ALS is still here, but so am I
From: van Soest, Garmt
Sent: Sunday, November 23, 2014 21:20
Subject: ALS is still here, but so am I
If you don’t know who I am or why I am emailing you, let me tell you an anecdote. The other week, someone asked me for my CV. With the arrogance normally reserved for young Analysts, I realized that the best answer I could give at that point was: “Just Google my name, that is easier.”
The last time I wrote to you, just after the birth of our daughter in July, I was still able to walk to my car and drive safely. That is, drive as I usually would, and whether that counts as safely is a point of much debate, but I digress, as I always do. Four weeks after that I was in a wheelchair, no longer able to drive or walk, buy very able to watch the Amsterdam City Swim. Nowadays I am pretty much helpless; I do not yet need 24/7 care but the list of tasks I can do independently shrinks with each last bit of muscle that gives in to whatever is happening in my motor neurons.
I had the intention to stay active and be at the office regularly, but the disease overtook me, and since Accenture is not a spectator sport I have not been around anymore. I am in touch, every now and then I email or see colleagues, or I receive a card or a gift, letting me know that I am out of sight, not out of mind. I keep on noticing how warm an organization our company is. I receive positive energy and love from ten corners of the world, and that gives me a lot of peace.
I was like you, dear reader, on top of the world an loving every minute of it. And if you don’t love every minute of it, hey, I don’t want to preach, but just imagine me for a second, as you type at your keyboard, whispering over your shoulder: “I was faster at that than you”. Or imagine me the next time you take those creepy steep stairs to the 14th, running past you by taking three steps at a time, so unprofessional in my hopeless attempt to undo my lateness for the next meeting. Or imagine me, the next time you are driving too fast, whispering over your shoulder again: “I was faster at this, too”. Or imagine, the next time you are presenting in front of an audience, me whispering over your shoulder: “Are you noticing how great it feels to be standing up?”. Or, if you want, imagine punching me in the face, because all that unwanted shoulder-whispering is really annoying, and notice how satisfactory that feels, and grin. Imagine, anyway, John Lennon recommended it. You get what I’m preaching at.
The news isn’t all bad though, in fact, there are plenty of good things. Like you, I still take pleasure in pushing myself. My challenge is no longer as abstract as cutting a gazillion dollars of cost out of the operation of some huge corporation to fulfill their mantra of ever increasing stakeholder value. My challenge is to insert a joke into a conversation, when I have to type that joke with the right side of my left thumb at one letter per two seconds, which is a very interesting trick where you have to balance timing, length of wording and dexterity in finding the speak button before the conversation has moved back already to Syria and your remark about that magician falls flat. Or, your challenge might be to seek a thrill? No longer do I need to tire myself with parachutes, bungee jumps or expensive diving holidays to get excited; adrenalin floods me when I try to balance myself and find out that the muscle that held me upright yesterday now no longer works, giving me exactly one second to find a solution or mumble for help before I fall. I say this without a trace of irony or sarcasm. My challenges now are no less interesting now than those I had as a senior manager. Having said that, I am still not entirely certain I would recommend ALS, unless you want to lose weight so badly that you are really desperate. Ha!
And more good news. The reason, or excuse perhaps, for sending out these ramblings was originally to share updates about the fight against ALS. I just have a few projects left that I am actively involved in. Project Xavier, project MinE and Treeway are all progressing very well. Xavier saw huge attention from the press, raising the profile of the disease even further. Philips and Accenture are deciding if and how to market the product. In October, we had the international kickoff of MinE; I think we had organisations from fourteen countries in one room! Nadeem de Vree is still supporting the lead researchers at the UMC Utrecht. The Accenture Innovation Awards and the CIO day paid/will pay attention to the projects and to Treeway. Finally, for the Qurit Alliance, our ALS investment fund, we have made some big steps. Two fund management parties have been downselected from more than forty candidates, ensuring that we have the right track record, equity expertise, market position and investment experience committed to the initiative. Two is also the number of confirmed cornerstone investors. Two is also the number that, taken to the power of three, is my lucky number, so the coincidence is uncanny!
Well, time to go. I would say a lot more, but it would come down to the same and I hate to repeat myself. I remain your colleague, even if I won’t get to see you or work with you again. This isn’t goodbye, it is just me repeating myself that I have had such, such an excellent time working with or for or just in the same company as you. Who knows, the future might hold some surprises for us. I will be fighting for a while to come, but as you can read the fight is getting more and more personal. Yeah, if I was ALS, I would try to get rid of me fast, too 🙂
Thanks for reading,
Garmt van Soest
“Kicking ALS in the balls”
Dag Garmt, Ik vroeg me af hoe het nu met je was en heb even je blog gelezen. We hebben elkaar ontmoet tijdens de bijeenkomst spiritualiteit en ziekte. Fijn dat je er nog bent ondanks alle handicaps. En mooi dat je je via de computer nog kunt uitdrukken. Je stijl van schrijven en zaken direct benoemen is nog niet veranderd. Ik denk aan je , klinkt een beetje pathetisch, maar wil ik toch zo zeggen. Groet Anita