"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 cringes.........in 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!
Duncan
