Living with a chronic illness

Shards of light

 

Through the spaces between the branches shards of light fall to the ground.  As the breeze catches the leaves the light begins to dance.  Come and sit down next to me because I want to talk to you.

Of late you have been very quiet and I always know when something is wrong.  The dancing lights stop and go into hiding.  The sun can shine as brightly as possible and the leaves can shake in the breeze but still you will not dance.  Do you feel like your dancing days are over?  If so, you are wrong.  I know you think you are always right but in this case you are wrong.  Your dancing is still within you but you must learn to listen more carefully. 

I can feel you stiffen as you want to protest but can’t find the words so I take my chance and continue.  If you listened more carefully you would hear all you need to hear and then you would understand.  You would understand the rhythm again and you would feel the beat of the internal drum.  The problem is that, from time to time, you stop listening and the music leaves you. 

 

Once the music has gone the dancing has gone and you only have your self to blame.  I blame you.  Don’t turn your back to me because I can still see you and I can still feel you.  I can feel the flutterings of emotion rising and falling and I can see the dark cave you want to hide in.  When will you learn that there is no hiding?  We are bound together just like the leaves on the branches and together we need to wait for the breeze.  When it comes this time will you please be ready?  Will you please listen? 

 

I don’t ask that much of you and I even put up with the odd quiet time but this has gone on too long now and I simply can’t accept it.  I won’t accept it and nor should you.  You should have more pride and more purpose.  You should learn to take some quiet time as a time to recharge and rebuild.   You should not try and hide in a dark cave because you don’t belong there. 

You belong deep inside me in the place that I know as ‘me’.  You are my soul and I love you very much.  Listen, here come the breeze again and soon the light will be dancing.  Dance as if your life depended on it and we will dance together forever. 

 

Just a gentle account of what it is like living with a chronic illness and the need to keep dancing.  May 2013

 

 

Award winning short story.

I wasn’t interested in the chair

 

I was in a coffee bar when he came in.  He didn’t walk in, he wheeled his chair in.  For the moment I saw him I couldn’t take my eyes off him and I just hoped he couldn’t see me looking.  I wasn’t staring, I knew that.  The chair didn’t interest me, just the man in it.  His face shone a bright light around the room and with joy I realised that he had eased his chair into the table next to mine.  Suddenly, I was interested in the chair.  I loved the movement and the way the chair was part of him.  A silly, silly loud woman was nearby explaining to her child all about a wheelchair.  He didn’t seem to notice but I did.  I didn’t want anything to disturb this untouchable union.  I felt connected to this man and I knew he was looking at me.  He wasn’t using his eyes; that would be too easy for him.  He had a hard route through life so he was used to finding new ways to see.  Just, very occasionally, he turned his head and looked past me.  I knew he was looking right at me and what is more, he knew I knew.  

He chatted to his friend as he drank coffee and I watched some more.  He looked like he worked out and he had one of those T shirts on that said ‘sport’ with the little collar.  He wore deep blue denim jeans and his legs weren’t thin.  I expected them to be thin.  His arms were absolutely glorious.  I love men’s forearms and I adored his.  He also had a fabulous tan.  With all that, I could  invent a life for him.  I could see him teaching sport.  As I listened to his voice he talked with real authority like a teacher does.  I heard him say ‘student’ so now he became a university lecturer.  I was still happy with my invention.  I then heard a few well chosen phrases about boats and sailing so he became a sailing instructor for university students.  It explained the tan.

I found myself touching my hair in that way that we girls do when we want to be noticed.  I wasn’t sure why I did that because I knew I had been noticed.  I felt spellbound as he turned and this time he looked right at me and smiled.  It was a wonderfully full moment full of intensity and intent.  It said ‘lie down with me’ and I silently said ‘yes’.

I watched and I listened some more.  Another man went to pay his bill at the bar and while he was waiting he did a shuffle to the music playing.  It was a man shuffle and it was horrid.  I remember the contrast of the chair as it eased in next to me.  Why can’t all men be in chairs…

That didn’t matter because my man was in a chair and he sat in it very well.  He was using his hands to speak and they were strong hands that I desperately wanted to touch me.  As I focused on the hands the rest of the coffee shop view glazed over.  It disappeared into itself and I was just left with the man in the chair.  In the hazy mist there was constant movement and I began to get irritated with the sounds in the space.  They stopped me hearing all his words and I felt cheated.  The same silly woman had sat down now and I could hear every word she said and I didn’t want to hear any of her words.

I heard him say ‘camping’ and ‘two days’ and I could see him in the great outdoors.  He would be perfect out there rather than confined in a coffee shop with silly women.  He began to talk with more energy.  In his head he was outside and I stepped outside with him.  His chair sped forward and I picked up pace to keep up.  As I reached level with him he took my hand and we stopped.  We were outside and we were holding hands.  Those hands that I so desperately wanted to touch me and now they were.  Strong, careful hands that made me feel safe and loved both at the same time.  In the same second he let go and wheeled onwards towards a small wood, just ahead.  I followed with no sense of where we were going or what we would find when we got there.  The light was challenged by the trees and only just managed to find ways into this new and enchanting space.  Still he wheeled and still I followed.  I could hear the woodland floor crackling under the weight of his chair and I could hear distant bird song but the rest of the world had disappeared.  The wheels were strong and their pathway straight.  I felt like I was wandering rather than walking.  Why could I not keep up?

All at once the chair stopped.  As I approached I heard the effort.  The strong arms were now being called upon to ease his body out of the chair.  He did this in one complete and deep movement and was on the woodland floor.  I looked down, standing over him and I dare not even breathe.  He pushed the chair out of the way as I sunk to my knees.  He held onto my hand again and looked past me again.  I smiled and I knew he could see my smile.  Slowly and with such tenderness I curled my body round his.  Is this what he meant about lying down next to him?  I didn’t care.  I was next to him and that was all that mattered. 

I heard him say ‘one more decent trip in me’.  I didn’t hear anymore as he turned his chair and left the coffee shop.  Quietly, but tenderly I said good bye.