The Saints Of Mibba
Bravery.
“You have brought a teddy?” The nice man at the door of the British Museum asked the girl as the family went to go in.
“Yes, his name is Freddy.” The ten year old announced proudly. Then, so as she didn’t appear too young and needy she followed with, “I have just been to hospital and he was with me being brave.”
“Ah, well, we don’t allow teddies in there so do you mind if I look after him? He can stay by the door and tell you stories tonight.”
“He can be brave for you.” She said, reluctantly holding out the bear for the man to take.
That bear had been the one solid companion the week near Christmas the girl had spent in Great Ormand Street Hospital for Sick Children. She had been through a week of blood tests, scans, electrical tests (Not much better than they sound), coordination tests, sight tests... you know, you name it. So, what was the outcome? She had Friedreich’s Ataxia. Yes, they even taught her how to say it so when asked what was wrong by the celebrity Santa Keith Chegwin she could answer.
Her parents got given a leaflet at diagnosis stage to ‘help’. Here is what it said:
What is Friedreich’s ataxia?
Dr Nicolaus Friedreich was the first person to describe the symptoms of this kind of ataxia and so it has taken his name. There are many different types of ataxia, some of which are inherited. The word ataxia simply means ‘lack of co-ordination’. Friedreich’s ataxia is a progressive disorder mainly affecting the nervous system. It is often called FA (or sometimes FRDA) for short. The main problems experienced by people with FA are caused because certain nerve cells in the body become damaged and eventually die. The nerves that are mainly affected are those of the spinal cord and those that connect the spinal cord to other parts of the body, such as the arms and legs. Other cells in the body are also affected including the heart and pancreas, accounting for other symptoms associated with FA.
So, imagine being given this information at the age of ten. She didn’t understand it then, much as she doesn’t today. The information is sketchy as best and doesn’t explain what will happen. Mind you, nothing could prepare anyone for the future devastation that it would cause. So a helpful doctor added that it meant that she would not be able to do anything for herself by the age of sixteen and would be dead by aged eighteen.
What do they know?
I was the girl of ten and am now the woman aged thirty. I have a job and I live with my carers in an independent house. Yes FA does affect me and I struggle doing most things but the point is that I do them. I write now as a form of escapism because it is something that I can do. Of course, using a PC might not always be possible but I don’t think about things like that.
They call me brave but I don’t see that I have a choice in the matter. Either carry on or waste life by crying in the ‘why me’ type way. So, I carry on and grab at life much like I have always done. I look up to Steven Hawking who has MD which is like FA sped up. So, yeah, one day I’ll be like him… except hardly a science expert! But he has books, he uses a PC (somehow) and he seems happy so... hell yeah, he’s a role model!
Count my face amongst the living… I stood in some cold London alley for five hours to meet Gerard Way with some excited girls. It didn’t make me feel old at all, I don’t care what people think about me as long as I am happy. My room is full of pictures of me with stars of Buffy/Angel as I go and meet people despite the odd strange place I find myself. Goals remaining for me are Jared Leto (Could do the rest of the band at a push, LOL) and Muse.
I am not telling you my story wanting pity as that’s the last thing I want. No, just explaining to you that I write because I can. You either enjoy my stuff or you don’t and that shouldn’t change because of who I am.
Don’t like me because I am ‘brave’ because choosing life doesn’t make me brave.
“Yes, his name is Freddy.” The ten year old announced proudly. Then, so as she didn’t appear too young and needy she followed with, “I have just been to hospital and he was with me being brave.”
“Ah, well, we don’t allow teddies in there so do you mind if I look after him? He can stay by the door and tell you stories tonight.”
“He can be brave for you.” She said, reluctantly holding out the bear for the man to take.
That bear had been the one solid companion the week near Christmas the girl had spent in Great Ormand Street Hospital for Sick Children. She had been through a week of blood tests, scans, electrical tests (Not much better than they sound), coordination tests, sight tests... you know, you name it. So, what was the outcome? She had Friedreich’s Ataxia. Yes, they even taught her how to say it so when asked what was wrong by the celebrity Santa Keith Chegwin she could answer.
Her parents got given a leaflet at diagnosis stage to ‘help’. Here is what it said:
What is Friedreich’s ataxia?
Dr Nicolaus Friedreich was the first person to describe the symptoms of this kind of ataxia and so it has taken his name. There are many different types of ataxia, some of which are inherited. The word ataxia simply means ‘lack of co-ordination’. Friedreich’s ataxia is a progressive disorder mainly affecting the nervous system. It is often called FA (or sometimes FRDA) for short. The main problems experienced by people with FA are caused because certain nerve cells in the body become damaged and eventually die. The nerves that are mainly affected are those of the spinal cord and those that connect the spinal cord to other parts of the body, such as the arms and legs. Other cells in the body are also affected including the heart and pancreas, accounting for other symptoms associated with FA.
So, imagine being given this information at the age of ten. She didn’t understand it then, much as she doesn’t today. The information is sketchy as best and doesn’t explain what will happen. Mind you, nothing could prepare anyone for the future devastation that it would cause. So a helpful doctor added that it meant that she would not be able to do anything for herself by the age of sixteen and would be dead by aged eighteen.
What do they know?
I was the girl of ten and am now the woman aged thirty. I have a job and I live with my carers in an independent house. Yes FA does affect me and I struggle doing most things but the point is that I do them. I write now as a form of escapism because it is something that I can do. Of course, using a PC might not always be possible but I don’t think about things like that.
They call me brave but I don’t see that I have a choice in the matter. Either carry on or waste life by crying in the ‘why me’ type way. So, I carry on and grab at life much like I have always done. I look up to Steven Hawking who has MD which is like FA sped up. So, yeah, one day I’ll be like him… except hardly a science expert! But he has books, he uses a PC (somehow) and he seems happy so... hell yeah, he’s a role model!
Count my face amongst the living… I stood in some cold London alley for five hours to meet Gerard Way with some excited girls. It didn’t make me feel old at all, I don’t care what people think about me as long as I am happy. My room is full of pictures of me with stars of Buffy/Angel as I go and meet people despite the odd strange place I find myself. Goals remaining for me are Jared Leto (Could do the rest of the band at a push, LOL) and Muse.
I am not telling you my story wanting pity as that’s the last thing I want. No, just explaining to you that I write because I can. You either enjoy my stuff or you don’t and that shouldn’t change because of who I am.
Don’t like me because I am ‘brave’ because choosing life doesn’t make me brave.
♠ ♠ ♠
by Harmony77uk