——– Original message ——–
Well, strictly speaking, it’s just my DNA that’s malfunctioning, not me, but hey. Warning: E-mail-etiquette breach ahead – long mail, personal content, difficult sentences, sent to a lot of people. I don’t intend to make a habit out of this but I figure I’d like to keep you up to date. Apologies if it’s considered spam.
On a professional note.
I originally thought – I’ll take a few weeks off and then let’s get back to normal. It’s turned out a bit different than that. I’m back at work (partially), I do some client work but thanks to the generosity of Accenture most of my energy is spent on leveraging everything we have in our portfolio to, well, kick ALS in the balls, to put it as eloquently as I can. Accenture (i.c. Gert and Manon) gave me freedom – free of chargeability targets, deadlines, free of most financial worries, etc. Wow. Free to spend the rest of my professional life as Gert and me see fit. I’ve checked with my revalidatiearts (who sees hundreds of ALS cases) and she was as flabberghasted as I was. I really can’t express my gratitude so I won’t try here. I share it with you as I believe you deserve to know you work for a company that makes the right decisions in tough times.
On kicking ALS in the balls.
A few weeks ago, I wrote “It’s time to get serious” to the friends and colleagues that are involved in the fight against ALS. Or, perhaps better to see it as the quest to improve the machine that solves the puzzle of ALS. Yes – with passion we’ll make that machine greater! You’d figure this matter was serious enough to begin with, but over the past weeks, enough pieces clicked together to create an actual real chance of making a real difference. The plan that we are putting together is not just the most interesting project I’ve ever worked on, it’s not just fun to do, it’s not just for the greater good – there’s a real chance that we get to a cure in my lifetime. A chance only marginally bigger than spontaneous world peace, but still, it’s a possibility, and a meaningful one. It’s exciting, all the things we’re doing: Ronald Krabben is championing a project that will help shorten the time it takes for ALS drugs to get to market. Myriam and Ron are getting involved in the largest DNA research project on the planet – Project MinE, finding the cause of ALS. Zafer and Jan Willem are doing market research to find out how money flows in the world of ALS. Edde and Lucas will help a small starting company transform into a leading player in the world of ALS – with some help from Gib Bulloch this is bound to succeed. Put all this together and you get a disease that’s scared and sorry it has picked this particular guy to kill. We still need all the help we can get so please drop me a line if you’re curious. I promise you the most interesting and impactful role in your career if you’re brave enough to work with me on this.
On a personal note.
I’m doing well, symptoms are slowly progressing, mainly my voice deteriorating. I’ve lost the ability to whistle and I’m guessing that I will have speech for another 5-6 months, so you’ll see me around for at least that long (but it might just as well be more, or less). I’m not sure if/how I’ll continue work once I reach the Stephen Hawking-stage. Right now the biggest pain is being tired all the time. We should all sleep more and I do but it feels wrong – life is ticking away. I have much less energy and with the extra work that being a patient brings, and with the time I’m taking to create memories for my friends and family to remember me by (actually, spending time with a small clone of yourself (some people call such a thing a “nephew”) isn’t as horrific as I feared it to be), I barely get to spend about 20 hours a week on what I now consider work. Luckily I spend each and every waking minute enjoying life as hard as I can.
On interacting with me
In my first mail I asked you to treat me like a normal person. Or at least, like you used to treat me. I have to say – you’re all doing fine so far, which is a big blessing. Thanks. I’ve been saying that last word so often and it’s still the only right one to use – thank you.