He was able to overcome his disability and not let it stand in his way. He needed to teach God’s words, lessons and messages to the Jewish people. I too have a disability and I am proud of it. I have Tourette Syndrome. Tourette Syndrome is a complex neurological disorder where your body makes involuntary movements or noises known as motor and vocal tics. You might think because of this disorder, I might not be a good leader, but that couldn’t be further from the truth.
I am becoming a youth ambassador for the Tourette Association of America. This platform will allow me to be a role model for younger kids diagnosed with Tourette. It is also important for me to advocate and spread awareness so that other people better understand the facts about Tourette and what it is like for those of us who live it. Just like Moses had to overcome his speech impediment, I have to overcome my Tourette so that I can be a great leader too. Ha’azinu means essentially “listen up.” Moses begins his last speech with the word Ha’azinu because he as a leader has something important to say and he needs everyone to pay full attention as he teaches. Today, I too would like to say “Ha’azinu” to this congregation of my family and friends so that I can teach you a bit about Tourette. This is a poem written by my mom, but inspired be me.”
The Real Me
Written by Jennifer Brick
When I lie in bed, I can feel myself tic.
Involuntary movements. Fingers that flick.
Bobbing head. Repeated neck jerk.
They morph. They change. They rarely lurk.
Sometimes vocal. Sounds that escape.
Over and over like a broken tape.
Others don’t see. They can’t understand.
The life I live in Tourette land.
People do notice. But there’s more to see.
Beyond the tic-ing boy. There’s the real me.
I feel things deeply. That’s not all bad,
Highs so high when I’m happy. Just so hard to be sad.
By default I see the good. Happy I’m alive.
But the shadow looms large, weighing down my life.
How would you feel if your movements weren’t all your own?
And the thoughts in your head, you wish didn’t have a home.
At the core, I really am a like-able guy.
There are people who see it, the sparkle in my eye.
Do my best to maintain my positivity.
Tourette is just ONE part of the real me.
I’m funny. I’m smart. Creativity abound.
I live in my head. Imagination all around.
I’m kind. Too kind. Resilient. I forgive.
Hoping friendships will continue to live.
Despite my exaggerated sense of justice.
With a view of accidents on purpose.
Dysinhibition. An inability
To consistently inhibit urges neurologically.
I am not in control of my body.
Which is why you must look harder. Find the real me.
I talk too much. Give too many details.
I interrupt. Explode. Friendships derailed.
The thing about TS. It rarely walks alone.
Comorbids like rage. Anger full blown.
Emotion regulation. I try to learn.
Feel too much too fast. Can’t control the burn.
ADHD. I know it annoys.
Can’t sit still. Constant noise.
You don’t see me trying. How hard it is to be,
To belong. To fit in. To like. The real me.
Thank goodness for my family. Full of love.
Pick me up when I’m low. Cheer with a hug.
It’s lonely this Tourette. There’s no cure to be found.
This little known disorder. Yet we’re mocked as clowns.
I say “I have Tourette.” And you make “that face.”
Not the one of sympathy. Instead disgrace.
NOT behavioral, it’s NEURO. Want to shout it far and wide.
No one listens. All are busy. Your own demons to hide.
Won’t define me. I won’t let it. Not a disability.
Take the time. Make an effort. Get to know the real me.
At this time, please open up your Etz Chayim Chumash
and turn to page 1185 as we begin this morning’s Torah reading.