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Hey: it's this story again. As someone who's around my 30s now with Duchenne Muscular Dystrophy and who has friends with the condition, I've always found it a b

Hey: it's this story again. As someone who's around my 30s now with Duchenne Muscular Dystrophy and who has friends with the condition, I've always found it a bit too bleak about the quality of our lives (probably for drama's sake). Yes, I need a wheelchair and full time care attendants, but also: * I went to university and had a great time there * I had a pretty normal social life growing up, and made some life-long real life friends in college who I still visit regularly. * I talk to women and have had romantic relationships. * I've had and continue to have what I consider a pretty successful career in software. * While I like video games and played a lot of them in high school, I'd say I prefer going out and having interactions with friends more, however challenging it can be logistically. I know DMD severity varies between patients, but I don't want this article to discourage people with DMD or with children that have DMD. It can be tough, but I think that modern treatments allow us to lead fairly rich lives outside of Warcraft.

jpm_sd 2y ago
I didn't find it bleak at all. Brought tears to my eyes though. I'm glad your condition is less severe, or better managed, than his. Keep living your best life!
- larodi 2y ago
  I could not read the whole piece, I cried. this all is too human for humans who forgot to be.
mrmetanoia 2y ago
"...allow us to lead fairly rich lives outside of Warcraft." I didn't get the impression from the article it was otherwise, just that this young man found what he was looking for inside a game and its community. The article felt positive, your comment feels defensive and judgemental.
- card_zero 2y ago
  Well, his parents supposed otherwise. > Robert delivers a eulogy for his son in which he speaks of the sorrow he and Trude had felt, believing that his short life had been one void of meaning, friendship, love and belonging. Edit: I wasn't trying to attack WoW, so here's the next line too: > But, he continues, over the past few days they have come to understand that this was not the case, and that he had experienced all these things.
  - swores 2y ago
    His parents supposed otherwise before they knew about his online stuff, you're making it sound like they still felt that way about his online time too.
    - card_zero 2y ago
      OK, WoW is great and rich and fulfilling, but also, DMD is not necessarily a prison sentence. I think that covers all the bases?
      - thegginthesky 2y ago
        This is not the point. The point is you misquoted the article without understanding the full context, and was corrected. The parents weren't judgmental of an online life, they were just unaware. Matter of fact, on the documentary from one of the replies, it felt that they were glad their son had good friends who really cared about him.
        card_zero 2y ago
        Jeez. I understood the full context, I just wasn't even talking about that, and neither was the grandparent comment, I think. The "online life: wholesome or not?" debate has crept into this comment chain by accident.
      - bigstrat2003 2y ago
        > DMD is not necessarily a prison sentence. Nobody said it was.
dang 2y ago
> probably for drama's sake I've changed the title above to be that of the documentary whose release has prompted the article. We use the same trick with book reviews—i.e. since book review titles are often sensationalized, we usually change the HN title to that of the book. p.s. Thanks for your comment! We don't get this kind of perspective often.

jpm_sd 2y ago

I didn't find it bleak at all. Brought tears to my eyes though. I'm glad your condition is less severe, or better managed, than his. Keep living your best life!

larodi 2y ago
I could not read the whole piece, I cried. this all is too human for humans who forgot to be.

mrmetanoia 2y ago

"...allow us to lead fairly rich lives outside of Warcraft." I didn't get the impression from the article it was otherwise, just that this young man found what he was looking for inside a game and its community. The article felt positive, your comment feels defensive and judgemental.

card_zero 2y ago
Well, his parents supposed otherwise. > Robert delivers a eulogy for his son in which he speaks of the sorrow he and Trude had felt, believing that his short life had been one void of meaning, friendship, love and belonging. Edit: I wasn't trying to attack WoW, so here's the next line too: > But, he continues, over the past few days they have come to understand that this was not the case, and that he had experienced all these things.
- swores 2y ago
  His parents supposed otherwise before they knew about his online stuff, you're making it sound like they still felt that way about his online time too.
  - card_zero 2y ago
    OK, WoW is great and rich and fulfilling, but also, DMD is not necessarily a prison sentence. I think that covers all the bases?
    - thegginthesky 2y ago
      This is not the point. The point is you misquoted the article without understanding the full context, and was corrected. The parents weren't judgmental of an online life, they were just unaware. Matter of fact, on the documentary from one of the replies, it felt that they were glad their son had good friends who really cared about him.
      - card_zero 2y ago
        Jeez. I understood the full context, I just wasn't even talking about that, and neither was the grandparent comment, I think. The "online life: wholesome or not?" debate has crept into this comment chain by accident.
    - bigstrat2003 2y ago
      > DMD is not necessarily a prison sentence. Nobody said it was.

dang 2y ago

> probably for drama's sake I've changed the title above to be that of the documentary whose release has prompted the article. We use the same trick with book reviews—i.e. since book review titles are often sensationalized, we usually change the HN title to that of the book. p.s. Thanks for your comment! We don't get this kind of perspective often.