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Disinhibited Thoughts #10

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Life's A Twitch! Celebrating 15 years.
1998 - 2018
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Family Guilt

"I still cringe every time I read about how your family didn't understand you. It sounds like they were awful............."

My sister wrote this to me in an email recently, shortly after I proudly circulated an article chronicling my difficult youth. I am ecstatic that Heather and I have now, after so many wasted years, gained a measure of comfort with one another -- enough to trust her brother with something so sensitive. Her comment made me pause and consider something I have until now been rather unmindful of: the impact of diagnosis on parents, families and even many teachers can be considerable. Many feel crippled with guilt once they learn that this child or student they have been disciplining for inappropriateness has had a disorder all along. It further occurred to me that I should write something to alleviate that guilt, for it is undeserved.

I can well understand why my sister each of my presentations and interviews I tend to divulge at least some of the wretched private depths I inhabited for many years. My logic is that if I want people who are lost in Tourettic turmoil to believe in their own ability to eventually prevail then it is important to establish that others have done exactly that. After all, it is easy enough for someone who has not been scarred by such unremitting dejection and rejection to smugly suggest you merely "buck up". Easy enough, but incredibly minimizing without any spoken appreciation of what you've experienced.

While I WAS miserable in my youth, and so this work I do provides tremendous personal validation to the emotions I endured, quite honestly I do often cringe myself at those articles. This is because I do not in any way hold my family responsible for their unaware reactions to my TS. It is absurd to have expected them to understand and accommodate for neurology I myself didn't comprehend, and that had gone unrecognized by any professionals they'd spoken to about me (something I have only just learned that they did). If we are to begin assigning blame then I'd better take my OWN place in line as well. By not trusting my family with my "big secret" I decided for them that they wouldn't understand and set the stage myself for further hurt.

To both my family and others burdened with remorse I offer this: what truly marks your calibre is how you've reacted SINCE you've known what was going on, not how you acted BEFORE. You've attended presentations. You've read literature. You've watched videos. You've reached out enthusiastically and supported in all the ways you did not know how to before but wanted to. It is on THAT plane you deserve to be judged.

Just as families like mine should not feel culpable for pre-diagnosis actions, TS'ers like myself should also not cast blame for pre-diagnosis actions. It is very important that we learn to forgive the world for its inadvertent treatment of us, which is a topic I'll broach in a couple of months.

Until next time, my friends!

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Last updated on January 3, 2018

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