Saturday, 26 September 2015

Don't Judge Me, I Didn't Choose to be Disabled

I am looking out of the dining room window. Autumn sunshine is bathing the back lawn, and reaching to touch everything it possibly can. It gently caresses the browning leaves on the trees, making them glint slightly. They move as if responding to a lover's touch, as the breeze passes through them.

Then before I know it, the sun disappears behind a cloud leaving everything dull and colourless. It seems like all life has been suddenly extinguished. I envy the sun. It must be nice to hide like that, letting the clouds shield and protect you, until you feel ready to shine again.

I wish I were the clouds themselves, constantly floating, always in motion, and able to escape from everything that could hold them there. I want to run away. It would be lovely to be free of my broken body, just for a moment, a single blissful moment, when I would shine.
The Cerebral Palsy would cease to be and the pain that goes with it would vanish, like a whisper does, into thin air.
I dream of a time when I am equal. It would be so amazing to be free of it. I want to be accepted, just as the changes in the seasons are.

Underneath this damaged shell, there is a human being just like you. Tears fall from my eyes when I cry and if you cut me, I will bleed. Last time I checked, my heart was still beating, although, I admit there are days when I wish it wasn't.

What I hate more than anything is that I am unable to work. You see, sometimes the exhaustion is just too much. My body will not do what I ask it to, and the pain can be excruciating.
It is a ripping, tearing, gnawing sensation. There are so many days when it is sharp and relentless. I want to scream out in shear frustration, because I didn't ask for this.

I wish I was strong enough to have a job, to meet people, and say "Good morning. What needs doing today?" I did for a year, but I was exhausted and in so much pain at the end of everyday. I was heartbroken, but relieved when my contract wasn’t renewed. 
I'd love a salary again and to be able to feel like I have accomplished something at the end of the day, but I know I’m not well enough.

I don't want to live on benefits, and I can't stand the look in some people's eyes when I tell them I don't work. It is a nasty mixture of pity, and evident disdain.

I want to scream that it's not my fault. I want to tell them that tomorrow I may be in so much pain and so tired that I will find it impossible to get out of bed. I would tell them that last night the pain from my various conditions was so bad that I had to throw up in a bucket, while my husband held my hair. Can they not tell from the bags around my eyes, that I rarely sleep more than three hours a night because my hips won't let me get comfortable.

Now, on top of everything else I deal with, I'm facing losing my Disability Living Allowance. The sun goes behind the cloud again, and my heart begins to beat faster. I can say goodbye to the precious little independence I have. I won't be able to afford taxis to visit friends anymore, or a mobile phone to keep me safe when I do manage to go out, and oh yes, I won't be able to keep my wheelchair in good condition either.

These things may seem like luxuries but they are not. They are essential. I am unable to manage buses alone, and my husband would have to come with me everywhere if taxis weren't an option. Bye, bye girl talk, bye, bye, independence and bye, bye any self esteem I have left.  

The pain kicks in again as I watch him make my lunch. Before I know it there are tears in my eyes. Why am I such a burden? That's how I feel...a burden. I wish more than anything I could help him more, but it's so difficult when you can't stand unaided, never mind walk.  

I'd love to be able to stand in the kitchen and cook a meal, or even make a cup of tea without pain. At the moment, at least I know I can contribute to the household bills. I smile at that. It makes me feel ‘real.  Most people hate getting bills! I've come to love it – the ones I can pay. They drop through the letter box addressed to ‘Mrs Helen Sims' – I am an adult, a wife...There is a deep pain in my heart when I think once again that my disability means I can never be a mother. He hands me a bill, understanding how important it is for me to open them. WE have a household to run...even if it's only a household of two.

Thank you for listening to me waffle! It means a lot to be heard.  I hope that one day society will change its values. They will see people, their struggles and their smiles rather than how much they earn and what car they drive.

It is soul destroying to be in a world where that counts for hardly anything at all. The truth is that I feel increasingly worthless, and I wish I could be burnt away, like clouds are on summer days.

I am not saying for one moment that I am suicidal. I am not. Compared with others, I am so lucky.

My husband and I love each other so much, and everyday he makes me feel like I am the most special person alive. He says it is a privilege to be able to hold me when I cry, and to listen to me when I am frustrated and angry with myself.
He sees the real me, a woman, and his best friend. In these uncertain times, I can only hope that people's worth will be measured in other, truer ways, and there will be more people like him. It would make our lives so much easier.

Image: Google

1 comment:

  1. beautiful letter helen you speak for many god bless..<3