The
worst thing about having Tourette’s Syndrome is not the fact that I have to nod
my head, clear my throat, sniff, shrug my shoulders and go ‘hmm’ every 8
seconds, but the fact that everyone thinks they’re an expert on it. There are two general reactions that I get to
telling people I suffer from Tourette’s:
Now
you may have guessed from reading my blog that I have a sense of humour, thus:
And
I am all for laughing at hilarious diseases; I mean, a disease that makes you do
weird things for no reason has comic value and I shouldn’t be too sensitive
about it, and I’m not, as a matter of fact.
Diseases like AIDS and cancer aren’t particularly funny because they
affect the lives of millions and millions of people and, even if one has never
known anyone that has had a horrible, life-threatening, disease like that, we
have some understanding about how us or a loved one having the disease could
make us feel. The effects of cancer, for
example, are so vivid and real in everyday life that there is literally nothing
funny about them at all.
Tourette’s,
on the other hand, must seem completely inaccessible to the general public;
they can empathise with losing one’s hair or having a tumour removed because that
is something that could potentially happen to them. What people don’t seem to empathise with is
things they don’t understand, and when people don’t understand things, the
easiest thing to do is to laugh at them.
I’m not trying to be all high and mighty here as I’m completely guilty
of this too, and, seeing as it must be very difficult for a person to
understand what it is to have no control over one’s movements or vocalisations,
it’s not surprising people make jokes about it.
By the same token, I have no idea what it would be like to have my
testicles kicked, and so laughing at it is very easy. And Tourette’s, let’s face it, is a hilarious
disease when not properly understood. I
laughed myself silly at a book called ‘Pets with Tourette’s’ which involves an
adorable rabbit yelling out ‘Tossbag!’ It’s not the general public’s fault that
they’ve been given a false impression of what the disease is, so I bear nobody
any ill will for making Tourette’s jokes.
80% of the time, I find them just as funny, and I don’t mind at all when
people laugh at my tics. The other 20% of the time I give an inward sigh and
wish that the disease that I happen to suffer with wasn’t one that also
happened to be hilarious.
Just
in case people don’t know what Tourette’s is, it’s not actually a disease in
itself, but just a way of categorising tic disorders. Many people have tics, but, to have Tourette’s
Syndrome, you must have had at least one vocal tic and at least one physical
tic (at the same time) for over a year.
Mine have been going on for 17. (The
disease where people swear uncontrollably is actually called ‘Coprolalia’, and
can be had completely independently of Tourette’s. In fact, only 1 in 10 Tourette’s sufferers
have Coprolalia, but the media don’t want anyone to know about this for some
reason; maybe because people simply twitching and making random sounds isn’t
quite as funny as if they were yelling 'CUNT!' at the top of their voice.)
Let
me show you what having Touette’s is like.
Imagine there is a tiny cloud in your brain; I don’t know why it’s a
cloud but it is:
Now
this cloud, for no reason whatever, will slowly begin to grow and grow over 10
seconds. It’s not painful, and it’s not
like an itch. I would liken it to
feeling like the snowstorm that you used to get on old TVs being inside your
brain. It’s fuzzy; it’s grey, it’s
sticky, and it’s really, really annoying.
You can choose to keep it there and get increasingly more frustrated,
but after about 8 seconds it gets so unbearable that you need to shake it away;
then you get about one second of wonderful relief, before the cloud begins to
build again. The cloud can be in the
head, or it can be in a limb, or it may be in the nose or throat, meaning that
you have to make a noise to get rid of it.
Sometimes I’m in a situation where performing these tics is not an
option, meaning that I have to sit still and bear it; the effort of repressing them
is so great that it means you cannot concentrate on anything else. So, contrary to popular opinion, Tourette’s
tics are not strictly involuntary (like a sneeze, or snatching your hand away
from something hot), as you can control them to an extent. It’s just really, REALLY hard.
I
often wonder what my life would have been like without Tourette’s; on the one
hand, I find myself fanaticising about how WONDERFUL it would be not have to do
tics every few seconds. To actually
possess control over every inch of my body would be utterly amazing; THINK WHAT
I COULD DO!!!! As is often said, freedom is wasted on the free; everyone out
there who doesn’t have Tourette’s has an incredible gift in that they are free
not to sniff and twitch their heads and can just sit and watch something for
more than 3 minutes without feeling like they want to scream. On the other hand, there are far worse
problems in the world, and, in a way, I am incredibly lucky. Having this disease completely shaped my
personality into what it is today; I was forced to be weird and eccentric because
it allows me to get away with odd things; often people don’t even notice I have
tics until I tell them because I compensate for them in all sorts of inventive
ways:
It
also made me into the actress that I am; on stage, you see, my tics just vanish
completely. I mean, the character doesn’t
have Tourette’s, does she? It’s ironic that I am only truly free to be myself
when I am pretending to be someone else! The energy stored up from tics that I have not performed is then used to
raise the stakes for my character and make her as present on stage as possible. In this way, my disease is a gift. Hooray for me!!!! J
Hooray for you indeed! Very very interesting. In particular as I have never noticed a single tic.
ReplyDelete