Goodbye to One of The Greatest

There really is no proper way of explaining him. Like any other force of nature, his energy and impact had to be experienced firsthand. My earliest memory of him is that he had a tattoo, definitive proof in a three-year-old mind’s eye that my Grandpa Ed was a pirate. His gravelly voice, perpetually tanned skin and adventurous spirit could make anyone think he’d dug up the fountain of youth on some remote Pacific island during his tours on the USS Tuscaloosa as a teenager in the early 40s.

Part of me knew that the day would eventually come – our last visit with the 91 1/2-year-old back in October featured about three conversations in a cycling loop, his dementia starting to take over. But another part held onto the childlike notion that my WWII veteran granddad would live forever; that, for the rest of my life, I could go down Indian Trail Road and find him at the end of his driveway in an “Old Dudes Rule” T-shirt waving an over-sized American flag like a man possessed.

Tragically, a respiratory infection set in just after Christmas and he was gone before we could even get a chance to get down and say goodbye. Life as I knew it came to a grinding halt. Although I had made a concerted effort these last five or six years to drink in every nuance of him that I could, sneaking as many videos and snapshots of “Eddie-isms” along the way, I still had infinite more quips, jokes and anecdotes I wanted to capture. That’s one of the most frustrating truths about life; you never know how many of those moments you have left.

Although I’d had months to prepare for the trip down for his memorial, there was no way of knowing how I’d feel until I got there. As we made our way up the hill towards the High Desert late last Thursday night, into Yucca Valley and through Joshua Tree on our way to Twentynine Palms, I could feel my throat closing more and more with every mile. Even arriving under the cover of darkness couldn’t hide the evidence of his absence and it hit me harder than I could’ve imagined.

The 5 acre patch of dirt he homesteaded back in 1950 and transformed into an oasis overflowing with fond memories for three generations had windswept sands piled like snowdrifts on the walkways and and fresh weeds creeping in through the perimeter. It looked as though, after a 70 year lease, the Desert Gods had already pushed ahead with their foreclosure. The world without him just didn’t make sense.

It wasn’t until I saw Grandma Betty cautiously waiting under the porch light that I felt my chest loosen up a bit. Over the next few days, all five of his children and most of his grand- and great-grandkids descended on the compound. It was the first time that many of us were together in more than a decade and a half. There were plenty of tears, but a good majority of them were accompanied by sidesplitting laughter as we partook in all the usual shenanigans that come with a visit to the desert. Some played games around the dinner table while others climbed the hill west of the house we all call The Saddle. After dinner we all had “Skippy Cups” of ice cream and did our best impressions of his corniest jokes.

At some point, probably midway through his memorial at the Eagles lodge that Saturday where friends and family shared story after story of his capricious nature and heart for helping others, the realization finally stuck – How lucky was I to have him so long? Many people don’t ever meet their grandparents, let alone get to experience a remarkable set the way I’ve been able to these last few years. Instead of dwelling on all the moments I’d never get back, I could hold on to the many gifts he’d given me over the years, whether directly or indirectly through his oldest son. Looking around at my aunts, uncles, cousins, family friends and acquaintances, I could see his legacy in every one of them, too. His gift of storytelling, his special brand of dad-joke humor, his craftsman’s eye, his ability to make anyone feel special and loved – it was all on display. It was the perfect way to memorialize one of the best of The Greatest Generation.

When we left the desert on Tuesday night, the emotions came rushing back to the foreground. Could this be the last time I bounce down that dusty old road?  Grandma said she’ll stay for a while, but is already considering a move closer to family and relative civilization. It’s obviously the right call, but it’s hard to imagine my trips to Southern California without making the long haul up the hill to what will always be my favorite place. As we awkwardly bounced around the corner of Mesa Road and onto the concrete, I was confronted with the idea that, as the only grandson to hold his name, I have no idea how I will even begin to explain to my future kids how utterly unique and almost magical their Great Grandpa Salvini truly was.

For some reason that first image of his tattoo flashed inside the still-three-year-old section of my mind. Maybe I’ll just say they’ve got a pirate’s blood running through their veins.

Edward Allen Salvini Sr – July 11, 1925-January 10, 2017

Full Circle

There is a Kierkegaard quote that says, “Life can only be understood backwards, but it must be lived forwards.” After taking a couple days to decompress from our travels, it’s time to take a look back at the last few days of this trip and see what I can learn. The first and most obvious lesson: What a difference a functioning wheelchair makes.

Having all three of my previous trips interrupted by malfunctioning and/or broken wheelchair parts, I almost didn’t know what to do with myself. Last year’s trip to Las Vegas to connect with fellow paralysis advocates from all over the country was cut short by a pair of broken motors. Of the three days we were in town, I was only able to catch the last hour and a half of the last day.

And granted, I did attend all the festivities for the Roll on Capitol Hill this summer, but you would be surprised how hard it is to focus when you can’t even control where you are going – let alone mingle and socialize with other attendees – which almost made it worse. It was like being stuck sitting at your desk while all the other kids were out playing at recess. I recognized a few faces from afar, but couldn’t play any of their reindeer games.

Thanks to the good folks at Alaska Airlines not mangling my only usable form of transportation, this conference was an infinitely more rewarding experience. I spent Thursday night at the welcome reception clumsily reconnecting faces with names whereas Saturday and Sunday were mostly devoted to a myriad of topics ranging from volunteer recruitment to fundraising to web layouts. And while I really enjoyed every one of the presentations, it was the people I could meet that was the most interesting.

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Listening to dozens of my peers speaking passionately about their various advocating efforts in their respective states, I could feel a constant buzz of inspiration simmering somewhere deep within me. Hearing about organizations that have been around for decades and others that are merely weeks into their formation was both motivating and relieving; despite my innermost fears, The Here and Now Project is on the right track, with plenty of resources I can call at a moments notice to ask for advice. Just this one picture above features representatives from Southern California, New York City, Hawaii and the good ol’ PNW.

After a brief lunch with the West Coast chapters on Sunday, the girls and I shot out to the suburbs to connect with Kevin Pine, my wrestling coach for the first half of my college career. We met his two daughters, Kennedy and Tatum, and got updates about his son Josh who is away at college, which doesn’t seem possible since it felt like only yesterday that one of my roommates and I babysat him as a toddler. Kevin whipped out a couple of photo albums from back in the day and we started retracing our time together when we stumbled upon a few photos from my very first trip to Las Vegas, triggering a few memories.

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It was the end of 1999, and I was a redshirt freshman on the CWU wrestling headed for the Cliff Keen Las Vegas Invitational, one of the toughest tournaments in the country where hundreds of malnutritioned 18-25-year-olds with mangled ears descend on Sin City to compete the first weekend of December each year. I wasn’t even supposed to be on that trip because I was second line behind my former roommate and future two-time All-American, Shaine Jamie. But, as always, Life had other plans.

I vividly remember standing over a boiling pot of water with a box of mac & cheese in my hand about to pour the noodles in when the phone rang. It was Kevin, telling me that Shaine was out and they needed me to be on weight and in Vegas the next morning. Only fellow wrestlers can understand the depth of sadness I felt as I set that blue box of noodles down, knowing that I had a decent weight cut in front of me instead of that tasty meal.

I eventually made the weight, and the team made it to Vegas. With powerhouse Division I schools like Oklahoma State, Minnesota, Arizona State and many others in attendance, our guys took quite a few beatings in that tournament, especially me. I think I was outscored 32-2 in two technical falls at the hands of athletes from West Virginia and the Air Force Academy. It wasn’t pretty. But the tournament itself was not the main part of Kevin’s plan for us. No, the more important matches were the duals against fellow Division II rivals like Colorado School of Mines and Western State Colorado the night before. He wanted us to have exposure to people working and competing at our own level. He wanted us to grow.

I learned a lot on those trips to Las Vegas and other places like Southern Oregon, Eastern Colorado, South Dakota and West Virginia. I also took a lot of beatings along the way that are only starting to make sense right now. 17 years later, I can start see the correlation in all my recent road trips to connect with a new set of teammates with wheels. You’re going to have to take your lumps no matter where you go, but you’ll be better for it in the end.

Now it’s time to get back to the grind and keep pushing for a little more growth.

 

Consistently Inconsistent

Day five started off quite similar to its counterparts from previous road trips with the whole crew nursing a bit of a hangover. I suppose it is the expected outcome from a late-night out chasing drugs earlier in the week, only there were no hazy memories of wild times with which to partially justify the feeling.

Even sleeping in a bit later than usual could not stave off the road weariness of the previous couple days. Add a dash of antibiotic anxiety when we noticed a decent skin reaction to a drug I’ve taken multiple times, and you can imagine where team morale started off this morning. In an effort to turn things around I did what any decent boss would do, I threw the pair of them off the roof. Calm down helicopter moms. They had seatbelts, see?

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The sheer terror in Nikita’s squinted eyes and the likely permanent nail marks she left on Savannah thigh turned out to be the perfect antidote for all their woes. See? Inflicting fear and pain on others. Boss of the Year! As for me, I got a boost by connecting with Mark Race, a paralysis survivor of nearly 40 years from the Northeast who we caught in the lobby just before the girls took their fall. He joined me in sadistically snickering on the rooftop as my victims team disappeared over the edge. Chair or not, he’s obviously my people.

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We filled a few vacant hours before the official kickoff of United Spinal’s event by doing very touristy Las Vegas things like hanging by the pool with scantily clad middle-aged men, managing to get lost on The Strip despite having no real destination and, ultimately, hurriedly stuffing our faces with wildly overpriced yet undernutritioned food as we raced to catch the shuttle back to the hotel in time.

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And then, of course, just like everyone of my last few chaotic trips, we came careening into our destination with all of the grace of a radioactive wrecking ball and were welcomed with open arms by people who have somehow come to accept me into the fold despite being a hot mess every time I show up. Hey, I guess I’m nothing if not consistently inconsistent.

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.

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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.

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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.

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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!

Triplog Day 4: Limping Gratefully Along

After a day like yesterday, there really is no way to recover other than to put one (figurative) foot in front of the other. That sounds really easy when even your figurative feet aren’t in working order. My chair was officially dead when I woke up this morning, meaning there would be no drunk driving through the casino. Instead of sitting downstairs to connect with my peers at the conference, it was strictly Flintstone-Foot Power courtesy of The Bobbseys to the wheelchair shop at 9 AM sharp. As usual, what followed was a complicated process.

What was expected to and be a relatively quick fix, turned into another wild goose chase that ended five hours later with me driving out of there in a Frankenstein-esque contraption I can barely drive, and what was left of my original ride being boxed up and shipped back home. As I limped my way towards the van, the gravity of the last 24 hours finally hit me.

I could’ve been all wound up that I had to watch updates of the Hawks game on the ESPN app of my phone instead of on a 37 story-high big-screen that I’m sure they have somewhere in this town. I could’ve been all wrapped up in anger and fear that I was missing such a huge opportunity to connect with paralysis survivors from all over the country. I could’ve been pissed that yet another vacation was devolving into the proverbial four letter word: T-R-I-P. I could’ve been in an all-around, justifiably shitty mood for all those reasons above and more, but I wasn’t.

If the last 12 years have taught me nothing else, it’s that there is some cosmic reason for how and when Life decides to show up. I’ve learned that things happen when they happen for reasons that may not be revealed until days, weeks or even years later, but eventually the purpose is found. Instead of focusing on the countless connections I perceived I was missing out on by being late to the conference, all I had to do was looked down at the man crawling around my chair, sweating through his NuMotion T-shirt to truly appreciate the one connection I had made.

image1I feel like the idea of heroism has become grossly distorted in today’s culture. Our misplaced obsessions have us looking to celebrities, athletes and multibillion dollar, CGI-infused movie franchises for our heroes. Then there’s guys like Steve Medina, an Afghanistan Vet, devoted husband and father of a kindergartner with another on the way who skipped dinner and a chance to watch his Niners with his family to help a stranger in distress. He’ll never be on Dancing with the Stars, sign a multimillion dollar contract. or have an action figure made in his likeness. In fact, he didn’t even get paid for the 8+ hours he slaved away over the past two days trying to restore my mobility and independence, piecing together a wildly imperfect, but perfectly functional loaner chair with the the few parts he had laying around. For him, it was just another day at the office. For me, it was a game changer. He was my road trip hero.  Maybe I’ll send him a customized cape to say thanks. On second thought, spandex. Definitely spandex.

At the end of the day, we made it to the conference with two hours left to spare, where I happened upon a table with a couple of guys who also were both paralyzed in skiing/snowboarding accidents. I guess I arrived right when I was supposed to. Now I get to take my special lady friend out to Cirque du Soleil to celebrate the eve of our one year anniversary, Las Vegas style. Yeah, my life isn’t so bad after all.

This Guy.

He is the ultimate fixer, a jack of all trades. He hit home runs on the ball field, won races on the motocross track and built his family a home with his own bare hands. He’s fabricated, repaired or repurposed everything from houses, dune buggies and racecars to elevators, computers and wheelchair parts. He’s an expert with every tool and if you can’t find one that fits the job, he’ll weld two together to make it work. He’s been a carpenter, an elevator mechanic and the best damned boat driver a spoiled kid could ever ask for. He is my dad.

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He is from the old school, where talk is cheap and you are defined by your actions. He’s never been the “I love you” type, but he stayed by my side when I was paralyzed, refusing so much as to leave my hospital room long enough to take off his ski gear that first week. And when the doctors said people like me never go home, he gave them a two syllable response. “Watch me.”

I can’t imagine how tortured his inner fixer must have felt as he left for work each morning to work on corporate America’s elevators when he couldn’t fix his own son. It’s been more than 11 years since those dark days and I hope he can now see that he never really needed to; he had already given me an amazing set of tools that have helped me become the man I am today.

Happy Father’s Day Dad. You gave me your fighting spirit, your athletic genes, your unquestionable work ethic, your engineer’s mind, your craftsman’s creativity, your razor-sharp wit and some pretty epic facial hair. We’ve never been too good with the mushy stuff, but I want you to know that I love you all the same. I am damn proud to be your son.

From Another Mother

I was seven years old when my family moved to the Lake Tapps area that would be my home from then on. That’s when I met a kid named Kurtis Sandmire. We were both the tiniest kids in the second grade and our initials were “K.S.” but that’s pretty much where our similarities ended at the time. While he was out on the football field picking fights with the fifth-graders, I was busy playing My Little Pony with the likes of Mariah Goodchild and Krista Venn. I’d like to think I was a ladies’ man in training, but the truth is that I was a big wuss. He scared the shit out of me. I dodged him on the soccer field for years and it wasn’t until we found common ground on the slopes of Snoqualmie Pass through our district’s ski school that our friendship really started to develop.

Our paths parted after sixth-grade when he opted to transfer down to one of the Auburn junior highs so he could wrestle and play football, and I chose to continue wrestling in White River. Our seventh grade years we were both league champion 78 pounders in our respective counties, and suddenly there was talk of a potential Kurtis and Kenny rivalry in our tiny circles. Thankfully, whatever higher power I have made the merciful decision to have my growth spurt start before his. By the time we reconnected in ninth grade, I was wrestling up at 115 and he was still down at 85, but the weight differential was erased when we stepped on the mat for our first practice. He gave me all I could handle and more. A year later, we shared an experience that altered the way I looked at friendships forever.

It was our sophomore year when, rather than being fed into the national powerhouse that is/was the Auburn Trojans, we opened Auburn Riverside High School and were forced to build a wrestling tradition from the ground up, myself at 122 and Kurtis at 101. For warm-ups, our team played a game called “Slap Back” which, as you can imagine, was just a much more brutal version of tag that also incorporated participants kneeling behind unsuspecting victims so that someone could shove them head over heels onto the mat. One day I made the ill-advised decision to kneel behind our 148 pounder, Jason, a known tough guy from the rough side of town who I’d watched cram some guy’s face into a car bumper during a fight in the school parking lot on the first day of school. As I probably should’ve expected, the instant he was tripped,, he popped up, spun around and slapped me right across the face. Stunned and scared, I backed away from what was sure to be a one-sided beating. That’s when I saw flash out of the corner of my eye, and Jason disappeared from view. Kurtis had hit him square in the jaw and was on him like a badger on a rattlesnake.

BrothersThere is a special bond that develops between wrestling practice partners that is almost thicker than blood itself. It probably has something to do with banging heads, fists and limbs, day in and day out, in effort to push each other to the next level that makes you invested in your partner’s successes more than any other sport. I can’t tell you how many times our practice sessions in the backyard got a little too scrappy to the point that our moms would have to get out the hose to break things up. Despite our elevated tempers, our brotherhood never wavered. Our paths parted again after we graduated, but we reconnected soon after his first daughter was born (incidentally, the same day as my oldest niece).

After I was injured, a lot of my friends, understandably, had trouble coming around and seeing me. It’s hard to see a friend in such dire circumstances, I would have struggled if it were one of them in my place. Not Kurtis. He and his family were constant visitors all those years I was a shut-in at my parents’ house. It was Kurtis that helped bring me back out into the world, dragging me to the state wrestling tournament every year so I could connect with old college teammates. And those few times when I have had a caregiver bail on me, it has been Kurtis who came and slept on my floor because he didn’t want to not hear me calling from the other room. He’s had my back for as long as I’ve known him, and I love him for it.

He turned 35 today, and I got to give him one of my favorite pictures of us from back in the day. Covered with piercings, tattoos and arguably more scar tissue than myself, he’s still as intimidating as he was the day I met him back in the second grade. But that rough exterior covers one of the warmest hearts you will find on this planet or any other, and it shows every time he greets me with a kiss on the top of my head. He is a loyal husband and an incredible father, and I couldn’t be more proud to call him a my brother of almost 30 years. He has taught me how to be tough, and he also taught me how to be gentle. Happy Birthday, Buddy.

She Held Me Up

They say a picture is worth a thousand words. I found this one of me and my mom on Kristen’s phone after she passed. While it may not be the most flattering shot of either of us, I think it says just about all there is to say about what she’s meant to me these last 35 years.EmptyHappy Mother’s Day to my amazing mom! Thanks for all those long nights early on when you slept standing up right outside my door because I would call every 15 seconds. Thanks for swooping back in when my world fell apart all over again four years ago. But most of all, thanks for holding me up – both figuratively and literally – when I wasn’t able to stand.

Love you, mom!

Remembering a Giant

I don’t know how, but in my rush to post something to commemorate a decade since my accident I managed to forget to mention an important group of individuals that have been vital to both my survival and sanity over the years – the motley crew of quadriplegics with various levels of function who meet up regularly and affectionately call themselves The Quad Squad. We got together at my place the Sunday before my anniversary to celebrate 10 years of surviving paralysis, but it was a bittersweet event after hearing the news that a member of the group and one of my dear friends had passed away just the day before. Actually, to call Dan McConnell just a friend would be a serious injustice. If our paths hadn’t crossed right around this time four years ago, there’s a good chance I wouldn’t even be alive.

It was shortly after Kristen and I had officially become a couple and I was midway through my 2 1/2 year battle with an infected pressure sore caused by an improperly maintained wheelchair cushion that had made its way to the bone and kept me bedridden the majority of my days. Still a relative shut-in, I was reluctant to go to the Kiwanis fundraiser her folks had invited us to but, seeing as I still hadn’t met them, I ultimately gave in. It couldn’t have been more than 15 minutes after I parked at our table when the quiet, unassuming IRS worker rolled up with a glass of wine balanced precariously in his partially functioning hand and introduced himself.

Paralyzed at 19 from a car accident back in 1970, Dan had a wealth of wisdom and experience and we talked about everything under the sun. From the evolution of assistive technology to the pitfalls of air travel for those dependent on power wheelchairs, I soaked it all in. Hearing his stories blew my mind open to so many possibilities for my life that I had never considered. As the evening wore on, our conversation naturally shifted toward the present, and I told him about the sore I had been battling. He then told me about the seat cushion he was sitting on and how it completely prevented pressure in the areas where people like us are most vulnerable.

Not only did that conversation save my life  – within the year I was healed thanks to the cushion and haven’t had a pressure sore since – but it also lit a fire inside me that burns to this day, because the cushion he was talking about had existed since before I got hurt. And yet, there I sat, six years post-injury and had never heard of it. None of my doctors or therapists had so much as mentioned it while I had spent half my paralyzed life in bed trying to recover from issues that that singular piece of equipment could’ve prevented altogether. Right then it became frustratingly clear that my survival hinged not on the clinical knowledge of medical professionals, but the practical life experience of other people living with spinal cord injuries. From that point forward it became my mission to connect with as many of those people as possible, an idea that became the genesis for The Here and Now Project.

Another gift Dan so graciously breathed into my life came in the form of his incredible wife Gail. She was just 17 when her then-fiancé became a C4-5 quadriplegic, but she took the tragedy in stride. She chose to stay and be his primary caregiver and married him a year later. Just a couple of kids and a wheelchair, they proceeded to do life all over the globe, whether it meant forgoing his power chair for the much lighter manual one on their trips to Hawaii, or her tossing him onto a mattress in the back of a pickup truck late at night while camping with friends. Their relationship was a pivotal inspiration for Kristen and me, because it showed us that paralysis couldn’t get in the way of two people willing to be flexible yet persistent for the sake of love.

On the morning of Saturday, February 8th, Dan succumbed peacefully to complications from an infected pressure sore similar to the one I was battling the day we met, leaving behind the chair that was his primary mode of transportation for 43 years but couldn’t prevent him from living a rich and full life. As I sat there amongst all my wheeled friends and their loved ones in my living room the next day sharing stories and experiences, everyone could feel the gaping hole left by the soft-spoken trailblazer’s absence. But in that moment, I couldn’t help but notice how it all might not have been possible if it weren’t for that chance meeting years ago as well as his generosity and willingness to share.

Isaac Newton once wrote, “If I have seen further it is by standing on the shoulders of giants.” Dan was one of those giants for me, and I am proud to be part of his legacy.

Dan & Gail McConnell, representing Team Kenny at the 2013  SCIAW Walk & Roll

Dan & Gail McConnell, representing Team Kenny at the 2013 SCIAW Walk & Roll this past October.

Special Day for a Special Girl!

Everyone knows I have the three most awesome nieces on the planet who are loved (and spoiled) equally by their Uncle. But I have an extra bond with one of them because she’s the only one I got to hold, walk with and be a proper bad influence on. Her name is Alexandra, but you can call her Ali or Al. I just call her Bug. She turned 11 today.

When she was about six months old, I would stand on the bed in my folks’ room, hold her tiny little body up to the ceiling and drop her onto a huge stack of pillows I’d laid out around my feet. Onlookers would have called CPS if it weren’t for the loud giggle she let out each time. I’d like to think it helped contribute to her insane athletic prowess, or at least her daredevil streak.

She started walking at eight months and took her training wheels off at two and a half. Waterskiing by the age of four and wakeboarding at six, I don’t think she’s ever met a physical challenge she couldn’t master within a week. She proved that point when she was five years old after scoring five consecutive goals in her first soccer game without even having a single practice. Pretty sure that is more goals than I scored in all 10 seasons that I played. But as storied as her athletic career has already become, there’s something she holds inside that shines even brighter – her heart.

She wasn’t even a year and a half old when my accident happened, but became one of my best nurses almost instantly. I’m not kidding. I developed pressure sore on my backside when she was five, and she looked at my mom like helloooo? and said, “We have to take the pockets off Uncle’s jeans.” The thought hadn’t crossed our minds, but that’s just Al. She just has this innate ability to empathize with any person or situation. You can see it anytime she holds a newborn or plays with  an animal – just a gentle confidence and ease that far surpasses her age.

I got to spend most of the day with her yesterday. We shopped for shoes and Halloween costumes, ate at Panda Express followed by Baskin-Robbins. It’s hard to fathom how quickly the last 11 years have gone by. She’s not that little baby I used to throw in the air. Who would’ve thought she’d grow up to be my favorite athlete and one of the coolest kids I know? No matter how old she gets, she will always be my little helper and one of my very best friends.

Ali-bug

Happy birthday, Ali-bug!! I’m so proud to be your uncle!!