Before I begin take two, I would just like to thank everyone who read my first proper blog. I really thought it would be one of those things I post, no one read and I never feel like doing it again, the nervy b was real when I posted.
This is all still very new to me and I’m hoping I can get into the swing of posting regularly, after speaking about something so personal on the previous blog I wasn’t sure where to go with the next…
We have all heard the saying "sticks and stones may break my bones, but words will never hurt me." Told to us from a young age, an old rhyme to make words seem insignificant. In actual truth, words hurt. Sometimes more than stones.
So for this blog I spoke to some friends who are in the same "Cockayne Syndrome boat", some have their brothers and sisters still with them and others are what we call butterflies - too precious for earth and at peace.
I asked about how words had affected them, if anyone had ever made a passing comment that stuck out to them - that they have continually thought about.
To begin with I will start with one of my own experiences;
"You can't use the sympathy vote."
Your personal statement for university is meant to be a way of expressing yourself, letting the universities get an insight into what you're really like, past the grades and your UCAS points, it's a personal statement, it literally says personal. So by using Terri as an example - to show my experience with those with special needs - at the time i was considering a career in special needs, mental health or childcare in general.
But no, it came across as looking for sympathy - I went home, and cried. It wasn't my intention. But even now, 5 years later, i still think about it. Another sibling went through the same, being told mentioning her Brother was too personal.
I didn't apply for university, and i'm not entirely sure why.
In all honesty, my childhood was ok, people in my year at school were kind and understanding. My Brother's year weren't so kind, someone actually said "her eyes are like her wheelchair, retarded", one of the things in the long list of horrible things his ears had to hear.
After speaking to others I found that these words and passing comments weren't unusual.
One Sister, who's Sister like mine, appeared younger than you'd presume, often being questioned about her age. Scenario, you see a gorgeous little face staring up at you, a little face that looks like that of a baby - most peoples first question is "how old are they?". This Sister answered the question, "She's 4". The lady presumed 4 month and told the older Sister, "There's no need to lie is there".
But she hadn't lied.
This woman was blinded by the idea of normal and didn't think before she spoke. Rather than being inquisitive and maybe asking a few more questions, learning about the syndrome and being supportive she made a comment that would make the sibling lie from then on about the age of her Sister to avoid another situation like that one.
When Terri was 2 years old she had cataracts removed - another one of the clinical problems that come with her disorder. At the time of doing the operation the surgeons hadn't realised how little her eyes were and so when inserting the lens used what they had available, this has since cause her problems - her eye magnifies light causing pain and discomfort making her unable to see.
Routine after the operation is to ensure no light gets to the eye - she wore sunglasses. Me, my Mum and Terri were at the bus stop going into town and a lady turned to her friend and said "fancy putting sunglasses on your child in December", There it was, another small minded comment - no consideration to why she had sunglasses on or the fact that we were stood only footsteps away.
"At least my brother/sister isn't going to die."
Thanks. There's something I didn't know. My Sister's life expectancy.
The worst thing you could say. Why? Why would anyone say that? Because people are cruel. People who aren't going through anything similar. Why should they understand? Sometimes I question why we were dealt our cards. Maybe it's because we are accepting or are we just accepting because of our circumstances?
I could write forever about all the comments people have made.
This isn't me looking for sympathy;
This is me telling you to THINK BEFORE YOU SPEAK.
- Jody Patricia
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