My Complex Life

Hi there.

My name is Mari.  I am an ordinary housewife.  I am 62 years old.  I am married to Alan who is also 62 at the moment.  He will be 63 in November.  Since I was born in August, 9 months before him, I always joke that he was going in, as I was coming out.

I have started my blog for two reasons.  First, I love to write.  A few months ago I joined a writing group in Sale, which has fired up my interest in writing again  Sale is where I’m from.  It’s a town in Greater Manchester (that’s just in case I get nationwide readership) ha ha.  Anyway, I’ve lived in Sale since I was married, 35 years ago, but I briefly lived in Sale when I was very young.  After that, my family moved to Timperley and we lived on a council estate called, The Broomwood.  I have stories about my past which I would love to share, and will do so, on here.

Here is my second reason for my blog.  I wish to raise awareness of two rare medical conditions, which I have, and I will share with you about them, how I cope with them.  The first is the umbrella condition, for want of a better word.  It’s basically, what causes everything else that’s wrong with me (including the second condition) and the umbrella condition is called Tuberous Sclerosis Complex.  It’s a syndrome, and it is also known as Epiloia. It causes calcified tumors to form in various organs.  Mine are in my brain and central nervous system.  Until I was 45, I never knew what was wrong with me, but a brain scan gave me the answer in my middle-age.  I lived all my life before the age of 45, not knowing what was causing my problems.  There was misdiagnosis, there were people who thought I was “putting it on”.  If there is anything like that, that any of you have had to put up with, before you got your correct diagnosis, I understand and I’ve lived with it.  You can share with me and talk about it.  I’ve been there.

The second rare condition is Prosopagnosia.  It’s the inability to recognize faces.  this is not the usual thing of going up to the wrong person in the street.  Everyone does that sometimes.  Prosopagnosia is saying hello to your neighbour, when you see them in their own garden, and then, half an hour later, walking past them in the street, because you can’t recognize them when they are not where you expect them to be.

Any prosopagnosiac will recognize this story.  When my son started nursery school I was terrified of going to pick him up.  I told my mum why.  The truth is, I was terrified I would not recognize him if he was playing with a group of other brown-haired children.  I had brought him up and he was 18 months old.  I had played with him, changed his nappy and I was his mother, yet I feared I wouldn’t recognize him.

Yet my mother understood.  She was used to my condition.  She calmly told me to remember what clothes I had put him into, that day, then just look out for the clothes.  So that’s what I did.

I cannot retain the memory of a face.  It doesn’t get filed away in the memory centre of my brain.  There is another kind of Prosopagnosia which can come on after someone has a stroke, or other sudden brain trauma.  That type of Prosopagnosia means that every face looks blank and that’s why they can’t tell people apart.  That’s not the kind I have.  With my type of the condition, it’s to do with my memory not working right.  I can tell people apart if they are right there, and I can see them all at once, but once they go out of my sight, I loose the memory, so I’ll see someone again, and not know them.  Every time I see a face, I’m seeing it for the first time.

I’ll share more, and talk a bit about coping strategies, next time I post.  I’ll also tell a story from my past

I hope you have enjoyed reading this post and that you will come back and read any subsequent posts.  Please feel free to leave a comment.

By for now.  Love from Mari

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3 thoughts on “My Complex Life

  1. Dear Mari,

    I really enjoyed your first post, and I look forward to reading more. I loved hearing all your stories on the writing course. Good luck and happy writing.

    Melissa x

    Like

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