ALS Dan Toch
Garmt is experiencing ALS – so you don’t have to!
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Whowhathow
Wie ben ik en alles wat nergens anders past
How deep is your love
So John Frusciante used to play and sing that song as part of a Peppers show. Which goes to shw that even guitar geniuses can surffer from poor judgment. This is the first entry fully written and posted using eyes only.
Each time you go to Lowlands Festival you go for something familiar and something unexpected. I first went there, I think, in ’98?, as site crew, working backstage on odd jobs like driving trunkfulls of gaffa around or handing out rain ponchos to crew. I remember the disillusion when I went as a paid visitor for the first time; so much walking from parking to camping to mainstage to drinks, etc…
I got diagnosed with ALS a little over a year ago, just two weeks before the festival. Back then, nothing much was wrong except that I spoke a bit slower and I couldn’t throw my beer as far. Right now, 13 months later, I am waiting for the wheelchair to be delivered and I’m typing this text with my eyes. Temper fugit. So when my best friend Paul showed me two backstage passes for this year, I couldn’t wait to go there and carpe fucking diem. He had even called in a rare favor from his old friends at the on-site power supplier, getting us a gator.
So we went there and we had a blast. And the biggest unexpected thing I took away this year? Love. Everyone was so kind, so caring… I need help with a lot of things and that is usually not something busy crew is waiting for. My biggest fear is ending up as a bother to people, as an inconvenience, and not once did I feel like that, even though I constantly took time and attention from people who had a job to do. We showed up at crew catering ‘de kookvogels’, whom I worked with a few times, at the busiest time of the day, and all the chefs took time out to sit down and have a beer with us. These guys have seen ALS up close and that makes their warmth to me all the more impressive (would you want to be reminded?). I could have stayed there hugging these guys all weekend (which is slightly odd as close physical intimacy with sweaty unshaven men is not a regular hobby of mine, but I digress).
Later, stumbling onto the loading dock of the main stage, I was surprised again; two roadies put me on a dolly, pushed me right past the final frontier of Lowlands’ inner sanctum, yelling ‘he’s with the band!’ to get the security guard to jump out of their way. I had arrived on the back of the mainstage, right as one of the headliners were starting their set. The monitor-mixer gave me a glance and offered me the best seat in the house.
So much love and respect, from everyone working there, it was also reassuringly familiar that the VIP’s in the guest area ignored me alltogether; these are people who are too important to be nice, thankyouverymuch. In that same guest area we met one of the only real vip’s there; Camiel de Kruijf, without whom half the festival wouldn’t even be there. He’s a close friend of my best friend and made all of this possible for us. You don’t expect so many nice and caring people to work in the world of rock&roll, but there he is.
Since learning about my ALS I have tried hard to fight it; helping research (www.projectmine.com), becoming a partner in a company developing ALS drugs (www.treeway.nl), setting up an ALS investment fund (www.qurit.org)… The ice bucket challenge brings hope because it raises awareness and funds, which this fight needs. The love of my friends and strangers brings the energy to keep me alive and fighting. Thank you, Paul, and thank you, Camiel.
