I have pretty much managed to accept my CP even though some people find it hard to believe that. I have even had people tell me they don’t agree with the way I feel about it. One thing that I think shows how far I have come in my journey to acceptance is my dreams. I frequently have very vivid dreams and often remember them on waking; I believe this is a side effect of my baclofen (muscle relaxant).
I think that most people have dreams where they spend the dream being something they are not. Alternatively, they spend it doing something they cannot do during their waking hours. I once had a conversation with a friend along those lines. She has a different condition to me. She spent a lot more time in bed, sleeping, than she did awake. As it wasn't a symptom of her condition it was something I found hard to understand. It wasn’t something that was easy for her to discuss being a very private person but on this one occasion she did mention it. Her condition is degenerative and she explained that it had robbed her of so much that she could do little for herself. Yet when she was asleep and in that wonderful place we call dreamland there was no disability and nothing that she couldn’t do. If she wanted to run, she ran. If she wanted to swim, she swam.
The idea of sleeping my days away because the dream world was preferable to real life was still a difficult concept for me to understand.
After that conversation I found seeing it from her perspective a little easier. Even though I have had issues with depression and related sleep problems, I have never considered resorting to sleep as a way to help me cope with my cp. However, it works for her. We all have our own little coping strategies to help us cope with whatever life throws at us (disabled or not). Mine is to journal; hers was to sleep. I am not trying to condone things which are hurtful or which may cause pain or harm to others. I am just saying that whilst we may have a reason why we disapprove of another’s methods of coping, they will have reasons why it works for them and we must respect them. After all what really matters is it works for them.
Going back to me personally and my dreams, I dream big and I dream in detail. I have a very active (perhaps even overactive) imagination. Just like my friend mentioned above I too have dreams occasionally where running, jumping and walking are not things I cannot or struggle to do but are things I can do with ease and revel in doing. Frequently however I will then realise part way through the dream that I am disabled and that I cannot do these things. Then I will panic and will spend the rest of the dream either crawling around or walking very unsteadily looking for my wheelchair. If after the realisation I were to fall in the dream, I wouldn't be able to get up unless I can find something to get myself up with – just as is the case in my waking hours. I have never yet found my wheelchair or my walker in any of these dreams instead it usually ends when I awake feeling unsettled and somewhat out of sorts for the rest of the day.
I don’t know anything about dream analysis or what these dreams might mean. To me it seems as though they signify acceptance. Realising partway through a dream that things aren’t as they should be and then searching for my wheelchair – for my lifeline – is a true measure of just how much I have accepted my disability and how for me, life on wheels is completely normal and totally unremarkable.
When I was a child and in my early teens I was the girl who dreamed of the day she wouldn’t be disabled any more. The one who wished away her days planning what she would do when her “punishment” was over. I was the girl who was devastated when she was told that dream would never come true.
Now however I am the girl who spends her days wondering how else I can prove to the world that I have CP but it doesn’t have me. I am the girl who still dreams the most surreal and unbelievable dreams at night. The one who dreams that she isn’t in a wheelchair any more and then realises that isn’t right! I am the girl who is proud to be in a wheelchair.
Being the girl I am now is good for me. It probably leaves people wondering what caused the change. Nothing physically changed for me. I was still the mouthy girl in the wheelchair. Instead I grew a little older and maybe a little wiser. Then someone reached out to me in a time of trouble and shared with me some words that I have remembered ever since.
I left my secondary school at 16 and went to a local further education college. The staff were lovely; the set up allowed me more freedom and suited my needs more. I made some good friends from other disabled students. My classmates were a different story.
A few of them were nice people yet not one of them was willing to adjust there plans to allow me to join in. I spent many break times sitting by myself because my classmates had gone to the pub and it did not have wheelchair access and my friends on other courses did not have a break. There was another pub with access not far from the college – but they could not walk the extra five minutes to allow me to go too. That’s something I spent some time crying about until one of my lovely learning support assistants found me sitting there crying one day and let me talk to her and then when she ran out of time took me to her boss, my disability support coordinator.
Ruth, my coordinator, said to me “Emma, love, if they cannot be bothered to do that one thing for you then do not worry about it - they are not worth it and they certainly are not worth your tears. Besides you’ve got something much more important to worry about at this point in time – your mascara’s smudged” giving me the advice I needed to hear and the humour I needed even more to take away the hurt.
Because being at college, and later on at university and the way that I met people who were able to deal with my disability without making a big deal of it taught me what is perhaps one of the most important life lessons I have ever learnt. If people or a place cannot be bothered to accommodate me and to acknowledge the fact that I’m different to them and need different things then the real problem, the underlying problem in that case lies with them. it’s nothing to do with my cp or my wheelchair or my crap balance – they can’t look beyond my outer shell and see who I real am inside.
I am Emma. I am disabled. I wouldn’t want to be anything else – even in my deepest dreams.