Evidence

Okay, Today I have been thinking a lot about pain? and what it is? I mean, I see two different pain teams and not one of them has helped me. In fact they both say different things...so I guess the problem is nobody really knows what pains is, and if that is in fact the case then should I really be surprised that they can't help me? Normally they would give the patient painkillers or advice; for what ever their problem or condition is. However they do not know what is wrong with me at this time. They do not know why my chest burns or why the pain is so strong, therefore the do not know how to treat it or me.... I was not surprised when they told me they were at a loss, I think I went in expecting it, I was not happy, I was not sad....I felt nothing. I simply sat a listened as my parents spoke, and the doctor answered their questions. 

They said things like ...
What if I were home alone? 
What if she were down stairs at night? 
What if she stopped breathing? 
What if we turn our backs? 

All the questions they asked that day were the very questions I often ask myself at night or when I have the time to think. However the doctor doesn't really trust my families fears, because he (or they) do not know the pain or the fear, he has not seen my mothers tears, or my dad sitting blank at night. I do, I have. I even see others cry for me, others who should not have to cry tears, not for me. I have seen my brother sit in fear because he is to young to understand. I have heard my family speak at night, how scared they are. So when the doctors act like I am just another teenager, trying to get some drugs or attention. When in fact I am one who tries not to take my painkillers, and do not enjoy being left in my bed for the majority of the day, I don't enjoy pain, nor do I enjoy the lack of concentration that follows with my cocktail of proscriptions.

So I ask you...how many nights, how many days or hours do you spend worrying about a friend, or family member, or maybe even yourself? And how much of that do others truly notice or believe?

I know that people don't think I am ill unless they have seen it first hand,  I wonder however, how many are in the situation where they have pain, but no evidence? How many suffer in silence? Remember nobody is alone in the fight...

Kind Regards
Your friend
Jordan

Future Past.

Today I have been thinking a lot about what it was like at the age of 13 and 14, how I felt, How it was. How others saw me...and I am surprised looking back at where I once was...in comparison to where I am now. Yes I have not aged much, after all there is no jump from 14 to 16 yet I feel like I have learnt a great deal. I know how people and places can change their whole view of you on the one, small but complicated fact of a disability, condition or illness. I remember I felt angry all the time, because I felt so alone, even empty. I though for some reason I could and should punish myself for my own weakness. 

Now however I see that my HME is not my weakness, but in fact my strength. So few really know where they get their strength from, some say love, others say strength is only physical. I say strength is that one thing at the end of the day that will get you through tomorrow. I know when I wake up I will be in pain, just as I feel it when I lay down to bed each evening. However HME has given me in site into who I am and is the very thing that makes that changing of age each year worth it...because each year I get closer and closer to being treated like an adult, and not a child...which is something I don't feel I was for long. 

Try to think of that one thing that has changed you, that has made you who you are today. Who were you 3 years ago? what were your feelings, dreams? but overall who do you want to become? 

Remember nobody is alone in the fight. A very nice young woman told me today "we have to stick together" I could not agree more...what about you? 

Kind Regards 

Jordan 

Party Crash 

I was at a party the other night and Like any other teenager my age I was having fun, laughing and drinking a little Guinness ....I got to see old friends, some I hadn't seen in months others a few weeks. Then out of the blew the pain in my chest kicked in and refused to let me expand it more that a inch or two. So I sat there, Jack holding my head up and keeping me straight to allow as much oxygen in as possible, and Paul who sat with me, reassuring me everything was gonna be okay, that I was gonna be fine. In an "episode" as I have come to call it, things get fuzzy and all I can feel is the pain, and I can only see what is in front of me. That night it was Paul, Jack and Declan holding my hand, stroking my face and telling me they were there to help. 

It is funny how in these times you find out what a person really wants. Who they are to you. If they really want to help or if they are there to watch?  I asked Paul why he was helping me? why he was being so nice... the answer....because he cares, because he likes to help others. I asked the same of Declan and yet again the answer was because he cares. As for Jack he helps because he knows me, he loves me. 

It is strange to think that I am now in a place were my friends help because they care and not to get something in return. They do not use it against me. In fact they simply say, so long as I am okay.

I admit this is a strange situation to be in. Normally people ask me to repay them, they ask for a favour or demand something in return. But My new friends simply want me to get better. Upon the hundredth time I asked why they were helping, I finally took in the fact that they were simply nice people, that they really are my friends.

This thought, or feeling, what ever it is...made me feel happy, and so I cried even more...before I didn't think for a moment they were doing it for me. I told jack that nobody ever does anything for free. 

Now I will say to you I was WRONG. Family and Friends will do anything if they care. I am grateful to everyone who has helped me when I didn't have the ability to help myself. I am blessed that they are kind enough to not ask for anything in its place. Few know how rare it is, Few know how sad it is when you are put in a place of vulnerability. But my friends know how to help me. However they will never know how happy I am that they help, and they care. Because for the first time in my life I have more than 2 people (outside the house) who will be there to support me, and it feels amazing. It is something I never thought I would have.

So in conclusion, if I can find people like this, who are simply kind because they care. Then so can anyone, It just takes time.

Kind Regards 

Your Friend 
Jordy

P.s 

Thanx to all My friends who have helped me, or even smiled and taken the time to ask about things they don't understand. 

Short Term Loneliness 

What gives one the right to say, they are lonely? Is it sitting in a corner on your own for the majority of the day. Could it be silence in a room full of people, lack of communication with others? No. That is all to do with fear of being rejected.

Being lonely, is having to suffer alone. It is the knowing of yourself and the knowing that others can't help. 

Sadly no matter who sees, no matter who you are, or what you do...at some point you will feel so lonely it frightens you. The important thing to remember is eventually someone will hear you cry or hit on a wall for help. It is in this you must have faith. 

I know how hard it can be to depend on others after a lifetime of friends letting you down in a time of need. I know how difficult it can be to show you are in pain at risk of looking weak. Showing them exactly how they can hurt you. 

I can still get these thoughts and more running through my head from time to time. Every time I have an "episode" or use a crutch I fear that someone will kick it from under me, purely because its happened before. I doubt that fear will ever change. After all if you get stung by a bee at the age of 5 you wont try and catch another bee at the age of 16? because you know it will hurt. I have gotten used to a small handful of people seeing me cry, or scream when moving. I have gotten used to the look of fear or pity of their own face. Only now with those people I don't see it as an insult or think they will use it against me on a letter date. I see it as them caring.

Often after nobody is around I sit and I cry because that feeling of anyone other than my family caring is still so strange. Sometimes even the most unexpected people, who others give the wrong idea about ;can be there to support me and in that I admit I was wrong and let my own view be influenced by someone's warning. This has happened only twice. And I like to think I gained a friend I can ask support from and maybe made a base for another. 

My point is, friends can come along at anytime. So even though you feel like nobody cares or you are alone in a dark place. You are not and never really could be. I know now that my friends are more part of my family than anything else. That kind of trust, and faith is worth waiting for. I waited years, and was rejected by so many but If I hadn't been; then I wouldn't have such an amazing life cause of my extra family.

So have faith if you are right now in the place of darkness, and crying in your bed at home or asking your mum or dad why nobody likes you. Because I promise, one day all the pain and all the tears will amount to so much more than a friend. It will take a lifetime of hate and turn it into acceptance and your tears will represent your happiness instead of your loneliness.  

Just wait and see. 

Your Friend 

Jordy

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 street....no 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 
Jordan

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 height...it 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? 

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
Jordan