Every day I read interviews of people who have spinal cord injury, and every time I hear repeating no sense sentences.
I respect their different opinions but I cannot understand HOW paraplegics and tetraplegics think.
It is clear that spinal cord injury completely changes the lives both of the injured and the people who live with them.
It is true that we have survived and we must try to live our lives (especially in respect of who cannot), but it is also true that to live a really enjoyable life in our case is utopia.
When I say this people who don’t know me think I’m depressed, lonely or I haven’t accepted my condition. They tell me it isn’t true and despite the wheelchair I can do anything I want.
Cure Girls – On A Mission To Reverse Paralysis – Chronic Spinal Cord Injury Must Become Curable
If it were true, I would be walking on the beach with my friends, the Cure Girls or even a nice young man.
I would really love that.
I realise that the vast majority of us [including me] often feel helpless when facing with the consequences of spinal cord injury and then activate a sort of self defence mechanism.
Often we don’t speak about the ‘real’ consequences of spinal cord injury and we do even less in public.
The inability to manage our bodies independently often makes us uncomfortable and embarrassed. we try to hide what we can. i think we do it for different reasons and more or less unconsciously. Perhaps we want not be “pitied”; we hope that the glances of sorrow and set phrases that we are asked diminish.
But after twelve years of being FORCED with living in a wheelchair, I realized this is useless as who see us and “love us” is very sorry for what has happened. This is a spontaneous HUMAN REACTION that we can identify with.
The ability to understand that being paralysed is not NICE or FUN.
I don’t like to arise pity on people but I have a spinal cord injury that is visible to all; you cannot hide behind a finger and say that not much has changed or even argue that our life has improved.
Often we challenge our limits, not for passion, but just to show others that we are strong. In my opinion this is hypocrisy. I’ve heard a million times outbursts of para & quadriplegics exhausted and frustrated by their situation but they confess to me: ”I have a family, friends, I cannot let them see that I feel bad and I’m not happy. I have to give the example to my children, they should be proud of me and so I want them to believe that I’m strong, I don’t want them to be worried.”
So every morning we dress the mask of the spinal cord damage smiling and active… But it is just a mask.
I would like to be able to take it off. I would like to be able to smile fully and realise all my dreams.. But I really want to see the people I love to be happy and not see them suffer for the consequences of my spinal cord injury.
How can we do it? TO SUPPORT RESEARCH TO REVERSE PARALYSIS AND FIND A CURE.
TELLING OTHERS THAT EVERYTHING IS OK AND THAT WE CAN DO EVERYTHING DESPITE OUR DISABILITY DOES NOT HELP ‘US’!
PLEASE.. I ASK ALL OF YOU… REACT, FIGHT FOR A CURE. A CURE THAT WILL GIVE US ALL BACK OUR ‘INDEPENDENT’ LIFE. DON’T CLOSE YOUR MINDS AND DON’T LOSE HOPE.. ABOVE ALL DON’T WAIT FOR SOMETHING TO HAPPEN.
COMMIT YOURSELF TO TAKE ACTION AND SUPPORT RESEARCHERS THAT WILL HELP US WALK AGAIN. DON’T SIT AROUND WAITING FOR A MIRACLE TO HAPPEN.
DON’T SETTLE FOR ANYTHING ELSE BUT ONLY TO FIGHT FOR OUR LIVES BACK.. OUR INDEPENT, ‘WHEELCHAIR FREE’ LIVES!
Cure Girl Loredana
CURE GIRLS 
hi Loredana….often i find it difficult to comment on the Cure Girl posts…as there are language and cultural differences as i see/read..and i know words can be taken out of context…
please know i read all of the posts…as i do want to learn and i too want a cure for paralysis…i also know this is a global issue….as i continue to read some of the SCI works happening here in Canada…and as i continue to speak of my current understandings about the cure when i am with wheelchair basketball athletes and/or others i learn along the way…i also hear those currently living with paraplegia assuring me until “it’s (the cure) is available” they will live their life as “normal” as possible…so from my experience i have learned from differing discourses…just my thought.
also, i have learned never to assume how one perceives a life in a chair…as a walker i do know there is no status quo for “every” body…”each” person has a story to tell even people in similar positions/situations….each and every story matters…as a researcher i think the mattering part is that you tell your story in every way possible…and get response…as i know all of the women who courageously write and share on this blog are educating every “body” about the cure…i believe the global dis/ability discourse is huge endeavor.
I know to tell and retell stories continues to be is a mattering part of educating the world about paraplegia…we all imagine a world without paraplegia! I respect you Cure Girls for your words for your authenticity and power to share your stories. Sending you all positive vibes and energy.
Thanks for giving us your point of view 😉
😀 most welcome.
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