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My sister has Prader-Willi Syndrome. It's not really something I talk about a lot and in-fact I usually go out of my way not to mention it at all. But I'll do it here, to make a point. The Music Never Stops
by Benjy Eisen - benjy@archive.phish.net
My sister has Prader-Willi Syndrome. Prader-Willi is a rare disorder that affects, among other things, the metabolism. I can't really tell you much more than that because, truthfully, I don't know much more than that. I try not to. When she has to go in for surgery because of this complication or that complication I don't really want to know the details. She's my sister - I just want to know that she's alright. Anything more might hurt too much.
I've seen her go through so many setbacks, so many extended trips to the hospital, whole summers spent with tubes in her veins and charts and examinations that it would make just about anyone else lose their sparkle, their shine. Not her. Boy, I'll tell you - she still smiles like a champ. Through it all, she always has. Sure, there used to be whole nights when I've been kept awake by the sound of her screaming. But that was her body making that noise - not her spirit. Not her soul.
Sometimes, all it would take would be for me to roll around on the ground by her feet and then look up at her and wink and she'd laugh again. She'd call me silly and I'd say, "No, Gabriella, I think we both know that you're the silly billy here." and she'd giggle and point to me and say, "No, you're a silly billy" and I'd giggle too and say, "Well then you're a funny bunny" and this would go on for as long as we wanted it to, because it would have us both smiling, even during whole periods of our lives when smiles didn't come easy; each one like a treasured postcard from a long lost friend.
One night, several years ago, I was at home babysitting her and I caught her trying to smuggle some candy back to her room. Keep in mind that she's not allowed candy because of the way her metabolism works. Oh, it wouldn't make her sick or anything but it would count as three times the amount of calories as it would for you or me and it wouldn't make her feel any fuller. Metabolism things. Prader-Willi things. "Gabriella, what do you have under there?" I asked. Knowing that she had been caught red handed, she started throwing a temper tantrum, throwing things at me and telling me I was banned from her room. Diversion tactics.
I poked her gently in the stomach and said, "You know, you're a funny bunny!"
Hesitantly, she laughed and said, "No, you're a funny bunny." This repeated a couple of times until suddenly she stopped smiling and looked at the candy bar in my hand. Then she started crying. "I'm sorry." she said, "I can't help it. Something is wrong with my head. I can't help it! I'm trying!"
What she was admitting was that she knew she had this disorder and that because of it, her entire life was much different from mine or yours. She knew that some things were going to be a battle between her body versus her mind. And she knew that sometimes she'd lose, but that she'd never stop trying. As her brother, that breaks me heart. It also inspires me. It's a lesson in perseverance really.
"I know you're trying, Gabriella." I whispered, giving her back the candy, "Shh - this will be our secret, okay?"
Friday night at the All Good this year was everything you'd expect from a Walther Productions festival. And everybody knew it - traffic was even backed up for an hour or more, early on, with eager fans wanting to kick off the weekend in-style.
The first band on was Ulu, who started things off strongly with caffienated shots of NYC Fusion. This was followed by Runaway Truck Ramp, The Tony Trishka Band, Ekoostic Hookah, The Recipe and The String Cheese Incident - all of whom put in solid performances and all of which are atop of what it is that they do. If you like the new groove-jazz stuff, you'd probably like Ulu. If you like bluegrass, newgrass or zoograss, you'd like the rest of Friday's line-up as well.
The night was filled with laughter, lantern-lit campground walks and a mellow sort-of mayhem with all imaginable blends of wayside fiestas and lap-dance fiascos happening in different pockets around the park. All going on at once. All of them just about oblivious of the others except for the common strains of laughter and the occasional sounds of woo-hoos and yelps and wallops and howls.
Things got off to an early start on Saturday with rising trance-rockers Sector 9. And blah blah blah. You know what I'm going to say - do I have to do it band by band? Read the reviews for that.
It's like, The Slip threw down a particularly impressive set but I mean c'mon - they're The Slip - of course they're going to kick it with the impressives. That's what they do.
And sure, Heloise Williams turned the stage into a dimly-lit smoke-filled jazz club as she led Viperhouse through a set of rambunctious bordello-house funk. But this has come to be expected from Viperhouse by now, right?
Right. At this point, I'd rather talk about the weather. Seriously. While Friday night and Saturday morning sported perfect spring fest temperatures, an impending cloud line gave a mid-afternoon hint of an oncoming storm. It gave no indication, however, of the events that were to happen.
I'm not going to review Deep Banana Blackout's set. Not here. They're a good band...and lots of fun. But as lead singer Jen Durkin was throwing her arms wildly up into the air, strong gusts of wind blew through and actually took out part of the lighting rig. A massive truss of steel and heavy lighting cans and lights fell, crashing violently onto the stage, just barely missing the band and several stagehands. The truss landed on moe.'s lighting rig, damaging thousands of dollars worth of equipment. By sheer luck, nobody was seriously injured. Just a couple more feet this way or that way and that would not have been the case.
A shaken-up Deep Banana Blackout hugged each other backstage, watching replays of the crash that someone had captured on film. The replays looked like something from Real TV. For real though.
The constant sound of music that had been emanating from the speakers all day was now crushed, squashed under the weight of a fallen rig and silent on a stage that looked all but destroyed. The audience had cleared, headed back to their campsites and unsure what would come next. Would there be more music? Was this it? Should they leave and go home? Should they stay and party, but without live music? What was happening and what was going to happen?
In the minds of Tim Walther and his partner, Junipa, there was no question. When Tim created Walther Productions he made it clear from the start that the philosophy would be, "It's all about the music." The show must go on. While an unexpected and serious accident nearly put an end to things, the assessment went like this - Is anybody injured? Thank God - nobody is seriously injured. Okay, so we have a lighting rig we need to take care of, we'll need to make sure the stage is absolutely safe and we'll need to adjust the schedule a little.... but then let's get the bands back on as soon as possible!
A crane made its way through the audience to the stage and began the fixing process. As it turned out, things were a bit more complicated than they seemed and a number of tactics had to be tested before the lights could be safely reset and the stage determined safe.
The only way the show could continue, with several hours suddenly swallowed, would be to cut some of the bands. It wasn't a move anybody wanted to make, that's for sure. But for the sake of the show, it was a necessary casualty. Much to the disappointment of their hardcore fans, The Disco Biscuits and Lake Trout both lost their sets. moe. graciously agreed to a proposed plan in which The Disco Biscuits would be brought on stage during their set to jam with them. They would then let the Biscuits segue into a mini-set of their own before turning it back over to moe. again. Or at least such was the plan.
Karl Denson's Tiny Universe kick started the show after the unexpected hiatus. The concert grounds rapidly refilled, dancers broke sweats and once again the sounds of music filled the Brandywine air. Shortly after the tapers uncovered their mic stands though, they were scrambling to pull them back down - the winds returned, this time with the rain and within moments a frightening electrical storm illuminated the sky. Bolts were being tossed about the heavens as if Zeus was out playing catch; thunder rolled like roars from where the wild things are. It was as if the Gods had their own idea for sounds and lights for the evening.
For the second time, the show was stopped. This time it seemed like it would hold. The PA system had been disassembled and people were back at their campsites, changing into dry clothes and settling in with strange friends and friendly strangers. But as soon as the rain tapered off and the lightning passed, Tim Walther was exploring his options. Minutes later moe. went onstage for an acoustic set. One by one people came back out to see the show - on a stage with minimal lighting and no amplification, as moe. worked their way through tunes like "Bad Moon Rising" and "Friend of The Devil." Midway through it, I saw Tim behind the stage, talking to the sound company and arranging for a mini-PA to be set-up. Someone in the audience volunteered to fetch his upright bass for Rob to use. And all the while, more and more people came down from the hills.
Where most promoters would've seen the setbacks as impossible roadblocks, this one saw them as mere detours. Against all odds and two major setbacks, the show did indeed go on.
Talk about perseverance.
You want to talk about perseverance? Winston Churchill went from failing a year of middle-school to becoming one of history's greatest leaders. Perseverance. Dr. Seuss was denied by every major publisher before going on to publish a record number of wildly successful children's books. Perseverance. The Beatles were told by Decca Records that guitar music was on the way out and they'd never find a record deal. Perseverance. Evel Kneivel broke over 50 bones and crashed over 12 times during his motorcycle jumps. He has a steel plate for a right hip. What makes him the greatest daredevil in the world? That every time he crashed, he would reschedule the jump and do it again until he made it. Over 300 jumps in all. Perseverance has made him the greatest daredevil in the world.
You want to talk about perseverance? Jerry Garcia's middle finger was cut off when he was four years old during a freak accident. Thus, with one finger less than most of us, he still became one of the top fingerpickers of the century. Perseverance. In 1986, after having overcome obstacle after obstacle, he was the leader of the world's most successful touring band when he collapsed and entered a coma. When he came out of it, three days later, his motor skills were shot. He could barely even walk, let alone play a guitar. He had to relearn everything from scratch. An amazing two months later he was touring with his solo band. Two months after that he was headlining sold-out arenas with the Grateful Dead once again. Perseverance!
You see, the most amazing thing about the human spirit is its will to go on. Its will to continue. It's will to endure. Its will to persevere.
I think of my sister and how when she was born they told us that she would never live. And when she lived, they said she would never be able to walk. And when she walked, they said she'd never talk. And yet just today on the phone she told me about her boyfriend and what she had to eat last night for dinner. It took her a little bit of effort - she had to stop a few times and start the sentence over, but she did it. Her boyfriend's name is Max and she ate spaghetti for dinner last night.
I think about how it has taken her 18 years to learn how to make a complete sentence and she's still learning how to do it. But even if it takes her another 18, she will learn it. And that is what I call perseverance. There's a lot of things that I haven't been able to accomplish yet, even though I've given it my best shot. I make mistakes. I fall just a bit short here and there and sometimes I'll even wipe-out hardcore. Not gracious dips or styled spills - I mean, I've taken some pretty ugly dives. I've had curve balls thrown at me and sometimes there was nothing I could do while other times, if you want to know the truth, it was me that failed to answer. That's all. No excuses, no explanations - I just haven't always met my own expectations always. Although I've always tried. And about the only defense I can give for those times is this - I'll keep on trying. I'll work at it. I won't give up. I will make it.
And tomorrow when I wake up I'll take a shower and brush my teeth and eat a good meal and I'll get in my car and I'll pop in a wonderful tape and things may be looking on the up-and-up. But then there might be a roadblock ahead or I might get lost or maybe there's a traffic jam, and I'll get held up from where I wanted to be at this point in my life. With people like the ones above teaching me, I'm learning that these are mere detours and not end-of-the-lines. I'm learning that even if you're down three-to-nothing in the playoffs, you still can battle back and win the next four, even though the odds may be against you. I'm learning about perseverance.
And may the music never stop.
Columnist Benjy Eisen would like to dedicate this month's column to his mother for knowing a little too much about perseverance and for never, never, never giving up.
benjy@archive.phish.net
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