Man with ALS writes patch for Gnome using morse code (with touching story) | Hacker News Reader

Man with ALS writes patch for Gnome using morse code (with touching story)

bugzilla.gnome.org

543 pointspufuwozu32 comments

Kind of humbling, no? I've got plenty of excuses why I don't contribute more to OS projects, but when a guy bangs out a patch with his knees using morse code while dying of ALS, they all suddenly seem pretty lame.

My hat's so far off to this guy, its on the floor in front of me.

Touching, but at the risk of being karma-annihilated: what else would be be doing?

He's probably sick of being useless, can't get paid to do anything (and wouldn't want to be, it'd be pity money), and wants to do something both productive and helpful. So he found a way, has supportive family that helped make it possible, and has a huge amount of time in which to do it. If I had that much time on my hands I'd be fixing a lot more than I am now, when I'm spending time with my wife / friends / at work.

Actually, I spent a year at death's door and I agree with Groxx. Some folks who are sick do not have the ability to do something like this. But lots of them spend time on email lists, trying to give support to others as one of the few useful, gratifying things they are still capable of. I went back to school (part-time and mostly online) and, while still very ill, began growing some little websites (which originated as emails on some email lists). Finding something, anything to do to occupy your mind while your body is a hellish prison of endless torment is blessed relief and sometimes the only reason to not commit suicide. Different people handle it differently, but people who are dying don't typically do stuff like this to be remembered heroically. They typically do it to still have something of a life in spite of it all.

The main text for my class on homelessness and public policy was a book called "Tell them who I am" written by a man dying of cancer. He was already doing volunteer work with a homeless shelter and when it became clear he likely wouldn't live, he decided to do something more satisfying with his life than just keep showing up for his job. So he quit and spent more time with these homeless women and wrote a book. It is an amazing book. But the guy didn't do it to be all heroic. He did it because he valued the experience more than showing up for work and wanted to grab a little gusto while he still could.

Anyway, I upvoted you for all the good it did. It went right back to negative 4 before I could hit reply. Sigh.

Nah, I figured it'd be doomed, it's a touchy subject. But I'm not here for the karma anyway, so no loss. That's pretty much exactly my point, though a bit more tactfully made :) Thanks for the input! It's appreciated!

Dude, you probably haven't seen anyone close by suffer from a debilitating disease and pass away in the recent times. It is painful for everyone involved and it takes tremendous amount of dedication to work on something like gnome. He could have said who gives a shit.

No one dying from a disease ever thinks that 'Oh, next week is gonna be my last, let me enjoy it'. Every day is a struggle trying to find something that might help you live better or longer. Working on an OS project is the last thing you would think of if you don't believe it passionately.

At which point did I state the opposite of any of that, or even imply it? You're agreeing with me. "No one dying from a disease ever thinks that..." is precisely my point, instead people look for things with meaning.

Like contributing to community projects.

My point is more that people go all hero-worshipy when someone does something cool when they are dying, and take everything out of context and set them on a pedestal and it's ludicrous. All rationality goes out the window. "... they all suddenly seem pretty lame" is a flawed way of looking at the world, a loss of context, and it helps nobody.

the emphasis in the original comment was on bangs out a patch with his knees using morse code not on the fact he was dying.

and yes "I am not dying so have to spend my time at work" is a lame excuse in relation.

When you are dying, All rationality goes out the window. Working on open source project is the last thing they worry about.

Let me ask you something. Whom do you respect?

>When you are dying, All rationality goes out the window.

This is ALS. A progressive, multiple-year disease. Via Wikipedia[1]: Death usually occurs within two to five years of diagnosis.

I've met plenty of rational dying people. Except when it comes on extremely quickly, most everyone I've encountered or heard about has been more rational than the people around them, not the reverse. People don't suddenly become invalids when they have to face their own mortality.

[1]: http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis#D...

> When you are dying, All rationality goes out the window.

Are you "not dying"? I ask because I've never met anyone who wasn't dying. Yes, most of us don't have a good idea as to what the attending MD will blame or when, but nevertheless, the vast majority of us are dying and know it.

A certain theoretical physicist and cosmologist would disagree.

That's what he'd be doing. Spending time with friends/family/ or bowing to the pressure that I know I'd face at work to close all the loose ends I might leave behind.

He saw a problem that needed fixing that would benefit all of us and took some of his short time to fix it for us. It was hard for him. Really hard. Hell, he could have just watched Survivor and taken it easy. If anyone in all the world deserved to, it was him. But he didn't. And so he's my hero.

>That's what he'd be doing. Spending time with friends/family/ or bowing to the pressure that I know I'd face at work to close all the loose ends I might leave behind.

Be practical. They aren't going to spend all the time he's around and awake with him. ALS isn't exactly fast.

Yes, lots end up wasting their last times with TV, and yes he did something hard and helpful and that's great. But lets not kid ourselves about how oh-I-should-do-that-too, my-excuses-are-lame. Different situations, different possibilities.

Indeed, my hat is .. in the basement, for this guy.

Once a hacker, always a hacker. What an amazing story! And to think he was coding raw GTK, which is a nightmare even with vim+autocomplete. Sample from his patch:

    image = eog_thumb_view_get_first_selected_image(EOG_THUMB_VIEW (priv->thumbview));
    g_return_if_fail (EOG_IS_IMAGE (image));
    file = eog_image_get_file (image);
    filename = g_file_get_path (file);

Meh. I would disagree; It's very subjective.

Sure it might look very verbose on first sight, but most of the seemingly excessive text is just there since it's C.

You get used to it, and the GTK+-family API:s are generally very well-designed, very orthogonal and predictable. The verbiage "falls away" from your sight after a while, and you just do what you want done.

i think he meant it in the context of the long function names really making a difference when you have to tap each character out in morse code with your knee.

Ah, good point of course. For that reason, I really hope he used some kind of completion in the IDE/editor.

>"long function names really making a difference when you have to tap each character out in morse code with your knee"

I wonder if he did or if he shorthanded them and used find+replace?

This is so humbling. It also makes one wonder what are good input tools for people with handicaps. I can think of two projects: (i) Dasher http://www.inference.phy.cam.ac.uk/dasher/ discussed here http://news.ycombinator.com/item?id=2142934 and (ii) Emacspeak http://sourceforge.net/projects/emacspeak/ authored by T.V.Raman who himself is blind.

My family has a history of retinal detachments, and I have a tear myself. But I have never given it much thought, because these are always things that happen to others, not you.

Are there input devices based on Braille, wondering if it would be faster ? As an aside, there used to be code in the Linux kernel which on certain kernel panics would communicate the error message through Morse code using the integrated speaker.

Edit: About Braille, I was thinking more in the lines of a small 6 button or a similarly limited device.

From some of my earlier investigations, handicapped computing support is astonishingly bad and expensive. Largely because many things are near one-off limited-use solutions that can't be re-sold... but nothing is ever modular or adjustable or could be tweaked to be used in multiple situations anyway. The DIY crowd for such things, meanwhile, keeps hacking up things like this for almost no money.

And it only gets worse once you come to software. Hardware interfaces have a general communication format - websites do not. Applications do not. Almost nobody makes software with hinting for assistive devices, despite tools and standards existing. I suspect it's mostly because it's extra work, and doesn't (usually) significantly help to pay the bills when added.

If you mean an output device based on Braille, then yes, you can get a Braille terminal, or "refreshable Braille display" (http://en.wikipedia.org/wiki/Refreshable_Braille_display), which displays a row of characters via Braille, and can indicate the cursor position as well. That would make it possible to interact with the command line. They appear to cost about $5-10k, depending on whether you want a 40-character or 80-character row of characters.

You might also look at http://live.gnome.org/Orca , which helps you interact with graphical programs via both speech and Braille (and magnification for as long as you continue to have some vision).

As far as "input devices based on Braille"; you can probably get a keyboard with Braille lettering on the keys, but if you can touch-type you don't really need the labels anyway.

Hope that helps.

Link to his patch applied to the eog.git repository: http://git.gnome.org/browse/eog/commit/?id=EOG_2_91_6~42

Can't wait until I get the fix through Ubuntu's update manager so that I can tell the story behind the "Copy image" menu item to my family and friends!

I especially liked the GNOME member's response. Classy and dignified.

My first job out of school was writing code at ALS.net. It was started by Jamie, a mechanical engineer to find a cure for his brother Stephen, who had just been diagnosed (and was eventually turned into a movie: http://www.westcityfilms.com/smsf.html).

The horrible thing about ALS is that your body deteriorates, while your mind stays 100% fine.

Stephen was physically in pretty rough shape by the time I started. He loved playing video games with his brothers, so Jamie made a little mouse-like device for Stephen that also allowed him to mimic keypresses.

Once a week, we'd all hop online and play Diablo together. It was interesting getting to know Stephen this way - he was barely able to talk when I first met him, but he could type using Jamie's device.

(Aside: Ben, the third brother, now runs PatientsLikeMe.com, a support community for people with diseases like ALS).

If you aren't familiar with ALS, you might have heard it under the name Lou Gehrig's disease.

http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis

Awesome. We're naming our 4th son (currently 20+5 weeks) Adrian. I loved the post and the picture. Sounds like a great man RIP.

There's a mention his father went to India for treatment. Is that because they are particularly good at treating ALS, or is it a health insurance issue?

But it takes incredible willpower to continue doing anything in situation like this. My hat's off.

Can't speak for that question or this case specifically but I was sick (gastro) in India a few years ago. My now-wife went off to find medication. The pharmacist had her describe the problem and put together a bag of tablets and electrolyte drinks. She asked how much. He said "30." She said "30 dollars?"

He said, "No, rupees."

I think that was less than 70 US cents at the time.

Respect! Now there's a mantra:

ACCEPTed COMMITed RESOLVEd

Someone who doesn't give up. +1

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