The Salvinis Love Here

It’s said that a picture is worth a thousand words. As gorgeous as our wedding photos turned out, a thousand of them will never touch the way it felt to sit up at the wedding altar and look out on a sea of familiar faces when the background music began to fade. What’s crazy is that I already knew the day’s script by heart – every song selection, every step of the bridal parties, every word of the ceremony had been planned weeks in advance. But as the first few bars of the processional began to play, all the stressing and planning melted away and the gravity of the moment hit me square in the chest. It was finally happening.

Prepping a Massive Shindig

We’d been warned by countless friends and family that weddings can quickly become juggernauts where it’s easy to get buried in an avalanche of minutia. We were also told that months of meticulous preparation would fly by in the blink of an eye on the actual day. With that in mind, we wanted it to be more than just a party with a bunch of friends and family. As the first act of our marriage we wanted it to be a deliberate representation of the foundation of our relationship and a jumping off point for our new life together. To achieve that goal, we sought out the help of our good friend and spiritual mentor, Gordy Birse, to officiate and help set the tone. Over a handful of dinner and coffee dates he reminded us that weddings aren’t just lavishly expensive setups for a handful of instagram-worthy pics, but modern takes on an ancient tradition; a gathering of tribes to celebrate two spiritual being’s decision to merge their worlds and their lives into one.

Whittling down the guest list to fit within our venue’s 400-seat maximum capacity was by far our most difficult task. The running joke became that Claire’s family is huge (her dad is one of 13 siblings!), and I have way too many friends (also true). Talk about your all-time first world problems; being loved by too many people is something no one should ever complain about. At the same time we were still torn, because there are countless people who have played important roles in our lives and we could have easily filled a small arena. Add the fact that even if we skipped the vows, the meal, and all the speeches and dancing, our six-hour ceremony and reception would only leave us with 54 seconds (of course I did the math!) of paper-thin conversation with each of our nearest and dearest was troubling to us both, but we ultimately had to let it go.

After that, we dove into the aforementioned minutia. The wedding industry is a big business these days.  You’ve got to choose colors, themes, coordinators, officiants, and wedding parties; check out photographers, caterers, videographers, and djs; create save-the-dates, invitations, party favors and clever hashtags. It’s enough to test the strongest of relationships, and Claire and I managed to weather them rather well for a pair who notoriously struggle with the decision-making process. Probably the easiest choice was for our hashtag, which we lifted from a certain heart-shaped stone down in the desert, four words that have always carried a lot of weight in my heart because of the example set by a couple of perennial lovebirds, my Grandpa Ed & Grandma Betty.

5.18.18 – The Big Day

When it came time to put together Claire’s simple but elegant vision of her dream wedding, our tribes showed up in full force. Led by my Italian Drama Mama’s unique skill set as a professional cat herder an event coordinator, the morning of the event was an image of controlled chaos. We had family members on ladders hanging dozens of strings of white lights, Claire’s mom and aunts pushing grocery carts full of Costco flowers across the parking lot to the venue where a handful of my family were waiting in an impromptu assembly line to create centerpieces and other arrangements. By late afternoon, the two barns looked incredible and it was time to kick off the ceremony.

Maybe it was the fact that my emotions were on full tilt, but each of our musical choices seemed to hold even more weight than we originally planned. When the first few bars of piano from Five for Fighting’s “100 Years” began to play and 92-year-old Grandma Betty rounded the corner of the aisle flanked by my parents, it felt like we’d all been swept into our own tailor-made movie montage. Right behind them were Claire’s grandparents, Helen and Ted, who almost didn’t make it when Helen had to have emergency gall bladder surgery two days prior, but she didn’t let that stop her. She was such a trooper. The piano faded to Jason Mraz’s “Love Someone” as Claire”s bridesmaids made their way down the aisle, and his words captured the feeling of the moment perfectly.

 

Love is a funny thing
Whenever I give it, it comes back to me
And it’s wonderful to be
Giving with my whole heart
As my heart receives
Your love
Oh, ain’t it nice tonight we’ve got each other
And I am right beside you
More than just a partner or a lover
I’m your friend
When you love someone
Your heartbeat beats so loud
When you love someone
Your feet can’t feel the ground

– Jason Mraz, Love Someone

As if by Jason’s command, my heartbeat was in my ears when the music transitioned one final time to the bride’s processional song – an acoustic cover of Vance Joy’s “Georgia” prepared by the absurdly talented duo of Claire’s cousin Fiona and her boyfriend Will – and it felt like even the crowd disappeared. With perfect timing, Claire and her father stepped around the corner to the lead guitar picking out the lyrics “She is something to behold / Elegant and bold / She is electricity / Running to my soul,” and something deep inside me clicked, like a new door was opened. I can’t fully explain it, but something shifted.

As expected, Gordy’s wedding sermon was a poignant balance of the high hopes that come with relatively young love and the realities of what it takes to make a lifelong relationship dynamic, steadfast, and meaningful. He reminded us that Life has a way of blowing away the pixie dust of early courtships, and that the roots of our marriage would need constant attention and care to withstand the inevitable winds of occasional hard times. He said love is not fragile, that it is a choice we make every day, and to remember to have fun and laugh together.

Next came the sand ceremony. We had filled two separate jars with scoops of sand from the waterfront homes of our upbringings as well as our happiest places – Lake Tapps & Twentynine Palms for me, Whidbey Island & Three Tree Point for Claire – added a few other special ingredients, and had a perfect symbol of everything our friends and family had poured into us over the years. Every grain of sand represented a moment we had shared, a lesson someone had helped us learn, or a memory of good times that we then mixed (with my oldest niece, Ali, serving as my hands) to symbolize everything we were bringing into this life together. After exchanging rings (again with Ali’s help) and our short-but-sweet-by-design vows, there was nothing left except to be pronounced husband and wife!

With the formalities out of the way, it was time to party. From the Soul Train introductions of the wedding parties surrounded by all our loved ones to the Photo Booth full of props that seemed constantly full, there was ample evidence that our mission to blend all of our individual tribes was a definite success. Hopefully the food was good, we’d crammed a few bites before heading out in the crowd to thank as many of them for coming as we could before it was time for the toasts. Arguably the biggest hit of all, however, was my Aunt Mary’s cupcakes, which were 10 times as tasty as they were gorgeously arranged. After being sufficiently toasted (and roasted) by Claire’s sister and all four of my groomsmen, I finally got a chance to address the crowd.

I started off with my favorite Ralph Waldo Emerson quote that says, “What lies behind us and what lies ahead of us are tiny matters compared to what lies within us.” I’ve always taken it a step further that what lies within us is a mix of everything our tribes have graciously poured into us throughout our lives. Because as much as the day was supposed to be about us, we designed the party for everyone in attendance; to thank them from the bottom of our hearts for getting us this far, and for the continued support they are sure to give us going forward. It’s not often you get to have so many of the most important people in your life under one roof, which was a great opportunity to highlight a few of the key people who helped us get to that very moment.

First up were my mom and dad, who, for the last 45 years, have shown that love is more than just a word or even an emotion. At its base, it’s always an action. It’s about suiting up and showing up when and where people need you the most, which is exactly what they did 14 years ago that night, bringing me home from the hospital even though the doctors said it may not be a good idea. They fought for me until I could fight for myself, and now I get to follow their example as I fight for others with the Here and Now Project.

I also got to thank Claire’s parents for raising an incredibly strong and passionate woman with a similar heart for service, and for welcoming me into their family from the start. Over the years I’ve spent around them and their extended families – The Fosbergs on her mom’s side and The Trepaniers on her dad’s – I’ve come to see how they managed to distill the best of those worlds into a couple of amazing daughters. They are strong legacies I hope our kids can carry on.

Which brought me to the mother of those future kids, my new wife, Claire, for whom I struggled to find words. We’d come a long way since she wandered into my life during some dark days, and she’s helped me find a version of myself I’d always wanted to become, and I can’t wait to see what the future holds for us both. I then asked her to join me on the dance floor for an epic first dance that brought the house down and probably deserves a blog of it’s own to properly do it justice.

By the end of the night, we’d hit every note we had hoped to from the outset with incredibly few hiccups. The Universe, in all its chaotic glory, waited to show up until the honeymoon, thankfully (more on that later as well). It was a profoundly spiritual experience I hadn’t anticipated going in, and will easily rank at the top of my favorite days ever. It was a fantastic start to this chapter of what is sure to be an imperfect life together, the exact embodiment of what I hope it will mean for The Salvinis to Love Here, There, and Everywhere we go.

Photos by https://www.caitlynnikula.com/

Video by https://www.knotcinema.com/

The Revolution Will Not Be Paralyzed

Last week’s trip to DC was our shortest yet, but we packed quite a bit into those four days in terms of advocacy, growth, and memories made. Being my third year at the ROCH, I wasn’t as awed by the idea that I was about to be rolling through House, Senate, and Capitol buildings. Granted, not being distracted by the chaos of broken wheelchairs and lost luggage like the previous years helped me retain a little more of the education I received the day prior, so I was ready to take The Hill with my paralyzed tribe on Tuesday morning.

We caught a curveball, however, when we rolled in to Congressman Denny Heck’s office for our first scheduled visit and saw the breaking news about the Supreme Court upholding President Trump’s ridiculous travel ban. It’s interesting (and slightly embarrassing) how the gravity of news seems to hold more weight when it’s happening while I am in town. Such was the case on the final day of last year’s Roll when a left-wing nut job opened fire on Republican Congress members during a baseball practice for a charity event, seriously wounding Louisiana Representative and Majority Whip Steve Scalise of Louisiana. The whole ordeal cast a surreal shadow on the visit for me because it showed how idealism can easily be shattered by a senseless act, and here I was again watching history unfold, and feeling frustrated that there wasn’t much I could do about it.

The notion that that decision will somehow keep us safe is preposterous. Policies like this and the recent separating of refugees and their children give credence to those who say we are a country of xenophobic hypocrites who fail to recognize that a decent majority of our latest terrorist threats haven’t been of the vaguely browner people outside our borders, but a bunch of homegrown, crazy white dudes like the one who shot Scalise.

It definitely gave me a bit of a sour taste in my mouth as we kicked the day off, but I felt a little bit of relief as I bounced from office to office with my fellow advocates. Unlike the 36 years prior to my first participation on the hill, I could find solace in the fact that I was doing my part to affect a small amount of change in the areas I have experience. Since I’ve been going to DC, it has taken two years of collective advocacy to ensure Medicaid coverage of specialty medical equipment like the cushion that saved my life for power wheelchair users, and we were another year in to the fight for those in manual chairs while also trying to protect ADA rights and make our long-overdue case for accessible air travel.

As anticipated, it was awesome for Claire and me to be joined by Ian and Teena on our Hill visits. Because our stories and platforms are just different enough to counterbalance one another, we fell into a comfortable give-and-take right away. Having Teena and Claire’s perspectives as a mother of a quad and wife/OT practitioner, respectively, rounded out a robust representation of our local community’s issues. Add in a couple of heavy hitters in United Spinal board members Andy Hicks and Wendell Matas, and we had quite a formidable group of advocates.

In total, we made five visits on Tuesday, three together plus solo visits to our respective district representatives’ offices. The cool part for me was seeing familiar faces from Hill visits of ROCHs-past, which meant the dialogue had already been opened somewhat. I’m learning it’s all about fostering relationships with the people who can help affect change. For the most part we were preaching to the choir on each visit, which, on the one hand, is comforting to know you have allies, but it would’ve been nice to try and sway some of of those in opposition. All in all, it was a fantastic day with a lively group.

After a quick jaunt around the Capitol and Supreme Court buildings, we reunited with the rest of our peers that evening at a Congressional award ceremony to highlight a few key players’ accomplishments from the past year.  First up was Gretchelle Dilan, an advocate from Puerto Rico who Claire and I had met last year and spent some time with doing a flash mob for inclusive dance just a few months before hurricanes Maria and Irma laid waste to her community. Proving that sometimes The Path finds you, she stepped up and worked endlessly to help people with disabilities on the island get the services and equipment they desperately needed. Her acceptance speech for the 2018 Outstanding Community Service Award was a fierce call to action for us all to constantly push for those who need help.

Next came Earle Powdrell, an aerospace engineer whose brain stem stroke in 2009 rendered him a locked-in quadriplegic, leaving him only the ability to blink and move his eyes. Despite that, he manages to use a computer with a TOBII eye-tracker to communicate, delivering brilliant speeches to encourage others to never give up hope. For their relentless efforts on the national stage since the ROCH began seven years ago, he and his spunky and dedicated wife of almost four decades, Kathy, received the 2018 Finn Bullers Advocates of the Year Award. Their acceptance speech was a reminder that we are only as paralyzed as we think, that our voices can be powerful agents of change.

After the ceremony, a large group of us made our way over to Union Station to grab dinner and chat. I’ve always enjoyed my Congressional visits, but the opportunity to connect with peers from all over has always been my favorite part of the event, and it’s the reason I keep coming back year after year. Getting to hear about all of the projects they are working on in their home states always gets me charged up with ideas for things to incorporate back home.

The evening ended with a two-mile haul back to our hotels which shouldn’t have been a problem for the brand-new batteries in my backup chair, but Life decided to make things interesting. We played a fascinating game of late night wheelchair Tetris inside the Metro elevators to expedite the trip, but it wasn’t enough to get me back under my own power, and Mama Dreads & The Mrs. graciously pushed me the last third of a mile up the hill Homewood Suites was perched on that Ian later dubbed Mount Muthaf*cka in their honor.

The next morning featured “coffee” with Sen. Patty Murray, which was more of a photo opportunity with 100 or so other Washingtonians with a pot of coffee in the corner. One perk was having all of her policy staff present when we each had the opportunity to share who we were, and why we were there. After all the introductions were made, her transportation specialist made a beeline toward me to talk more about my thoughts on air travel.

After that we headed back to the hotel to pack our bags and charge my batteries for a trip down through a couple of my favorite monuments. Claire and I made a late night mad dash through the Martin Luther King and Franklin D Roosevelt memorials a year ago, but I wanted to experience them to their fullest extent with Ian and Teena because he and his mom have played such a major role in my evolution as an advocate. Our friendship goes back six years to him calling me an idiot in the nicest way possible, and that exchange led to the formation of The Here and Now Project.

Both MLK and FDR before him were major cogs in a social justice machine that we are still pushing forward through our own efforts and being surrounded history helped to remind us of the bigger picture. As we cruised around snapping photos of our favorite quotes, I couldn’t help but get the feeling that our elected officials could benefit from a field trip through their own backyard to remind themselves of the ideals this country was founded on.

One of my favorite features at Roosevelt’s memorial is a bronze statue of him in his wheelchair with a quote from his wife Eleanor engraved on the wall behind it that says “Franklin’s illness…gave him strength and courage he had not had before. He had to think out the fundamentals of living and learn the greatest of all lessons – infinite patience and never ending persistence.” There’s a vein of that strength, courage, patience, and persistence in Ian, myself, and all our paralyzed peers, so we snapped a picture of us knee-to-knee with our paralyzed forefather to recognize the considerable impact one paralyzed person can have.

We made our way back to the airport without needing to push me, and it was all wrapping up to be a phenomenal trip… Until the after flight home, that is, when Ian’s chair came up from under the plane at SeaTac with considerable damage. Thankfully, it’s his backup chair and he was able to patch it together enough to limp home, but it could have easily been significantly worse. It’s another glaring example of what we put at risk to make the trip and advocate on that very issue. That is three chairs damaged in three consecutive trips to DC, which is unacceptable.

Fortunately, I’ve been down this road plenty of times now, and know that this is just the beginning of a fight we will continue having for years to come until we get where we need to be. It was a good reminder that not all revolutions take the form of tidal waves, but trickles that cut slowly through granite-like opposition, and that I will have to continue to channel FDR’s special blend of vigilance if I hope to carve out another bit of equal rights for myself and those like me. With people like Claire, Ian, Teena, Wendell, Andy and so many others by my side, there is reason to be optimistic for what the future holds.

Spent.

The bottom line of my drive screen says it all. Another day on Capitol Hill with my tribe of  squeaky wheels. Too many connections to count and just enough hijinks to keep it weird. It all ended with a three-block push from Mama Dreadlocks & The Mrs. on brand-new batteries that couldn’t make it three miles on a single charge… Because, of course. Time to hit the rack for an early coffee with a senator and a late flight home for the crew.

More updates to come.

When in Rome

Maybe it was the lack of chaos that made everything feel so simple or perhaps we’d soaked in just enough of the whole atmosphere over the last couple years by osmosis. Either way it was a little surprising how easily we seemed to slip into advocacy mode today.

The majority of the morning and afternoon were spent neck-deep in congressional policy ranging from complex rehab technology and Veterans Affairs to the various bills concerning air carrier accessibility. It was a little surreal to find myself on stage sharing my extensive experience about the latter in front of more than 100 advocates from all over the country before introducing a panel of experts to discuss the subject at length.

We spent the evening strolling down Embassy Row with Claire’s childhood friend and soccer teammate, Kirsten, and her friend Teddy. The pair are getting their masters in advanced international studies at Johns Hopkins University, so we got to pick their brains about their dissertations on post-Cold War conflicts over burgers and beers.

If you’d have told me this would be a normal day in my life even two years ago, I would’ve had to spend half a day at the library just to figure out what the hell it all meant. What a fun day. Off to the Capitol in the morning.

Here We Go Again

It’s interesting, these paths The Universe chooses for you.

It was two years ago tonight that my first trip to the East Coast for United Spinal’s Roll on Capitol Hill went from disastrous to borderline absurd. What was supposed to be an epic vacation down the eastern seaboard to see the sights and advocate on behalf the disabled community turned into every wheelchair user’s nightmare when my chair got mangled by the airlines on my first real attempt to fly. The entire ordeal was a harrowing experience, but it showed me how resilient I am and left me hungry for more time in DC.

Having survived that debacle helped me see The Universe revealing a path when it happened all over again almost exactly a year later, this time on my way back from the 2017 ROCH. That hard-earned wisdom helped me get behind the curtain of the airline industry and gave me the opportunity to tell my story on the national stage. And we are another year later, back in Washington DC for yet another ROCH. It’s no coincidence one of this year’s major legislative focuses is accessible air travel. I know my experience is just a drop in the bucket when it comes to my community’s airline woes, but it feels really good to see my part the bigger picture.

What has me most excited about this trip however, is the opportunity to share the experience with one of my best friends and fellow advocates, Ian Mackay, whose personal platform of increased accessible trails throughout Washington and beyond (check out iansride.com!) is gaining traction ls well. Along with his incredible mother, Teena, this trip was sure to be an adventure we’d thoroughly enjoy.

 

Full disclosure, my first inclination for bringing him along on the same flight may have been a little more self-serving, thinking he could be the figurative first penguin I pushed off the iceberg to check for any signs of danger. As it turns out, my heavily dreadlocked friend might just be my lucky charm. We managed to make it all the way here without breaking either of our chairs OR losing my luggage. It’s got me strongly considering snipping off a chunk of his locks for future travels. He called it my lucky hippie’s foot.

Because no trip can begin without a little chaos, our efforts to rendezvous with friends were slightly derailed by confusion of hotels. Who puts Hotels on streets named Massachusetts and M streets? Thanks a lot Homewood suites! With that little detour behind us, we arrived at our final destination with barely enough time to get checked in at the event and see a few familiar faces before grabbing a bite to eat and heading to the hotel for some much-needed rest before a full day of seminars and education before we tackle Capitol Hill on Tuesday.

Words can’t describe how excited I am to spend the next few days with one of my best buddies & my bride in the nation’s capital. Looking back on the wild, winding path it took to get to this point, I’m going to make sure to soak it all in as best I can. If I’ve learned nothing else from these last few years, I know I need to ride the good times as hard as the bad ones because this too, shall pass.

Wish us luck.

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