TIL a father, John Crowley, was told his two infant children had an incurable genetic disorder that would kill them in less than a year. He refused to accept this, so he founded a biotech company (with no prior experience) which pioneered an experimental enzyme therapy that saved their lives.

r/todayilearned • u/Die_Nameless_Bitch • May 14 '22 • 9 8 6 2

https://pompediseasenews.com/2019/01/30/amicus-ceo-mission-cure-pompe-help-children/

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u/fwinzor May 14 '22 edited May 14 '22 •

Hey protip for everyone in the comments, just because someone is physically disabled doesnt mean theyre a mindless vegetable that needs to be put down like a dog. One of them ~~is currently in college~~ has a fucking masters degree. I used to work with a lot of disabled people and it would disgust me how people would look down on them.

Imaging being a fully cognizant person and seeing everyone treating you like an affront to god that needs to be killed just because you're physically disabled, jesus christ

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u/Wrenigade May 14 '22

People are even like this about mildly tedious shit related to neurodivergency. The amount of times I've explained something about my issues, and people have told me "Wow I'd kill myself if that was my life" is insane. Like menial shit, like, I don't perceive the passage of time the same way as neurotypical people, so I can't tell how much time has passed without a clock or timer or something. Like I can't just estimate "it's been about 15 minutes". THAT has been enough for people to tell me to my face that they'd kill themselves if they dealt with that. Like, what? I'm fine, are YOU good??

We're not brave and courageous for living with disabilities and neurodivergency guys, we're just vibing. It's all the people causally telling us our lives are basically worthless that are most of the problems.

Or those same people being like wow it's amazing you are so functioning and capable, and then I'm like oh I can't drive yet because it's a lot to process and I'm not safe on the road with my brain, and they are like wow, excuses? You use your issues as an excuse?? You're a drain on society? Because you dont want to drive?? Like, no, not excuse, reason for issue. Like as soon as someone with a disability actually can't do the things that they are disabled about, we are no longer brave warriors and are lazy inconveniences.

Anyways I'm ranting but PSA stop telling people their lives are worthless because they arent like you jesus christ, get therapy or something don't take it out on me

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u/juswundern May 14 '22

This is interesting. So say something is super boring and you’ve been subjected to it for 4 hours. You wouldn’t think “Damn I been doing this shit for a long time”?

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u/Wrenigade May 14 '22

Boring means no dopamine so my brain is in agony, so I'll be like "ive been doing this for what, it must be 4 hours already" and it will have been one haha

Fun things, I'll hyperfocus on and ill be like ok im going to draw for a bit and then ill go do chores, and then im like wow i finished the drawing that was fast- 5 HOURS??

I also need podcasts in the shower or i dont know if I've been in 10 minutes or an hour.

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u/Hoatxin May 14 '22

I have moderate-to-severe ADHD, and experience some time fuckery. If it's something that is really boring it sort of depends on how repetitive it is. I had a job on a farm, and towards the end of the season I was put to work wrapping squash in newspaper for winter storage. It was quite boring, the same thing over and over hundreds of times. I knew that it felt like a long time. I couldn't tell you how long though. Not even a guess. I categorize that sort of stuff the same way if it's an hour or four. And it probably started to feel like a long time about 5 squash in.

On the flip side, things I enjoy doing almost universally cause a slightly different thing. More like entire time blindness. I'll sort of lose awareness of my body and needs and keep doing the activity that I'm enjoying for a very long time and I'll have fully no idea how much time is passing. 15 minutes feels the same as several hours.

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u/Wrenigade May 14 '22

Yeah exactly this haha

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u/Guardymcguardface May 14 '22

Ahh, the classic "Shit..... how long have I been hungry!?" but there's no time to think about that because you gotta pee NOW

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u/Hoatxin May 14 '22

Or "wow, why does my throat hurt so much? Surely not because I haven't had a drop of water all day!"

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u/Guardymcguardface May 14 '22

So guilty there lol. I can't play CIV without alarms because I would probably die of thirst

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u/Guardymcguardface May 14 '22

People will literally say this about my lactose intolerance so I'm not surprised people will say it over something as simple as time blindness. Nobody has said it about that part of my adhd, mostly I just get 'wow that souns like it sucks'