As a kid and young teen I used to be the kind of smartass aspiring nerd that I assume some of you were as well and many of you encountered at some point: smart, interested in technology, cool...
As a kid and young teen I used to be the kind of smartass aspiring nerd that I assume some of you were as well and many of you encountered at some point: smart, interested in technology, cool music, and anything non-mainstream, but with less than stellar social skills, lacking the knowledge and wisdom that you get by actually doing things instead of talking about them, and with not many friends, because few people around me shared my interests.
I did have some friends in the offline world who were quite similar, but they each lived in a different town and we only saw each other a couple times per year. The upside of that was that we valued every meeting all the more, where we talked, listened to newly discovered music (this was pre-Spotify but also pre-Youtube), played video games either in splits-creen or just by taking turns in an interesting singleplayer game, rode bikes around and did lots of more or less dumb shit.
Most of us grew out of this phase and became... well, we became nerds, but ones who were more or less well-adjusted and social, with our own friend groups, girlfriends, interests and hobbies that we actually participated in and not just talked about.
Nick was less lucky. He was perhaps the most stereotypical of us all, both in the type and depth of his interests and in his inability to meaningfully participate in them or to participate in society in general, really. Looking back, many things about him make much more sense if I think of him as autistic - not something you grow out of. Perhaps a diagnosis would help him accept this and adapt, but he had a dislike of any kind of institutions and doctors specifically.
I didn't mind though. He understood some of the things I liked, much more than the average person, especially a person my age. I used to hate electronic music, and Nick was the guy who gave me a CD with some early jungle and drum'n'bass, which was my entry drug.
Of course, the file called something like "jungle <date> <author>.mp3" was actually terrible early drum'n'bass, and the file called "drum and bass mix.mp3" was actually a brilliant jungle set - I'm quite sure it was Kemistry & Storm, sounded something like this, only without the MC and even junglier.
He also introduced me to some instrumental hip-hop like DJ Krush, whose music I sometimes listen to to this day, and Art of Noise, which I'm frankly not a huge fan of these days, but it served as a great counter-argument in the early-to-mid days of online nerdom when many otherwise smart people thought that all electronic music is stupid.
Of course I gave him music that I discovered as well. And we also exchanged videogames, old DOS games, new releases, but also some great shareware and freeware games often meant for hot-seat multiplayer, with up to four kids sitting around one keyboard, which was amazing fun for many hours. Being twelve years old buys with access to a CD burner, we natually exchanged other things as well.
The interesting thing is that despite his in retrospect likely autism, he seemed quite socially resilient. When he was I think 8 years old, his parents travelled from a poor, only briefly free and democratic Czechia, to a large city in Texas for a year, where his mother was to teach at an inner city high school through an exchange programme.
That year brought a ton of interesting stories, it was a shock for all of them, but that's a different topic. He returned with drastically improved English skills, prejudice against obese people and mild racism towards black people. Hey, don't look at me, I'm just telling it how it is.
The interesting thing is that racism was very much alive and present in Czechia at that time, but not against black people. Our history is completely different in that regard, so it was very common for people to say "I hate Gypsies, but I have nothing against Black people, Black people are cool." This changed later as we basically imported American racism as a side effect of importing more and more American media, though we still neither commonly practice nor truly understand (likely applies to me as well) this kind of racism.
As we grew up and stopped meeting twice a year, for new year's eve and during summer vacation, we lost touch. The last good thing I did for him was sending him an invite to my favorite local discussion board, which is to this day the only general purpose discussion board I know of that is much better than Tildes.
I think I hadn't seen him for at least a decade when a friend of our parents', whom we also knew well, unexpectedly died. We all met at a memorial party some time after the funeral, talked and played board games. Nick was invited to play table football, but couldn't join because for some reason he was losing the ability to grip things firmly and accurately.
It was quite new, so he nervously joked about it. Some of the other people present tried to get him to a good neurologist early through their connections (and failed). It took I think about a year until he got his diagnosis: not a rare, aggressive type of multiple sclerosis, but ALS, the thing with the ice bucket challenge, the thing Stephen Hawking had. He was 32 years old.
To this day I have no idea if there's any medication that can at least slow it down, because his personality and "social resilience" meant that he rejected all institutional help. This made it quite hard for his aging parents too. He hated having his hair touched but also later couldn't really wash it or brush it himself. He hated getting help in general, so he dressed himself for as long as he could, even when it took him two hours to put on a t-shirt.
This is all irrational and stupid. It was also all granted to him untill the very end, and so untill the very end he was allowed to keep his dignity in that way.
The sad part is that I only know all of this from second-hand information. I can't say I was indifferent, but when he was diagnosed we hadn't been in any contact for a decade, we weren't friends anymore. And through all that time I have been battling a chronic illness of my own that is unlikely to kill me, but that limits my life a lot, and when it doesn't, I have so many things I want or need to do when I suddenly can. I also live on the opposite side of the country, however small it is.
That said, of course I could have messaged or visited him if I truly wanted to. By the time I thought about it, he was barely able to speak and at that point I frankly didn't have the balls to do it. Of course, he normally refused to see anyone, he did not want to be seen like that, but he did sometimes accept people he knew from childhood.
A few months ago, he started having breathing problems. It may not have been the ALS progression yet but an infection, so despite his hate of doctors and hospitals, his parents managed to convince him to get hospitalized. He was just barely able to swallow tiny bits of food at that point, so he still had something like a breakfast with his parents, very underweight but without a feeding tube.
During the night he died, aged 38. If you know about ALS, you know there is some mercy in this. Dying at home with your family is always preferable, but with ALS that commonly means gradually losing the ability to breathe and slowly suffocating.
The saddest thing about Nick is that his life was marked by unfulfilled potential. He was not very socially competent and very impractical, but also quite intelligent and undoubtedly capable... of something. But he never managed to find the something. Worked a basic tech job for which he was not overqualified exactly, but certainly sharper than the job required (though I'm not entirely sure how he felt about it). Didn't really build anything for himself. As far as I know he never was with a woman despite almost certainly wanting to. I don't think he was particularly happy with his life either. And he never got the chance to change that.
Seeing myself in the slideshow of photos from his life during the funeral only made it more apparent how important our group of friends was in his life. The funeral took place in a neighboring town because the town where he lived only has a church next to the graveyard, not a secular ceremonial building, and he wouldn't want to have his funeral in a church. We all came, his family came, and so did his work colleagues, some of whom cried as well.
After the funeral we talked and ate and drank in his parents' flat. One that they will be forced to leave soon after probably nearly 30 years, moving into a smaller one and getting rid of some of their stuff. Through a slit in the door I saw a glimpse of what I assume was furniture and/or machines designed to make care easier, obtained despite his hardheadedness.
Okay, wipe your tears.
When I was a kid, Pornhub didn't exist. At some point we got Shoutcast, online radios and TVs thanks to which you could literally watch porn in Winamp, but before that me and my classmates sometimes watched a porn VHS one of us found in their parents' bedroom, and we also swapped CDs with porn. Those were hard to come by (no, don't say it), so each was precious, and during breaks in school we would talk about who's hotter, whether Amanda or Natascha. We were probably 12 years old when this started and I think we all turned out fine despite that.
Well, the one thing I got from Nick and never returned is a CD with his handwriting saying "P.vids .mpg open". When the three videos he burned on the CD didn't fill it entirely, he didn't finalize the burning process so that more could be added later, he was practical like that.
After remembering that something like this probably exists, I went through a box of my old stuff at my parents' house and actually found it. I still own an old laptop with an optical drive, so I put the CD in, but it failed to read. I tried cleaning the laser lens with a q-tip just in case because it looked dusty, and it really worked. VLC, one of the best free applications ever, naturally came (no!!) through as well.
The "last modified" date on each of the three files said December 19th, 2003. Obviously I looked at the videos, and it turns out that we were completely normal heterosexual boys with completely normal tastes. Not surprising, but nice to have a confirmation. One of the girls had Garfield socks, something that I remembered and laughed when I saw it so many years later.
This CD truly is the only physical thing that I ever got from him, as far as I know. I mean, there may have been some small things we exchanged as kids, but those were lost to time, whereas the CD rested among CDs of 70s French avantgarde and old Manowar albums.
I really don't need to explain how sad the whole situation was. But this one stupid CD gave it a funny and honestly kind of cool twist, which also made it easier to share this whole situation with various friends of mine who never met him, and who very much appreciated the absurdity, wholesome and morbid at the same time.
So now you can too.