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To the Strangers Who Stare at My Dystonia When I Walk Down the Street

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There is a quote attributed to Franz Kafka which goes like this: “When you stand in front of me and look at me, what do you know of the griefs that are mine and what do I know of yours? And if I were to cast myself down before you and weep and tell you, what more would you know about me than you know about Hell when someone tells you it is hot and dreadful?”

I have a condition called cervical dystonia (spasmodic torticollis), which is characterized by involuntary muscle spasms in the neck and shoulders. Consequently, particularly when I am walking, I cannot hold my head upright, although the treatment and medication makes this a little easier. However, when I was first diagnosed, I had to hold my head with both hands to see in front of me, could not use my right hand for writing or eating because of nerve damage sustained from constantly holding my head, and could barely walk 10 meters without stopping to catch my breath. Five years on, some days are better than others, and I am pleased to say the good ones are becoming more frequent.

So, when I have a bad day this is the quote which always springs to mind for two reasons. First, when people stare or laugh at me, they know about the troubles in my life as much as I know about theirs: very little, if anything at all. Second, trying to explain to someone how it feels to be part of a world in which I no longer feel I belong can be extremely difficult. In a similar vein to Kafka, words alone cannot quite convey just how hard it is living as someone — something — different. I can tell them it is sad and hurtful because I am seemingly judged for something I can’t do anything about. I can tell them how, having endured it for the best part of five years, with too many instances of it happening, it can be easier not to go out at all unless I really have to.

Once, as I was walking to the train station, a man and his very young son were heading towards me. As they got closer I noticed the man was staring at me with a look of disgust on his face. He wasn’t even polite enough to stop as soon as we made eye contact, which is probably why I snapped. I continued to look right at him and asked, in as loud a voice as I could muster so everyone else in the street could hear, if he had a problem with me. Only then did he become ashamed, told me there was no problem and quickly walked on with his head bowed. A little while afterwards, as I was waiting for my train, I could not help but wonder what kind of example he was setting his son.

On another occasion, I was having a particularly bad day with my symptoms, which means I was looking and feeling worse than usual, so I decided to take the bus home. When I got off, I noticed a man talking to a woman still in her car. I heard her ask the man to ask me what was wrong with my neck and, judging by the tone of her voice, she wasn’t asking out of any great concern for me. I could hear her laughing. 

As I walked past, he did as the woman requested and, in a flash of rage, I turned around and told him it was none of his business. No doubt spurred on by the woman in the car, he then had the audacity to tell me, as I continued my journey homewards it was bad manners not to answer a question when asked. Needless to say, at this point I was furious! I didn’t need a lesson in what constitutes good manners from someone who clearly had none. So I walked right up to him and asked him why he thought it was his business to know in the first place. He didn’t answer and I resumed my walk. It was only when I was some distance away that he started hurling abuse at me, by which time I was in tears and, despite really wanting to go back and have it out with him and that odious woman, I just walked on. I didn’t want him to see just how much he had gotten to me.

That’s what it feels like when I am faced with the reactions of people I encounter on the rare occasions I go out. Not only have I lost control of my body, I have no control over how people react to, or interact with, me when they see me. Yes, I can get angry and really stare back at them until I am satisfied they have been shamed into looking the other way. Better yet, if I am really riled, I can say something back and shame them even further. However, it is nigh on impossible to be like that every single time another person stares at me for a few seconds longer than I would consider polite. There are, quite simply, too many instances of it happening to count and I can’t be — I won’t be — angry at everyone all the time. I could easily spend every moment of my life outdoors staring back at people with my “angry” face, or tell them to stop. 

I never asked to be like this; no one would. I don’t want anyone to feel sorry for me, do anything for me, or ask if I’m all right. I just want people to treat me with the same respect they would treat any other stranger. Ambivalence I can handle! Why is that so difficult when the only thing which makes me “different” is my neck?

So, if there is one thing I would like those people to know or hear me say, it is this: Stop! There are many beautiful things in this world which are far more deserving of your attention than someone who has a problem holding their head straight or walking. And if you cannot find them or do not want to look for them, well, that tells me more about the kind of person you are than a dodgy neck and an odd posture tell you about the kind of person I am. Remember: You get to choose. I don’t.

The Mighty is asking the following: “Staring” is a topic that comes up so much in our community. Tell us about one unforgettable “staring” experience you or someone you love had that’s related to disability, disease or illness. Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 17, 2016
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