Wednesday, 28 May 2014

Why is it so many of us feel like we can judge others...yet we are the same. Why is it we look differently at a man in a wheelchair to a man who walks freely? They are the same. They both breathe, we all see, hear and feel emotions in reaction to our surroundings....So why do we not see our fellow man as just that, normal stranger passing us in the matter what stance they pass in. 

When we pass the person using the crutch, a blind man walking his dog or a woman using an electric scooter, why do we feel ashamed to stare? Is it that our minds tell us not to or do we fear insulting them if we dare? I do not see why this simple social behavior or curiosity to take a closer look or to perhaps glance over should be seen as offensive in any way shape or form. You would look at any other human being as they pass you, you would not overt your eyes to a “healthy” and “able” man; so why would you if they are disabled in a way?
When I am using my crutch for support to go get my brother from after-school club or when I am out with my friends I see the way people look at me. Is it pity or is it shame and disgust? The realization that is it in fact you who are out of place hits home. Is it right that we who are disabled should feel cut off from society and feel watched by creeping eyes as we walk the few steps from the car to the shop? On the inside we are the same. We have a heart, a soul… we experience the same things as anyone else; we simply have to reach further to achieve it. I often wonder what goes through somebody’s head when they see me; walking in crutches. I do this by relating back to how I see someone in a wheelchair. I often ask myself, how do they feel? Will they go round me? Should I say hi? Or thank you? What happened to them?
Once they pass I take a deep breath and let out my relief that I escaped that somewhat awkward situation and the feeling of not knowing. However the thing is I react the same way to whoever I am passing on the street, no matter what their situation or how they dress, who they are and what they do. I am always left not knowing how to react to their approach.
A disabled man still feels the earth beneath his feet. He was born like everyone else. He will live his life just like you, and he will die and be remembered for being a man. He will not be remembered as disabled or a mistake as I so often hear people refer to others who have a condition. In my mind everyone is equal and human, nobody is weak. Nor is anyone less worthy of your eye contact or a polite smile.
In school I remember the strange look on the faces of students, their confusion on how someone so young can have crutches for reasons other than unnecessary accidents in football. I am told people know I have “messed up legs” at the time this wording was somewhat amusing and reassuring. I knew that the lack of their comments meant they didn't see a difference. However when I went to school in a crutch, the younger ones often didn't care that I needed it for support and took so little notice in my ailment I would go into walls and often get elbowed or slide the stick along.
So when does acceptance become arrogance?
Teenagers should feel free to be who they are, and at Peebles high I felt like I was accepted, yet I hated taking my crutch into school knowing what to expect. My point is that people are the same but in some cases their difference should be taken into account. You would not push a strong man into a wall, why a disabled one? I for one am not as fragile as I look, but I do like respect.
I am a 16 year old teenage girl, as if it were not bad enough…I am disabled. However I refuse to believe that we can’t all accept and respect each other as equals, after all a man is a man. A human is a human. Yes we all live a different life, and there is no one person that is the same, but we all come from the same place, we all love, and hate. So the next time you pass a stranger disabled or not remember they are just like you…they are alive.

In conclusion why do we fear the confusion of disability? 

Your friend 

Sunday, 18 May 2014

Another Weekend

The last two evenings I have had to be taken in to A&E due to my chest pain and my ability to breathe being reduced as a result. As I stood there the first time try to expand me chest I was scared. Not just of the pain, but of what might have happened if it had not stopped. My friend had to hold my arms up to shoulder is meant to stretch out my chest. My sister didn't really know what to do or what to say. However none of that was as bad as last night. I was sitting with my mum and dad in the living-room, just sitting...then out of the blue a sharp pain stretches down the front of my chest and out at both sides. My mum was crying, my dad was scared and holding me up as best he could. Thankfully my sister took my little brother to his room so he didn't have to see me is so much pain. I can only imagine how little he must know of it and how bad it is for him to witness.  
I am 16 years old, and last night I was blue, pink and confused. It wasn't until that ambulance came that they gave my something to block out the large amount of pain that I caught my breathe. However a few minutes once I came of it the pain would return, and so it was another trip into hospital.

They did not do tests, or scans, they simply left me waiting until my turn came on the list. When the doctor finally came he simply said to get more painkillers, and sent me of home yet again in pain.

I wonder what about of pain do they see? what level of screams do they hear? Or is it that they see and hear me, but they just don't know? 

Tuesday, 6 May 2014

Another Wall. 

Another appointment today, another disappointment. I reached the point today where I have run out of questions to ask, and answers to give.

Are you okay?
How do you feel about what was said?

Am I okay? so few words with so many possible answers. This morning I woke up thinking; "Today is the day I find my answers". When in fact it was another dead end, when they told me I would be on painkillers the rest of my life. I did not laugh when they told me to "distract myself from the pain", like I would normally. Instead I felt nothing, I just couldn't be bothered anymore and with that I just sat a listened to the words and points being made on both the doctors side and my parents side. In one ear and out the other. All I could think was, What now?

So people ask me if I am okay? the answer is plain...I don't know. I have no more hope left in me to say " I will find an answer" As for how I feel. Tired.

I can't help but ask what I did to deserve this, was it not praying, was it turning my back on those who hurt me. Could it have been something In a "past life". I don't know. I have come to feel like I am being punished for being me. I do not think god favors anyone, but for those that do, it is not me.

I keep telling myself not to give up. My parents say over and over again "we will fix this", but it is hard to fix something that you don't even know. How can I say its gonna be okay, when I do not know what I am fighting.

Once again I am terrified. Not of me. Not of the past. Not of the future, But now.

I have but one question, what makes you fear this moment?

Kind Regards

Your Friend

Sunday, 4 May 2014

Sooner or later

There was a time I was like every other teen, I went out, had fun, danced, played sport and so on. Last night I went out and danced for a few hours....I had fun laughing with friends, Sang along to pointless tunes and Laughed some more. As the night progressed Instead of getting more and more restless; I became less and less active. Going to bed at 2 am and waking up just before 12 pm like every other teen. Yet I managed to slide slowly and painfully out of bed and make my way into the sitting room just before 1/2 past 12. This is agonising punishment for the previous evening. 

I miss the time when I could dance till my feet bled. I long for the days where I would stay up past 5 am and be fine in the morning. I don't run anymore; I don't swim. I simply sit and read. I simply sit and write. Sometimes I wonder if I will ever be able to do the things I love again. I wonder each day if i will be able to wake up in the morning after a short walk and feel like a young 16 year old girl and not over 72.

People say pain is pain, its not that bad. I say yes it is pain but it is the very thing that drains a man. It make you tired, it slowly makes you wonder why? And when all the whys have been answered you begin to cry, because all you want is to live a life without it.
I do not want to live my life on painkillers, and as we get closer and closer to a dead end that becomes more and more likely a solution. I will not live my life feeling distant from the rest of society, I will not spent my youth full of painkillers that send my mind on its own journey while leaving my body behind. If it comes down to it, I would rather live with the long term pain than spend my life barely knowing what is going on around me. 

I know that is is daft to think I could, but I believe that I should. Just because I have HME doesn't mean I should live half a life. I want to play Hockey, I would love learn how to ride a dirt-bike. I need to be able to walk my dog and play with my brother at the park. I hope to stay up all night at a party and not have to take a single painkiller; so i can enjoy the full company of my friends. 

Will that day ever come? I hope so. 

What does your condition prevent you from doing? ask yourself...can it be changed? 

Kind regards Your Friend