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Archive for February, 2009

Budding Revolutionaries?

We elected Barak Obama the night before as I flew from New York to Salt Lake. The next morning, the first snows of the year blanketed Utah. Thick wet flakes clung to the each street sign making it nearly impossible for me to find the middle school for our Nametags presentation. I drove around consulting the GPS on my phone, talking to Missy, executive director of the One Revolution Foundation and director of the Nametags Program. I sensed I wasn’t getting any closer, and apparently was correct, as Missy found out that the school had moved. Our directions were obsolete. So we arrived a little late, and the first presentation went by in a blur. Six hundred middle school kids in the auditorium, 45 minutes later and it was all over.


“That’s the best one you’ve ever done,” Missy said as we waited for the next group to enter. Considering that I’d arrived home at about midnight the night before and had driven around frantically all morning, “best ever” was a pretty big deal. I immediately wondered if I could maintain the same energy for the second event when the adrenaline inevitably waned.


We created the Nametags Program for a variety of reasons:

  • Children’s minds are far more open than those of adults. Children want to ask questions, they want answers and they are open to different perspectives. Most adults, however, hold strong to beliefs that they created long ago. If we wanted to change perceptions we needed to start with children.
  • We need fans. For our project to be successful we need fans. Students provide a great fan base.
  • We didn’t want our presentations to be specifically about physical disability. I want it to be about all of our perceived shortcomings. There’s no better place in the world to feel like you have shortcomings than school.
  • We wanted to look at our differences as indications of potential genius as opposed to reasons to be separate. It seems there’s such pressure to conform—to be like everyone else—but then we lose the unique part that makes all of us great.
  • We wanted to foster an environment in which we could give and receive permission to be ourselves.
  • Nametags are literally the labels that we put on ourselves and others.


Starting in the spring of ’08, we’d done about 20 Nametags presentations. All had been received well, but as the next group entered something different happened. I can’t say that there was a different feeling from the beginning. As usual, Missy and the teachers passed out one of four colored note cards to each student. With those cards I separated the students into four groups and asked why I had done it? Students offered ideas, and then finally I stepped in and asked if we could say it was arbitrary? Immediately, hands shot up asking what arbitrary meant. In hindsight their question should have foreshadowed that I was imposing my own educational paradigm on this group.


I quickly changed direction and said, “Can we assume that it’s chance? That there is no reason?” Heads bobbed up and down. Then a couple in the top right corner yelled, “No.” Perfect, I thought and asked, “Why can’t we assume that it’s chance?” This is great, I thought. We can have a conversation, but they wouldn’t answer. So, trying to get back on track I asked, “Can we assume that you received this card by random, by chance?” Those same guys, I couldn’t figure out exactly who they were yelled, “No,” again. At this point I started to get mad. If they wanted to challenge me, perfect, but when they refused to follow through it just upset me, leaving me embarrassed that I was mad and couldn’t make sense of the situation. I couldn’t focus. I couldn’t gain any momentum—the result of two kids undermining my program. I took it personally, which only made it worse. Afterwards Missy said she thought that I might just flip the crowd off and leave, but I so desperately wanted to connect with them that I couldn’t give up. The more I refused to give up the worse it became.


Of course, on the way home I reflected on the situation and understood what had happened. Those two kids took my voice. They wouldn’t let me be myself, and they wouldn’t let the others in the auditorium be themselves either. It was exactly what we wanted to combat with Nametags. Those two kids gave me the perfect opportunity and I totally whiffed. I couldn’t see it because I’d grown so mad.


Driving up the canyon I thought, yes, challenge authority. Don’t take something to be true just because I say so. Don’t take something to be true just because your teacher says it. You’re in charge of your learning. Mark Twain said, “Don’t let your education get in the way of your learning.” In my own school career I hadn’t challenged the teachers as much as I should have, but I consider my ski racing to be a continuation of my learning. There, feedback from coaches was a discussion. I wouldn’t do something just because they told me to. It had to make sense. I had to understand because then I could use it and then I could make it my own.


Challenge authority. Challenge the establishment. Be iconoclastic. Be like Picasso who said, “It took me four years to paint like Raphael, but a lifetime to learn to paint like a child.” Or the Dalai Lama, who  said, “Learn the rules so that you know how to break them.” Both of those thoughts assume learning the rules. Learn the rules and then break them. Don’t do what someone else has already done. Find a way to be unique. Break from tradition. Challenge authority. Challenge history. Make things better.


But have a reason. Have something to say. I was worked up. I thought, “Yeah, challenge authority, break with tradition, but have something to say because if you don’t have something to say you’re just being stupid.”


In my mind I’d answered the question. I’d found the solution, but there are so many different solutions. Nametags assumes you see another individual the way that they see themselves, which is far more difficult than it sounds. Just the other night I read Malcome Gladwell’s book Outliers. In it he said that people of different socio-economic backgrounds interact with authority figures differently. Middle class and above are encouraged at home to ask questions—to interact, to challenge. The lower classes usually fall silent.


While my interaction sounded like typical middle school kids trying to look cool in front of their friends, I didn’t take into account that they might not have been able to interact—to give me a reason why they said no, and that’s too bad. I hope that the next time I will avoid my anger and find a way to connect with the students. As much as this presentation challenged me to the core and frustrated me well beyond my limits, it was the best presentation yet. Adversity brings far greater teaching. And the next time I get unruly kids I will bring them on stage.


In keeping with the Nametags theme, the best question was

Are you happy with our new President?


I immediately thought of Stephen Colbert’s congratulations to our new president: “Congratulations to our first Hawaiian president.”


Talk about avoiding the obvious Nametag. 

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“The best laid plans of mice and men oft go awry.”


Robert Burn’s poem “To a Mouse, On Turning Her Up in Her Nest with the Plough” and its famous line, “The best laid plans of mice and men oft go awry,” slipped into my mind as I left Moab. When we didn’t get a chance to try for the White Rim Trail record it seemed that plans had gone awry. The trail wasn’t open because of ice. We’d brought a new rig,which at one point offered lots of promise, but didn’t work at all and seemed like wasted time, but there was so much more. The February Kilimanjaro climb loomed just around the corner and I had no idea how I’d pay for it, as money entered at a trickle and left as raging rapids. We’d wired money to Tanzania for a prosthetic for a porter who’d lost his leg in a rockslide on the mountain. With the new leg he’d join us on the climb, but the money never found the right place. We’d sent money for another individual’s schooling, but that money also never arrived. Fundraising and financing were difficult for us, but we’d sent this money. I feared that our liaison Sarah Wallis, would think we’d become like so many who promised to help in Africa but never made good on their promises.


I wondered if my best laid plans were turning into my most feared reality. It hurt because I wanted Sarah to believe. I want everyone to believe, but truth be told I would have borne the same skepticism if I was in her shoes. Feeling the world crumbling around me, however, I maintained an optimism that I recognized from my ski racing days. Often before my best races I had my worst training—many times wondering if I could even ski the morning of a big race. The game was to maintain faith in the starting gate. As more went wrong I maintained that faith. We’d go in February because the most damning line in Burn’s poem followed the most famous one, “And leave us nought but grief and pain for promised joy!” You see, in the poem that drew me, the author couldn’t see anything but unfulfilled dreams, the pain of the past and the fear of the future. Ploughing the fields he’d ruined a mouse’s nest—its warmth and security for the winter. The mouse scampered off most likely to find or build another place, but Burns couldn’t get past the bleak prospects. Like the mouse, I still believed.


It’s ironic, or maybe just nature, that I was most hopeful now that my proverbial nest had been cut by the proverbial plough, as things had turned even worse. As I wrote two blogs ago, my digestive system has bothered me for years. On Dec. 27 I started an herbal plan (following it to the ‘T’), cut out all gluten products and even stopped drinking alcohol just because I wanted to be as pure as I could. I woke early to ski on the morning of Jan. 10. A searing pain drew a straight line down the middle of my stomach. When I got out of bed, a film of sweat – the kind I’ve only experienced in Atlanta or DC summers – covered me. Still, I thought I could ski but finally had to relent. I told my father, who was visiting, that I couldn’t go and returned to bed, sure that I’d be fine.


I woke again just before noon. The pain was there again and the sweat proved even worse when I got out of bed. I called my father saying that I had to go the ER. He called back from the mountain saying that it would take him a while to return to my house. I called 911 for the first time in my life. I sat in my wheelchair, resting my elbow on my bed and supporting my head with hand. Concentrating on my words, I tried to make one lucid dot in the field of pain.


I will not try to climb Kilimanjaro in February. That’s been pushed to summer ’09. The ambulance took me to the University of Utah hospital for 23 days. My stomach bloated to the point that I looked like I was eight months pregnant. Trauma forced my body to hoard liquid, bumping my body weight by 50 pounds of water. For the first time in 20 years I actually had a butt. My legs held so much liquid that they barely bent. My scrotum swelled to eight times its usual size. The pressure in my belly felt like it peeled my ribs up the edges and pushed my diaphragm down. Breath came in short gasps when I didn’t have body-ripping hiccups, caused by the NG tube that went up my nose, down my throat and into my stomach, where it drained the contents from the top, reducing the pressure. I hated the NG tube. They funneled it up my nose and I literally had to swallow it into my stomach as my eyes filled with tears. Once in place the tube created a grating feel and plastic taste every time I swallowed. It also bumped my soft palate causing the hiccups. The NG tube was just another thing I tried to forget during my hospital stay.


Talk about achieving the moment. Pain and discomfort locked me in it. As much as I tried to think of anything else, as much as I tried to relax, the pain always grabbed my consciousness. Relaxation became a game that I tried desperately to win and occasionally felt successful when I felt my shoulders drop.


I dreamed of cold water in a glass bottle. The doctors wouldn’t let me eat or drink for almost three weeks. My mouth felt like it was dying. I took to constantly swishing and spitting water and Gatorade, mitigating the cotton mouth and bringing my mouth back to life.


The doctors told me to wait. Patience. Let’s wait and see. It could be as much as two weeks. The first morning I asked if I could go outside to do some hill sprints. They looked at me like I was crazy. I figured if I was all blocked up, maybe I could get things moving. No. I didn’t ask for hill sprints anymore. On their pain meter of 0-10, I figured 10 meant you’d pass out. For much of my stay I maintained a solid 9. As I whimpered at one point my father said to the nurse, “He doesn’t whine.” There wasn’t much that my father could do. There wasn’t much I could do. And there wasn’t much that the doctors could do either.


Eventually, they performed exploratory surgery, finding that the urinary tract infection in my bladder had spread inexplicably to my stomach. They cleared the infection and looked unsuccessfully for holes in my bladder. Originally, they thought the UTI had dehydrated me, locking up the fiber from my new herbal program. We came up with a lot of theories, but no concrete answers.


Now I’m at home looking like a fat skinny guy. I no longer look eight months pregnant, but I’m still showing. Meanwhile the muscles in my arms, shoulders and chest melted to the point that they are starting to look like those of a marathon runner. Yet, I’m hopeful.


When I started the herbal program I wanted to be healthy. I hadn’t realized just how big my problem was. Now, I’m even more motivated to find health. I have few answers, but that’s the beauty. I and those around me will find them. Burns writes in original Scottish, “The best-laid schemes o’ mice an’ men, Gang aft agley.” But the Dalai Lama said, “Remember that not getting what you want is often a wonderful stroke of luck.”


I desperately wanted to climb in February, but that won’t happen. Not going in February is a gift that will make the climb, the project and, most importantly, my health so much better.


From my treatment by the EMTs in the ambulance, to the ER nurses and doctors, to my daily nurses and doctors, and to my surgeon, my care was especially great. As I lay in the hospital I couldn’t help but think how difficult my experience would have been had I been in Africa. I have seen some of those hospitals, and I don’t think that I could have made it. Just having a roommate for the first couple of days was difficult. I couldn’t imagine sharing a bed with someone else, or my family being responsible for transporting me to the hospital, or not having many of the necessary antibiotics and painkillers. I’ve said it before: We’re looking to assist people in Africa—to give them a bit of a head start, but they’ve already achieved so much. I look at them with respect and reverence, for I know the pain, but I don’t know their strength. 


National Ability Center Ability Plus Disabled Sports USA International Paralympic Committee Wasatch Adaptive Sports Athletes For Hope