Saturday, June 23, 2007

Catching you all up again

Its been awhile again. I wanted to write and catch you up on the goings on in my world. I have been for several AFO appointments but I still don’t have them. The people who make the AFOS tried a different design and it just didn’t work and was not practical because I can’t wear shoes with them. After much playing around with foot angles I was able to stand straight in them though. The plan for now is for me to wear these while at physical therapy and get another one for my right foot to wear all the time. Logic tells me that for balance I will need them on both feet but I don’t know anything and am apparently not worth listening to.

I have also had an MRI and in a few weeks will have my first visit with a neurologist. The MRI went well and I was able to do it without sedation despite many people telling me I wouldn’t be able to because of the Cerebral Palsy.

Not really much else going on heath/cp wise. Same old spasms and crappiness feeling but I’ll do what I do best pick up the fragmented pieces of my life and move on. More later…

Sunday, June 3, 2007

I'm me

I’m me

I am a butterfly,

I am a bee,

I’m a dragon,

I’m me

I’m twisted,

I’m tortured,

I’m trapped yet I’m strong,

I’m me.

I’m a human being,

With thoughts and feelings too,

I cry & laugh just like you,

Because I am me.

Thirsty Merc concert

Last night I went to see Thirsty Merc (one of my favourite Aussie bands) in concert. The crowd were like crowds at most places and inconsiderate of the fact that I couldn't see a thing when they stand in front of me. Some even lent on me and my chair and one girl tried to sit on my lap. needless to say I wasn't going to enjoy the show much when all this was going on. To make a long story short the manager of the venue arranged for me to watch the show up on the stage so I had the best view in the whole place! It added extra excitement to the night and was a real victory in terms of disability access.

Friday, June 1, 2007

People that impact on my life

There are many people who have impacted upon my life and shaped the person who I am today. There are the usual suspects like parents, grandparents, brother, aunties, uncles, friends and teachers. But for me there are also the doctors and nurses and therapists without some of whom I wouldn’t be alive today and without the rest I wouldn’t be as capable as I am today. So it was hard for me to decide who to write this exercise on.

Eventually I decided to write about my Nana Dot (great grandmother) because she is the first person I remember who thought I was special because I’m Karen, not because I was the little girl with CP. She accepted me for who I was and who I wanted to be and didn’t try to “improve” me with therapies etc.

So dear readers, who impacted on your life?

Thursday, May 31, 2007

Quotes that inspire me

For everything you have missed, you have gained something else, and for everything you gain, you lose something else.
Ralph Waldo Emerson

Nobody can bring you peace but yourself.
Ralph Waldo Emerson

Don't be afraid to go after what you want to do, and what you want to be.
But don't be afraid to be willing to pay the price."
Lane Frost

These quotes have me thinking today. What is the price of the inner peace I crave? Will I ever find it? On day but until then I must remember that Life is short, break the rules, forgive quickly, kiss slowly, love truly, laugh uncontrollably, and never regret anything that made you smile (from an email).

Wednesday, May 30, 2007

An article I'm working on

The bus stops and the girl climbs on board. The girl doesn’t mind having to stand near the open window. She feels as if she might melt. Children cry as their ice-creams form a sticky puddle on their laps. An old man reads the newspaper. The women on the bus gossip about Bill and Monica. As time passes the other passengers loose interest in their conversations and begin to look around them. They all stare at the girl. Some smile. Some sneer. Others just continue to stare.

The journey continues. Passengers get off the bus. Passengers get on. It doesn’t matter. They all stare. Some even whisper to their friends. Still the girl stands silently. At times the comments get so loud and so rude that the girl wishes she could go and punch the people in the mouth. But she knows she can’t. She must be silent. Invisible. It makes her blood boil faster than lava, but she is helpless.

At the next stop the people that climb on the bus are friendly and start a conversation with the girl.

‘Hot today isn’t it?’

‘Yeah’ says the girl.

It has been too long for this. There are too many forgotten years. The girl just smiles at the people until the bus begins to slow. As the girl gets off the bus she overhears a conversation between two children.

‘That lady standing by the window looked funny’

‘I’m glad we ignored her, she scared me.’

That’s the story of my life thinks the girl as she walks away in her walking frame.

The girl in the story has Cerebral Palsy. Cerebral Palsy is a disorder of muscle control which results from some damage to part of the brain. It can affect people in many different ways, which can be both mental and physical or either mental or physical. For example, in my case my legs and my right arm are affected by the Cerebral Palsy but I am lucky and have not been affected mentally by the Cerebral Palsy. Others are not so lucky. They may be so severely affected by the Cerebral Palsy that they are unable to go to school or care for themselves in any way.

It doesn’t really matter how a person with Cerebral Palsy is affected by the disorder most people are treated by society in much the same way. (Having said this, however I do not mean that all people treat people with Cerebral Palsy this way.) Some people seem to think that a person with any kind of disability has a mental disability. This is a common assumption with Cerebral Palsy because more than half of the world’s Cerebral Palsy sufferers are affected mentally by the disorder.

However there are many organisations (such as Interchange and Yorralla) in Australia that can help sufferers of Cerebral palsy (or any other disability) to gain independence. These organisations can help people with many skills including personal care, shopping, and meal preparation and can also provide personal assistants who can help a disabled person to gain an education. The services these organisations provide are vital to the life of a disabled person because they enable the disabled person to have a “normal” life and attend school or work and also be involved in the community. To be considered “normal” by today’s society means to be accepted by today’s society. Acceptance is what we all crave and these organisation’s help a disabled person to gain some acceptance but there is a long way to go before total acceptance of a disabled person is achieved. This is illustrated by the reaction of the passengers on the bus when they realised the girl standing near the window was disabled. Not many of the passengers on the bus would talk to the girl who was standing by the window in her walking frame. The only people who would talk to the girl came on the bus towards the end of the journey and then had difficulty making conversation with the girl. If the girl was not disabled the passengers on the bus may not have had any trouble making conversation with the girl. The girl also had trouble making conversation with the other passengers on the bus. The fact that the narrator of the story suggests that “it has been too long for this. There are too many forgotten years.” Suggests that like many other disabled people the girl is so used to being treated badly that she does not know how to react when people are nice to her. These kinds of problems can make disabled people feel even more alienated from the rest of the world. The best way to overcome this problem is to educate the ‘normal’ people of the world in order to try and make them understand that disabled people are just people who may take a little longer than a ‘normal’ person to achieve some of their goals. If we can do this then maybe the ‘normal’ people will be more accepting of the disabled and then we can all live in harmony.

I would like to remind all the ‘normal’ people out there that it’s not what’s on the outside that counts but what’s on the inside. So as a final reminder from my pearls of wisdom as some great literary person said ‘don’t judge a book by its cover.’


Monday, May 28, 2007

Catching you all up

Thanks for the supportive messages yesterday. I have been reading a lot of blogs of people with CP lately. Mostly, they are blogs of kid with CP that have been written by their parents. But I find that it is interesting to read a parents perspective of some of the stuff I am going though or have been through. Totally different perspectives but useful all the same.

A lot has been going on with me since I last posted on here (aside from yesterday I mean) and not all of it has been good. As you all probably have guessed by yesterdays post my emotional state has been a bit questionable lately. I have days like yesterday and then I have days where I seem okay. I think it is all connected to my physical state which is ever changing. I’m still a medical mystery for the doctors and now they are trying to blame the swelling etc on the CP. The problem with this is what to do about it? I don’t see how it can be the CP because CP isn’t supposed to change but I’m not a doctor so my opinion doesn’t seem to matter.

On a positive note I have been walking in my brand new walking rails a little bit in the last few days. Now if only it would stop raining for long enough for me to do it today. I can’t do it when it is yucky outside because the rails have to live outside and don’t fit in our house. I need my own place just for all my equipment.

I am getting AFOS to help hold my feet straight and 3 point splints to help straighten my knees next week. The AFOS are a lovely (NOT) camouflage print because it was the best of a really really bad lot I had to pick from. There were a ton of prints that would be fine if I were about 5 years old but…

Anyway you are pretty much caught up with the main events in my life since I last wrote. I will write again tomorrow.

Love you all,

Karen