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!

Generousity Helps Us Thrive.

           

I want to ask you: Can you think of someone who's who helped you gain insight into your life?

An insight which truly made you better than you would have been without it?

There is a  man I want to talk about . He is a very talented man from Serbia. He came to this country to pursue his dream in creative advertising.  He was incredibly generous with his time and ideas.  He believed that if he helped others succeed, so will he. And I? I was a recipient of this generousity, without which I would be less today.

Serge Nikolich  became highly interested in helping me develop my career. He helped me think about how my Tourettes had a "unique" and "advantageous" effect  on my artistry.  He believed in my talent and saw not a disability, but rather  an... ADVANTAGE! How different life is experienced when one takes such a viewpoint as one's own. He helped me to think of Tourettes as a "collaborative presence" in my work. He helped me to develop the presentation of my piano music into "Pianopoetry".

Pianopoetry Link
cover design / photo by serge nikolich (website)

For me this cover art is a "concrete" reminder of the impact generosity toward one another can have. As you think through your own life, is there someone who comes to mind for you, whose generosity added to your path? Or perhaps is was you in the role of giving such a gift to another?

Self-Conscious Awareness

I'm thinking about times when I feel self-conscious. When I feel like I'm being looked at in
a less-than-favorable light. The fact is that most times that kind of "looked-at" is being done by me. And the "looking-at" that others are doing towards me are usually valid, since what I do is most definitely out of the norm.


It was an OCD type of thing. I used to squeeze glasses. Drinking glasses. Especially the cheap ones they give you in diners. So thin and crack-able. Irresistible to the likes of me! The  glassware I'm thinking about seemed to be in every place I ate going back 25 years. All of them had this type of fragile drink-ware. So, when I would be compelled to "test" the pressure limits of such objects, I would often fail at leaving them intact. There I was squeezing and breaking glasses in public, often resulting in a bleeding hand and a diner-full of stares, gasps and generally startled fellow-patrons.


And how did I handle this, you ask ? (Ok so I asked FOR you!) I seem to have developed a business-as-usual attitude that had an oddly smoke-screen-ish affect upon the surrounding observers of my strange obsession. Sometimes an almost hypnoTIC make-my-actions-invisible affect.


At the least, it helped me greatly to cope with something for which I had no logical explanation. I would downplay the situation and look for the quickest way to find help, find a solution, get what was needed (ie. stitches or a band aids...). I would refuse to panic!


Ever been self-conscious?