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ALS Sufferer Used Legs To Contribute Last Patch
krkhan writes "This is a little old, but seeing as it didn't make it onto Slashdot at the time, I think it deserves a headline now. Adrian Hands was suffering from ALS and had lost motor skills when he used his legs to type in Morse code and fix a 9-year-old bug in Gnome. The patch was submitted three days before he passed away."
You know what's important to someone when they continue to do it from their deathbed.
that picture of him in his chair working on the computer, I was hoping to see how he was managing to use his feet, but the picture didn't extend to his feet. any more descriptive pictures of the setup?
I work for the Department of Redundancy Department.
On one hand, I find it awesome that even in that state he managed to do something that productive and leave one (more) lasting trace of himself. On the other hand... I would hope that everyone would find something even more important to do during their last weeks than fix gnome bugs.
All of us like to think that the latest ten-core Xeon or whatever is the neatest thing since sliced bread, but stories like this remind us of what we often forget: the human spirit is the greatest hack of all time.
The family is in grief right now, and my sympathies are with them: but I hope they also understand the beyond-epic level of respect we have for Adrian Hands, and how he demonstrated right until the very end what the hacker ethos is all about. May we all live up to that standard.
Sheesh, would it have been too hard to spell out the acronym once?
Typical for you nerds. :(
I just can't post a goatse link in this post.... Don't have words to describe it.
Committed members like this, that sacrifice their time and effort, are what keep the open source movement alive and churning out functional code. So in the end, he left the world with a legacy of improving software for everyone else, doing what he loved, and cleaning up loose ends. Can't blame him at all.
There are so many who benefit from the community, and so relatively few who give back. So many people claim some excuse to not contribute anything to anybody without getting paid.
Then there's this guy.
I am honored to have shared a planet with him.
You do not have a moral or legal right to do absolutely anything you want.
ALS is Amyotrophic lateral sclerosis http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis It's a form of motor neurone disease, not a nice way to go.
Calling someone a "hater" only means you can not rationally rebut their argument.
I'm not sure what's more amazing, how he wrote the patch or the fact that the ticket was open for 9 years and the only person who managed to do it was someone who could barely move to even press the keys required to type up the patch.
As much as I'd like to say something teary-eyed, all I can think of is:
"And this is just how day-to-day GNOME development looks like."
45 5F E1 04 22 CA 29 C4 93 3F 95 05 2B 79 2A B2
Irony.
I can only hope that my last moments are as fulfilling. Still doing the things you love when the odds are greatly against you.
Thats because of nature of open source.
You really have to do it yourself, and not count on others.
Sometimes as a unexpected surprise some might help you, but don't count on that.
If we had a serious, concerted effort at life extension, similar to the "not because they are easy, but because they are hard" speech by Kennedy, curing diseases like this would be easier. We really don't understand our biology and as such have to content ourselves with the empricial, slow and piece-meal approach that is modern medicine.
They both had ALS yes; but 'retardation' in the medical community refers to a psychological problem (http://www.assessmentpsychology.com/iqclassifications.htm), and ALS evidently does not impede mental functioning.
Gnome is trying to bring open source to the disabled. there is the cool window managers for the able bodied users but gnome does try really hard accessabilty wise. Several other gnome developers have died of their disabillties over the years.
... the ticket was open for 9 years and the only person who managed to do it was someone who could barely move to even press the keys required to type up the patch.
That's why it took so long.
16/M/Orlando
My family and I took care of my father-in-law as he declined and eventually succumbed to ALS in 2004. Every tiny act was monumental, even going out and getting a haircut, or a shaving him, or eating.
I can tell you that motor is the ONLY thing that goes. Pain stays, mental function stays, it is a pretty hellish existance for the sufferer. And something they could do just fine today - gone tomorrow... no predictability to it. And then there are painful muscle spasms as things go wrong. until they finally aren't able to breathe any more and die. I'm glad the mentioned coder was able to find a way to keep going, and put their mark on things.
The main medication at the time (@ $900 a pill), only worked for 18 months at which point your symptoms would be identical to as if you didn't take it - so it slowed things down enough to buy you time to get your affairs in order, and then all the progression caught back up. I don't know about current meds.
What's bothered me is that there is VERY little understanding of the disease, and how you get it - there are risk factors (being in a war is one, so is eating bats in guam). The VA had a HUGE list of questions that sounded like they were just grasping at statistical straws.
meh
Important is a relative term. It's different for everybody. If you're doing something you honestly love, that's not a bad way to spend your last few days.
Weaselmancer
rediculous.
I for one didn't even know you could enter non alphanumeric characters in Morse code. I wouldn't even begin to know how to even do a CR/LF in Morse, for that matter.
Damn_registrars has no butt-hole. Damn_registrars has no use for a butt-hole.
One of the best stories I have read on this site so far. As one of the previous posters said, it's all about the human spirit. May he rest in peace.
ALS evidently does not impede mental functioning.
Clearly, as this was a Gnome patch, not an EMACS patch.
My father is suffering from the final stages of MS. Every day is a struggle, he's lost the use of both legs and one arm. He can barely use his one good arm but he loves searching google for information using an iPad I gave him, one finger tapping when he has the strength. He's completely bedridden, I've tried to comfort him as much as possible. He loves watching TV most days. He was in the Air Force and quickly became sick afterwards, it's been about 25 years with him watching him degenerating slowly.
I believe this man Adrian was doing what he loved. You have no idea how much of a great thing it is to be near a computer, and actually using a computer and the internet to a severely disabled person. When you are stuck inside all day and only have your immediate family around, it can be such a mental drain that the internet and a connection to others is a great way to keep in touch. What's really not surprising is that Adrian was writing patches to help people with disabilities.
That is something that's severely overlooked, imagine not being able to type, let alone move a mouse. I thank that man for helping people (even if it's a few who use gnome), he on his last days perhaps comforted someone else in the same shape he was in.
Adrian Hands and his family are a great example of why free software is a better way to celebrate and promote human achievement. Beyond the free access and the practical benefits, in the end, the most important thing is the development of community and freedom to participate and engage with making the world a better place. The freedom to pursue what you love, including solving small problems one at a time, to relentlessly make computers better for people with disabilities. The freedom to develop the skills and initiative to hack together devices that let people write software with their knees.
The most important qualities of free software and hacking ideologies are sometimes forgotten by their own communities and it always is hard to communicate them to others. This seems a good indication of just how sick and dehumanizing the "regular way" of doing things really is and how important it is to continue to reach out and demonstrate the beauty of hacking and free software, starting with just doing what you love.
Nine years?
It must be a miserable life you live.
The patch was reverted in Gnome 3 because someone found it useful.
Dewey, what part of this looks like authorities should be involved?
That he could do that. Of course ALS sucks. (Which I would be familiar with since I took care of my mom when she was dying of it.)
Did you know 80 to 90% of the moderators on slashdot wouldn't recognize a troll even if one dragged them under a bridge.
She has ALS
What's that?
Amyotrophic Lateral Sclerosis
What's that?
Have you ever heard of Lou Gherig's disease?
Most people say oh that's horrible at this point. Actually in one case someone wasn't familiar with Lou Gherig's disease. (Admittedly that was understandable since the fellow was an immigrant. He was familiar with Stephen Hawking though so I mentioned it was the disease he had although I'm not sure if that's technically correct.)
Did you know 80 to 90% of the moderators on slashdot wouldn't recognize a troll even if one dragged them under a bridge.
Really? It took 9 years for someone to do this?
"I believe in Karma. That means I can do bad things to people all day long and I assume they deserve it." : Dogbert
What bar? This ain't a contest, there's always going to be someone who's better than you.
Personally, I think the only person you are in competition with is you yourself. Are you better than you were a year ago? Then you win.
We used to have a Bill of Rights. Now, with the rights gone, all we have left is the bill.
I stand corrected.
One should never blame conspiracy for what stupidity readily explains and never be surprised at the extent of ignorance in the general population.
Cheers
It's Gehrig, not Gherig.
Also, it's Gandhi, not Ghandi.
Where else could be be but hacker heaven?
... because you might need it later.
Gratuitous plug for a friend's CW site
Wow, what an inspiring story! Someone who worked to help others, to the very end. My congrats to him, and my condolences to his family.
- David A. Wheeler (see my Secure Programming HOWTO)
I'm in competition with my self from a year ago. And yes, in a year, I will look back at this moment and probably be "losing" against my future self. But that's ok, I kinda hope I lose against my future self.
We used to have a Bill of Rights. Now, with the rights gone, all we have left is the bill.
Ahhh, the brain's ok but my fingers get my mords wixed up. Thanks.
It's appalling if he had to go to India for treatment because of intractability of the US healthcare system.
play is nothing but work you enjoy doing
most people posting on this site understands what it means to hack/ program/ factor/ compile/ etc. out of sheer fun. to a lot of us, its pleasurable play. if you find computer development to be a dreary chore and nothing else, you need a new career, assuming you aren't already a surfer or dog walker who enjoys posting on slashdot for some reason
i completely understand what motivated adrian, and were a debilitating disease to claim my life, i'd be honored to stand in this great man's company and leave this world playing (not working) the same way
there's that famous dylan thomas poem with that line "rage, rage against the dying of the light." it is a completely valid rage in the face of death to do what in a year of your healthy life you would consider routine: "take that ALS, i'm going carry on, as if you never touched me." a nice assertive middle finger at ALS, good for him! that's the way a strong man leaves this world
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
I'm guessing that it DOESN'T stand for "All Ladies Shaved" in this instance?
Welcome to the wonderful world of Linux!
Did you no that there is no GUI application for configuring multi-button mice? That is, any mouse with more than 3 buttons. How long have such mice existed?
It's dumb to call it ALS. People are much better at recognizing people than acronyms.
Most people say oh that's horrible at this point. Actually in one case someone wasn't familiar with Lou Gherig's disease. (Admittedly that was understandable since the fellow was an immigrant. He was familiar with Stephen Hawking though so I mentioned it was the disease he had although I'm not sure if that's technically correct.)
It is. It's interesting that a physicist is more notable than a baseball player, though that might be due to him being an immigrant.
Stephen Hawking has been diagnosed with ALS. There is some doubt, as the disease is usually terminal within a few years, but Dr. Hawking has survived more than 30 after diagnosis (I believe he was diagnosed at 25, he's 69, that's 44 years). The diagnosis does still fit with ALS, but his case is unique.
It's like they have ALS or something!
you seem to know so please tell us;
i just opened a jpeg by clicking and selecting Open with image viewer, and then used help about the to check that it is EoG, it was ver 2.23.0. But could not find the copy function anywhere, you can click in the body of the image and do what i guess is X drag 'n drop, but where is the single menu item discussed? what action executes the big of code?
cheers
Hawking was diagnosed with ALS before motor neuron disease names became more distinct. Today, what he has is called Spinal Muscular Atrophy, stage 4. ALS is a disease of both the upper (brain into spine) and lower (spine to muscles) nerves. SMA is a purely lower motor neuron disease. The opposite is Primary Lateral Sclerosis, a motor neuron disease of just the uppers. We MNDers stick together, so he's still in our club.
For both of you:
http://www.google.com/search?q=ALS+vitamin+d
http://www.alsforums.com/forum/general-discussion-about-als-mnd/9472-vitamin-d.html
http://www.vitamindcouncil.org/treatment.shtml
http://furtherglory.wordpress.com/2010/03/15/als-aka-lou-gehrigs-disease/
http://www.drfuhrman.com/disease/Other.aspx
http://www.drfuhrman.com/library/foodpyramid.aspx
http://drfuhrman.com/library/article16.aspx
And good fats like Algal-based Omega-3s (also avocado, and nuts and seeds if not allergic):
http://www.alsforums.com/forum/archive/index.php/t-5979.html
Good luck.
A 21st century issue: the irony of technologies of abundance in the hands of those still thinking in terms of scarcity.
Thanks for adding that. Having kids with issues in other areas (not motor neuron directly) I understand the need for clarity.
Cheers
Sadly, his bucket list remained unfinished...
...
...
1 - Make love to wife: check
2 - Say goodbye to family: check
3 - Farewell party with close friends: check
4 - Give to charity: check
5 - Write memoirs: check
86 - Go to Disneyland: check
9032 - Fix Gnome bug: check
9033 - Make peace with Mother-in-Law:
When our name is on the back of your car, we're behind you all the way!
http://www.fsf.org/news/2010-free-software-awards-announced
Rob Savoye, TOR and a special mention to Adrian Hands
I chaired the committee that decides this award and am glad to report that the committee was unanimous in deciding to award Adrian a Special Mention
The awards committee was - Suresh Ramasubramanian, Peter H. Salus, Wietse Venema, Raj Mathur, Hong Feng, Andrew Tridgell, Jonas Oberg, Vernor Vinge, Richard Stallman, Fernanda G. Weiden and Harald Welte.
May his soul rest in peace
--srs
Adrian Hands wrote the patch about two months before his decease, not three days as you claim here. It is still very remarkable but let's keep the sensationalism away from this news.
Claudio
It's dumb to call it ALS. People are much better at recognizing people than acronyms.
That is just plain lazy, It really doesn't take that much effort to type "als define" into Google to get a useful response in the first two results. You don't even have to use the "shift" key.
Sheesh, would it have been too hard to spell out the acronym once?
Typical for you nerds. :(
It's like HIV or SARS. It's a disease that's better known by its abbreviation than by actually spelling out what the initials stand for.
Well, at least among people who aren't nerds.
I feel lucky to have known Adrian personally. I began working with him in 2000. We worked in the same department were he was a java, perl, everything else you may need programmer and I was a sql/, javascript, html web developer.
I remember all he went through trying to find out what was wrong (I had suffered a spinal cord injury years ago that left me a partial paraplegic) so I think he felt I could understand what he was going through.
He rode his bike to work almost every day (even after his diagnosis and initial disease progression). He was smart, and funny and a dedicated man. I hope I can live my life with as much enthusiasm as he did.