National Tourettes Awareness is INTERNATIONAL!

You've heard of Tourettes Syndrome.  How about TOURETTES KARAOKE? Can you imagine?  Well imagine no more!  I had the honor of interviewing Toureteskaraoke.com internet "sensation" Guy  Francis. Exciting times!  National Tourettes Awareness is REALLY International!!  To be able to video interview a fellow Tourettes person across the ocean is for me, a great thing.  Guy has Tourettes and Aspergers.  He also has 6 + million views on youtube, where he first shared his  condition publicly. His only drive was to deal with his diagnosis of Tourettes Syndrome. We will share this interview in 5 parts.

            


                                                       visit www.touretteskaraoke.com

Tourettes and Coprolalia

Despite the popularity of an aspect of Tourette Syndrome that causes it's "recipients" to blurt curse words at any time and place, Coprolalia (as it's proper tittle) is only had by a small percentage (15-20%) of theTourette population. TV shows, movies and youtube have brought this symptom to the public eye/ear creating millions of curious folks. Shows like LA Law, Deuce Bigalo, Tourette Guy and South Park have all presented both a humorous and candid treatment of this unusual aspect of Tourette.      
As one who has lived with Tourettes for close to 40 years and experienced having Coprolalia as a child and now slightly as an adult,  I want to assure you that it can be both funny and challenging. In this video interview I talk about an alternative approach to this issue:

Tourettes Awareness...

Tick..Tock ..Tick..Tock..Tourette-Tic-Tic! Time to celebrate National Tourettes Awareness Day April 29th! Do you or anyone you know have experience with Tourettes, Autism and other spectrum disorders? I invite you to share it here as well as on my site: www.stephendijoseph.com. It could end up in the movie I'm producing "A Synaptic Adventure: Tourettes and Beyond"!

Check out these UK folks I've been in touch with: Jessica Thom is TourettesHero.com. This month she and her team of "heroes" were interviewed on BBC radio and had a flood of 18,000 people on her site!

Chris De Burgh is Touretteskaraoke.com.I discovered Chris in a karaoke video (one of his many) where he's sings classic hits with his tourette-interjected "blurts". He has 500,000 views on youtube.
 

There's more than the clock ticing here. TICING as in TWITCHING as in ..well…constant movement. Isn't that what life is? Constant movement? And that ticing, that persistent, driving force has created an explosion of awareness. There is a surge in expression  artisTICly, arTICulately, educationally, creatively and supportively. An increase in understanding of the unique, creative and challenging nature of Tourettes, Autism and other spectrum disorders.

What on Earth?

Today is Earth Day. I'm thinking about our birth on it. Our relationship to it. Most specifically, I'm thinking in terms of one's mind-journey, one's 'Synaptic Adventure'  and the Synaptic Adventure of all things alive. I don't believe it begins at birth, this Synaptic Adventure thingy. Hey, call me metaphysical, but I think this life is a chapter in a never ending story. Told, experienced... by day, by night, by minute, by month, by millennium, by eternity. We come and go, us humans. When someone we knew personally has suddenly moved on, we are hyper-reminded of the temporal nature of our "stay" here.

Now I've always been taught to leave things the way I found them. For the next person. I'm still working on that. I hopefully can leave things even better than they were but at the least, I'd like to know I didn't leave the place a mess. What on Earth...are we here for? A coexistence of the mundane and magnificent for sure. It seems to me that navigating, by awareness, ones' Synaptic Adventure, ones mind-journey, this is what connects us to each other, our purpose and our environment.

Today's blog is dedicated to the life of Richard Magidson who left things better than how he found them.

About Sticking Out

 I'm in the process of making a film/series/talk show/book ( heck, maybe even a T-shirt or..or...a line of DOLLs!) about the internal/ emotional experience of  being "normal- yet -noticeably" different. Of "sticking out" in a crowd when you DON'T want to. Not the illustrious, star-studed dream life of a public figure (or so we imagine), but the everyday life of the average human who just wants to be.

 Imagine, if you will: you're going about your daily routines, errands and chores and are frequently the subject of someones disgruntled, nervous or curious stare. When you go to a restaurant to have a quiet meal and you're the one whose noisy (no, not your chewing). When you're in a movie and you involuntarily make commentary ( sometimes that's entertaining ). You're in a library and you have what feels like an uncontrollable urge to blurt absurd things about your surroundings or what those surroundings make you think about ( FIRE!) Or you're walking down the market isle side-stepping every 5 feet  because you just "have to". OR...you're walking down a city street and the police pull up on the curb blocking you with their car.. and JUMP OUT Keystone-Cop style and shout "what are you on!?

 I must say that talking to ones' self has become SO much easier with the advent of cell/digital phones. I feel a strange ... satisfaction... when I see folks all around me looking as though they are talking to THEMselves too!

This is a story about appearing to be normal, yet not quite. About appearing to be ok, yet not quite. About looking like you're fine, yet not quite. I'm thinking alot these days about " yet, not quite".

the Tourettes and the Hare

Dear Easter Bunny

I have a confession. Sometime ago, I pretended to be you. It was

not a pretty sight. But it was for a good cause. Aside of paying the

rent, it was an inspirational opportunity to educate people...kids...about other kids who are...different. I couldn't help but relate.

The Muscular Dystrophy Assoc. was hiring educators to go to schools

and share the message. Inform kids about their fellow youngsters who

faced physical challenges. Though they appeared to be different, they were normal kids inside, just like themselves. 

The job requirement included wearing a...bunny suit. Uhm...a white bunny suit, with only my face showing. I found this a bit disconcerting as I have a mustache. I kinda looked like Groucho Marks being eaten by a rabbit. So, I whitened my 'stache and put some pink coloring on my nose. It was functional. My name was Floppy. No, I did not choose that name. I wanted Rodger, but they wouldn't have it. The kids were fairly receptive..and some what abusive. One little guy was obsessed with pulling my tale off. I don't know how you do it.

All in all, I meant well and now recall this experience as I enter

into a story about being different...and making a difference.

Respectfully yours,

you know who...

 

 

PS May I have my egg? 

Wings Synaptic Adventure

In this process of  making a movie about my Tourette experience, I have inevitably wondered about the journeys, the ..Synaptic Adventures… of others.

This week, I met an amazing human. Peter Wing is a man of art. An artist's artist. I was honored to spend time at, what I would say is arguably one of the most amazing places in the Northeast. Wings Castle.Wings Castle is situated over-looking an amazing view of the Hudson Valley and mountain range of New York State. It lyes a short 15 min ride from the town of Millbrook NY. 

  Peter Wing started building (and continues to add on to) his castle in the country 42 years ago when he returned from his tour of duty in Viet Nam. He built from stretch using a variety of materials found among antique dealer searches, local stone sources, a clear affinity for the medieval, buddhism, and the art of stain glass, Peter is unquestionably a master at homesteading."You see that stone you're standing near" he said to us as we were filming footage for a music vid , " It contains what was determined to be a dinosaur footprint. Rocks like that all over this (Hudson) Valley..beneath the surface.

"Beneath the surface, along the by-ways, in out-of-the-way places, unexpected corners and impossible possibilities lyes a journey we all take: A Synaptic Adventure. 

PS Luckily for us, Mr Wing and his equally awesome wife Toni, offer this unforgettable location as a bed and breakfast! Do yourself a serious favor. Make a reservation. Before I fill up the Wings Castle schedule!