Beast or Beauty? 

Today I went into school and was told by a friend I am beautiful and should see myself as such. Do I look in the mirror? Not if I can help it. I refuse to see myself as beautiful. After so many years of being told I am ugly or disgusting and fellow students gagging at me; I simply can't see past the words.

Why is it that people feel such a strong need to look good? Or maintain appearance?

I have never felt like I needed to look my best for school, I rarely put my hair up all fancy and use makeup to hide behind. Yet like everyone else I am never happy with just being me, with no make-up, no slim fit top or skinny jeans to try and keep the idea of being thin in my mind.

Why is it when a young girl sees a curve and goes straight to thinking they are FAT? I myself am guilty of this. I know I am not, yet all I see in the mirror is a huge mass. I find that it is exhausting trying to fit into the image the media and society has molded for me.

Thin, Athletic and in proportion.... (Picture a slim model on the front of a magazine) I am nothing like this. Not even the slim model is like that, yet we all try to achieve that so called perfection. Is it true that people who have been bullied are more likely to feel this need to match society demands? I have no idea. I don't ask others how they see themselves.

When I look at myself I am brought straight to my scars, I see them even when others cannot. Then my eyes move to my stomach and how it bulges out of proportion with my hips, dose that make me fat? or blind to what is really there? And so I enter into a time of starving myself as punishment for being me yet again. Then all at once the lumps and bumps come into view and I see just how odd and strange my joints are, how far my legs extend and how swollen my hips are from the constant pain and irritation.

I often tell people they are meant to be the way they are, they are beautiful and should not let people tell them otherwise. I know others also give this same advice, a mum or sister perhaps?  But have you ever stopped to notice that they do not take their own advice?

I am aware of my scars from my HME, and my weight, and everything else I have ever been made to feel is wrong. I know it is daft to dwell of the past yet I do so anyway. Harsh words stay, and often last longer than the knowing of the source. So my point is this, if you do not want to hurt another for the rest of their life then do not tell them they have flaws or should work on something. Instead tell them the good things and maybe one day we will see a day were people can feel good about being the way they were born. One day we shall see the plus size models on every cat walk, we will see someone with crutches smile at a compliment, or a person in a wheel chair think, "I am just as good as a man who can walk" because that's how it ought to be. We talk of equality, now it is time to bring it to life.

I do not want to see children laughing at their elders who have a limp; I do not want to hear the jokes about disability or illness. I am not one to make the jokes, but I hear them almost every day. People will always find a way to criticize another. Have you ever thought of how many jokes are being made of something as simple as having ginger hair? I have. Basically if people are not laughing at one thing they will find another.

I often find myself thinking why society has developed this need to discriminate, and judge? There is nothing good to come from it. Nothing to be gained but a short 2 minutes of laughter, then the person realizes they are in the wrong, and begins to regret what they said.

So you see, it does not matter if you have a condition, or a disability...if someone is going to bring you down then they will find the smallest thing, even if they too are the same. The important thing is, not to let the harsh words or hateful faces sink in and penetrate the way you see yourself. A condition is not you. An illness is not the end. A disability is a wall, not a cage. Learn to love yourself and others will soon know they can love you too.

I have to say, around my friends my scars don't matter. I can wear shorts...without thick black tights. I can wear short sleeves and loose tops because I don't care how they see me. I don't need to hide; I can relax because they don't see imperfection. They see me.

Ask yourself, who sees you...for you?

 

Your Friend

Jordan

Well this week I have had two appointments, one for my breathing and chest. Another for my hips. However I am doubtful that anything will happen. I have been to so many people, heard so many things and yet I keep going, knowing that 9 times out of 10 I will get the wrong answer, if I am to get an answer at all. This week I was hit with a blast from the past, I almost lost something, someone, that is very close to me because of the immense pressure my condition puts on the people I love and care for. I have lived my life in fear of people leaving me, of running away when times get tough. I do not blame them. I do not get angry. I have come to expect it. After all It is not my place, let alone within my rights to ask them to stay, and watch me battle from day to day.

Once every so often, I meet someone who see's me. Who knows my smile is fake, but who stays to support me anyway. Those are the people I love, They are the friend who I will have for many years to come.

After all, at the end of the day the strongest people, are the ones who stay to fight with you. No matter how high the wall. Some go and come back, because there mind plays tricks, some go but never return. It is those people that I never see again, I have learnt to pity; for their pain. Yet at the same time I envy them, because they have the power to go, to get away.

So no matter if who stays, or who goes...each person gives us something. Hope, that the condition is not the end of our story. It is just the plot-twist in the middle.

Remember no one is alone in the fight, someone will always listen to your story.

Kind Regards

Your Friend

Jordy

The Funny Things...

Have you ever sat back one day and just ran through all the other things, bad or good, and watched them skip around the inside of your mind. I seem to be doing that a lot lately. Sometimes all the thoughts are moving so fast I can never seem to find the focus to catch any single one. Then out of the blue one thought, one image,one idea: catches my attention, on those days I am not myself. I am sad.

Have you ever found yourself overwhelmed by sadness to the point you cant focus on anything, that it becomes your only thought. At this point you can do a few things...

1. You can keep the sadness inside...(BAD IDEA)
2. You can fix the problems one,by one... (If they are fixable)
3. You can do something to distract your self; dose not work long term...
4. Talk to your Friends... (WORKS)

Personally, I do all 4, it may not be the best thing to do, but for me it help. After all as you grow up, you develop thing to help take away pain, deal with anger or frustration. Battle disappointment and bad news ect... For me it is punishing myself, sometime even now, because that's what I did before. Lately though I have been crying, sometimes I don't even know the reason for my tear but more of the time I do. I do not punish myself as often though, I do not starve myself as much, I do not sleep the pain away...now I find a friend or sit up with a good book in my hand, or a bunch of paints at my side.

It is in finding these ways of coping with our sadness, our anger...that seems to sit next to having a condition, illness or disability that we travel through life. However I feel strongly that it it this sadness, this pain or anger that makes us all stronger...and ready for life. All we need is to find away to deal with all the thoughts or ideas one at a time, but never all at once.

Remember you are never alone in the fight, feel free to post your own story on the main page and I will listen.

Kind Regards

Your Friend

Jordan

A lesson

If there is one thing I have learnt this week is things do get worse, but they can also get better. Sometimes I find myself in so much pain I no longer have the energy to cry, or walk to get my painkillers. Yet on those days all someone needs to do is ask, three simple words..."Are you okay?" I find more often than not than I lie and say "I'm fine" or "Great", but on that odd day I choose to tell the truth, and that person really dose stand in front of me, or sit next to me, and listen to my feelings. It isn't until I am finished they make a single, yet simple gesture of a hug.

I don't know what is it about a hug, but from the right person it can take away all the pain. It can fill that empty whole that has been stuck in your chest for days. It is this action of trust, love and respect that takes away even your greatest fear. The feelings you just shared seem to disappear with every breathe you take in and everyone you let out.

My point is, that even when things are at their darkest, take a moment to breathe, and remember your friends, your family and tell yourself you will smile again tomorrow. If it is someone you love or care for that is in pain or feeling low, don't ignore them, don't crowd them just wait and ask them how they are. If they tell you then listen and that in its self helps more than many will know.

Remember you are never alone in the fight, there is always someone who will listen. Feel free to share your story on the main page, and I will listen.

Kind Regards

Your Friend

Jordan

Friendship

In this world, In today's society the true meaning of friendship has been lost due to the introduction of social media, and the race to have more "friends" on your Facebook page than your classmates. This action of adding a name to a list, is not friendship. After all how many of you really know each person on your page to the point you can trust them. Friendship means faith, loyalty and understanding of each-other, it has nothing to do with a handsome face next to a unknown name. I will admit I am guilty of not knowing some of the people on my list, of not even talking to them, they are simply names and an addition to the overall number.



However the friends I have, that have seen me at my worst and protected me when I did not have the strength to do so, they are far more than numbers, they are trusted. I am lucky to be in that rare position of loving my friends, but having fallen in love with one of my best friends. He now knows every flaw and every source of pain in my life. If I lock he knows exactly how to fix it, what to do and who to call.



To be able to chill and relax around your friends and not hide your pain is rare, but it is also a blessing. My friends have seen me cry, heard me scream while struggling to move as they help me to my feet. If they stay after such a reaction or "episode" then I know I can trust them, and put my faith in them when my body fails me.



These friends don't know how much I respect them and how much their simple actions mean to me. I doubt they ever will, but I will never stop loving them because they never ask for anything in return.

Ask yourself, who is your true friend? and what would your life be without them?

Remember you are never alone in the fight.



Kind Regards

Jordan

Normality

What is it?
Who has the right or the wisdom to know what is normal?
Who has the power over others and society to set the image for perfection?





To be normal is to be born, to grow, to live and to die. That is the basic formula of every-ones life.
But what is it that makes a person say... "you are not normal" is it that you do not live your life in the same way as them or is it that you choose to wear different clothes while living the same life, while walking the same path. I do not know.




To me there is no such thing as normal.




Everyone is their own, everyone is different and nobody is the same. Everyone has a flaw and most have not yet reached perfection...for that dose not exist either. However I do believe in beauty, that is only found in acceptance of yourself. After all you are what you are, you have what you have, you do what you do, all of this makes you who you are, that is Beauty, and acceptance is the closest thing to perfection one can get.





Your Friend

Jordan

Descendant

I have never been under the impression that having HME was going to be easy. One of these paths I often think about when sitting in an empty room, or when bored during a lecture from one of my dad’s famous, "when I was your age..." speech is; children, marriage, and all the what if's? any other teenage girl thinks about in their spare time, for that matter any teenager thinks about.

In my case the "complications" are endless, negative outweighs the positive. For starters if I were to decide to have children then there is a 50/50 chance he or she could also suffer from HME. I have read about plans to breed it out of the genetic sequence. How you might ask? Essentially pre-picking your child, but where is the fun in that? I have seen how hard it is on a parent to watch their child grow up with this condition. On the other hand I know how difficult it is on the sufferer at a young age (if not through life) to be able to get to where I am and understand the reasons for peoples harsh words, and degrading expression’s. All this has brought me to come to the same conclusion more often than not that I simply don’t have a heart strong enough to take that kind of pain. Yet I still dream of a day were it will be, where I will be.

Moving on to the next “complication” as so many have had the guts to tell me. Due to the spurs on my hips (bones) there is a chance I could kill any child at birth. I often imagine the pain the child would go through, that small chance of the cruelty and suffering I could cause something so small. To say it upsets me would be to lie to you, as well as lying to myself: for you see it kills me.

Then there is the least painful of all the least emotional, and traumatising. I could die. It sounds so simple, so meaningless to me any way. For me family is everything, and most certainly worth me dying for. My VWD would mean blood, and a lot of it. My own mother almost bled to death bringing me into existence, but she did it anyway, knowing the risks.

Any partner I have will NEED to accept these “complications” for they are a part of my conditions, of me. If he does not then it wasn’t meant to be. I do want a child of my own (with all my heart) but the cost….the pain….and the risk, I fear might be too much for one soul to handle.

I would say that if your condition affects your future, if its kids or an experience, then there is only one question to ask….

How much do you really want it? How much do you need it?

This question might never stop haunting my thoughts, or lingering in the shadows of my mind. Then again it could be something that I need to keep me going.

Remember you are not alone in the fight; there are always friends close, even if you do not see them…

Your Friend

Jordan