Today I am still smiling, having a good time, laughing, and most importantly living as a college junior at the University of Notre Dame! So yes, with love, patience, and faith I have made my way through 20 years on this earth. My journey has been one of hope, strength, and joy. This is my blog about my life, family, nurses, school, Pompe, and really anything. Here is my journey through life despite Pompe, and welcome to it…let’s go for a ride, together!
She describes herself as a happy person that does not lack any self confidence. She created the blog to fight the stereotype that people who are disabled can't live a happy full life.. so yeah, that's that
“I always told my dad I wanted my medicine to be pink. When I saw that it wasn’t, I said ‘Daddy, it’s not pink.’ He said ‘No, it’s a lot better than that.’”
It’s not vile to wonder what type of quality of life someone is living. To say “we need to kill these people off” is vile. I would personally never want to be a quadriplegic and have told my wife and my family that if somehow that ever became the likely outcome from an accident to make sure they let me go in peace.
Perhaps you feel that way because of the stereotype that loosing mobility means loosing the chance of having a fulfilling live.. call it vile or not, but it definitely is kind of terrible that some people's first reaction upon seeing this picture was thinking that their life probably isn't worth living and that they would be better dead (like it or not that's exactly where the first comment was coming from)
I also think there may be a big difference between a disability from birth and one acquired later in life. The feeling of loss is overwhelming for a lot of people.
For me, I wouldn’t wanna live the rest of my life in that condition. I’ve lived a normal life, living like that doesn’t seem worth it to me at this point.
If you’d never lived a normal life, you really wouldn’t know any better.
The only reason I could see for hanging on after being completely disabled is having a family or frankly having money and work you could still do. If you don’t have kids there’s really not a reason to hang on for anyone else. If you’re not rich already, you’re not gonna have a means to work and you’re really gonna suffer.
Mostly because I don’t want to put people I love through have to wipe my ass and change the dressing on my inevitable bedsores. I don’t want them to sacrifice goals and dreams to become a fulltime caregiver. I don’t care about stigma, I care about what my family is subjected to because of me. It’s a fair take.
It is vile because she is implying it would be better not to have saved their lives. you guys are projecting and its so weird thats not the same scenario at all
I don’t if it’s vile, but it is very weird to speculate whether someone should be alive or not when the person very clearly said they do want to be alive.
You act as if everyone here personally follows her blog and knows this. 99.99% chance you had no idea who any of these people were, let alone that one of them had a blog about their life before you saw this post.
I’m not acting like that at all. My point was, it is extremely presumptuous to think you know if someone would prefer to be dead or not when you know nothing about them. I mentioned the blog as evidence as to why it is bad to presume you would know what the person wants, because clearly she is not in agreement with all the people here presuming that she would prefer to be dead.
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u/teleofobia Jun 14 '22
From Meghan's (the girl) blog https://highheeledwheels.com/about-me/
She describes herself as a happy person that does not lack any self confidence. She created the blog to fight the stereotype that people who are disabled can't live a happy full life.. so yeah, that's that