And now for something completely different … a blog post that 1) for most of my life I couldn’t have even imagined writing, 2) for the better part of the past three years, I wasn’t yet prepared to write, and 3) for much of this year, was ready to write, but was waiting for a set of circumstances that would make such a post blogworthy for Bamboo Nation.
Piqued your curiosity yet? Wondering what could follow such an introductory paragraph from the once and future (I promise!) author of SharePoint Blank? Well, it’s not every day that you stand up in front of the SharePoint community and announce that you’re battling a fatal disease for which there is no cure (yet).
Many of you will have already made the connection between that last sentence and the headline of this post, so I’ll just come right out and say it: Almost three years ago, in January 2011, I was diagnosed with ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease in the U.S., and as motor neuron disease elsewhere in the world.
(Those who wish to skip ahead at any point in this rather long post are invited to scroll directly to the final paragraph for links and information about donating to the Walk to Defeat ALS via Team Bamboo. It’s a heavy topic, I know, and I’m going to get even more personal below, so go ahead and cut directly to the chase—with my blessing—if you need to.)
For those who may only be familiar with the disease name, the quick and dirty description on the Walk to Defeat ALS site says that “ALS is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow, and breathe. The life expectancy of an ALS patient averages two to five years from the time of diagnosis.”
Needless to say, as I approach the third anniversary of my diagnosis, I feel incredibly fortunate to still retain not only the ability to continue to perform my job duties (albeit wearing an assistive typing aid and a brace on one hand; cruelly, as a professional writer/editor—and a right-handed one at that—my symptoms began presenting in the fingers of my right hand and arm in 2010), but also the ability to walk (albeit only distances of up to a block or two, and made easier/safer wearing braces), speak (though, of late, some days are better than others in terms of my ability to project), and drive (I’m in the office as I type this, though I’m working from home more often than not these days, with Bamboo’s kind understanding). Breathing and swallowing are, thankfully, still almost undetectably affected at this point.
I’m going to insert at this point something that should come as no surprise to regular readers of our New Faces of Bamboo series, but, as everyone at Bamboo is well aware, right down to our newest hires, at Bamboo, the standard progression for most employees is that we start out as colleagues, quickly become friends and, before too long, come to realize that one of the things that makes Bamboo such a special place to work is that our bonds genuinely feel familial.
Having said that, let me now say this: When I was diagnosed, my wife, Amanda, and I made a joint decision that, given how healthy I still appeared, we would hold off on sharing the crushing news with anyone, even our immediate families. Perhaps selfishly, we wanted to continue to live our lives with an appearance of normalcy for as long as possible. It was a little over a year later—when I had lost much of the use of my right hand to the muscle atrophy that is one of the hallmarks of this ghastly disease—that we shared the news with family and close friends. That group included a few members of my Bamboo family and was shared with the understanding that it wasn’t intended to be common/companywide knowledge until such time as my symptoms had progressed to the point where something was obviously wrong with me. (Again, driven by that same desire to maintain a sense of normalcy.)
Fortunately, that process took pretty much another year. It wasn’t until this past January that I began parking in a handicapped spot at the office, due to the rapid fatigue in the muscles of my legs as a result of walking. But here’s the thing … even a few months after that point, there were still some colleagues who were shocked to learn that there was anything wrong with me, much less that it was a terminal, a progressive disease I was tangling with. And you know what? I can’t tell you how grateful I was on those occasions because, well, you read the life expectancy statistics earlier (the low end is two years), so I figure every day is a victory over this thing at this point, and to have still been “fooling” people who saw me regularly just a few months ago only served to remind me yet again of my good fortune in the midst of all this.
And speaking of good fortune, let’s just say that everything you just read amounts to taking the long way to say how overwhelmed with gratitude I am that Lindsay Bergstrom, Bamboo Director of Finance and Operations, with the full support of Chairman Anders Johnsson (and Bamboo’s entire Board), has thoughtfully organized an official fundraising effort on my behalf to benefit research for a cure for ALS. I’m humbled and I’m moved (truthfully, more than I can adequately describe) that so many members of my Bamboo family—and, in some cases, members of their families—are participating in the October 20 Washington, D.C. Walk to Defeat ALS.
If you’ll permit me a slight digression for one paragraph, I’d like to also take this opportunity to send out a heartfelt public thanks to my brothers in Sharing the Point. Though they couldn’t have known it at the time, we left for our STP Asia Tour two months after my diagnosis. I shared the news with the STP team about a year later, after our STP South America Tour, and their support and assistance made the STP Africa Tour in September of last year far less burdensome on my weakening body than it otherwise would have been. (It was even suggested that their climb of Kilimanjaro during the Africa Tour be used to raise funds for ALS, but at the time, I wasn’t quite prepared to accept such an offer, generous though it was.) So to Mark, Paul, Joel, Michael, Eric, Dux, Rob, and Dan – thanks for the unforgettable experiences in all those far-flung countries, the inspiring community-building, and, of course, the friendship.
In appreciation for all of the good fortune in his life (and in defiance of the “bad break” of having been stricken with the disease that would come to be associated with his name), Lou Gehrig famously said, “I consider myself the luckiest man on the face of the Earth.” Given the incredible, unyielding support of my wife, my parents, brother, extended family, dozens of friends in my personal life, and dozens of friends in my SharePoint life (first and foremost, the members of my Bamboo family, including Bamboo “alumni”) … well, with all due respect to Mr. Gehrig, I honestly can’t imagine that he could have felt any luckier than I do.
Regarding Bamboo, and the Bamboo family bond, I have to say what a rare pleasure it is to work for a company that not only takes care of its people, but that goes out of its way to do so (up to and including, historically, encouraging colleagues to help take care of one another in times of need). Take it from me, it means the world to have that kind of support, and to feel those bonds when you might otherwise feel that you’re up against the wall, keeping the darkness on the edge of town at bay.
If you’re inclined to help Bamboo raise funds to find a cure for this terrible affliction, you can make a tax-deductible donation simply by visiting the official Team Bamboo fundraising page, click the DONATE TO TEAM! button on the right, and choose the amount of your donation. As you’ll see, there are some pre-configured amounts, but there’s also an “Enter an Amount” write-in option. No amount is too small – all donations are gratefully appreciated. Alternatively, you can click the TEAM BAMBOO button to see all of the individual walkers who are participating, and back a specific team member with your donation if you so choose. You can also see how much has already been raised by the individual walkers since the Team was formed (just last week). Thanks once again to my Bamboo family, for whom I wish a perfect autumn day for the Walk on 10/20, and thanks in advance to any members of the larger SharePoint community who might open their wallets to help the cause. There isn’t a cure yet, and there may not be one in time to save me, but we will beat this thing … and you can help.