"Puppet on a String" - A poem about Tourette Syndrome by Caitlin Lord

"Puppet on a String"

A poem about Tourette Syndrome by Caitlin Lord

I have Tourette's, some may ask what that is, 

it’s a complex condition and there’s so much more than just tics. 

I don’t tic for fun, tics hurt and cause pain, 

But I continue to fight it, every single day. 

Fighting the pain and living with Tourette's, in the day and the night, never getting enough rest. 

But the thing that annoys me most of all, is feeling like I’m never in control. 

My tics are here just doing their own thing, 

 

I don’t feel in control, just like a puppet on a string. 

 

The stares, the sneers, the laughs and the talk, 

Everywhere I go, people think it’s just a joke. 

But what people don’t see is that behind the involuntary 

Tics and movements I’m just trying to be me 

I don’t like being in the spotlight, the centre of everything, 

 

Just like a puppet on a string. 

 

I don’t mean any harm, nor can I stop my tics. 

I try to hide and control them, but I just wish there was a fix, 

So that I wouldn’t have to feel like a burden anymore,  

And no longer would I be dancing, 

 

Performing like a puppet on a string 

 

The tics are never ending, and they constantly change. 

They wax and they wane, changing every day. 

I’m not in control of my movements or the noises that I make, 

Or the pain that comes with my Tourette's every single day. 

The pain is bad and whilst I’ve learnt to cope, 

I still carry hope that one day I will be healed of my Tourette's 

And no longer will I feel like I’m dangling, 

 

Just like a puppet on a string. 

 

But with Tourette syndrome comes so much more 

Tics are just a small part of the jigsaw. 

The comorbid conditions range far and wide and for me this just means there’s even more to hide. 

OCD, hyperactivity, SPD, fatigue and rage, these are just a few, there’s too many name.  

No 2 people’s experience with Tourette syndrome is the same, 

But something in common is how strong we are, we made to be different which makes us stand out from the crowd.  

Just like a puppet alone on the stage 

These are just a few of the challenges we face. 

We don’t get the chance to hide in the wings. 

 

We always stand out like a puppet on a string. 

 

But what I’m starting to learn is that whilst I have Tourette's, 

It doesn’t define me, so I’m always looking at what my next 

Challenge or project is, trying not to let it stop me 

From doing what I enjoy. 

 

And whilst it limits me in different ways, 

There are many things that I can do, even with the feeling too 

Of feeling like a puppet on a string, not in control of anything. 

Always feeling like I’m losing 1-0 to Tourette's, and not knowing what is coming next. 

But I’ll stand out from the crowd, even when my tics are really loud. 

To raise awareness for this condition and show people that Tourette's isn’t all fun and games. 

But most of all it doesn’t define me, because I’m God’s child and he has set me free. 

Tourette’s is just part of my story and part of who I am, but it’s not all that makes me, 

 

And that’s something that I wish people would see.