I posted this article on Google+ ages ago, so if you've already read it on there, nothing has changed - this is the same article. You'll probably want to hop along to someone else's blog, using the link below. Otherwise, read on, for some insight into daily life with this genetic neurological disorder.
Disclaimer: Tourette's affects everyone differently. The experience I share below is my own, and is probably not the same for anyone else who has Tourette's.
Like Rachel, the girl in my recently-released
book Rachel's Journey I have
Tourette's Syndrome. I've had it all my life.
Tourette's affects everyone
differently, but for me, and for Rachel, it mostly manifests itself in facial
tics, sniffing and nail biting. I involuntarily open my mouth wide and twist my
neck violently which cracks my neck and jaw, while simultaneously raising my
eyebrows and screwing up my face. My eyes are shut when I tic so even if I
stand in front of a mirror I have no idea what it looks like, but I imagine it
looks pretty bizarre.
To those who know me, this is normal.
Those who see me daily don't even notice it. To strangers, or those who don't
know me so well, I guess I'm a freak. I think my tics define me to others, in a
way. I know it's often the first thing people who don't know me well think of,
when they think of me.
For me, tics are just something I
live with. They're annoying, but they're not the worst part of this disorder.
The worst part by far is the co-morbidities that go with it - the way my brain
processes things. I don't think like normal people do; but what is normal? To
me, this is normal. Inside my head I'm often fighting urges to say
inappropriate things at VERY inappropriate times. The media likes to sensationalize
the swearing part of Tourette's and for a few, that is a challenge - trying to
abstain from involuntary, random bouts of swearing. I don't have that
problem. Don't get me wrong - on occasion I'll swear as much as the next
person. But it's not Tourette's causing it. My urges are ruder - they're
usually full insults - and fortunately I am able to control them, otherwise I'd
be offending people left, right and centre, all day long, every single day.
My finger nails never grow. Well they
do, but I bite them back as soon as they do. Sometimes, if I'm particularly
stressed, I'll be biting them back before they grow - biting my nails to the
quick and beyond, ripping and tearing at them with my teeth until they bleed.
My neck, shoulders and jaw constantly
ache from my tics - from being so violently twisted and cracked. Physiotherapy
or other treatment is pointless - it's less than a day after treatment that
I've hurt myself again.
It's not the Tourette's Syndrome that
people can see that affects my life the most, it's the effects of Tourette's
that they can't see.
Like me, Rachel lives like this every
day. And it's her inner journey, the struggles nobody sees, which is what this
story is about. Well, partly. There's a few good spankings in there too :)
You can check out the other participants in the June Challenge here:
Thank you so much Kelly for giving us this insight into living with Tourette's Syndrome and a greater understanding. I think it's wonderful that you have shared your experiences with Tourette's through Rachel in your book.
ReplyDeleteHugs
Roz
Thanks Roz!
DeleteI wish people in the media would read it, then they might start to portray it accurately :)