When I tell people that I have Tourettes Syndrome, I usually hear something along the lines of this response:
What?! No way! I had no idea you had Tourettes? You don’t act like someone with Tourette’s?
I don’t usually go out of my way to tell people so hearing their response gets me thinking of where their surprise may come from. I have concluded there are 4 possible reasons for their response:
- I have done a good job of hiding my tics and they have not seen me under stress
- They see past these tics and are focused on whatever we may be sharing together in the moment that this becomes white noise to their other senses
- They have a misunderstanding of what Tourette’s actually is and are influenced by the medias portrayal of it
- They lack the awareness or sensitivity to see outside of themselves and pick up on these movements I make.
There is the possibility that those I meet fit into many or none of these categories but I would like to speak particularly to number 4. Stating these ideas makes it seem like I am a self absorbed individual that believes the world should be aware and sensitive to the things going on within and outside of my body. I’m here to present the idea that they should. Because we all should. We should take more presence and awareness to what is going on with those around us. This approach to life is mindfulness at its core. Having presence of mind to pick up what is going on with those around us is a practice that can overflow into other parts of our lives. This state of awareness can especially flow into one of the most important pieces of life, acceptance and understanding.
When I speak of acceptance and understanding I am speaking to the variables of life that effect us most that we also have no control over: ethnicity, race, sexual preference etc.
Now, I claim that some of the people I tell about my disorder are exercising some form of ignorance, yet, a discussion I would have with my girlfriend would expose my own lack of awareness and ignorance to what is a reality for many people. This reality exist outside of what someone may be able to see through the physical manifestations of my Tourettes. This is the short conversation that opened my eyes:
Girlfriend: Some guy followed me for 10 blocks, whispering creepy things in my ear the whole way. I told him several times to leave me alone but he wouldn’t listen.
Me: What?! Some dude followed you for that long? Must be a total creep and a one off experience. No guy follows a woman for 10 blocks whispering creepy things to her the whole way. Do they?
Girlfriend: This happens to me in some form or another on an almost daily basis. You have no idea. This happens to many women. Just because we are women.
Having to go through this has shaped her reality but there is no way for me to see the scars. Mentally, this has shaped her. In many ways it has broken her down. This persistent nuisance that she has to go through on a daily basis is not pronounced by some physical tics like the ones that I experience. I have no way of knowing her pains and existence. Her willingness to be open to me is what has opened up this communication. Though it may cause me lots of stress to know that people can see me fidget and tic, this physical manifestation of stresses and anxieties can pale in comparison to the reality that many people face for simply existing. These are variables that are outside of their control. Race, gender, color, creed and socioeconomic background will shape their entire existence. I am lucky to have my privilege checked and my ignorance exposed. This leads me to question: Are we bringing enough awareness to the reality that many people face for simply existing?