From: van Soest, Garmt
Sent: Wednesday, April 29, 2015 23:13
Subject: ALS update: Everything ready from the dark side of the moon…
A nice bit of trivia to start your day: Which movie from my birth year does the line in the subject come from? Don’t get confused with the 1973 Pink Floyd album, not even Close. Neither is it an Encounter with Google that you need to answer this. Just keep guessing, your Third guess is bound to be right. Come on, be Kind, give it a go, the answer to this riddle is right in front of you.
My brain has time to think of stupid little riddles like these while it waits for my eyes to hit the right letters. Riddles that, given the average age of Accenture employees, will most likely be solved by no-one, but hey, I am sure your brain is tickled, and if you are still eading, hello!! and welcome to another update from the ALS fighting front!
It has been quiet from the ALS fighting afront, that is, from me to you. The battle has been getting more and more personal, and I figured you weren’t necessarily interested in the behemothic Brasil/Kafka-esque bureaucracy I had to fight for six months to get the right electric wheelchair. I say this in full sincerity, starting an investment fund is easier than working with care-companies.
Which brings me nicely to a professional update. Qurit Alliance! Our investment fund is still gaining momentum. Five members of the Qurit foundation, four scientists signed up for the scientific advisory board, three seed investors, two fund management companies, one fund manager with the right experience and skill set, about to start the investor roadshow! I know, I wish we could announce the first actual investment, or the first fifty million, but we will get there, even if it is not yesterday. In fact, we are getting there. I hope to share an update soon that is guaranteed to impress you. Stay tuned!
The other initiatives have grown up and left the nest. For instance, colleagues from NY will participate in the Walk to defeat ALS again, as well as join the New Amsterdam City Swim. Michael Teichmann is still supporting MinE, and colleagues from our office in Washington are telling their kids about it. Ronald Krabben is still helping Prof. van den Berg with TRICALS. Bob is getting Dutch swimmers ready for the Amsterdam City Swim. There is now an official mailing list, see cc, maintained by timothy.long. Et cetera, et cetera. I just finally can’t in good conscience claim any credit for these activities anymore, as my ability to meddle, I mean, contribute, is somewhat small these days.
I can move my eyes, and with that, the world, but I don’t have a lot of other functionality left. It feels like I am slowly being frozen, and the thing I had not counted on, is that it is actually pretty hard on the brain as well. It is functioning as it was, but adjusting to such a limiting interface, as well as dealing with all the changes that a lifestyle without exercise, booze, travel, etc brings. Kudos for prof. Hawking, who just kept working throughout his ALS, but then again, he had fifty years to stomach what took two years with me. And I type a lot faster than him, too, so actually…
Speaking of cosmology, it is why I picked the subjectline like I did. I feel a bit as if the whole adventure of ALS launched me, right off into the stratosphere and beyond. I got to soar, fly, see the world from a perspective I had never seen before, enjoy the warmth of the sun and the momentum of the launch. Now I am travelling through cold space, freezing, eclipsed every now and then by a planet or something, which is why I sometimes take really long to reply to email or fill my timesheet. Gravity still binds me to earth, where everyone is still merrily living along. My transmissions are still received, sometimes a colleague visits by means of looking at me through a telescope. Or, that is what I imagine it feels like to them if they realize that inside the heap of body parts they are addressing is the… brain of the quirky energetic guy that kicked their asses in a discussion on that one project.
Wait, wait, don’t run off, c’mon. The thing is, we have no idea how this story will end. I am still open to any possibility, as long as it is a happy one. And so far, I am more happy than not. We’ll see if I vanish into deep space or, maybe, I reach a zenith, and turn into a comet, or perhaps a meteorite, heh! You might not be rid of me just yet.
One thing that helps to stay close to Accenture is to be in touch with the type of information that normally doesn’t traverse email. Yes. I am asking you to update me on office gossip, or perhaps just tell me how your day was, once or twice a year. Doesn’t need to be long, as long as the gossip is good, I will feel a real part of Accenture, still.
Ok. I have said more than enough. One final rant and I’ll sign off.
With talking and moving becoming somewhat impossible, I found myself retreating into the type of hobby/work I used to have at the point in my life where I was as clumsy in interacting with other people as I am now. That is, nerd around with technology. We try to hide it, but the ugly truth is, scratch the thin layer of good behavior off of a tech strategist, and you will find a nerd. I got the idea this weekend to draw a network/systems architecture map of my home setup. Now, I used to do this at several large ISPs in the early 2000’s. These companies had gone through so much M&A with subsequent rigorous rounds of layoffs that they had no idea what they were running and hired us to audit and find out. And, I tell you with a strange mixture of shame and pride, the resulting map of a conglomerate of various legacy network meshes that was the proud backbone of some major telco, it looked a whole lot more simple than my home setup. If you are one of the colleagues that visits me, and I ask you to put up some Thom Yorke, right after you connected to my wifi and found my streamer with Spotify Connect, which is neat because it separates control from source, giving the sound quality of my streamer while allowing me to control Spotify with my eyes using the desktop client, expect me to sigh as you have to use the bubble upnp app running in the oracle virtualbox emulating android, telling my streamer to get the content from my plex home server, because as we all know, Thom Yorke might be the best musician in the world, he is not on Spotify, so we have to stream the FLAC straight to the Cambridge Magicstream, right after you turned down the volume with the Harmony app on my phone. And that is something as simple as music. Wait till we get to printing! Let’s just play a record instead. And if you are of the average Accenture age, a record is a black flat round thing that, long before you were born, was the Spotify of its age, just without a shuffle-button. Oh, the stories this old man could tell you!
Thanks for reading, ‘till the next,
Garmt van Soest
“Kicking ALS in the balls”
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.