The interesting thing about dystonia is that it is so often hidden, so often silent. We have friends that have known my husband for decades and never knew he was suffering from a neurological disorder or was in pain. In fact, despite my openness, our closest friends don’t really get what’s going on with our boys. Don’t get me wrong, we tell them what we’re going through. We try to make people understand. But nobody does. And how could they? They look at our boys and on the surface they look and act normal.
That’s the thing with dystonia. Most types are very episodic. When everything is fine, you would have no way to know that they had anything atypical happening in their little bodies. It’s only for the period in time when the brain misfires that their body goes awry. No misfire, no pain, no falling, no crying. Just happy healthy perfectly normal kids…… Until they are not.
Here’s what kills me. Because they look and act normal, people assume they are, even if you tell them otherwise. I tell someone “Chronic pain” and they see happy active freedom of movement. I tell someone “sleepless nights” they see an abundance of energy. I say “pain anxiety” and they think behavioural issues”. In short, every time I try and explain what’s happening, and that I’m hanging on by a thread, I just look crazy. Then I feel even more misunderstood.
I can’t tell you how often I hear: “Oh well, it doesn’t seem to be slowing them down”, and “I’ll have to get you the name a good sleep trainer I know”. My favourites are the dietary suggestions: “It could be a milk allergy”, or “have you tried gluten free?”. I was once told that they couldn’t have severe pain very often or they would have depression.
Eventually a play date ends or the sun goes down and it’s time to leave the park and go home. Then everything falls apart. For some reason it is worse after a lot of activity. It almost seems like the muscles can’t stop firing once they’ve started. By the time dinner is over, it’s started. Contorting feet, arching backs and contracting diaphragm causing coughs and GERD. And I know I’m in for a long night. Even worse, I know tomorrow nobody will believe me.
So, to everyone who ever tried to convince me that it’s not that bad, that they look fine, that they’re perfectly happy and healthy, that they are active and energetic and “seem normal” to you. I guess all I can say is thank you, I’ll take that as a compliment.
The fact that you’ve spent so much time around my child and can’t wrap your head around them being anything other than happy healthy energetic perfectly normal little boys means I’m doing my job. And while yes, it’s isolating and frustrating and very invalidating, it also means that I’m achieving my goals as a mom. It means those long six hours I spend last night holding a four year old upright so he could sleep without pain was worth it. It means all the behind the scenes struggles are giving them the skills to compensate and blend in with their peers. It means my kids are learning how to persist and overcome adversity. It means they are happy and healthy. It means I am doing my job.
So my dear friend, thank you for the compliment. I’m pretty sure you didn’t intend it to be one, but I’ll take it. And while I really wish you’d believe my sons when they tell you what they’re experiencing, it’s okay, you don’t have to. They have me for that.