Don’t Think About Monkeys

     Don’t think about monkeys.  Having someone tell you that is as powerful as saying, “You are now blinking manually.”  The more you try to NOT think about it, the more your thoughts are filled, dare I say obsessed, with your own blinking.  Now imagine, if you can, having that thought with you every single moment, of every single day for the rest of your life, but multiplied by four, five or even six additional motions.  If you can imagine that, even briefly, then you have just the smallest bit of insight into the world of a person with Tourette Syndrome.

     My youngest child, William, was diagnosed with Tourette several years ago.  Since that time, I have read quite a few books written about Tourette Syndrome and its related disorders.  I have recently finished reading  Don’t Think About Monkeys. Extraordinary Stories Written by People with Tourette Syndrome, edited by Adam Ward Seligman and John S. Hilkevich.  This is a terrific book, filled with stories written by “Touretters” of all ages, as well as one or two written by their family members.  While I found the stories written by some of the older authors (those in their 40’s and up) sad, the stories written from the younger authors (teens and up) were full of hope and encouragement.
     That marked delineation between the two age groups is understandable.  The older authors experienced years of frustration as their conditions were misdiagnosed and misunderstood.  The younger authors were diagnosed early by a medical profession that has a better understanding of this neurological disorder.  As a mom of a ten year old boy, who was diagnosed when he was four or five, I can only say that I am grateful to those with Tourette Syndrome who have pushed the medical community toward better methods of diagnosis and treatment. 
       Each short story represents the experiences of each individual author.  Their experiences are as wide ranging as their tics, and as personal as the various additional disorders that almost always accompany TS.  As I read, I found myself back in the day when William’s tics were first manifesting and wondering what on earth was going on.  I laughed as one author related his experiences at a national Tourette Syndrome conference, detailing the scene of a banquet hall full of folks ticing physically and verbally.  I was brought almost to tears as I read about the maltreatment and misunderstanding that others have endured. 

     The one thing that hit me hardest, as a mom with a young son with TS, is the constancy of how alone he must at times feel with his disorder.  Try as we might, we cannot fully understand what it must be like to have your body constantly engaged in movement that is out of your control.

     Tourette Syndrome is a neurological disorder.  It is not a behavior problem.  Asking a person with TS to not tic, is like telling yourself to not think about monkeys.  It can’t be done.
     I recommend Don’t Think About Monkeys to anyone who knows a person with TS, or to anyone who would just like a bit more insight into this very interesting disorder.
 
Don’t Think About Monkeys. Extraordinary Stories Written by People with Tourette Syndrome (* * * *)

     To understand why I think it’s so vitally important that you always have a book or two (or more) going, click here.
     Check the sidebar for a list of the books that are currently in my reading basket, as well as for a list of the books that I have read this year. 

God bless you as you look well to the ways of your household!
Proverbs 31:27
 

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8 comments to Don’t Think About Monkeys

  • Bless his heart. I say a documentary on this once and it broke my heart. They implanted an electrical mechanism in the brain and it stopped the tics. Does he have thoughts that go along with the tics or is it strictly physical?

  • @georgene – I’m not sure what you mean about “thoughts”.  Do you mean that he has the sort of “don’t think about monkeys’ thoughts concerning his tics?  If so, yes.  Will has physical and verbal tics, OCD, and some other related disorders, and a lot of that concerns “thoughts” that he needs to deal with on a daily basis.

  • While he does not have tourettes, my husband was experiencing something that I could only describe to out of town family and while on the phone with the doctor at the onset of symptoms, as someone that has tourettes. I believe have a general idea of what your son (and your family) might go through on occasion with peoples ignorance.

    We believe my husband had a stroke (so far undiagnosed officially by the doctors) and some of his symptoms were, making involuntary noises constantly and he had these very strong ‘tics’ with his arms and his head. It is amazing to see how people can be so cruel, or so very uncomfortable that they would make it clear they were avoiding looking in our direction or walking near us.

    Anyhow I am not sure why I even wrote that to you…the written word does not always come across as intended, but I just wanted to tell you thanks for your post, and I will keep you all in my prayers, if that is ok with you!

  • @Kainos – VERY okay with me, and I’ve been praying for your husband, too – that you’ll get some good answers soon. 

    People can be very cruel, even when they are otherwise well intentioned.  Dani and I can spot a child with Tourette Syndrome fairly readily now, and we always try to smile and say, “hi”, if appropriate.  I always seek out the mom to smile and greet as well. 

  • My Nolan is also like your son, he has Tourettes along with the ocd and the some other things that make life fun. What I found out that I never really thought about was that when his OCD is bad, the tics go way down, and then when the amount and type of tics increases then the OCD is not so much a issue.

  • @Midge8 – That’s interesting.  For Will, it’s quite the opposite.  If one thing is flaring up, everything flares up!  As you said, it makes life fun!!  He’s the boy God made,  in His own image, so I wouldn’t have him any other way.

  • Hi Cheryl,

    I so understand. When my OCD is acting up I have a hard time blocking things out. The more I try not to think about things the harder it is. I had a melt down this week. Dave said it was because I have had so much pressure on me lately.We are starting to settle into a new lifestyle and get back into a routine. That helps me so much.

    Have a wonderful week end and give Will a big hug.

    Elizabeth

  • We recently watched a program on TV about this. It was very interesting I do not remember which channel.