Thursday 27 February 2014

Doctors Effect

Lost, is a word I could use but really this word means nothing. It only tells me the beginning: not the end. I have now reached the point where I have more answers than questions and those questions keep building up into a mountain, a mountain I can’t climb. There are no spurs on my ribs or at least so it would seem. In a way I guess that is a good thing, it means I don’t have to worry about cancer in that area…but now I am stuck in darkness, left yet again with no answers: no hope and in pain. The voices nagging at the back of my mind are telling me it’s all in my head, but I know there is something wrong; I just don’t know what. It feels as if all the air has been smashed out of me, where dose one turn when they know nothing?

To say I am scared, would be a lie…I am terrified. I don’t want to live like this. All I need is to be able to go out and leave the fear behind me. Not have to worry about my every movement. To fall asleep and know my chest will be functioning properly and able to move when I wake up (if I am lucky enough to fall asleep) I keep thinking that if there are no answers, then why should I keep fighting? It gets to the point where you become so tired of the pain, you stop feeling anything else. I am tired…of screaming into ears that refuse to listen. Unable to run, Unable to swim…my body refuses to allow me my freedom, Sometimes I wonder if I got my answers would that change anything? Would I be able to do the things I need to do? The things I want to do?

I am losing faith in myself, in the health care system and science, what is a man without faith? For that matter what is a life without aim and direction. You might choose to have faith in god, in yourself, science. I have faith in one thing and one thing only…family. For when I am in pain...they see it. When I cry…they cry with me. However when I am scared, they are desperate! So imagine what they are like when I am terrified?


To be young and to not know why you are in pain is difficult to say the least. However to be young and wake up unable to breathe and to be in a crippling pain, unable to slide a couple inches out of bed, that is when I found out the true meaning of fear, of desperation. I have asked for help and some have tried, I have asked for answers and received more questions…so I wonder what would happen if I asked for my life back? 

Remember that even though you might not get the answers you want, or you need...you could end up getting something more. For me I have added to my knowledge, I have learnt how to handle bad news. I know how to look on the bright side at the same time as seeing the bad. 

Nobody is alone

Kind Regards 
Jordan Bustard

2 comments:

  1. Ciao Jordan!!!
    I'm Valentina from Roma (Italy)!! I'm so so so happy to know you: I've never known before somebody else special like us ;)! I also have our illness (in italian it's called esostosi multipla) but now I'm 30 years old and the worst is past! I've a WONDERFULL boyfriend (I hope to get married soon! <3) and a job. Yes, somebody looks only scars and bumps, but somebody else looks behind. Sometimes contrast with guys was more painful than operation but... everything passes. I use to say that we are too much loved: God gave us too much bones because he loves us too much! I send you a big big hug! And I hold you in my mind.
    Hit it!!! I'm with you, Valentina

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  2. Jordan, I read your article on the Daily Mail this morning and I just wanted to reach out and say what an inspiration you are. I work with www.talkhealthpartnership.com to allow a platform for bloggers to publish their health related blogs and encourage disscusions which may help others. I have included the links to our blog page and if you look at 4/3/14 Rosy Hannah you will see my blog (I do not want to detract from your blog by posting my link) please contact me info@talkhealthpartnership.com if you would like to talk about publishing your blog with us - I know it would help others. Keep your head up and your heart strong. Rosy - Talkhealth

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