I miss… the ability and freedom to be spontaneous. Once you become reliant on others for, well, pretty much everything, the privilege that is spontaneity is no longer yours. I miss my days of youth when I could leave the house in my wheelchair, not a second thought or care in the world. As a kid the worrying and pre-planning was the duty of my parents. These days I have to schedule and organise my own outings.
How am I going to get there? Who will take me? What do I need to take? Will it be accessible? Will there be accessible loos? Will the accessible loos be clean and clear of clutter or are they being used as store cupboards as many are? How long will I be there? How will I manage while I’m there? How will I get home? And so on…
Even the days I don’t go out require consideration. I can’t be really lazy and lay in bed all day if I want to because I rely on carers, and they need to know what time to arrive. I can’t sit up all night or have friends round and socialise without wondering what time they’ll leave because again, I need a carer to get me ready for bed.
My life these days is very routine, very monotonous and very regimented. My mind, spirit and personality however is not at all regimented, disciplined or cautious. There are times I desperately wish I could just rise from my chair and run out of the house, to nowhere in particular. Just run: me, myself and I. Complete freedom of body and mind. No restrictions.
I’m thankful… I have my electric wheelchair which offers a great deal of independence. Until the age of 10 I had only a manual wheelchair which I couldn’t self propel and was therefore dependant on others to push me wherever I wanted to go. Many times though I was positioned awkwardly or simply abandoned somewhere I really didn’t want to be. Since using a powered chair, there’s no way I could return to using only a manual wheelchair. I can roam around my home and garden independently – a simple but significant pleasure. I can get exactly where I want to be when I’m out and about. Put simply, it’s a slice of freedom. It’s not the same as having a fully functioning body, but I certainly count myself lucky that I have my electric wheelchair as I know not all who need them, have them.