Dear Dystonia

Screw you!  You are nothing but impossible to be around.  There is no break from you and my body tires so hard to be there for my friend and the harder I try, the more you carry on with your stupidness.  This is your definition:

Dystonia is a movement disorder in which a person’s muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body. Dystonia affects about 1% of the population, and women are more prone to it than men.

My client has generalized dystonia.  That means every part of his body is affected.  Blepharospasm affects the eyes and face, Cranial dystonia affects the head, face, and neck muscles, Oromandibular dystonia causes spasms of the jaw, lips, and tongue muscles, Spasmodic dystonia affects the throat muscles that are responsible for speech and finally, Torsion dystonia is a very rare disorder. It affects the entire body and seriously disables the person who has it. Symptoms generally appear in childhood and get worse as the person ages.  I wish the definition added that it can affect any muscle you have in your body, will keep the person from doing regular daily things like eating and living their life.

Sometimes it’s better and sometimes worse.  If he has a growth spurt, it can be awful for him.  Otherwise, he likes to do things just like any other teenager.  I try my best to make that happen, even if he is having a hard day.  No doubt he is stronger than me.  But sometimes I can find pressure points and break the tone.  Or make him laugh so hard, that his whole body turns to mush.  That’s my favourite.

Today was riddled with pain, spasms, screaming and still wanting to watch t.v., eat, go to a soccer game, nap, go for a walk and with me to get a position change.  All those things were made difficult by, you guessed it, Dystonia.  The harder I held him, or if I got a rubber bendy straw, the more his head with flip the opposite way, torque itself or limbs would get wrapped in his wheelchair.  The worst is when throat muscles tighten up once the food has already gone in, it makes choking very possible.  It’s pretty hard to scare me, but on occasion, I get super scared.  He often says the look on my face or if I yell, shocks him out of the spasm.

I get worried.  I get worried that he hasn’t eaten enough to truly be full, I get worried he may break an arm as he wraps it around his chair, I’m worried that he’ll hold his breathe for too long and when he can’t do something he really wants to do, I am worried he will suffer physiologically from that.  I don’t worry in front of him and keep my cool most times.   That helps us handle whatever it is together.

He has the best personality and is such a wonderful friend to have.  I mean it, he is a friend.  Our hang outs together, are just as fulfilling as any.  We make each other laugh, take each other fun places, have heart to hearts, fight and cry (well I don’t) together.  The good and bad, we’ve been through it all.  I can’t wait till this, whatever it is, is over.  I hope he can go to school tomorrow, sit, listen, learn and fulfill his goals to go to University!

But for now, Dystonia, you can suck it!  I don’t want to hear from you tonight as he sleeps.  Give him a break, he’s had you visit him unwantingly all day.



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