"Robert and Trude mourned for their son's lonely life in wheelchair."
January 27, 2019 3:55 PM   Subscribe

"In retrospect, I think we should have been more interested in the digital world he spent so much time in. The fact that we did not, robbed us of a possibility we did not understand we had." A longform article informally translated on r/wow from NRK, the Norwegian national broadcaster, about the rich digital life and friendships of Mats Steen, a WoW resident who died from Duchennes muscular dystrophy at age 25.
posted by DarlingBri (14 comments total) 19 users marked this as a favorite
 
Don't go straight to the NRK Google Translate link, as I did - scroll down to the comment with a better translation below.
posted by zamboni at 4:16 PM on January 27, 2019


Such a mix of emotions bound up in one story. Thanks for posting, i'm really glad I read this.
posted by hippybear at 4:24 PM on January 27, 2019 [1 favorite]


I think I have something in eye.
posted by Damienmce at 4:54 PM on January 27, 2019 [1 favorite]


Very touching story, and a gentle reminder to leave our logins to a trusted person to let our MetaFriends and spouses know when we pass.
posted by a humble nudibranch at 6:04 PM on January 27, 2019 [4 favorites]


"It's not a screen, it's a gateway to wherever your heart desires."
posted by Coaticass at 6:21 PM on January 27, 2019 [4 favorites]


Lovely; thanks for sharing this.
posted by Zephyrial at 6:26 PM on January 27, 2019


Yeah, huh? Duchennes would be a pretty rough life. I'm glad there are games that people with conditions like this can play, worlds they can inhabit other than this one. That would make a big difference to my quality of life, I think, if I were in that situation. Or if I ever find myself in a similar one, because of course that could happen to any of us.

My aunt was nearly that profoundly disabled, during the last few years of her life. Romance novels were her escape. She had stacks of them.
posted by Anticipation Of A New Lover's Arrival, The at 6:36 PM on January 27, 2019 [2 favorites]


Hmm, I realize that that comment could be read to minimize the fact that places like WoW are social worlds, with other real people in them, unlike e.g. a romance novel. Not how I meant it to come out, sorry.
posted by Anticipation Of A New Lover's Arrival, The at 6:37 PM on January 27, 2019 [2 favorites]


That’s a lovely story.

My grandfather was born during WWI and he was a ham radio junkie. He also had friends he’d never met all over the world, a few decades before it was cool. When he got disabled enough late in his life to move into a retirement home, he had to sell his ham radio stuff. I knew it was a sad moment at the time, but I’m feeling the sadness again, having read this.
posted by eirias at 7:00 PM on January 27, 2019 [9 favorites]


I'm sad for eirias's grandfather. Mine was a ham too though hadn't been active. Dadidadit dadadidah out across the ether.

It's sad because it's just... could a few meters of antenna on the roof of the retirement place not be possible please? I'm picturing him and a group of guys (for him it would have been guts) headphones on in the common room cattycorner to the upright piano. Getting together and getting out in the world, tapping stories out to an unknown receiver. It's really lower-maintenance than having the place keep a dog.
posted by away for regrooving at 12:38 AM on January 28, 2019 [6 favorites]


This was touching, definitely one of the triumphs of the digital age, the way people can connect and live out in virtual worlds away from the shithole we built here. Parts of me suspect our future will have to exist in such worlds, once all the doom we are stockpiling catches up with us, reducing resource waste by having people exist primarily in the digital realm rather than the expensive and destructive real world and all its ills.

As I've gotten older, bizarrely, I sometimes regret not playing WoW more, like I missed out on a decade of a second fantasy life I left behind. I can't help but wonder how my life would have been better if I'd say, never gone to college and instead played WoW and just worked jobs.
posted by GoblinHoney at 9:32 AM on January 28, 2019 [1 favorite]


Non gamers often profoundly misunderstand MMOs and the connections you can make while playing them.

I was an MMO player for many years and I did have friends, real friends, real people, I just hadn't met them. I would think most MeFites would know that feeling. Nobody in my guild died, but one or two others on the server did and it affected the player population deeply.

I was mostly pre-WoW and my MMO days are largely over, thanks to the shifting styles, people move on. But some of those friends are still friends, still real people, and some of them I still haven't met. My life is a different shape these days but I still miss it all sometimes.

.
posted by Ilira at 12:37 PM on January 28, 2019 [1 favorite]


I did have friends, real friends, real people, I just hadn't met them…. My life is a different shape these days but I still miss it all sometimes

Not a gamer, but I was an active member of several Usenet news groups, especially RMMGA (rec.music.makers.guitar.acoustic) and there was such a great community feel. Many of them are still electronic friends 20 years on, and as Ilira said, it has changed my life.
posted by 43rdAnd9th at 2:02 PM on January 28, 2019 [1 favorite]


BBC article about him, which was posted as a double
posted by vibratory manner of working at 9:23 PM on February 9, 2019


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