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Nicola McDowell’s Blog 12

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Nicola McDowell sustained a brain injury aged sixteen, and for the following seventeen years was unaware that she had CVI. Through a series of blogs Nicola shares her experiences with us.

Walking a social tightrope

It's human nature to want to feel loved, to feel accepted and to feel like you belong in whatever club, tribe or friendship group you are associated with. Not many people go out of their way to alienate themselves from society and most just want to be accepted for who they are. None more so than people with disabilities. But, as other people who are just a little bit different to the norm would attest to, finding yourself on the outside of any social group is not a fun place to be. And for those of us that have experienced the trials and tribulations of the high school years can appreciate, finding yourself on the social outer without really understanding why, can be a pretty bitter pill to swallow.

There are many reasons why people are cruelly classed as social outsiders, some of which are quite obvious (although this does not make it any less cruel). However, for someone walking around with undiagnosed CVI, the reason may not seem so obvious to themselves or even to the people close to them. But because their behaviour just seems different, at times even a bit odd for no apparent reason, it is deemed as wrong or even anti-social. But what if the person with CVI sees their behaviour as simply a necessity to get through each day, a way of surviving the craziness that is their world and really doesn't understand that what they are doing is wrong? Should they be mocked, or shunned by their peers because they are not being a 'normal teenager'?

This is the situation I found myself in, a sudden social outcast, someone that seemed at odds with my peers and someone that just didn't seem to be able to correctly respond to different social situations. And although the school days became increasingly more difficult and sometimes quite lonely, I don't blame my peers for responding to me in the way that they did. At times, I am sure that I wasn't all that pleasant to be around. My emotions were all over the place, some days I was relaxed and easy to talk to, whereas other days, I was so stressed and anxious that I would have come across as angry and detached. Added to this, at some point of every day, I was so mentally and physically fatigued that I avoided my friends altogether and retreated to places of solitude, like the library or a quiet place on the school field.

On top of this Jekyll and Hyde personality quagmire, my stupid, but actually very clever brain (see blog 11), was also kicking in with some protective strategies all of its own. You see, a social situation of a group of people talking, in the middle of a congested environment (such as the school lunch area) is really overwhelming for someone whose visual and mental capacities are not always working to their full potential. Very easily I would become overloaded with all the visual and auditory information and find it difficult to follow along with what people were saying. I would struggle to know who was talking and it would take me a while to process what they were actually saying. I would also find it hard to read people's body language and facial expressions and misinterpret what they were saying. Often when I tried to join in the conversation, I would stutter, forget the words I wanted to say and struggle to string a sentence together.

My brain would then respond as if I was in a life or death situation (possibly I was close to dying of embarrassment?) and kick into fight or flight mode again, which made the whole situation worse. I started to dread such encounters and preferred to spend time with just one person, or by myself. Unfortunately, the one person that seemed to understand that these quirky behaviours weren't actually a reflection of my true personality, they were just survival mechanisms, was a member of the opposite sex. And as everyone knows, abandoning your friends in preference to spending all your time with a boy, is a big no no in the rulebook of teenage life.

I therefore, often found myself at a crossroads and choosing between spending time with a group of people, that did not always get me, did not always make me feel welcome and didn't want to accept the 'new me'. Or spending time with someone that did not see that there was a new me, instead continued to see me as the person I had always been and accepted my strange behaviours for what they were - a way of getting through each day. The preference to be with just one person at a time, alienated me even more from my social group. Which was unfortunate, as talking with just one person at a time, allowed me to more easily follow the conversation, to see and read body language and facial expressions and to actually be able to participate in the conversation.

It was like walking a social tightrope every day.

Nicola McDowell sustained a brain injury aged sixteen, and for the following seventeen years was unaware that she had CVI. Through a series of blogs Nicola shares her experiences with us.

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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.