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Ban All Mirrors

Ban all mirrors from my life

Reflections don’t show me

The violation of disease

Is all I see

People think that this is me

Pushed out from the womb

I can’t tell everyone I meet

It is not so

When I am about or just alone

My body is wired in my brain

Others view is not the same

They don’t see me only disease

Published in The Lark

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I have had a shock…

I decided to try to find out how many people have the disease I have. It is not known but less than 1:2000 000.

Thrown up in the results was a book, My Life With Dystonia by Cheri Tannenbaum. Like me she is Ashkenazi Jew. Her dystonia has made her body very stiff, immobile and unable to speak although there has been improvement, I don’t know if this was with the help of drugs. Most importantly, she never had OPEN BRAIN SURGERY.

So the atrophy on my left side might have been totally unnecessary. All the pain it causes me….

I can’t dwell on this. It does me no good. But I am shocked to my core.

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A very painful night…

I omitted to say, yesterday, that my poem was published by Poetry Bar. It was written in August.

Yesterday, a girl who was giving me help was incredibly rude to me. It came out of nowhere, and shocked me to the core. My mood flipped into negativity and adrenalin flooded my nervous system.

I managed to counter the negativity. Adrenalin, however, is my worst nightmare. It provokes muscles spasms that are part of the disease that struck me down.

I spent the whole night writhing with agonising muscle tension. It made me very aware of the bruise on the back of my pelvis. My shoulders were tortured, my arms, my legs, and especially my spine. Every muscle was fighting with my body. It was the worst night of my life in years and years.

I am very tired, I ache, and I plan to sleep. I cannot allow this to destroy my well-being any further. I feel so isolated though, as I seem to be the only person in the country living with this disease. This is what scares me. There is no research going on. There is no medicine that helps me.

I put my trust in God. Darkness lasts for a night, but joy comes in the morning.

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Who I am

Christine, in years to come you will hear words spoken about you,be asked questions you know not the meaning of, you will be as an exhibit, a fascination, reduced to symptoms of medical interest
Resist the urge to live,let yourself go into the gloomy stupor of death which leads to the light beyond. Ignore the instinct to survive, to grab hold of life, your suffering will be ignored, your pain unknown, you will never find love on this earth
Let all the confusion you will know wash over and away, the years beyond will be too many, with not enough of anything to sustain, not love, not friends, not family, your own daughter will desert you, your sister die in your arms
Dad will love you, mother will poison your life more than disease, let go, when death comes, say yes, and let it be short, don’t live long while you are dying, acquiesce, embrace the light, go to the everlasting arms, don’t exhaust yourself with living
People live in their cocoons, what destroys your life is of no concern, no one will care about you, empty words will fill your ears, enjoy the sunlight and say goodbye while you can speak, everyone you love will disappear, fade away, words have no meaning, life is dust, let go

Published by Hedgehog Press

This is the most autobiographical piece I’ve ever written. My editor invited poems on the theme of who we are. I chose to write to my seven year old self. I was broken up over recent events, I thought about the man I married, my love for him that had water poured over it and yet the support I gave him when a mother’s nightmare happened to us. He took, he took and took. Another relationship, fairly uneventful but he was jealous. He slipped a disc and I nursed him, he took and took. And all the time I was a mother putting my daughter first. Then a boring little man, who asked permission to go to the shop for his lunch stuff, got into my bedroom at three in the morning and molested me while we were talking. While making amends for that he seduced me and began a relationship with me. I started to fall in love but he obeyed his owner. I was fine but he came to visit me, and that was the undoing. I have a folder of emails I thought were from his owner, but apparently are from him. A lot of emails over the last nine months. And then he crushed me. Told me I only wanted a carer. He smashed me and the pieces are many