June 25, 2013

Surrender your say


Imagine if you Tweeted something embarrassing, offensive, or just plain weird - and you had no control over it.

That's what it's like to have Tourette Syndrome.

People with Tourette Syndrome suffer from involuntary vocal and physical outbursts known as tics, that cause them to say or do things that are out of their control.

Tics are a lot more complex than just swearing. A tic could be anything - jumping, screaming, sneezing, twitching - and is completely uncontrolled. Many people with Tourette Syndrome compare their tics to a sneeze, because they’re almost impossible to hold in, and the person won’t feel better until they allow themselves to tic.

For 24 hours, you can experience what it’s like to have Tourette Syndrome as for one day only the Tourette Syndrome Foundation of Canada will Tweet on your behalf (you don't need to give your password). Every Tweet is inspired by a real person with Tourette Syndrome. And because there is no censored version of Tourette Syndrome, their Tweets aren’t censored either.

You can end your experience any time, so I gave it a go a few days ago. It was weird at the beginning. I was going "hey, I did not Tweet that!" There was also fear of what "I" could say next - I didn't want to be rude or offensive.


There was a lot of "ins ins ins ins", "mashed, yes. I don't know", a few "bitch"... sometimes within just a few minutes, sometimes a couple of hours apart. I really felt like I had no control, as if my account had been hacked. And I realized that the minds of people suffering from Tourette Syndrom were hacked just the same, but from the inside, by themselves. It made me sad.


I lost a few followers during the experience. Fear of the difference? Not wanting to be bothered? Annoying? It made me appreciate how lonely it must be at times living with Tourette Syndrome. How socially difficult and desabiliting it must be not having control over some of your sayings and movements.

I sure hope you'll give it a try to better understand that disease and share your experience as well. Click here, Tourette Syndrome Foundation, and surrender your Twitter-say for a day. Acceptance and understanding is easier when experienced, even from a distance.

Sending many blessings your way,

Patricia

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