I abhor self pity or at least when applied to myself yet its an emotion I fight against every waking moment. I always try to project a strong determined image after all if you tell yourself something often enough you'll believe it, well that's the theory.
If you give in to those moments of self pity the truth of your situation hits slams home reminding you of your inadequacies and inabilities and leaves you feeling weak and helpless. Weakness is a mortal enemy and there's no room for it in life. It means you stop and dwell on the things you used to do and can no longer do, it makes you think about tomorrow and how you'll get through it and that is a killer. Wanting to plan ahead, wanting to do so many things but not knowing if your abilities will still be there.
One day at a time is how life really has to be lived when living with a progressive disability and one that each and every day leaves you with a little less ability and independence than you had yesterday.
Sometimes I feel so alone in my predicament though I know that's not the case. I thought I was done with the pretence of understanding people when they speak to me particularly since I found the confidence to tell them directly that "I'm deafblind I might not understand you please be patient and so will I," but it doesn't matter how patient people are or how many times you tell some people that your dual sensory impaired, it seems they just can't grasp the significance simply can't visualize how someone without hearing and almost no vision can be trying to speak to them.
Every single little thing that involves communication navigating round places and just getting through the day in one piece is a challenge and one of proportions many able people could never comprehend. Everything is I do feels like a small personal achievement yet to others its just a normal thing.
So looking at yourself, I mean really looking inside and seeing what's become of the person who was once socially 'normal' is something to be avoided.
Tonight I read a blog extract written by Claire Grieve. edforspeakingup.wordpress.com/2013/08/27/who-is-that-person-in-the-mirror/ I'm not ashamed to admit it made me cry, perhaps because I related so well to what Clare had to say, although our disabilities are vastly different our feelings are not and we share that incredible inward strength.
It would be so easy for people like me and Clare to give into those feelings of self pity, some people are entitled to feel live has dealt a hefty load but we continue to fight our inner demons and battle against our bodies and society. We have too and one of the consolations is the hope that we can help and inspire others, who unlike us lack that same strength and determination and sometimes...just sometimes...its okay for us to shed a little tear for ourselves and for others too.
If you give in to those moments of self pity the truth of your situation hits slams home reminding you of your inadequacies and inabilities and leaves you feeling weak and helpless. Weakness is a mortal enemy and there's no room for it in life. It means you stop and dwell on the things you used to do and can no longer do, it makes you think about tomorrow and how you'll get through it and that is a killer. Wanting to plan ahead, wanting to do so many things but not knowing if your abilities will still be there.
One day at a time is how life really has to be lived when living with a progressive disability and one that each and every day leaves you with a little less ability and independence than you had yesterday.
Sometimes I feel so alone in my predicament though I know that's not the case. I thought I was done with the pretence of understanding people when they speak to me particularly since I found the confidence to tell them directly that "I'm deafblind I might not understand you please be patient and so will I," but it doesn't matter how patient people are or how many times you tell some people that your dual sensory impaired, it seems they just can't grasp the significance simply can't visualize how someone without hearing and almost no vision can be trying to speak to them.
Every single little thing that involves communication navigating round places and just getting through the day in one piece is a challenge and one of proportions many able people could never comprehend. Everything is I do feels like a small personal achievement yet to others its just a normal thing.
So looking at yourself, I mean really looking inside and seeing what's become of the person who was once socially 'normal' is something to be avoided.
Tonight I read a blog extract written by Claire Grieve. edforspeakingup.wordpress.com/2013/08/27/who-is-that-person-in-the-mirror/ I'm not ashamed to admit it made me cry, perhaps because I related so well to what Clare had to say, although our disabilities are vastly different our feelings are not and we share that incredible inward strength.
It would be so easy for people like me and Clare to give into those feelings of self pity, some people are entitled to feel live has dealt a hefty load but we continue to fight our inner demons and battle against our bodies and society. We have too and one of the consolations is the hope that we can help and inspire others, who unlike us lack that same strength and determination and sometimes...just sometimes...its okay for us to shed a little tear for ourselves and for others too.