Wednesday, 22 September 2010

Nine Lives

I’ve met a girl, he said
That was three years ago
I died inside

I’ve met a lady, he said
That was yesterday
I died again

I’m scared, he said
Follow your heart, I said
Hoping it will lead him back to me

Seven lives left

Tuesday, 14 September 2010


I had my foot x-rayed this morning because it's been hurting me for a week. I thought it would go away but it feels worse today and is swollen. The x-ray didn't show anything, so I just have to wait. Coupled with neck pain, I feel quite fragile. I keep wondering how people live with pain? I think I'm about to become a single woman with a cat. The search is on for a kitten. I want a Devon Rex (see photo) but they are hard to find. I'll probably end up with a tabby! I'm looking forward to having an animal around again. Something new to observe is pretty exciting for me. I accepted an invitation to The Third Sector Excellence Awards. I'm going in my capacity of actress in Sarah's Story, because it's shortlisted for an award. Note to myself: buy a dress before a cat.

Sunday, 12 September 2010


I've decided that it may be useful to keep a diary. I'm not sure who it will be useful to, perhaps only me? I might end up with thousands of readers, like Dr Mark Cato. I must contact him to ask how he did that. I woke up this morning really wanting to visit Highgate Cemetery . I'm reading 'Her Fearful Symmetry' by Audrey Niffenegger, which has made me curious about the cemetery. It's almost on my doorstep, yet I never knew much about it. I think it could be difficult to negotiate in a wheelchair though. I know I'd want to take photos too, which is impossible, due to my wimpy hands. I keep seeing stuff that I want to photograph recently. I know that I'll probably never see the cemetery and I think it would make me feel a bit ghoulish anyway. I went to Sainsburys supermarket instead. There's a pet shop near Sainsburys and I toyed with the idea of buying a kitten. I want a little companion to sit on my lap and make me feel that I'm the most important thing in it's life. Being realistic, it will more than likely hate my lap and I'll get irritated by cat hair everywhere. Things to do this week: sort out my neck pain and stop obsessing about my 'ex-bf' (although I never called him my boyfriend at the time). Over and out.

Thursday, 2 September 2010


They said that my body would stop working
I thought they were lying
I was just like everybody else
With a new life kicking in my belly
They had to be wrong

I was forced to believe
When I couldn’t turn a key
Or cut strawberries
I tried to hide the carpet burn on my face
It was happening

Walking stick, frame to wheelchair
Independent, strong, woman, to baby
Fear followed me like a new shadow
I screamed ‘help me’
But no one could

They said I wouldn’t see my kids grow up
I think I’ve broken the rules
Because it’s stopped and I’m trapped
But I can still express myself
Which is everything

Tuesday, 31 August 2010

Come Back to Me


Come back to me
We can hang out together and laugh
How did we manage to find everything so funny?
I need to see long eyelashes and freckles
How can such beauty be hidden from my sight?
Come back to me
I miss you

Come back to me
We can be happy again
Are rules and convention so important?
I can’t be complete without you
How can I dispel my loneliness and longing?
Come back to me
I miss you

Come back to me
We can go to our secret place
Where else can we feel comfortable and safe?
I can’t find a replacement you
Can you find another me?
Come back to me
I love you

My first and possibly last poem! Inspired by Maya Angelou and a very dear friend.

Friday, 6 August 2010

Songs of Life

This is a little bit of my life in music. I like how Nick Hornby and Stephen King use song lyrics/music references in their books. I started reading Hornby's book, 31 Songs, but didn't finish it. There are too many books that I haven't finished. I remember thinking with 31 Songs that I'd like to hear what song the bloke is writing about. Herewith, I'll demonstrate the beauty of the blog. There won't be 31 songs, only 7, although there are hundreds that mean so much to me.

The first song that I have any recollection of is Puppet on a String by Sandie Shaw. She won the Eurovision Song Contest with it in 1967. Considering that I was only two, I'm surprised that I even remember it. I reckon that because she won Eurovision, it was probably played for years, so that could be why. I didn't understand what Sandie was singing about, but it had the word puppet and I was a kid, so I loved it.

In the 70's there were The Osmonds, David Cassidy, Marc Bolan and David Bowie. But the next artist to really get my attention was the weird and wonderous Kate Bush. I had read the book Wuthering Heights and loved the song from the minute I heard it. I wanted to be Kate and I bought her albums and listened to her music until a few years ago. I can't listen to her right now but I'm pretty sure that I will again.

The 80's and every decade since, belong to Springsteen. I also got into Dylan and still love old Bob. Thunder Road brings back a great memory of a holiday in Corfu with my friend Ruth. We had to hire a scooter to get to the beach and used to sing Thunder Road on the way there. I can still feel the baking sun on my back and we were so young and free. If I could time travel I'd go straight to that holiday and feel like that again. I'm sure Ruth would too.

Next is my wedding song, We've Only Just Begun. We had a male band, so this version was how it sounded, when my new husband and I took to the dance floor. This was everything I ever wanted and I had amazing dreams of a fabulous future. I couldn't have imagined what was to come, I thought we would grow old together. It was difficult for me to listen to this song for a long time and I still feel a twinge of pain.

Then came the shocker, a diagnosis of motor neurone disease, ALS, in April 2000. I used to say my prayers but no one was listening. I soon gave that up. The lyrics to this song say everything about how I felt at that time.

Well they shot you point blank
you been shot in the back
Baby point blank you been fooled this time
little girl that's a fact
Right between the eyes, baby, point blank
right between the pretty lies that they tell

Goodbye to Love is my song. My husband didn't love me enough and the man I loved after him, didn't either. I was a puppet on a string... now I understand that song!

And here's the song for when I leave this earth, which I don't think will happen imminantly. My MND seems to have stopped or slowed right down. I feel trapped and wonder how I will cope with endless years of disability. I'm here for my children but they are growing fast. Who will be here for me when they leave? At least I don't fear the reaper!

Tuesday, 18 May 2010

Solitaire's the Only Game in Town

It's a long time since I've written or been inspired to write. I write emails, lots of them. 'Where's my shopping?' (Tesco) 'New antidepressant made my stomach hurt' (doctor) and 'I'm tired all the time' (anyone who will listen!)

I feel inspired today because of my late friend, Carla Zilbersmith. ALS/MND stole her away yesterday. She was beautiful and funny, right until the end. I know she wouldn't want anyone to cry for her but I did anyway.

So I was thinking how would Carla look at my life right now and make people laugh? Tomorrow I'm getting a riser/recliner chair for my lounge. I've always sat on the sofa; I wanted to have my children near me so resisted 'the chair of solitude' for years. I'm too uncomfortable to resist anymore. However, I've recently taken to playing the game Solitaire on my laptop. Strange thing is that my children and carers plonk themselves down next to me and tell me what cards to move! I scream inside 'it's called Solitaire for a reason', but no doubt will miss it.

I'm tired again... why is a blog for another day, if I have the guts to write it. I reckon short is better than nothing.

The Late, Great, Carla Zilbersmith! Carlamuses