The Incident

Hello again.

Winter is here, as they, now, say in my favorite TV show, Game of Thrones.  It is cold and wet, and I expect to see some Whitewalkers strolling around in Sale before too long.

Alan has gone to the dentist (lucky him) and I am spending the day inside (actually, lucky me)

I thought that, today, I would share a story from my past.  Something that happened when I was a child.

first, let me explain something.  When my mother was a child, she was a champion swimmer.  She used to win every race she entered, and she almost qualified as a lifesaver.  She could have become a lifeguard if things had been different.

Just as she moved into her teenage years, she began to have trouble with her skin.  She developed a weird kind of rash all over her body.  By the time I was diagnosed with the genetic condition, Tuberous Sclerosis Complex, my mother had died, so she never knew that her skin problem had happened because she had had the condition, and then had passed it on to me through no fault of her own.

Mum stopped going to the baths, because of her skin condition.  If she had continued to go to the baths, then the incident I am going to talk about, would never have happened.

Until I was ten years old I had never set foot inside a swimming baths.  I had heard my mother’s tales of triumph, when she was young, and had always wanted to go and learn to swim.  My Dad could swim, but he was working most of the time and when he wasn’t, he was tired.  He had a very hard manual job, laying and maintaining the railway tracks, so when he got home, the last thing he wanted to do was take his daughters to learn to swim.

Then came the time when I was due to go to the baths, with the school.  I was so excited and someone in the family gave me a swimsuit.  I arrived at the baths in Altrincham, got changed and then started to walk down the steps into the water.  I don’t know how it happened, but I was suddenly UNDER the water!  I was drowning!

I really thought I was going to die.  I seemed to be under for ages and the bubbles of my breath were all around me.  Then, a hand gripped me from behind, and I was saved.

I never really got over the experience of almost drowning.  A few weeks later I was at our local shops when a torrential downpour happened.  It was one of those monsoon-like storms that we sometimes get in the Summer time, and the big drops looked, to me, like the bubbles I had seen all around me when I was drowning.  I experienced my first panic-attack.

Of course, I knew what had caused the attack.  I didn’t need a psychologist to tell me it was linked to my experience of almost drowning.  But, for a time, I was furious inside.  I blamed my mum and dad.  I felt that if Mum had not been bothered about her skin problem, and had taken me to learn to swim when I was younger, I would not have had that drowning incident.  I also felt that my Dad had let me down.  He could have taken me instead.

The thing is that, because, my first time in the baths had been with my class at school, no one had noticed me going under.  There were so many children, they couldn’t see them all at once.  If my first time had been with my mother, or father, both strong swimmers, the incident would not have happened.  If I had slipped under, they would have just pulled me back up quickly, and I would have been okay.

I did not know, at the time, that Mum had been thinking the same thing.  She wished she had taken me to learn to swim, and had  ignored the rash on her body.

Of course, I learned to put the incident in the past, but it left me with two longtime effects.  I can not go out in monsoon-like rain.  If I am outside, and caught in a sudden downpour, I have a panic-attack.  I have also, never learned to swim.

However, I did force myself to go into the water, so that I could take my son.  After he was born I swore that he would learn to swim, and I took him into the swimming baths myself.  Then, when he was five years old, I took him for lessons, and he did learn to swim, even though he hates it.  But I know that if he fell into some water, he would be okay.

I always hope my son knows that I did my best for him.

I did not continue to be angry at my parents.  I think every parent looks back and wishes they had done something different.  My parents were fine people who did their best in difficult conditions.  Neither of them were healthy.  Mum had undiagnosed Tuberous Sclerosis Complex, and Dad had a very bad stomach ulcer which affected his health badly.  They both, also developed heart problems which killed them both, in the end.

They were named, Sam, and Vera, and they were both kind, good people.  I know I will see them again someday, when I go to the place where they both are.

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