For
the first 18 and half years of my life I had a Big Secret. It was, I
felt, a secret so terrible, so bizarre, so frightening, and so….well….BIG
I tried hiding it even from myself. I did not know what would happen
to me should others discover my Big Secret, but judging from the reactions
I received when only the slightest hints of my Big Secret occasionally
snuck out I knew it could not be good.
So
I went to any lengths to conceal the truth: I said nothing when my parents
interrogated me concerning "acting out" behaviour. I said nothing when,
at 10, I was continually chastised for scribbling on my schoolwork and,
at 16, I appeared to be peeing myself in class. I kept other children
at arm's length and said nothing, positive they would never like me
if they knew. I said nothing when, night after night, I endured what
I fondly refer to as "scream-dreams", where everyone I knew and loved
berated me, bound me into a straightjacket, and threw me into a padded
room. Put into therapy at 12 because of my despondency, my therapist
asked me if there was anything I wanted to tell him about. I again said
nothing.
My
Big Secret, of course, was that I "wanted" to do strange movements and
make strange noises, although "wanted" seemed not to be the right word.
Even though I "wanted" to, I didn't really WANT to. How does a child
explain this?
Keeping
my Big Secret was one of the most self-destructive things I have ever
done. The ever-present sureness that I was a "wrong" person caused many
self-fulfilling problems, and negated any positives that ever occurred
(because, of course, those positives were given to me by people who
did not know who I "really" was).
Back
then, in the absence of much awareness of, or research in, Tourette
Syndrome, my going undiagnosed may have been a good thing………had they
known, all of my actions would have been interpreted within a very different
context, one influenced by fear and ignorance. Decisions concerning
my abilities, or assumed lack thereof, may have been made for me. So
while at 26 I might have had fewer emotional scars, on the other hand
I might have also been picking garbage in a park somewhere.
Today,
however, with awareness, education, and supports for TS as widespread
as they are, an early diagnosis can allow today's children to have their
cake and eat it too - less psychological damage from going misunderstood
AND the knowledge that you have many strengths and the ability to achieve
your goals not just in spite of the TS but in fact because of it. I
believe that "coming clean" about your TS in the classroom is one of
the most risky, nerve-wracking, and courageous leaps of faith that you
will ever take. I also fervently believe that it is one of the best,
most rewarding things you could ever do for yourself. Here's why:
Suppression shoots you in the foot. From my own experiences, and
from what I've observed in other TS'ers I've worked with, what is denied
expression in tics leaks out in other ways.…..increased irritability,
explosiveness, anxiety, obsessive-compulsivity.....all things that,
ironically, can get you into much more trouble than the tics ever could
have! In essence, you are so busy committing what meager inhibitory
resources you have to hiding your tics, all reserves are depleted for
inhibiting anything ELSE. You have left yourself defenseless in dealing
with an unexpected frustration, focussing on a math lesson, or coping
with an intrusive thought. One boy I know, after months of TS education
directed at both him and his school, reached a point of acceptance where
he chose to begin ticking in class. I remember the surprise in his voice
when, in a subsequent meeting, he told me with pride, "I can pay ATTENTION
now!"
Did I mention that suppression shoots you in the foot? One of the
reasons I was so certain that people wouldn't accept my oddities is
because of how "big" each reaction was. What I've learned since is that
while people react "big" the first few times, unsuppressed tics send
a clear nonverbal message that "I have a difference". This helps people
who initially have no idea how to react to quickly adjust to the situation
and develop good poker faces (many of my friends and colleagues claim
they have reached a point where they literally don't notice my symptoms
anymore). Back when I only ever allowed single tics to intermittently
sneak out people hadn't the opportunity to become accustomed to them,
to realize that there wasn't a purpose behind them, or sometimes to
even realize that it was I making these noises. In a sense they hadn't
the opportunity to appreciate how rude their reactions were. As far
as they were concerned I wasn't "Duncan with TS", I was "Duncan who
is just like us who just did something strange so it's safe to laugh".
Will
conclude next time, my friends!
Duncan
