ljelome wrote:Thank u for ur kind words... as an disabled person the feeling becoming a burden for our caregivers is a very heavily burdening thoughts...Yeah, we should think the opposite, that we can be the source of joy for people around us. A smile, a "thank u", would be very meaningful for our caregivers.
As for the person with this debilitating illness, a comforting partner would be highly needed. Someone who can understand us, our feelings, our emotions, our needs, showing the care not only in the form of words but actions too.
I think that you have a wonderful attitude
I believe that disabled people can live as happy and as full lives as healthy people with the right attitude and the right support.
I feel that we have to seek a balance between trying to advocate for ourselves and improving our situation and trying to make the best out of our situation.
Here is one of my favorite passages from Dale Carnegie's "How to Win Friends and Influence People, 1936.""Abe Lincoln once remarked that ‘most folks are about as happy as they make their minds to be’. He was right. I saw a vivid illustration of that truth as I was walking up the stairs of the Long Island Railroad station in New York. Directly in front of me thirty or forty crippled boys on canes and crutches were struggling up the stairs. One boy had to be carried up. I was astonished at their laughter and gaiety. I spoke about it to one of the men in charge of the boys. “Oh yes,” he said, “when a boy realizes that he is going to be a cripple for life, he is shocked at first; but after he gets over the shock, he usually resigns himself to his fate and then becomes as happy as normal boys.” I felt like taking my hat off to those boys. They taught me a lesson I hope I shall never forget.”
this all sounds great-it is what makes good movies. but, these instances are far and inbetween. i don't want it taken that we shouldn't be kind to our caretakers or that a crippled child can't bring joy or be loved by their parents. or that a couple as annette and her husband would not still love each other and not want to be apart. there are many here at tims and elsewhere that have this in their lives. people that they know each other well enough care enough and know their needs even down to rubbing a cramped foot - or other things that if it was just the hired caregiver you could not expect nor will most do as say make sure your hair is like you want or just have your back rubbed or talk of the before yrs. these have till death they part. but, it still cannot be as good as before as far as what life they previously enjoyed and planned on. and yes, people adapt, they still find things to smile about, enjoy what they still can and it's a choice - they stayed for the long haul because they have integrity, they took to heart what taking a vow meant and they love each other. but, becoming a burden would be hard and watching someone you love go through this would tear me apart. but, they wouldn't not be there for each other. i have a cousin, she's in a wheelchair now can't even feed herself not because of ms. her and ronnie met as young teenagers fell in love married. she got a brain tumor at 18 survived. lost the use of her arm but still went on had 2 daughters lived a pretty good life but time took it's toll and she got worse and worse. 53 yrs. later her and ronnie are still a team he dodes over her they are still in love--much like annette and her husband. but, she and i talk a lot and the longing to be normal and the pain and just tired of being in this situation as much as she loves life and wants to live--she's ready to move on from this torture.
then there are many who don't have anyone to help fill the void of being cheated out of living. yes they have life but are not living. going through the motions "what they can" smileing laughing finding pleasure in whatever they can. what's the choice??? they soon learned that this is a world that when you smile the world smiles with you--cry and you cry alone. you can't display for long how you feel or there would be noone around. or at the least they would make very short visits. so, you develope the skill of survival and doing the best you can. but, deep down you hate it, trying to remember the many blessings you have and there are many--but, what's the choice?
as far as the little boys you speak of i know where you're coming from. yes, they find what happiness they can-they giggle and laugh. they want life as we all do and kids are resiliant. but, i'll never be convinced they are as happy as normal kids. here's true story no. 2--another cousin just turning 13. "wow" i remember when i turned 13-boys, music, danceing, primping in the mirror, the world was my apple! i was gonna do it all-the sky was the limit. now, she on the other hand will never have even these memories. if you saw her face and her big beautiful eyes her perfect creamy complexion and her show stopping smile--you might think that she's a vision of a heavenly angel "which she is". she does great in school, she's very intelligent and hopefully she may go on to be one that we read and hear about and accomplish great things. she has adapted--what's the choice??? she's in her wheelchair because of cerebral palsy from an infant depends on others for most everything. she's always being pushed around by her brothers, they take out in the yard when they play she laughs and joins and chimes in with jokes and chatter. BUT,if you are paying attention to those big beautiful eyes--you see the longing to jump up and grab that ball and take off with it.
so, yes people adapt, kids find their way to what happiness they can. BUT, i will never ever be convinced the kids in this kinda shape or adults that have terrible disabilities have found the happiness of what a healthy child or adult enjoys. again, what's the choice here.
i've caught the "longing look" in my eyes by accident when rideing in the car watching people going about their business things that they're not even paying attention to--i happened to glance at the side view mirror--and there it was the "longing look".
so, no, i don't buy it that anyone "severly disabled" is just as happy as what a healthy sound person or child is. again, just what is the choice???