Elle Cosimano

… Who Shall Not Be Named

“Call him Voldemort, Harry. Always use the proper name for things. Fear of a name increases fear of the thing itself.”

— Albus Dumbledore

There is power in a name. Ask any faerie. To know a faerie’s name is to wield immeasurable control over him. He will not give it to you willingly.

Why? Ask any student of Hogwarts and they will tell you the story of “He Who Must Not Be Named”. The Dark Wizard’s name invoked such terror, other wizards dared not speak it, fearing it might invite evil upon them. Yet Harry Potter, the boy who lived, confronted his enemy. Harry called him by name. He spoke it aloud. Voldemort! And by doing so, claimed control of his fear.

And sometimes — in our less than supernatural world — we must do the same. By naming our enemy, we solidify our understanding of it. We give it shape, identity, and definition. We take smoke and fear and confusion and we ball it up in our hands until it is something tangible. What we can touch, we can influence. What we can hold, we can control.

A year ago, my oldest son was diagnosed with Tourette Syndrome. A neurologist (who will not be named… I know, I know… but it’s a necessary concession to the dark powers that be) told us we would be better off if we didn’t diagnose him at all. In his professional opinion, Tourette Syndrome carries too many stigmas for an eight year old boy to bear. He felt it would be better not to call it Tourettes. We should simply tell people that he has tics. Perhaps he would outgrow them, he’d said.

We tried this route for a while. It hovered over us, casting dark shadows, an evil without a name. It had no definition, and because there was no definition, there were no answers. When my son asked, “Why does my body do these things?” I had no response. We were grasping thin air. We had no finger-hold. No way to contain or control the enemy that caused my son’s body to perform embarrassing movements and noises. Because we couldn’t explain it, no one else could understand it. Fear and prejudice were born of ignorance, and the teasing began. By denying the name of our enemy, we left our son without a weapon. He had no tool to control his fear, or the prejudices of others who couldn’t understand why he made strange faces and why he couldn’t sit still.

So we changed battle strategies…

We told our son that he has Tourette Syndrome. We armed him with information and facts. We consulted teachers like Brad Cohen, authors like Dylan Peters, listened to speakers  like Marc Elliot, and other kids with TS. We educated his peers, his teachers, and his friends about it. We gave our enemy a face. We gave our son back his courage and his pride.

Now, my son is surrounded by friends and teachers that support him. They clearly identify his enemy and they’ve got his back every day. He is a member of his school’s Distinguished Honor Roll. He says he doesn’t notice his tics anymore, because he’s too busy and having too much fun to care. My son is the boy who lives.

In our home, we call Tourette Syndrome by its name. And we control our fear of it. If you know a child or parent that needs help understanding and educating others about Tourette Syndrome, the Tourette Syndrome Association can help.

Dec

10, 2010 |

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Elle's Life

11 Responses to “… Who Shall Not Be Named”

  1. Dad says:

    Wow….you are simply wonderful. So is Connor 🙂

  2. Carol Plaut says:

    WOW! There is power in this piece. I hope that others who are facing TS or some other adversity get a chance to read this. Thank you for sharing.

  3. Sarah Stipe says:

    Very well written! This is powerful and moving. Thank you for sharing.

  4. Donnah McIntosh says:

    Very well written. Connor is so very lucky to have a mom like you.

  5. Mindy DeMarco says:

    Wonderful piece!

  6. Aviva says:

    I got goosebumps reading this. While we aren’t struggling with TS, we are encountering mental health issues with our daughter and have yet to name it for all the world. Thank you for giving us courage. Do well written!

  7. We have been going through diagnoses (Aspergers, PDD, and now looking at TS) with my 9yo son and have dealt with the situation much the same as you. Only by knowing our enemies can we fight them AND appreciate them. There are many very special things about my son and I appreciate them all and embrace them.

  8. MIKE SMITH says:

    Very well put and a courageous way to take back control of the challenges you and your family are facing. We are confronting similar issues with our youngest here in Sweden (very difficult in a foreign country with different philosophies around diagnosis and treatment AND few bilingual experts). Silence and denial are enemies of progress and acceptance (well, in my view).

    Again, we admire your inspiring courage!

    Stay strong,
    The Smiths

  9. Megan Benedict says:

    I’m trying to write this comment through tears… You and Connor are SUCH an inspiration. I only hope that when faced with life’s challenges, I can fight them head on with as much courage and strength as Connor. I truly consider him one of my heros.

  10. Elle, you all have taken the courageous and right way to face the challenges of TS. Thank you for posting this – it leaves much food for thought for all.

  11. […] you know me, or you’ve followed my blog, then you know Tourette’s awareness has a special place in my heart.  I thought long and hard about the kind of contribution I could make toward TS education.  Book […]

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