Life in a broken bureaucracy with a bendy and borked body
one of your most powerful videos.I wanted to write yesterday but i was so tired and eugh I couldn't.For me, a day where I had to catch a busy train and sit for an hour. Then negoiate a packed train station and bus, and then meet complete strangers and be with them for over 2 hours and then repeat the same journey back again was something I had to really force myself to do. It takes a lot of effort to wear the mask for a whole day. the mask of being well and happy etc.The only way I did this was with the strength that the people who were too sick to go on my mind. I was determined to do it for them. I survived by taking photos, I detached myself from the event by the photos I took. It resulted in some amazing photos which you can see if you click my name.After all, after a few days rest and relaxing I can 'get over' the day, but I know for many people like me there is no way they can simply 'get over' the conditions they have. I am hoping that the impact that it has will reach alot further than one day. thats why I did it. it wasworth the sacrfrice.
When I see the contrast between the two videos, of the before and after, I wish that all the doubters could see. They could see the hidden costs of being "together" for the fight. You are so brave and strong and selfless. I wish I could be.
I haven't posted in a while but I am still following. I hope you have all you need and will recover.Alhi
im just uploading your granada video to my photobucket album, its the second one. so you can use that to embed into your blog!theres a programme you can get that videos the screen. i know its not perfect...but :) its there.
I know exactly how you feel and hope you gain back you strength and feel better as the days go on and you have some rest.
I'm so sorry that you have to post this video so that people can have a glimpse into the life of someone with a disability.I know how it is important to us to try and "put on a good face" on the rare occasions we do manage to make it out for any reason. I'm sure many people who have seen me out are really surprised- they do a lot of " and don't you look WELL". What they don't understand; what most people dont understand; is that any trip out completely exhausts me and causes me intense pain for days afterwards. So yes, when I'm out I'm going to try damn hard to "put on the good face" which for me means putting on make-up, smiling, paying attention.The next two days I crash. I cannot stay awake. I'm in a fog from all the painkillers. I'm emotionally fraught, I often find myself crying. I don't get to spend any time with my family. I have the indignity of having to sleep in my tights, because I can't take them off. In fact, I'm frequently found in all my clothes the next day having passed out in them. My make up too.I'm so full of gratitude for what you and other brave spoonie warriors are doing. I can't make it out to any of these rallies- although I think they're essential. My many many thanks, for making the stand, although it costs you so dearly. Now take some time to recover and take care of yourself. We need you.
I know how you feel and hope with rest you will feel better in a couple of days. Thank you for all you do for all of us!
Thankyou darling.. Thankyou. X You give me the spoons to fight.. and fight we will. We all deserve far better than this. I just wish I had your knowledge and presence cos Id happily share my spoons with you.
three words.you are amazing
The great irony is that without EDS, you'd probably have been making a decent living as a lawyer, not a great living perhaps because you'd be doing Pro Bono left, right and centre, defending desperate people who have done no wrong. Instead you are living on a pittance defending desperate people who have done no wrong. What happened to the Bendy Begging Bowl, I want to make a small donation, and I want you to spend it on whatever makes you feel better.
Damn, makes my 'costs' look trivial by comparison, and yet I allow them to restrict me to online campaigning. Even more kudos for what you do if this is the price.I've just blogged about the invisible cost of disability, and while it isn't on the same scale, it may give people an idea about the all encompassing way it can restrict your life: http://davidg-flatout.blogspot.com/2011/10/flattened.html
You're a hero to so many of us. Thank you.
Hi Kaliya, hope today you're feeling better. You looked and sounded amazing on saturday, really inspiring. We were at Norwich, and it looks like the local press covered it well. Am just about to write to our local paper here. Just one thing I'm wondering - we have been urged, rightly, to contact our MPs. We spoke to our MP after the march in London in May, but he was not at all receptive, pretty much just echoed Maria Miller and the party line generally. So what do you do if the member of parliament who is meant to represent your views doesn't want to?
You are one amazing orator...and the before and after videos are truly revealing...politicians from all points ought to be forced to watch...and be deeply ashamed...keep it up hon...
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