Saturday, 14 May 2016

Second Thoughts

I was sitting with my mum and dad the other night, just having some wine and we got to talking...As you know I have HME, VWD, NEAD and a few other things. You also know that I think often about kids. what if I had my own? 

We were talking about what would happen If I ever do have a child, what would I want my partner to do? who would I want to live? 

The thing is I do have to ask these questions. My partner needs to come to terms with them. My own father almost lost both my mother and me, when I was born. He almost made that choice. So baby or me? Every time, the mother should choose the baby. Or at least that is what I would do. If my partner chose me over the baby, if he chose to save me, then he would be wrong. For if that ever happens he would not be saving a partner, or a wife, he would be loosing us both. 

I know I could never live with that, and I could never be with someone who doesn't feel the same way. In light of that I am 18 and thinking about making a 'living will....' I am 18 and planning what I want to happen when I die. Though after the last couple of years and almost dying to soon more than once in that time, I have to say I should have though about it sooner. 

Would I be happy if I were to die? I would, even if I were to die tomorrow. That is my reality. I would be happy because I have done a lot with my life. I had someone email me the other day and tell me how they would be happy if their daughter was like me. I sat and cried at that email. This woman felt guilt because her child had HME, and I helped her come to terms with it, just a little bit. I think that it is all anyone can ask really. 

To me a baby, and child? HME or not, is worth the risk.
Think about how lucky you are, and think about how beautiful life is, HME and all...

Your Friend 

Wednesday, 16 March 2016


Today I was sat with my fellow students and we were talking about suicide jokes. How much it upset them that someone would use it as a subject in their punch lines. How it is not a matter to laugh about, its a serious thing. Now I 100% agree with this, self harm,depression or suicide is not a laughing matter. However I got to thinking why are these people hurt by this, yet they make disabled, "retard"and "spaz" jokes every single day- to my upset. 

I made the mistake of saying this very thing. They simply said, "its only a joke, we don't mean it". I am sure that is what the people think about their suicide jokes, yet you take offence. I sit in class, in society and put up with your jokes, about people like me, people in pain. Yet you take insult at others doing the same thing to you? 

How is this fair, I asked what the difference was, their answer; "you would not know how it feels". I gave up my argument then and there. I was not going to win. How could I, without causing further upset. 

So now to those people who feel it is okay to joke about medical conditions of any kind, I say; "I am disabled, I am in pain, tired, and lonely 90% of the time, even when I am surrounded by people. I know what it feels like to hate yourself, I know how it feels to hit rock bottom, to be unable to see anything good in life. 

I do not see the difference between you or I, everyone in the world feels, and has been hurt by a simple joke that another has found funny at some point in their life. Why is one kind more hurtful than the other? is it because one applies to you, or someone you know? I would say that if you make you a joke and after think; "this is someones life, people have that..." or  "I hope people know I'm joking" then its not funny, it has hurt someone, and you asking yourself that question only makes it true."

Mental illness is not a joke.
Suicide is not your punch line. 
Disabled people are not there for you to imitate.
Words like "spaz", are not okay to use when describing your or others "mess-ups" or "issues". 
Self-harm, is not something to be said when you think you have a hard day ahead.

After all, somewhere, all of these things and more, are someones life. In conclusion, are your jokes really funny? think before you make them, and say sorry if you do.

Your Friend


Monday, 15 February 2016

Moving On

It has been a while since my last update, I have had a long year, with many ups and downs. To start of this is 2016, there is snow outside, and I am still alive, despite the efforts of my illness. When New Year came round I was surprised, I wasn't ill, nor was is in hospital or curled up in bed. I was happy. 

Now we are in yet another year and I am almost finished my college course, it has been educational to say the least. I have added to my skill set and now know how to code, and program and put together my own PC. This time last year I was being told I would not be able to attend University. I was cancelling all my plans to move on with my life, and past the pain of my conditions. Now, I am finally planning on moving out. I have regained some control over my illness-even if it’s only a little bit. I am getting my life back. 

University asks, why I want to study their course? Why media? Why journalism? Why production? The answer is simple, I want to help people. I love all things in the creative industries. I love words, films, news etc....because all of these things have the power to change someone’s life. They have the power to make a difference, even if it’s only to one person. This is a skill I will have one day. This is a skill the course can provide for me. 

I know the area has hundreds of applications every year, and I know I have been ill and have not got any highers, but I have experience, and a passion for the subject. In the coming week I will be attending interviews for different courses, and all I can ask them for is a chance. 

However even if I get no offers to attend a course, I will still move to Glasgow, I will still keep working on getting my chosen career, because last year, I gave up. I didn't want to but I did, and I have never been more ashamed. This year my condition is not going to get in the way of anything. I will not give up my dream.

Ask yourself, have you ever given up something and lived to regret it? Can you still do it? Would you change your mind? 

You’re Friend 

Tuesday, 21 July 2015

Brave the Shave

As most people know by now, I am largely effected by cancer in my life, with HME running in the family, and my mum having cancer, and my gran loosing her fight against it a few years back...because of this I find cancer is everywhere, it happens all the time, people are diagnosed ever minute, and only half of those effected win their battle against it. I do not think this is good enough. I am afraid most days, not for myself but my mum, who's cancer has a 50% chance of killing her. I don't want my brother to loose his mother when he is 7 or 10...a age where he may or may not remember the fun times.

Brave the Shave is to raise money to help people find a cure. The money raised is to help reach 100% survival instead of only 50% - getting a cure takes funding. So in light of this I have signed up to be a "Brave Shaver", my target is £200 pounds though I hope to raise as much as possible. Every little

If you want to share or donate go to;

Your Friend


Wednesday, 15 July 2015

Hi, This is just going to be a short up-date. I have been thinking a lot lately about beauty again, and what it seems to be and what it really is. I have for now come to the conclusion that beauty is not found in a persons weight, height, eyes or clothes- no it has nothing to do with the outer appearance. It is about the imperfections each and every one of us have, for no one is perfect. You see it is our imperfections that make us all different, So is it not these flaws that make us beautiful?

Remember you are not alone in the fight.

Your Friend


Friday, 5 June 2015

Well yesterday was my last exam, the last day of being a 6th year and the last time I will have to go to high was 6 long school years, and another 7 before it seems like such a short time wasted, I know I will not use half the things I have been taught, I know that all I will do now is through out the papers and notebooks I have stacked high on my desk and move on to college and then university.

I remember my first day of school- but I doubt I will remember the last, it dose not seem as important in a way, now it is just yesterday. I am just happy I made it this far, for a while I didn't think I would. The best thing about school for me, was going, it was changing. Primary school was cruel, high school- was when everything began to grow, people began to see. I would say I will forget about high school now, but I can't forget everything, the bad times will be there, but now in the last few years I have good times to balance it all out.

I finished high school- and I have friends. I feel normal. I can't wait till I go to college, and meet new people and new friends.

Bottom line- what was/is the best thing about your work/school ect? just think about it and maybe you will see something you didn't see before...mine is getting there.

Your Friend


Saturday, 11 April 2015

Perfectly Perfect

Tall, tanned, thin and blonde.  This is the image of beauty placed in the young girls hands. It is the image stacked high in every toy shop.  Barbie made for children to dress up, create hair styles and pick out the perfect pair of shoes to slip on her perfect tiny plastic feet.  This simple doll was introduced in 1959 and is still influencing youth today.  After all Barbie is what every little girl wants to be and is every guys guide line to the ideal girlfriend, with films like “Weird Science” bringing dolls to life.

So, how does this flawless little doll impact on women in society? On average little girls age 3-11 own at least 10 Barbie dolls, setting the idea of the 6ft tall, 110 pound ideal in their easily influenced minds. However can we blame them for accepting this perfect image? After all in our everyday lives we are shown pictures of beautiful women in glossy magazines, we walk into shops and are bombarded with make-up, face masks, fake-tan and hair products galore.  It could be said that in some way you can walk into a shop and buy a whole new you; but do all these products give us confidence or do they create dependency and turn us into life size Barbie’s?
An influential statement by Sarah Burge – a modern day Barbie lookalike (UK) sends out the wrong message to our youth, she states; “it’s okay for women to be something they are not”.  This may lead us to ask the question, is inner confidence the same as confidence in one’s appearance?   In  1965 Mattel (the makers of Barbie) introduced their slumber party doll, she came complete with bathroom scales-set to show the weight of 110 pounds- and a book telling children; “don’t eat” if you want to lose weight.  To Mattel’s surprise the sales of their Barbie doll dropped at a “shocking” rate.   As if telling children to diet wasn’t bad enough at the same time they also released a Ken slumber party doll, but instead of adding weight loss tips they sold him with milk and cookies- talk about gender discrimination in the beautiful world of Mattel.

To date there are almost 8 million people in the US suffering from some form of eating disorder and out of that only 10-15% being male.  This not only shows that women are largely affected and more inclined to diet but more importantly that men can be affected too.   In 2013 a “grand” total of 45,365 cosmetic procedures were carried out, only 9.5% were males wanting to make changes.   Sadly this is a small but significant increase from 2012 when the number of male cosmetic enhancements stood  16% lower.   A man named Fred Yeo spent near enough $20,000 this year alone to subject his body to a tummy tuck and his lower back to laser liposculpture.   I would question how long this so called happiness will last? Maybe till he finds a perceived flaw such as a wrinkle or unwanted blemish.  However it is not his fault, according to Darren Tom-age 24- the culprit isn’t Fred Yeo it is in fact society for judging one’s appearance instead of the person within.

However I have to ask, are any of these people truly happy in their fight to become flawless or do they ever think; what if I ate that buttered scone at lunch?  We are now at the point where we need to recognise that 10% of people with anorexia will die because their bodies can’t withstand the battle to become tall, thin and undernourished.  These statistics truly give a whole new meaning to the seemingly harmless metaphor, “if looks could kill”.  The changes women have to make to their body to even come close to that Barbie slim shape not only requires them to have liposuction but also the removal of two sets of ribs.  This in my opinion takes their “war” against normality to a whole new level.

Not only does the issue of body image inflict pressure on people physically it also attacks them mentally with over 5% of people with eating disorders meeting the diagnostic criteria for depression.
 This pressure to be thin is clear with 40-60% of hormonal high school girls already trading their otherwise healthy eating  behaviours,  for this dieting – starving  “craze”.  Society no longer accepts the idea of imperfections making us unique and setting us apart, but rather it is pushing for the cloning similarity of everyone looking the same.

Beauty by definition is; a combination of qualities, such as shape, colour and form that please the aesthetic senses, especially sight.  Beauty can be interpreted in many ways depending on who you are.  However should beauty be restricted to a physical definition rather than encompassing an emotional aspect?

A child as young as 8 years old named Dana (UK) refused to eat more than 175 calories a day, it was so extreme she had to be force fed through an IV and admitted to hospital for 12 weeks on a correctional program, though I don’t see a quick fix for her.   In an attempt to find the root of this needless insecurity a group of researchers specialising in psychological development exposed a number of young girls to 3 different dolls.   After the research was completed they came to a “ground-breaking” conclusion.  They stated that the young girls who viewed the Barbie doll reported lower self-esteem and a stronger need to be thin, this was shocking.    After seeing these results one might say the Barbie is a role model, encouraging the urge for weight loss and the likely hood of developing eating disorders in our youth.

Sadly the issue of reaching the weight of 110 pounds does not just plague the minds of our children but also the minds of adults between 20-30 years old.  One of their goals may be to resemble their favourite role model, the Malibu Barbie.  This has reached an extreme level where  40% of this countries’  9 year olds have dieted; indicating that their dreams are no longer restricted to games in the playground, but are swiftly becoming their unrealistic body image goals in reality.  The dieting doesn’t stop in our local primary school system but is carried on through into higher education with almost 95% of those suffering from uncontrollable eating disorders falling into the range of 12-25 years of age.  75% of the young female population not only have dieted but carry on doing so 2-5 times a year.   This means that there is an astonishing average of 4 out of 5 ten year olds who are afraid of being “fat”.   Author, Kevin Norton says that the “Barbie ideal” is an almost impossible possibility with only 100,000 people in the world who actually meet the Barbie body image; Again proving that these extreme measures taken by so many are still unlikely to achieve their “perfectly perfect” image.

After looking into this controversial topic I have come to the conclusion that, be it Barbie or Ken who inspires us to change, both play a key role in moulding  perceptions of beauty and how “perfection” is seen, not only in the eyes of women but also in the eyes of men.   So no matter if it is in achieving that slim line waist or the bleach blonde hair is Barbie something to aspire too and give to our growing children?  No, it could be said that she is a thing of the past.   After all if a doll of 11.5 inches can have such a huge impact on people of all ages then should we still be selling it? Should Barbie be accompanied by a health warning?   On the other hand society might need this bit of plastic in order to strive for something more.

Kind Regards