I’m going to tell you a little story that helps explain why I haven’t posted in several weeks.
On a beautiful, sunny but windy day in July, I was sitting on a beach in Rowena, Oregon, with my laptop working, of course (what else would I be doing on a beach?), when an older gentleman in a wetsuit sat down near me. Near enough to say hello and ask me what I was working on. We struck up a casual conversation — as strangers do on a beach — about the strength of the wind (very popular topic in the Columbia River Gorge), the kite surfers (also popular), and my boyfriend-at-the-time who was out there windsurfing while I was working on the beach. I had no clue that 14 years later, this stranger would be struggling to live with Lou Gehrig’s disease, or that I would be doing my darndest to promote a documentary about him in order to help him reach his goal of raising as much money as possible for ALS while he was still alive. Over the years, he had become one of my dearest friends — my family on the West coast, in fact. I discovered that during this hardest part of his challenging life that I’d do anything for him, because he’s always done so much for me, and the many friends he’s made across the world.
Melissa & Fred at my Birthday Party in Portland, 2003
Before Fred was first diagnosed, we knew something was going wrong with him — he was tripping a lot and had difficulty walking. But he’d had a terrifying paragliding accident a few years earlier that almost killed him (3 times) and cracked his pelvis in half, so we thought the problems were complications from that fall. In December 2010, he got the news that it was ALS, or Lou Gehrig’s disease. I can’t tell you what ALS stands for, and no doctor or scientist can tell you exactly what causes the disease, nor what will cure it. It’s a terrible diagnosis, not only because of what it does to the body but because there’s no fix for it. It’s a slow deterioration and suffering until death. Fred’s body has slowly been shutting down on him over the last three years while his mind stays sharp as ever.
Fred Windsurfing in Brazil, 2002
For Fred, this is the worst thing that could happen to him — worse even than a fatal drop paragliding, a deadly crash while wilderness skiing, a murderous confrontation while traveling in an exotic land, or a life-ending fall from the tall towers that he spent his working life building, climbing, repairing. Fred is a do-it-yourself, super-capable kind of guy. When you’re Fred’s friend and you find something that you can do for him that he needs help with, it’s supremely satisfying. In these last years, he’s had to learn reliance on others and to let them take care of him. I suspect that this has been the hardest challenge of all — letting go of the idea that he can do anything himself. When you’re bound to a wheelchair and you lose the ability to feed, clothe, bathe, relieve yourself…you’re forced to face this. Of course, that doesn’t make it any easier. As Johnny Cash sings, “It all goes down in your mind.” That can be a steep mountain to climb, especially when people stop understanding what you are saying because your speech is so impaired.
Melissa & Fred, July 2013
Once Fred accepted that he had ALS and this was the way it was going to go, he got busy making plans. Not plans to die, but plans to do as much as he possibly could while he lived. He met up with the local ALS Association chapter and decided to put on a fundraiser that was close to his heart — Ski to Defeat ALS. The event has raised $500,000 in three years. Although Fred is no longer able to ski on his own two legs, he’s already mastered the sit-ski which is evidently as much a blast. He trained for the fundraiser by heliskiing in the The Bugaboos. On the sit-ski.
Fred wilderness skiing, 2012. Photo by Andrea Johnson.
Next, Fred decided it would be cool to make a movie that documents his experience with ALS so that it could be used for additional fundraising after he is gone. Thus, The Noble Spirit was born. A film crew followed him around for three years and made a beautiful tribute to him, designed to inspire courage and generosity in others — traits we can learn to cultivate from Fred. Here’s the trailer:
That brings me to the point of this post. For the last three weeks, I’ve been working my tail off to pull a website together for the film release, www.thenoblespirit.org, update Fred’s blog, organize the Facebook page and connect it to the Twitter account, create posters and flyers and other promotional material, and of course create the email campaign. All those things I do every day for my clients, but in this case they are the most important things I could ever do. To honor my friend.
Fred at our annual summer BBQ. He is a total chick magnet. Still.
Fred’s lived his life by the mantra of “never say no,” and it’s been chock full of fantastic adventures, wonderful friends across the globe, satisfying successes and a few painful accidents. By all accounts, his has been a life to be envied and modeled. I myself learned that I don’t have to work while I’m sitting on the beach. It’s OK to put the laptop down and have a friendly conversation with a total stranger. Who knows? He may just be one of the best people you’ll ever meet.
The film The Noble Spirit is slowly rolling out, mostly on the West coast right now. You can keep track of screenings here, or follow our Facebook page and we’ll keep you updated. And remember, as Fred always says: Every day is a gift. Enjoy!
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