Thursday, October 14th 2010

A cold October’s morning

Apart from Monday when it almost felt like a summer’s day with the sun beating down from a clear blue sky, it’s been on the rather chilly side this week. The leaves on the trees I can see from my bedroom window are changing to a gold/rust colour and slowly falling to the ground like snowflakes carpeting the pavements and producing a lovely crackling sound when walked upon. But despite the weather I’ve still been determined to get out into the fresh air for at least an hour each morning even though it now means having jackets and blankets thrown across the wheelchair. Being trapped inside my home for most of this year has given me a greater appreciation of the outdoors than I probably would have otherwise, and now that I am on level ground the temptation to go outside is simply too hard to resist. As the hospice is located on the outskirts of town and right next door to a very busy hospital there aren’t actually that many places to go on foot, or in my case on wheels. Consequently most of the time I just sit outside overlooking the rather barren looking garden sipping coffee and chatting with my carers.

Today for a change Ann and I decided to visit the coffee shop in the main hospital on the opposite side of the road. So off we went all bundled up in our autumn clothes only to find that the Costa coffee shop just inside the main entrance had a long queue of people and very little room to move inside. So instead we burrowed deeper into the hospital until we arrived at their restaurant where we sat chatting over a hot drink and munching on hot sausage roll. One of the staff nurses from the hospice came over to join us and help Ann with the wheelchair on the return journey as the path was on a steep incline. Mind you, according to Ann it’s worse holding onto a heavy wheelchair going down an incline rather than pushing one uphill.

On our way back I couldn’t resist poking my head in the WH Smith newsagent near the main entrance. Up until about two years ago a visit to the newsagent to buy my monthly magazines such as PC Pro, Focus, Photography Monthly, and National Geographic, or simply to stand and browse, was a regular and pleasurable experience. Sadly I had to give up all attempts at reading magazines a long time ago when my arms became so paralysed that even the simple act of trying to lift one arm with the other whilst holding onto a page to turn it would leave me feeling exhausted. Since then I’ve had to fall back on websites but the reading experience is simply not the same with all the distracting animated adverts, pop-up windows and hyperlinks. I miss the simple pleasure of relaxing in a comfy chair, flipping through the pages of the latest copy of my favourite magazines, whilst dunking biscuits into a hot drink. Bliss!

This morning I tried to recapture some of that feeling by having Ann push me along the magazine aisle in the hope that I might catch a glimpse of some of my favourites. And there they were, hundreds of magazines on countless subjects neatly arranged on shelves. My excitement grew as we homed in on the subjects that have most appeal to me: photography, wildlife, travel, science, computing, digital art. On one of the lower shelves I caught a glimpse of the latest issue of the BBC Wildlife Magazine. Ann picked up a copy and placed it on my lap and proceeded to flip through the pages. I was overjoyed at seeing the double page spreads of the preview images for this year’s Wildlife Photographer of the Year competition. So overjoyed in fact that I bought a copy of the magazine even though I knew full well that I would never be able to read it without help.

When we arrived back at the hospice I had Ann position one of the over bed tables up against the front of my wheelchair, and with its tabletop angled to about 45° we were able to perch the magazine on top and I could sit back and relax whilst Ann kindly turned the pages for me. It was a lovely way to spend the remainder of the morning whilst waiting for lunch to be served.

This morning’s experience had been something of a painful reminder of just one of so many things that this awful disease has taken away from me. You would think I suppose that after all this time a person could get used to it but the sad fact is you never do. Sometimes something will happen that will kickstart old memories of things that were once physically possible. Today it was the simple act of having my carer reach out and pick up a magazine for me. The feelings of helplessness and the grief of losing an ability that I once took for granted almost caused me to have tears in my eyes. There are times when I truly hate this disease.


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