My bed and the gap
You might end up liking it. Just give it a try. Mum was in another room, calling messages of support, encouragement and reason.
I was in my bedroom at my computer. I was trying to make it seem like I was busy and should not be disturbed.
Ring them up and cancel the order. I'll take the blame. I'm not going to sleep there anyway, I yelled stubbornly.
My face was heating up, my fists clenched and my whole body was tense. I wanted to scream. Every few seconds, a tear would drop with a splat and make a puddle on my keyboard. I had been dreading this day, although I hadn't known how much until this moment.
The new bed
Today I was receiving the unwanted gift of a new bed. It had fancy controls. A button on the left raised the head of the bed to a sitting position. Another button lowered the height of the bed. It had the appearance of a hospital bed. It had no place in the bedroom of a twenty-one year old with cerebral palsy.
I had been asked why I was resisting a bed that would make things easier. I replied that this bed made me seem less capable than I am. Looking back though, I realise I was more upset about what the bed symbolised. It is a worry that I label 'the gap'.
Have you ever had the dream where you are walking down the street and suddenly you recognise the person in front? Even though you increase your pace to catch up they always remain a few steps ahead of you.
When secondary school finished, the school funding I received for occupational therapy and physiotherapy stopped. It was a positive change because it forced me to take control of my own exercise regime. However, with the therapy I felt like I had been achieving a lot and steadily moving in the right direction. And then I hit a plateau. It was like everyone else had begun to make big life changes and I had stalled.
Regardless of how much the new bed promises to aid me in my quest for independence, I see it as confirming my difference. When I was younger it seemed like I was waiting for a switch to be pressed so that, magically, I would be able to do everything I had always wanted to. Back then, no matter how unrealistic my dreams were, everything was possible because the future seemed so far away.
Now though that future is here. My parents are getting older and there is a constant worry about the strain on their back. It has taken a lot of getting used to, but I am slowly realising it is more important to look after practical needs than aesthetics. Just one step at a time.