What Is It In Your Life That You Just Can’t Walk Away From?
Posted by Michelle Moquin on April 28th, 2013
Good morning!
This is so awesome, amazing…and so cool.
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It all started with Date Night.
My wife and I received advice long ago that Date Night was the key to a successful marriage.
We had plans, but a friend came by and asked if we wanted to go to an art show instead.
That was the night I was introduced to Tempt.
When we got to the show there were posters and signs everywhere saying “TemptOne Benefit.” There was a palpable buzz about the place. I kept hearing people talking about this Tempt. Even the art on the walls by incredibly famous artists had his name worked into them. After being there a while and hearing about this Tempt, I finally asked “So where is this guy anyway?” The answer was shocking. “He lives in a hospital. On life support. He’s completely paralyzed. He has ALS.”
Tempt in his hospital bed. Photo credit: Mick Ebeling.
Since that night, my life has never really been the same.
The EyeWriter has been a journey, and due to the nature of ALS it’s a never-ending one. It started in 2008, and it continues on today.
I am often asked, “Why did you do it?” The first time I heard this question, I was caught off guard. I had never really thought about “why” I did it. I was always just focused on the “how” to get it done.
I boiled the HOW down to 3 things:
1. Singularity of focus.
We weren’t trying to create the next big thing. We didn’t have visions of revolutionizing the medical device industry. We wanted to help Tempt. One person. I think that had we gone in with visions of sugarplums and tried to help all people with ALS, we would have missed the mark of creating something that helped Tempt because we would have been so distracted. Singularity of focus kept us and keeps us on track.
2. Give it away.
Giving something away is a powerful thing, but I had no idea how powerful it really is. When we first created the EyeWriter in the living room of our house, it was decided that if we were going to make this thing to help Tempt draw again, then it had to be open source. Understanding the practice of open source within the software world did not prepare me for what this philosophy was capable of when applied outside of the world of programming. I can say, without a doubt, that the act of giving the EyeWriter away was one of the most important and powerful components of the project. We made a documentary about the EyeWriter journey called “Getting Up: The Tempt One Story.” (We want this story shared so we are giving it away at gettingup-thedoc.com.)
The open-source design of the EyeWriter. Photo credit: Mick Ebeling.
3. Beautiful, limitless naivety.
After our documentary premiered in Park City, a group of computer programmers approached us to tell us how much they enjoyed the film. They told us that since seeing our film they had been discussing amongst themselves why they thought we had succeeded. Their consensus? “If you had any f***ing idea how hard it was to do what you did, there was no way you would have done it in the first place.” They had discussed this idea amongst themselves and concluded that they should become more like us. “Clueless?” I asked. “Sort of… more like naive,” they replied. Turns out, our naivety was the key to us tackling the EyeWriter with brave abandon. We didn’t know that we weren’t supposed to be able to do it. We didn’t know that kind of thing doesn’t really happen in 2.5 weeks. We didn’t know what we didn’t know. And because of that, the entire team just did it because no one ever contemplated or considered the concept of failure.
Now the WHY.
Since this project has been ongoing since 2008, I’ve had some time to think about the “why.” Why I pushed so hard to make the EyeWriter for a person I didn’t really know at first. Why it was so successful. Why it seems to touch people in such a powerful and meaningful way.
I did it for my brother. I did it for my dad. I did it for my sons. It’s really that simple.
The day I met with Stephen and Ron, Tempt’s brother and father, it was like looking in a mirror that somehow, luckily, had avoided me.
I am a father. I have sons. I have a brother. I could not imagine what it would be like to not be able to talk to them everyday and ask them what they were thinking or feeling. Basic communication was nearly impossible for Tempt. That struck me as wrong.
Mick Ebeling demos the EyeWriter. Photo cred: Mick Ebeling.
Why did I do it? Because I don’t think anyone who has stared face to face with a reality like that can just walk away and say, “Good luck. I hope everything works out for you.” You can’t walk away from someone or something that hits that close to home. I had no idea how it was going to affect my life — or more importantly — how I was going to pull it off. But I knew I could not, in good conscience, just walk away.
What is it in your life that you just can’t walk away from?
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Readers: Big Kudos goes to Mick Ebeling, the inventor. Did you ask yourself the question? If not now, when? Blog me.
Happy Sunday!
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April 29th, 2013 at 6:45 am
This is what happens when someone touches your life…I have to think about this one bc nothing so big like this is coming to mind for me.
Alycedale, et al, OTW’s should never be held back by white men or anyone else, though if they want to strive and thrive…it hasn’t exactly happened in SA under Zulu rule: http://www.captaincynic.com/thread/25062/10-years-after-apartheid-south-africa-in-a-crisis.htm
Sure, it’s likely written and stated from white perspective but if you fact check, it’s all true. Could the Zulus, uncolonized have prospered on their own, and not only am I in agreement that if they wanted to stay uncivilized (and not prosper) and it should’ve been their right, you must realize that the location of SA (the route to the goods!) was open territory for running a mega-hub to the east. Why didn’t the Zulus develop it themselves and reap the benefits? Just questions, I’m not challenging you to a throw down of correct behavior of whites to OTW’s, we both know the right thing to do in that situation, just asking what you make of post-apartheid SA and how/why you think that is how things played out. Brits and Dutch glommed onto an wealth opportunity when it wasn’t being reaped by the natives of the land, seems like that’s human nature (along with the ‘give em’ anmd inch and they’ll take a mile’ theory of life), the colonization part and the warring parts are all man shit, they could’ve shared w the rightful possessors of the land, but since when are ‘men’ fair in love or war (see ‘signs of a cheater’ from yesterday).
Loved that post, too, it’s the ‘anonymouses’ of this world that think it’s ok to trail their sig other to see what they’re up to (checking email/phones/etc…is invasive though a spouse who has nothing to hide wouldn’t have it password protected either).
Bottomline: If you think he or she is cheating, it’s likely they are, though it could be your own jealousy and trust issues you need to get a handle on, and its your call there. I know my ‘trail’ according to your methods would not look squeaky clean for lots of people. & it looks like there’s a lot of revenge fucking going on as well. Hey, as Dane Cook, the comedian said, and I could not stop laughing, Dudes, if you’re going to cheat, keep in mind that you just gave your lady a ‘one free dick’ pass also, and that’s what happens…do what you will at your own risk…I know I have done this method of even-ing the playing field, is it immature and irresponsible, maybe but it makes it’s point clear, you cheat you don’t get the privilege of being my only mister and you don’t full allegiance anymore orfor a time anyway (that’s if you’re still kept around, and that’s for each individual to choose), period.
Luv, Zen Lill
April 29th, 2013 at 2:55 pm
Zen Lill I couldn’t get in yesterday to comment. But today I am trying again.
First, it is crude at best for those that enslaved a race of people to come out with a discussion of how that group is doing now that they are not slaves.
Really, Zen Lill has it occurred to you that the whites that wrote that article is claiming that jobs are down because of the socialism of the Zulus.
Those whites are juxtaposing lost jobs under “socialism” to the “jobs” their white masters were suppling them. Has it occurred to them that their “jobs” were slave positions?
If you are okay with that, then it would okay for some race to come to your local and give you and your loved ones “jobs” slaving for them.
Whatever happens in Africa should be the business of Africans, not white bastards. As I said if they had been dealt with as any homicidal criminal should be they would be hanging from trees with their bodies smoldering in the heat of Africa.
One more time to all whites what happens to Africa under Africans is between Africans and their choice of rulers. It is NOT for white hypocrites to interfere, especially since for over a hundred years they looked the other way while whites enslaved others.
Also Zen Lill, it is not likely any African would be too interested in the opinion of whites from a country that enslaved their people and bred them like animals for more than 150 years.
I often wonder if white americans know their history of evil. Slavery in America didn’t just occur for a few years. White americans enslaved Africans from 1776 until the early 1900′s.
My suggestion is if you have all that time to read about the plight of black men how about reading a number of popular and scholarly books about slavery which are stripping away whatever is left of the velvety romance of benign slaveholders presiding over docile slaves.
These are revelations of the efforts of the enslaved to escape or rebel and the punishments they faced that ranged from branding, amputation, slow torture and death.
Much of the bleaker information emerges from the faded pages of court records and antebellum divorce petitions. But among the newly published books there are some milder views expressed in the memoirs of planters’ wives, old handwritten diaries and slave narratives.
Much of the burst in publishing about slavery has come in the 1990s, with 53 titles published last 15 years. In previous decades, the yearly output of titles was less than 12 a year. But if your are seriously interested in learning about the cruelty of the white slave owners, then check out (Doreen Carvajal, Slavery’s Truths (and Tales) Come Flocking Home New York Times 3/28/99)
I cannot take seriously comments form whites who were exploiting the people they now claim to be making concerned comments. They are simply trying to make the claim that the exploited were better off when they were being exploited by them.
I would have thought an astute person like you would have seen through that.
April 29th, 2013 at 3:00 pm
Zen Lill, “if you fact check, it’s all true?” Whose facts would that be, Zen Lill? Are we supposed to believe that the very group that has an interest in lying about their evolvement and justifying their exploitation “facts” are true?
April 29th, 2013 at 3:01 pm
Zen Lill there is a difference from problems coming from within than the same problems caused by outsiders.
April 29th, 2013 at 3:06 pm
Zen Lill my people were “civilized” for 2,000 years while yours were still shitting on themselves in caves. Just because they used gun power to over throw out civilization and force theirs upon us does not mean Africa was uncivilized.
OTWs taught whites how to wipe their asses. We gave you everything you now have form medicine to law. Don’t believe the reconstruction of History by your race.
The Greeks did not invent science or law. It was in existence a thousand years before whites walk upright.
April 29th, 2013 at 3:07 pm
“Civilized?” Get a clue, whites were the last group to get civilized.
April 29th, 2013 at 3:12 pm
Zen Lill are you aware that if by civilized you mean the ability to enslave other races without a conscience, then your race is civilized.
If you mean the ability to accept the hostility of the American Indians and as soon as you have the fire power to declare them SAVAGES and round up and kill them like animals, then yes, you are civilized.
If you mean the ability to do anything despicable to other races and justify it with the kind of indifference your race displays on a daily basis, then YES, you are very civilized.
April 29th, 2013 at 3:17 pm
Zen Lill, if your race is so “Civilized” how come it took a black president to give you health care for its masses? How come it took a black man to emancipate your gays?
How come it took, a black man to bring your white women to the possibility of gaining equality with their white men?
Really, you need to educate yourself more concerning your on status vis a vis how “civilized” white men have been towards you as a white woman before you can claim they “civilized” my people.
April 29th, 2013 at 3:23 pm
Brits and Dutch glommed onto an wealth opportunity when it wasn’t being reaped by the natives of the land, seems like that’s human nature.
Excuse me, so you are saying that you are alright with foreigners coming to America and enslaving americans if they see an economic opportunity that the americans have missed in their own country.
You have demonstrated the issue most other nations have with white america. The refusal of whites to see past the obvious. That would be that it is NOT the right of any foreigner to forcefully enter a country and take advantage of anything in that country.
April 29th, 2013 at 3:24 pm
Whether the Zulus decided to take advantage of a section of their country or not is THEIR business. Not the business of greedy, explorative whites.
April 29th, 2013 at 3:31 pm
“the colonization part and the warring parts are all man shit, they..”
No, it is not “man shit.” It is white boy shit. They are the ones that use military power to take advantage of weaker nations.
Zen Lill, once colonization is part of the event, it becomes criminal not economic. You don’t get a pass to look over that and proceed to the next part of the event.
I,e. if a man forces you to submit to his advances, he doesn’t get to claim he showed you sexual moves that could improve your sex life, you know, things you could have or should have learned on your own.
April 29th, 2013 at 3:37 pm
Zen Lill what if black men decided that since white men weren’t satisfying their women as they could and rushed in to fill the gap by taking their women and showing them the pleasures they were missing?
Would you be asserting Black men and other OTW men glommed onto an sexual opportunity when it wasn’t being reaped by the natives of the land, seems like that’s human nature, I doubt it.
You were just doing what whites do all the time justifying the wrongs they have done to OTWs by claiming that it was an opportunity unrealized those they were exploiting.
April 29th, 2013 at 3:43 pm
Zen lill what makes you think whites had the right to force their way into someone else’s country take advantage of an economic opportunity there even if they decided to share the benefits with those of that country.
Does that mean I have the right to forcefully enter your property and make money from something you didn’t realize was available to your property. Oh and will it be alright if I share some of the bounty with you?
If that makes sense to you, then you can make the lame claim you did in your comment.
April 29th, 2013 at 3:53 pm
Make up your mind Zen Lill “If you think he or she is cheating, it’s likely they are, though it could be your own jealousy and trust issues you need to get a handle on, and its your call there.”
Look, your advice “”If you think he or she is cheating, it’s likely they are,” was good, very good. So why did you have to qualify it with that “jealousy and trust issues shit?
I wasn’t jealous until my husband made a slip and claimed he was with a co-worker who had called that night to ask him a question about a case they were working on together.
The jealousy came when I checked to see why he lied. I did not have trust issues, it was obvious that he had lied. If I did not check it would not be because I trusted him, it would be because I was too stupid to check.
Take a stand lady and stick to it.
April 29th, 2013 at 3:55 pm
Please tell me Zen Lill why getting even is immature. If that was so, what is justice all about, if not getting even for something a person was wronged for?