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.

I have a secret…

It’s been nearly 3 years since those four words made the hair on the back of my neck stand up. “You know…If you weren’t my boss, I’d kind of want to date you.” We’d bonded over long existential talks and reading psychological texts while I was stuck in bed battling a pressure sore for an entire summer. Granted, a set of gorgeous blue eyes and a cute butt didn’t hurt her cause, either. In my mind, there was only one way to respond. “So… you’re fired?”

All that’s happened since is my life becoming remarkably better. She’s helped push me to new levels in my spiritual growth, as well as literally pushing me up and down long stretches of both coasts during countless calamitous road trip adventures. Her uncanny emotional fluency and unshakable positive attitude have helped keep my troubles in perspective and find the silver linings in all situations.

She’s taught me the importance of putting family first, the power of simple gestures like giving random strangers a hug, and that hours of fun can be had with a few games of cribbage, dominoes, or even a jigsaw puzzle. I look at the man I’ve become over these last few years — the healthiest, happiest, and most productive version of myself yet — and she is the one common denominator throughout that story.

Fittingly, we found ourselves in yet another precarious situation this weekend when heading down to the Oregon coast for a little vacation. While attempting to join the rest of the tourists out on the hardpacked sands of Long Beach, Washington, we managed to auger in the front tires of my adaptive van deep in a loose patch. Four different times. Thankfully, a few good Samaritans were on hand to push us out. All four times. Saints, those folks.

It was a great metaphor for the last few years of our lives; getting ourselves in over our heads, but always managing to find our way out with a a hand full of lessons learned and a couple of laughs. But when we got down to Cannon Beach, and I told her I had a secret of my own, she didn’t quite understand. She also didn’t notice the ring carabinered to Hank’s collar until I asked her four very important words. Her response, “Of course!”

 

Maintaining Momentum.

Here we are a week in to another debacle with a different airline and I am already seeing a familiar pattern from a year ago, which doesn’t feel so good. The initial post of the situation goes viral, people click the share button and express a few lines of outrage which gives the illusion that you are on the cusp of monumental change and the airline scrambles to put out the fire in the media while initiating the long process of repairing your stuff. The only difference is that this time it culminated with my ugly mug on TV.

This is when the hangover starts to set in.

Because despite all of the incredible support and attention my situation has garnered, I am still sitting in a seven-year-old chair with 1/10 of the battery life of the one whose carcass was just picked up yesterday morning. Life goes on for everyone else, but my battle is just getting started. It took six months to get the last one fixed, and my wheelchair rep says I have weeks at least before I’ll see this one again.

I can’t overstate how inconvenient that is to nearly every aspect of my life, which is already pretty tough with the whole paralyzed-from-the-neck-down thing.  I’ve spent the majority of the last seven days emailing legislators, filing complaints, and running all over God’s green earth trying to recover a bunch of items that were lost or broken between the round-trip flights. In other words, it’s back to the grind of life which is how momentum dies.

And that is my biggest fear.

I don’t want all of this discomfort and frustration to dissipate over time and become just another speck of dust swept under the rug for an industry that is too big for accountability. Because this story isn’t just about me, it’s about all of us. It’s about three of my good friends who were abused by this system in the last month alone – two of which had their chairs broken within hours of mine, and the other fell out of the clipboard on wheels they call the aisle chair and broke their tibia.

It’s about the people who would end up stuck in bed for days, weeks or months because they don’t have the ability to keep a backup chair in working order like I can. It’s also about the countless people who won’t even attempt to fly for fear of winding up with broken equipment, bones or both and have their story buried under 30,000 other disability claims against the airlines each year.

Which is why I need your help.

Right now, the Air Carrier Access Amendments Act is being reviewed by the Committee on Commerce, Science and Transportation, where it could easily die without significant bipartisan support. Click here to see if one of your senators sits on that committee, and then click here for a template letter to personalize and tell them just how important these changes are to you, me and the community.

At the end of the day, I can go multiple weeks or even months without my chair if I have to. I’ve done it before. But this story and its message can’t. I don’t want to look back a year from now and feel the same way I do about the last time I went down this road, with little to show of my troubles other than a handful of snarky tweets and useless flight vouchers. Let’s keep the momentum going and see how far we can push towards substantive change.

 

The Airlines Broke My Legs… Again

Just wanted to thank everyone for the outpouring of support over the last 24 hours. It took about a million zip ties to put my chair into something passable for a seating system to get me home late last night. We were able to piece together the chair United broke last year so that I have something to drive until Alaska fixes my new one. They’ve been much better at communicating, but the results will speak for themselves. For the time being, I will have to settle for limited battery power and less safety features.

No matter what happens, this is just the beginning of a larger conversation about accessible travel that must be had. This makes TWO trashed chairs from TWO different airlines in the span of exactly one year. Because I’m paralyzed from the neck down, these chairs are more than just my legs, they are also my arms and extensions of my brain; they are how I control my telephone, access my home and run my business. In short, they are my life, and that should not be put at risk every time I want to travel and Do Life.

Everyone knows The Americans with Disabilities Act (ADA) as a seminal piece of civil rights legislation, but The Air Carrier Access Act (ACAA) predates it by four years and prohibits commercial airlines from discriminating against passengers with disabilities. The law is more than 30 years old and yet I still cannot sit in my own seat on an airplane today.

If you want to see that change, contact your elected officials and tell them to support the new Air Carrier Access Amendment Act (link), which was reintroduced just last week by Senators Tammy Baldwin (D-WI), Richard Blumenthal (D-CT), Tammy Duckworth (D-IL), Maggie Hassan (D-NH) and Ed Markey (D-MA).

If you have a similar story of an airline breaking your chair, tell them about it. If you don’t, tell them about BOTH of mine. Exhibit A & Exhibit B.

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.

The Subtler Struggles

These road trips are a breeze when the inevitable adversity The Universe has in store for me is still mostly theoretical. Waxing philosophically about overcoming future struggles is easy until that first a bump in the road clanks your brain up against your skull, leaving you grasping at thin air to regain your bearings. Unlike previous trips, where my chair just suddenly stopped working, (twice!) or was demolished by a second-rate airline, this trip’s troubles slowly snuck up on me.

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It all started innocently enough. Claire and I spent Monday celebrating our second anniversary; exploring Joshua Tree National Park during the day, hanging with our favorite pair of 90-year-olds on an uncharacteristically rainy desert night. It was the perfect way to celebrate a fantastic couple of years, and I was all charged up with a metaphor about how, like century-old faultlines and majestic rock formations, good relationships take time and effort, but a lack of WiFi at our hotel stole my proverbial thunder. With a light day scheduled for Tuesday, I figured I’d get to it sometime that night.

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The next morning, Savannah and Nikita whisked grandma away for her hair appointment while Claire and I held down the fort with grandpa. The old man’s ears may be shot and his memory is starting to fade, but it couldn’t stop us from relishing every moment with him as we toured his neatly manicured by 5-acre oasis, setting out bird seeds and food scraps for the various wildlife he seems to be single-handedly sustaining. After reconnecting Ed with his freshly coiffed Betty, we then had to zip Claire down to the Palm Springs airport to catch her flight home. The girls and I snagged some dinner, leaving just enough time for me to drop in on a local iteration of my favorite spiritual program. I rolled out my meeting feeling a hint of a fever creeping up, which could mean only one thing.

We had noticed an abnormally pungent odor every time we drained my catheter bag for the last handful of days, which is usually a good sign I am brewing a urinary tract infection. Although it’s been an undeniably healthy six years since some of those little vermin migrated their way from my kidneys to my bloodstream causing me to flatline for five minutes in front of my family, the specter of a UTI always manages to stoke my fears. I guess dying will do that to you. To avoid exhausting usable antibiotics, I’ve been under strict orders not to treat infections until a fever presents itself, which tends to compound my anxiety at times as I wait for that ticking time bomb to blow.

Thankfully, I know what I need to do these days, and we set our bearings on the closest hospital. As a bit of an emergency room connoisseur these days, I can highly recommend the folks at Eisenhower Medical Center who set the land speed record for diagnosing, treating and discharging me. Ask for Heather if you’re ever there. She kicks ass. After a failed 1 AM wild goose chase through the streets of Palm Springs in search of a 24-hour pharmacist, we had to give in and retreat back to our hotel. It was past 3 AM before we finally got to sleep.

We spent most of this morning scrambling to tie up the loose ends caused by last night’s detour. We hastily packed up our stuff, bid farewell to the world’s greatest grandparents, filled my prescription, went back to the hotel after getting a call we forgot a handful of items, and hit the road with back to Sin City. We only had to pull over a couple of times to make sure we weren’t lost. I guess the moral of the story is that, despite my best efforts, I still have lessons to learn.

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Here’s to surviving another third day snafu. Some bumps are unavoidable, it’s all about how you recover.

PTSD in Palm Springs

I had planned on spending my Tuesday evening parked comfortably in front of my computer at the hotel, polishing off the previous night’s thoughts but, as usual, Life had other plans. What was supposed to be a quiet night after dropping Claire off at the Palm Springs Airport turned into a three-hour pitstop at the Eisenhower Hospital emergency room and a midnight scavenger hunt for a 24-hour pharmacy.

The short version of the story is that everything is relatively okay. Hopefully I’ll have time to expand on it tomorrow.

Cautiously Optimistic in the Desert

When you have a track record of twisted travel experiences like I’ve had, you eventually learn not to tempt the ire of the vacation gods with boastful words of a single day’s success. We began this trip with plenty of preparation and hard-earned wisdom from previous tours gone sideways, but were fully aware of the multiple new variables that could easily cause snags.  A new travel pit crew means a whole new team dynamic. The carcass of United Airlines’ slaughtered chair still unrepaired means putting my fancy new one in harms way. Throw in our first foray with a rental car, and you can see why we were a little on edge when we woke up near dawn.

After an hour-long wait in the perfectly sluggish assistance line produced boarding passes with two different departure gates, we found ourselves on a mad dash from N2, down an elevator, back onto the tram we’d just got off, up another elevator and ultimately to C15 with just enough time to board Alaska Flight 596. Claire and Nikita deftly handled the aisle chair transfer with the help of a nifty device a friend loaned me, but Savannah got hung up on the tarmac when the ground crew had to take extreme measures loading the new chair under the plane.

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Miraculously, we landed in Sin City nearly on time and my fully functioning chair was waiting on the jetway when we de-boarded the plane, so we humbly hightailed it to baggage where our rental car, a fiendishly red Toyota Sienna, was waiting with a full tank of gas. A handful of GPS mixups couldn’t keep us from the Lazy Dog Restaurant & Bar where we met up with  one of Claire’s former OT classmates, Jennifer Mawae, for a few hugs and a quick lunch. I met Jennifer and her husband Jonah on one my first dates with Claire, so it was fun to watch the two girls reconnect. Sadly, Jonah was a no-show. Some crap about studying for a PhD. He’s dead to me.

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The only thing we had left on the schedule was a familiarly bouncy ride south on Highway 95 in the Screaming Red Devil to a place where only a few people in their right mind would call there absolute favorite vacation destination. We made are way up the rutty and rugged path of Indian Trail Road to find my grandparents anxiously awaiting our arrival with fried chicken and homemade mac and cheese. The day seemed to be wrapping up rather nicely until the lock-in pin underneath my new chair got snagged on our mini ramp, leaving me highcentered and unable to get off. It took us nearly a half an hour, along with a few random cement blocks and pieces of scrap wood, to finally get free and head back to our hotel.

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In the balance of it all, today was a good day. We faced some challenges, felt our blood pressures rise a few times, but were still able to laugh about it all. That doesn’t mean shit won’t manage to get supremely weird tomorrow or somewhere further down the line, and that’s fine. The plot will reveal itself in time.