Hopeless romantic, my "tribe", paralysis analysis

I Hope You Dance

From the minute I decided I wanted to propose to Claire, I knew we were going to have the conversation. My diehard Dancing with the Stars fan-future wife was going to want to dance with me at our wedding, and I knew I was going to break her heart with my refusal.

Anyone I’ve known since before my injury remembers me as being in perpetual motion and loving to dance. I like to remember myself as a vigorous hand talker, but the real truth is that I was more of a spastic body talker – I couldn’t tell a story without acting/interpretively dancing it out. Hell, I even danced while warming up for wrestling matches. Here’s proof.


Okay…. Easy Turbo, I didn’t say I was a particularly good dancer, I said I liked doing it.

Flash forward to my accident and I was instantly robbed of the physicality that was my primary means of self-expression. I remember waking up in the hospital, feeling as if every dream I’d had for the future was disappearing as fast as I could think one up. High atop that list was dancing at my wedding. Nearly a decade and a half later, it was still a raw spot that hadn’t quite healed, and I wasn’t sure how to tell Claire.

I thought I had a little bit of time to prepare myself, but the very weekend after she said yes, we wound up at the wedding of one of her sorority friends, Sam, who was on the effing UW dance team, and had an epic first dance with her new husband Ryan. We reluctantly had the conversation that night and, while Claire took it well, I could see the disappointment in her eyes.

A couple weeks went by, and the longer I sat with the idea, I realized I didn’t want to start this chapter of our lives with the narrative that there were certain things I wouldn’t do because of my insecurities surrounding my life in a wheelchair. I didn’t want the story my future children heard about their parents wedding day to start with anything like: “Well, Dad doesn’t dance/make a fool of himself/(insert comfort-zone-stretching-opportunity-for-growth-type situation here) because he’s scared/insecure/whahwhahwhah.”

Besides, Claire more than deserved the wedding she had always wanted. As one of my best friends, Ian “Dreadlocks” Mackay, would hilariously point out in his groomsmen speech, she’d already put up with having to be seen with me through years of terrible hair choices, the least I could do was embarrass myself for a few minutes in front of friends and family. Case in point:

So when a friend referred us to World-renown wheelchair dancer from Seattle named Charlene Curtiss and her dance partner Joanne Petroff, I reluctantly went along with it. But it only took a couple of minutes and a handful of suggestions to unlock something deep within me that I thought was long gone. Suddenly I could see a way to put it together in a way that felt genuine and made me a little more comfortable with the idea.

We practiced a handful of times in the run up to our big day, and were a ball of nerves when the time came, but then something unforeseen happened. When the lyrics of Jason Mraz’s “Best Friend” chimed in with the words “Love is where this begins,” the whole crowd disappeared, and it was just the two of us out there having fun. By the time I spun her around one last time as the music faded, there wasn’t a dry eye in the room. It was easily my favorite memory from one of the best days of my life. Check it out.

In his essay about spiritual experiences in the back of the Big Book of Alcoholics Anonymous, AA founder Bill Wilson uses this quote from Herbert Spencer to help explain how a negative attitude can limit, long probably our ability to see a new way of life for ourselves: “There is a principle which is a bar against all information, which is proof against all arguments and which cannot fail to keep a man in everlasting ignorance – that principle is contempt prior to investigation.”

It’s fascinating how – even with ample evidence that life begins at the end of my comfort zones – I can still get mired in that negative thinking that would rob me of potentially life-changing and memorable experiences. That’s where I’ve been blessed to have not one, but two incredible women to help me reach for those depths within.

I guess it shouldn’t come as a surprise that both Kristen and Claire’s respective moms’ songs for their daughters happened to be Lee Ann Womack’s “I hope you dance.” It’s exactly what Doing Life is all about, a mission Kristen sent me on seven years ago. And time and again, Claire has constantly proven to be the partner I’ve always needed, sometimes leading when necessary, always the perfect complement to my every move. I am, without a doubt, one of the luckiest guys on the planet.

The next time life shows up with the choice for you to sit it out or dance in some way, shape, or form, I hope you’ll dance, too.

Keeping perspective, my "tribe", paralysis analysis

Another Lap Around the Sun

I have written about it a handful of times, and each time, I’ve found that my relationship with the anniversary of my accident has evolved. The first few years, I didn’t need a reminder because I’d been counting the days, breaths, and heartbeats that I’d survived along the way. At five years, I couldn’t find the words. When the decade came, it was time to exercise some demons and celebrate. Now here we are at 14 years and, as always seems to be the case, it’s hard to wrap my head around just how far I’ve come.

I look back at pictures of the early days and remember just how disoriented I was in the months and years after my accident. For a long time I couldn’t leave my room, let alone my house, or even the block we lived on. This life just did not make sense. I never could’ve imagined that six years later, the cute nurse from rehab would wander back into my world and show me how to “do life.” And when the mosaic we built during our two-year whirlwind relationship came crashing down and I found myself at the lowest point of my life, I clung to one question like a life preserver: Where will I be six years from now?

And now here I am, living a healthy, productive, and meaningful life on a level I could not have have fathomed back then. I’ve got a semi-regular gig writing for one of the leading disability magazines, my little pet project has gained traction and is building a critical mass up here in the Pacific Northwest, and, oh yeah, I’m on the verge of marrying a woman who has played an integral part in helping me get here by standing by my side as I’ve pushed past comfort zones of all kinds.. It’s a level of productivity and motivation I’ve always wanted, but never truly thought I would find post-injury.

On the one hand, it’s a testament to all of the work I have done on myself, especially in the last six years, on my mental, spiritual, and emotional fitness. On the flipside, I know none of it would have been possible without the hordes of people who have been there to catch me every time I fell and helped carry me until I figured out how to make this life make sense, especially my mom, my dad, my sister, and Kristen. I know there’s no proper way to thank each and every one of you except to continue pushing forward to help others as you have helped me.

The only question now is where will we all be six years from now? If the last 14 years have taught me anything, it’ll be a mixed bag of the sour and the sweet, but we will get there together.

my "tribe", paralysis analysis

Back on the Right Path

Thanks to some inspiration from my buddy Ian Mackay and his epic summer ride, I’ve been taking to the trails near my house on a semi regular basis. Granted, I don’t average 30+ miles a day like that crazy hippie, but a few miles a week helps me get some fresh air and run Hank’s brain into something that vaguely resembles focus. We’ve had a decent run of sunny but crisp days to begin the autumn season up in the Pacific Northwest that not only allowed me to log a few extra miles before the weather officially turns for the winter, but also managed to trigger a bit of nostalgia.


The sight, smell and sound of the fallen leaves crunching under my wheels combined with the gentle breeze nipping at my cheeks takes me back a decade or so to early morning runs in Ellensburg with the wrestling team. I remember hating those runs when I first got into college. Actually, I just hated running period.

In high school, I made it through exactly one day of turnouts for the Auburn Riverside high school cross-country team. The only reason I even turned out was at the insistence (read: persistent, borderline harassment) of the head coach, Bill Sumner, who happened to teach my architecture/computer-aided-design classes. He would call super early in the morning towards the end of summer break barking some nonsense about getting in shape for wrestling season, to which I would usually hang up, roll over and go back to sleep.

He finally wore me down enough to say yes my senior year, so I convinced Unel Hampton, my good friend and practice partner, to come with me for the first day of tryouts. I mean, it’s just running, how hard could it be? Two miles later, I couldn’t feel my legs and Unel was dry heaving in the flower beds outside Leisure Manor mobile home park, while all the tall skinny bastards in their goofy short shorts were just getting warmed up, laughing at us as they continued on for who knows how much further. Our day was over, theirs was just beginning, and they could have it. I’d leave cross-country to the bird-legged.


Flash forward a calendar year and you can imagine my surprise when I show up as a freshman walk-on for the wrestling team, and the first three weeks of practice consisted of nothing but running; somewhere between 3 and 8 miles on the road each morning, wind sprints on the football field and buddy-carries up the stadium bleachers in the afternoons, and a 4 mile scramble up and down Manastash Ridge every Saturday morning. After the first week my legs felt like Jell-O and I couldn’t help but wonder if it was all some big cosmic joke, that I had somehow turned out for cross-country by mistake. You can see me on the right in a white hat in the photo above, stretching before one of those jaunts up The Ridge.

Fortunately we got on the mats a few weeks later and I learned the two-part method behind head coach Kevin Pine’s madness of three weeks with nothing but running. The first was simple attrition. The overwhelming mileage managed to weed out anyone not serious about wrestling at the next level, cutting the freshman turnout from the high teens to half a dozen. The second was that it was only the beginning. Along with afternoon practices, we continued 6 AM morning runs for the near entire six-months of the season because you need the roadwork to develop your legs for the virtual street fight a seven minute college match can be.

I’m not sure when it happened, but at some point over my five year stint as a Wildcat, I grew to appreciate those runs. They gave me a depth of stamina and mental fortitude that served me well, especially the last couple of years when I became a leader in the wrestling room and a success on the mat. So it was only natural that they became one of the things I missed most after my injury.

It wasn’t just the void of physical sensations like the way my feet ached from pounding the pavement past acres and acres of Ellensburg farmland or the way the frigid morning air stung deep down in my lungs as I chased All-American teammates like Cole Denison and Shaine Jamie back towards Nicholson Pavilion. What was infinitely more painful was the idea that I had lost that intense sense of camaraderie built by testing your limits with your closest friends. It wasn’t until I found myself whizzing past acres of farmland on the Olympic Discovery Trail with Ian last Sunday that I noticed those long dormant feelings bubble to the surface.


As much as I like to rib him about being a pot-smoking, birdwatching hippie, the reality is that he, his family and many of his support crew all rank near the top of my list of favorite people on the planet. We met at a pivotal point in my journey a little over four years ago, as I was beginning to emerge from under the deep, dark shroud of denial and depression that swallowed almost a decade of my life. We talked about assistive technology that day, and he told me I was an idiot for not using an adaptive mouse, to which I had no choice but to agree after I got a chance to try one out.

Over the years, our bond has gone far beyond talk of computer and wheelchair parts. Along with a select handful of men living with high-level spinal cord injuries affectionately known as the Quad Squad, we have leaned on each other while grappling with our emotions and disobedient bodies, and now find ourselves becoming strong advocates for our community. While Ian is making substantial headway in his quest for accessible trails in the Pacific Northwest (you can follow along here), I’m heading down to Las Vegas for another advocacy conference with United Spinal.

My crew and I fly out tomorrow at 9:45 AM and, even though I have a decent record with Alaska Airlines, I won’t lie and pretend this summer’s chaotic trip isn’t renting space in my head. But then I think about that miserable run with Unel, and how it didn’t stop me from becoming a runner after all. My days as a paralyzed traveler may have had a rocky start and I’m sure there will be more rough times going forward, but I can’t let that deter me from taking things to the next level.

Wish us luck!

paralysis analysis, Uncategorized

The Recovery Waltz

One-two-three, one-two-three, one-two-three. Back in college, they held an “Introduction to Ballroom Dancing” class in one of the gyms adjacent to the sports medicine room for varsity athletes – not that the CWU wrestling team actually spent much time in that area. No, the redheaded stepchildren of the athletic department rarely mingled with the revenue-generating football and basketball players because the head trainer made it abundantly clear that we were a very low priority on his list. But on the occasion one of our freshman would poke their heads in long enough to steal a roll of tape to wrap our jammed/broken fingers, they would always come into the practice room snickering about the guys they’d seen going into the class. I tried to remind them that those fellas were dancing with cute, nice smelling girls and we were rolling around with sweaty men in spandex grabbing their butts, but the notion tended to fall on deaf, cauliflower-mangled ears.

Maybe I was a little extra antagonistic because I was interested in the class for myself. Along with my incredible sister, I’d inherited my dads sense of rhythm, so I was no stranger to cutting a rug, and figured a little formal training might come in handy at the occasional wedding or two. From the outside looking in, the waltz always seemed like a good place to start; the triple time tempo means three steps to remember instead four, which I assumed might be a little easier. Unfortunately I never got the chance to give it a shot, because the class was only held at the same time we had practice, so I was forced to observe from afar and spend my slacker PE credits on other endeavors. Little did I know, my dancing lessons would come more than a decade later, only in a very different format than you would expect.

The healing process feels a lot like a dance in its own right, albeit not nearly as much fun. Just like the waltz, it all boils down to three seemingly simple steps: (1) identify/accept the reality of the situation; (2) decide on a course of action; and (3) see how things progress. This most recent pressure sore has been an exceptionally frustrating exercise of that progression, because it’s become the classic cliché of two steps forward, one step back.

The problem with treating pressure sores like mine is the fact that my lack of sensation means we don’t really know how the issue developed in the first place. You have to embark on what is the equivalent of an archaeological dig through your seating system and body mechanics, systematically analyzing every position and piece of equipment you come in contact with.

We started with my seat cushion, one specifically designed to prevent pressure to a patient’s ischial tuberosities (the bony part of your butt), but four years of wear and tear might have compromised its efficiency. After making some drastic changes to the cushion we thought we were in the clear, but a culture of the wound revealed a MRSA infection, so that meant a few weeks of hard-core antibiotics and more downtime. Once the antibiotics finished, we tried something called a wound vac, which is exactly what it sounds like: they basically saran wrap the wound area and then hook a vacuum up to it to pull blood flow to the area while wicking away excess drainage. Although it’s safe to say that the thing literally sucked ass, it still didn’t do the trick. One-two-three, one-two-three.

Now we are almost a month into another treatment that seems to finally be showing legitimate progress, but at this point you get a little nervous being overly optimistic. After all, I’ve been telling people that I’m only a couple weeks away from getting back out in the world since before Memorial Day. Now here we are at Labor Day, and I’ve been doing this dance all summer long. It’s an emotionally exhausting process, because I also keep catching myself saying “okay, this has to be the last thing,” only to have the rug pulled out from under me time and time again.

I’ve tried to retain my sanity by keeping my mind occupied as best as I can, but it’s tough. By the end of June I had already mowed through every freaking episode of Game of Breaking Arrested Mad Cards is the new Black on Netflix — yeah, they’ve all blended together at this point. The World Cup came and went, and now NFL football season is about to begin. Those are all great short-term distractions, but the truth is that I am desperately missing the life I had built up over the last four years. I’ve had my time living vicariously through whatever is on my computer/television screen, I’m itching to get back out there and do life.

And I’m not the only one going a little stir crazy with all of the forced downtime these last few months: someone else in the house has been stricken with a bit of cabin fever and is exhibiting rather peculiar behavior. Check it out:

Leave it to my dog to lighten up the mood. Because when I really look at it, this summer wasn’t a complete bust. While I was down, the little mutt got to go to boot summer camp for five weeks and came back a completely different dog. It’s almost like there’s a brain inside his head and everything. But aside from that, I was able to tackle quite a few projects around the house that I’d been putting off for far too long and even cracked open a Word Document and labeled it “book rough draft.”

To steal the metaphor from my favorite John Michael Montgomery song, I know that this whole life itself is a dance. It goes in cycles with good times and bad times intermixed like the high and low notes of a melody, and it’s all about navigating between the two as best you can. And right now, The Grand Cosmic Conductor is playing his tune a little slower than I would prefer, I can either fight it and get my toes stepped on, or let go and keep pace with the beat. Fortunately, I’ve got an awesome group of friends and family that won’t let me do this dance alone. Thanks to everyone who has helped worked on the house, brought me a meal, or just came by for a little uplifting conversation.

I’m sure I’ll be back out there with you in a couple weeks… Or so. One-two-three, one-two-three…

Down days, paralysis analysis

Away from the Sun Again

I should be in Maryland right now. Maybe Ohio, or at least Illinois – somewhere on the road to Washington DC for a Roll on Capitol Hill that starts on Monday. I’d take anywhere but where I am now. There is an old adage that says that life is what happens when you’re busy making plans. So it only figures that, in what is undoubtedly the most productive point in my journey thus far, life would throw me a curveball that has landed me on bed rest. Yep, my almost 4 year run of being pressure sore free officially came to an end last month.

I knew this day would come, I just didn’t think it would be now. Then again, I guess no one ever does. On the heels of the first Here and Now Project event, and just before what was sure to be an epic East Coast road trip to rival last year’s West Coast run, the timing couldn’t have been worse. And of course it pops up during summer, the time of year when we in the Seattle area are guaranteed a good dozen or so days where the clouds part to reveal that warm, golden orb we always hear so much about, but rarely see. It’s hard not to feel like the unseasonably hot June weather is mocking me from the window.

3 Doors Down has always been one of my favorite bands. Their second album, Away from the Sun, came out the year before my accident, and it took on a completely different meaning after that. The title track became one of the songs that best fits my life after paralysis, and it’s even more appropriate to this situation. Here’s the lyric video:

For those unfamiliar with paralysis and its inherent risks, prolonged pressure in the bony areas where we sit cuts off circulation and essentially kills the tissue from the inside out. The body has to expel the dead tissue before it can heal, so it slowly opens up. By the time you notice it, it’s already too late. That’s what happened to me. What looked like a minor skin irritation a week or so before Memorial Day became a hole roughly the diameter of a quarter and almost a centimeter deep by the time the holiday arrived.

The issue is much more of a figurative pain in the ass than a literal one. I can’t feel it whatsoever, but it still manages to f#ck with my entire world. It’s yet another illustration of how my life has gone from one polar extreme of the human condition to the other. What was once my greatest asset — my body — has now become my biggest liability. It is frustrating as hell but also terrifying, because these things are like kryptonite for people like me. It was infected pressure sores that precipitated the deaths of Christopher Reeve as well as my good friend Dan who just passed away in February. That’s a list I’m not interested in adding my name to anytime soon.

Plus bed rest sucks. I liken it to the limited understanding of solitary confinement I’ve gleaned from prison movies and TV shows. At best, it’s an hour or two of relative freedom in my chair per day, the rest is spent flat on my back in bed. The only other time I become remotely vertical is the 20 minutes or so when I raise the head of my bed up 30° to eat dinner. My eyes get blurry from staring up at a laptop, and my whole concept of time is thrown out of whack. The hours creep by at a snail’s pace, but the days somehow melt together and, before you know it, weeks have passed; a slippery slope I’ve been down before.

The last time I had a sore it cost me the better part of three summers, when I spent the two and half years between April 2008 and October 2010 primarily in bed. The prospect of losing another summer is crushing, especially when you consider how much life has changed since my last prison sentence. Back then, I was a shut-in and had no idea what I was missing. Not anymore. I have a rich and full life, one where I regularly put more miles on my wheelchair in a single month than I did in my first two or three years combined. Of course, that overcompensation is partially to blame for where I find myself today.

I’d known for a while that I was pushing my luck by spending nearly 14 hours a day in my chair, relying far too much on the “miracle” cushion than I should have. The system prevents most, but not all of the damaging effects of pressure, and I wasn’t doing my part to relieve the rest. Factor in four years of wear and tear on my chair and the inevitable body changes that come with it — both of which went relatively unaddressed — and I can only point the finger of blame in one direction. Right at myself.

But as dire as this all seems, it actually serves as a litmus test for the state of my overall mental, emotional and spiritual health which has improved immeasurably over the years. With my last sore I was in such denial, I wouldn’t so much as look at a picture of the wound, let alone actively engage in its treatment. Now I know what’s on the other side of that window and I want it back. My recovery is my responsibility alone, so I’m doing everything necessary to give myself the best chance of salvaging my summer.

Who is photo bombing who, here?
Who is photo bombing who, here?

I put myself on bed rest early and I’ve already had multiple physical therapy appointments to assess my seating and adjust my cushion. I’m pounding protein shakes like a Mr. Universe contestant, and my team is taking enough close-up butt photos to make a Tim Burton-esque stop-motion movie of the healing process… we’ll call it “The Nightmare Before July Fourth.” Here’s an outtake of the Ear Stabber photo bombing when she should have been working. At least someone’s having fun, I guess. Yeah, I’m a little bitter and snarky right now. It’s just because I’m impatient.

But I’m doing everything I can, the only thing left to do is give it time and have faith that, just like with the previous sore, these are growing pains that will help me mature into a stronger and healthier person. Because, if I’m honest, I know those 30 excruciating months stuck in bed were necessary to break me out of my reclusive funk and get me back out in the world and doing life. (Okay, the pretty girl didn’t hurt, either.) But in my attempt to make up for lost time, it appears I let the pendulum swing a little too far the other way.

So just like the song suggests, “It’s down to this. I’ve got to make this life makes sense.” I have to find a new way of living somewhere in the middle. The discomfort and frustration I feel will eventually pass, and I am sure I will be better because of it. One day I’ll be able to look back at this situation as a lesson in balance and moderation, hopefully learned in a matter of weeks instead of years. Until then, I’ll continue laying waste to my Netflix and Kindle queues while thinking up dorky puns in an attempt to laugh off the madness sun deprivation brings. Really awful stuff like, “I’m so bad-assed, my butt needs two holes.” Wish me luck.

paralysis analysis

The Memory Remains

A spinal cord injury is an interesting beast to wrangle with, both physically and psychologically. It differs from other causes of paralysis like MS, ALS or Parkinson’s in the sense that it’s not a progressive degeneration of your physical abilities where you are constantly adjusting to the increasing loss of independence. It’s abrupt. There’s a before and after. One day you are fully capable, and the next you are not.

That kind of shift is difficult to process because there is a memory hardwired into your brain as well as your muscle tissue that no longer connects. Suddenly trapped in your own skin, your psyche screams to break free from the invisible shackles binding you. Most of those circuits tend to fade over time as you slowly adjust to your new normal, but there are always at least a few of those memories for everyone that stick around as if it was just yesterday. For me, it’s always one of two distinct scenarios.

TantrumThe first takes place on Lake Tapps, where I grew up and spent every summer wakeboarding behind my dad’s boat. I can still hear the handle squeak in my grip as the boat surges forward, pulling me upright on my board and sending lake water cascading down the creases of my board shorts like a temporary waterfall. And I can feel my leg muscles straining as I edge hard on my heels away from the boat, setting up my approach for a scarecrow – a front flip with a half twist. I can always spot the landing far outside the wake and my right hand gives the rope a little tug when I’m midair to ensure a smooth landing.

wrastlin'The other scenario goes  straight to the wrestling mat, where I spent countless hours year after year for half my life, drilling thousands of takedowns, throws  and turns until my lungs burned and my muscles ached. I can still feel that hair thin tipping point in a match when my opponent would pressure forward against the collar tie just enough, triggering a series of slick maneuvers that lower my elevation, sending my prey off-kilter as I blast through a perfect head outside single and transition to a double leg for the takedown and two hard-earned points. My hand trembles as the ref raises it in victory.

But eventually, the mind snaps back to reality and you realize that those times are long gone. It has been quite a struggle to wrap my head around the loss of my athleticism, which was a key component of my identity, and still is. People may see a boxy wheelchair carrying an atrophied bag of bones when they first meet me, but that’s not how I feel. In my minds eye – as well as my muscle memory – I am still the emphatic hand talker that could do a backflip where he stood. And although I have come a long way in accepting my fate, I still have nights where the what-ifs and if-onlys like to come out and play.

There have been many late-night hours spent on YouTube watching videos of parkour, The Tough Mudder and American Ninja Warrior, wondering half-jokingly which activity would have left me paralyzed if I hadn’t gotten hurt on the mountain. Other times are much more frustrating; where I lament the many full contact sports I might have been able to compete in if my injury were not quite as severe. If I had broken my back instead of my neck, I might be winning sled hockey gold, or maybe just playing wheelchair basketball with some friends. There is also the painful reality that I could be legally bashing into other wheelchairs in quad rugby (a.k.a. Murderball) if the break was as little as a single vertebrae further down. That sucks.

But over the last month, I was given a glimpse into my old life, and possibly my future, by getting back on that hill where I was hurt 10 years ago. My senses were fully engaged for thBack on the hille first time since it happened. The sights and smells from the chairlift; the sound of snow crunching underneath my skis; the rush of wind on my face as I carved wide turns out of the side of the mountain; and the surge of adrenaline after I took a hard spill and survived. All of those sensations and more had been completely blocked off in my memory; trumped by the tragedy of one horrible night. Not anymore. It was as if something was unlocked within my mind and body. I felt like me again.

A huge thank you to Ted, Mark, Matt, Steve, Dan, Sara, Milena and everyone behind the scenes and on the mountain with Outdoors for All for an incredible three-week experience that did far more than unlock a slew of old memories, it reintroduced me to the athlete I thought I’d lost. I can’t wait to sign up for another session next year. Until then, who knows? Maybe skydiving is next?

UPDATE: Here is the link to a story and video that aired on KING5 News tonight by John Sharify and Scott Jensen: http://t.co/8gkwMxNOCw