The Saga Continues…

It’s been a couple months since my last rant about the abysmal failure shortcomings of United Airlines customer service, and I have had far too many blog worthy experiences that you should’ve read about by now, but you’ll just have to settle for a brief summer recap.

I got the fancy new wheelchair that I’d ordered before we left for the East Coast (no thanks to United, insurance pays for one every five years). Within a week and a half, I nearly got ran over by a train in said fancy new chair thanks to some sketchy crossing signals. Good times! I also bought a fancy new van. Okay, technically that was before we left, but whatever. In early August, we held the biggest event yet for The Here and Now Project, which was a massive success despite said fancy new van getting its bumper smashed in with less than 2000 miles on the odometer.

Thankfully, the bumper got fixed a week later at a gas station by a crafty good Samaritan with a blow torch and a crowbar as I was heading out to spend some quality time with Ian Mackay, one of my best friends who was smack dab in the middle of an epic journey from Victoria BC down to Portland, OR in his power wheelchair to raise awareness for accessible trails in Washington state. (Click here to go read his story. You won’t regret it.) Unfortunately for him, he got sucked into the crazy vortex that is Kenny’s Law when two of his of support team’s bicycles were stolen off the locked bike rack of his van while it was parked in my driveway one of the nights he was using my place as homebase. Sorry bud!

It hasn’t been all borderline calamitous situations, though. Earlier this month I wound up on a panel of judges for Miss Africa Washington State, which was equal parts surreal and humbling. While I knew next to nothing about beauty pageants and embarrassingly little more about Africa heading into it, what Claire and I thought would just be a fun night of getting gussied up (read: rare & slightly uncomfortable for yours truly), turned into a truly inspiring experience. Seeing young women speaking passionately – often in their second or third language – on heart wrenching platforms like forced child marriage, the AIDS pandemic and female genital mutilation was moving to say the least. After such an incredible display of courage and advocacy, we left with our minds and hearts just a little more open. It was awesome.

I’ve also had a constant flow of friends, neighbors and subcontractors tearing apart my backyard to install an outdoor kitchen as well as a swinging bench and some hammock posts. Plus, Claire has inspired me to overhaul my diet. It’s easy to forget that your body is a machine, and I’m amazed that how a few small changes to its input can dramatically affect the output. There’s a lot of organic food in the house lately, we’re making stuff like a healthier version of trail mix, and she actually has me considering drinking shit like kombucha. The jury’s still out on that last one, though.

So yeah, there’s your recap. I think you are pretty much caught up.

I tell you all of these things for a couple of reasons. The first is to point out that, despite my best efforts to resume a normal life, The Universe seems to have other plans. Apparently you people need entertained, and the Grand Puppeteer in the sky is happy to oblige. The second, and more important reason is to highlight that this is the exact kind of minutia that the folks at United Airlines count on so people they’ve screwed over – like me! – will get bogged down by the daily grind of life and lose the fire they originally had when the incident first occurred. And, honestly, up until a couple weeks ago, I have to admit that it had kind of worked.

Something readers may not know about me is that I have a deep rooted fear of authority. Combine that with a lifelong, slightly unhealthy need to please others, and you start to understand how confrontation is not my strong suit. I’ve been actively working on those character defects over the last few years, but it’s easy to fall back on old behaviors,. So when I got home and my fancy new chair showed up a couple weeks later, it acted as the first touch of sandpaper to the chip on my shoulder. And as I got busy planning the event for my nonprofit, the other chair was incrementally pushed to back burner, and the people in my life started to notice that I was slowly losing my edge for retribution, and I couldn’t disagree.

Fortunately, I hadn’t lost it completely by the end of July when I got a call from one of United’s severely overworked damage control liaisons named Tracy, who had had the supreme misfortune of speaking with me after both of my previous Twitter outbursts. With a sweet Texas drawl, she asked if my chair had been fixed, to which I responded, no, it still hadn’t because we were waiting on parts. She then said United wanted to offer our group free flight vouchers to compensate for our  travel woes. The total amounted to less than 10% of the financial cost of that hellacious trip, not to mention the collateral trauma my team and I suffered at the Newark airport, University Hospital ER and Philly Amtrak station, ultimately spending 11 of the 14 days of what was supposed to be our vacation without a functioning set of legs I could control.

Even well seasoned Tracy could not stifle her laughter when I asked incredulously, “With your airline or the one of my choice?” Catching herself, she responded in the negative, but said I was free to gift them to anyone I might want to. As if I would recommend their airline to anyone I know at this point? Thanks but no thanks, I told her, this was probably a conversation for someone above her paygrade anyway. After another slightly uncomfortable laugh, she said she would send the vouchers anyways, in case I change my mind.

Although I saw the email come through my inbox, I never even bothered to open it because, as you have read above, life got busy real quick. There were events to plan, vehicles to wreck and bikes to have stolen. Life continued on with distractions both big and small until the emotions surrounding this horrifying experience finally began to melt into my subconscious with the rest of the anecdotes of vacations gone sour.

Then I got a call a couple weeks ago from my local wheelchair repair people informing me there was a hang up with my repairs because United’s mobility outfit in New Jersey was not answering their calls. Realizing it had been more than a month since I’d heard from Tracy, I finally went back and found her email, looking for a few specific words. Sure enough, halfway down the eight paragraph message, I found the words “liability release” – a few sentences of legal-speak they think completely absolves them of blame for the hell we all went through –  that starts with the words “By accepting this travel voucher…”  Now I see why Tracy was so hell-bent on making sure I got the vouchers.

Consider the fire successfully re-lit.

Because the fact of the matter is, I made it home in one piece only because I have the resources to bring a well-trained staff that can handle borderline life-threatening situations, along with enough connections in the wheelchair industry to get my needs at least partially addressed while the people responsible did little more than tweet. But what if I didn’t have those resources or the connections? What if I hadn’t had the random dumb luck of timing this trip right before my new wheelchair arrived?

If it weren’t for all of that, I’d still be stuck in a broken wheelchair for the last three months with nothing but a few new scars and a handful of worthless ticket vouchers to show for it. What’s worse is that this story isn’t all that unique. I’ve heard countless variations of it both before and after I boarded United Airlines flight 1695. The whole situation has made a couple of things crystal clear: I’m not nearly as special as I like to imagine I am (whiskey-tango-foxtrot?), because  as much I wanted the whole ordeal to be the rope that finally pulled down one of the largest barriers to accessible travel for folks in my community, it’s more likely to be one galvanized link in a much bigger chain that eventually does the job.

This situation is much bigger than me and my experiences… And the fight is only beginning.

… And I need to blog more. Stay tuned for a little of both.

 

 

 

Customer Service Fault

Coming home from a road trip is always a little tough, but this one has been infinitely more difficult. It’s been a full three weeks since United Airlines broke my wheelchair, and the thing still hasn’t been completely fixed. Instead of focusing on The Here and Now Project and our upcoming events, I have spent the better part of the last eight days feebly trying to tie up loose ends between the five companies in six states that have had a hand in getting my legs back into working order.

If you catch yourself thinking that shouldn’t be my job, you’re exactly right.

The fact is, I’ve heard nothing from the airlines since I blew them up on Twitter two weeks ago besides a couple of five word emails covering their asses with the mobility company in New Jersey. I emailed them 12 days ago to inform them that my chair was still faulting and heard nothing. The guy in Jersey has followed up multiple times, but the ones truly responsible for the nightmarish start to our vacation don’t seem to be bothered much by it.

The whole situation is completely surreal. If they had broken my actual legs, this would be an open-and-shut personal injury lawsuit, complete with compensation for pain and suffering and then some. But because of the general, systemic ignorance towards people in situations like mine, it’s much easier to write off what happened as, “it’s just his wheelchair.”

But it’s not just my wheelchair that they broke. That flight ended with my backside bloodied, and a trip to the emergency room. It led to a panicked run for my life in the Amtrak station.  If it weren’t for an amazing team and my own support network, I might still be stranded on that bench in Philly.

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No, that’s not me trying to start a new Instgram craze. Quadriplegic planking! Everyone’s doing it! That’s a panicked pressure release to avoid losing my entire summer (or much, much worse) to a sore because the wheelchair United Airlines broke almost caught fire.

In total, I spent 11 of my 14 days on the East Coast without my legs. And for all those troubles, the only thing I’ve gotten is a couple of tweets. I find it a little more than infuriating that I have to go all seventh-grade on social media to get a phone call from these people. If that’s what it takes, so be it.

 

Recapping the Roll and much, much more.

In the blink of an eye, a week has gone by since I posted and I’m back on the West Coast. How did that happen? Whereas the first week dragged on at a torturous pace, the second zipped past like one of Washington DC’s metro trains (which were infinitely more accessible than their New York counterparts, by the way.) The last seven days were a mixed bag of sour and sweet experiences that all seemed to end with late nights, so here’s a recap of what all you missed.

Super Tuesday: 

The physical act of Rolling on Capitol Hill looked nothing like I had imagined it would when our plane first took off from SeaTac airport couple weeks ago. I never would’ve guessed there were series of catacomb-like tunnels beneath our nation’s capital, or that Amanda would be pushing me through them in a manual wheelchair from the House Building to the Senate Building, passing folks like John McCain and Lindsey Graham along the way. An hour later, it was back to the House. Then back to the Senate. Wash. Rinse. Repeat. She’s a trooper, that girl.

The meetings themselves had a much different feel than I anticipated as well. Instead of rubbing shoulders with senators and congressmen/women, we were met with handfuls of policy-wonky aids with hard-hitting questions I wasn’t quite prepared for. Thank god United Spinal had the forethought to pair me with a DC veteran named Andy Hicks from Bainbridge Island, who deftly fielded the tougher ones and let me swing freely at the softballs about my personal experiences. Those who know me know I’ve never shied away from a chance to flap my gums, and this trip gave me plenty talk about.

I left the capital more than a little exhausted, but motivated as well. Besides liking to talk, I really like to debate, so those unanswered policy questions loom large inside my head. If I’m going to be an advocate on behalf of my community, I think I’m going to need to do a little bit more homework while also keeping the pulse of current events. It will be a hell of a lot easier now that I have been in the belly of the beast and know what to expect next time.

Wednesday – Sitting, Waiting, Wishing:

We heard late Tuesday afternoon that my wheelchair was fixed and that it would be “out for delivery early Wednesday morning” which we clearly misunderstood actually meant 7 PM at night. Better yet, the girls didn’t get but 5 feet inside the hotel after the driver dropped off the chair that our favorite “CONTROLLER FAULT” message started flashing on the screen, making it a full 11 days since United Airlines busted my legs and we still weren’t out of the woods. Yay! Fun times! A long call with my wheelchair rep back home and some strategically place electrical tape made the trip a few blocks over to Bolt Burger for milkshakes possible, so the day was not a complete bust.

Thursday – Tentative Tourism:

In what apparently was a pattern for Thursdays this trip, Claire and I were finally able to get out and see the sights. Just like the previous week in NYC, she helped me soldier through a handful of initial controller faults so that we could properly explore the rich history on display in nearly every nook and cranny of our nations capital. Miraculously, we made it most of the day without too much of a struggle.

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After dipping into Smithsonian Museum of American History to escape the heat, we spent much of the evening meandering around The National Mall; starting near the Washington Monument, down through the WWII and Vietnam war memorials and finishing at the Lincoln Memorial before heading back through the Federal Triangle towards our hotel. The neoclassical design of the area seemed to swallow us whole, making the long walk/roll feel like an exposition of architectural history. It’s fascinating how the downtown buildings blend new construction with centuries-old buildings. Before we knew it, the day was over and we had our first successful touristy day of the trip in the books.

Friday – Fun with New Friends:

After yet another consultation with a wheelchair technician early in the morning where we may have finally diagnosed the problem, we left our hotel with a little more confidence that my ride might hold up long enough to get us home to the replacement parts we need. We filled our late morning and afternoon with a couple more museums before catching the subway down across the Potomac to the Pentagon were we met Ian and Julie Sandstrom, a couple from Virginia Beach we had met through through a Facebook group focused on navigating relationships after paralysis.

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A four-hour drive to meet virtual strangers may sound a little crazy to some, but there is an inherent bond between SCI Survivors and their loved ones, so we were bantering like old family friends within minutes of sitting down at a local Mexican restaurant for dinner. We briefly toured the Pentagon’s 9/11 memorial at sundown and made plans to connect at the capital for our last full day in DC.

Saturday – Saving the Best for Last:

We met Ian and Julie at the National Air and Space Museum just after noon. Being our third straight day exploring yet another Smithsonian, it only took a couple of hours before we were officially all museum-ed out, so we opted to brave the heat and check out a few more monuments. We made a lap around the White House before stopping at some benches just north of the Reflecting Pool to chat. It is always awesome when Claire and I get to spend time with people who understand the unique trials and triumphs that come with a relationship where paralysis plays a part. Every couple we meet gives us another tool or six to work on our own relationship.

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We closed out the night at the Thomas Jefferson Memorial, where I could feel an inkling of frustration start to flare at what this trip could have been if it weren’t for all of the trouble early on. But as we sat at the foot of the former president’s statue reading some of wise his words, it was a good reminder that true wisdom demands life be looked at on a much longer timeline than a few uncomfortable days. Yes, these last couple weeks were extremely difficult, but I vaguely recall getting something in the mail right before we left about life starting at the end of your comfort zones. And as uncomfortable as it most certainly was, I can’t help but humbly acknowledge that I was put on this path for a reason. There will be plenty more trips to come. This one was about giving me a platform to use my voice to push for change.

Sunday – Fear and Loathing at 40,000 feet:

The only thing left was another five hour tour without my legs in the not so friendly skies. I mean, what’s the worst that could happen? Heh heh…*gulp*

We met the Sandstroms at the Pentagon and they gave us a ride to Arlington Cemetery for quick tour before dropping us off at Reagan International Airport. Armed with a handful of extra tips we’d gleaned from the overwhelming response to our little viral video a week earlier, we rolled up to the check-in desk for Alaska Airlines ready to fight for proper treatment. You can imagine our surprise when they didn’t even blink at the notion of Amanda going down on the tarmac with my chair. Hell, they even gave her her very own reflector vest.

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We found the flight experience with Alaska Airlines to be diametrically opposed to that with United. From check-in, to boarding, to the flight crew themselves, everyone we came in contact with went over and above the call of duty to be as accommodating as possible. Granted, it was still extremely uncomfortable and cumbersome due to the flawed protocol that exists, but a little bit of effort by the people on the ground (and in the air) made our lives remarkably easier for the five hour flight home. Plus, they managed not to trash my chair, so they had that going for them as well.

Monday – There’s No Place like Home

We spent most the day recovering from jet lag and reflecting on the entirety of the trip. Even with everything we had to endure, this will still probably go down as my favorite just because of all the incredible things we got to see. I have to be honest that, for a couple minutes in each town, I caught myself seriously contemplating a move to the East Coast. It was easy to fall in love with the concrete jungle that is NYC, the colonial feel in Old Philly, and the heavily marbled halls of DC. Each city has its own distinct feel, but they all held a similar magnetism which triggered a bit of my closeted wanderlust. Maybe it’s the melting pot of cultures and languages on display. Maybe it’s the sheer density of the people and historical places around every corner. Maybe it’s the fact that everyone on that side of the country appeared a little more plugged in than their counterparts on the other side. But all it took was one peek out the left side of the plane to remind me why I love living in this corner of the states.

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It’s good to be home. I’ll take another day to rest, but then it’s back to work. New York, Philadelphia, Washington DC… You may have won this round, but we will be back soon for another go. Thanks for all of your support from both sides of the country, everyone!

Squeaky Wheels

Returning to the scene of the sparks was a little off-putting yesterday morning, but we had to take the train to reach our final destination of this circus we’re calling a vacation. I’m not ashamed to admit I got a little twitchy as I was pushed past the bench I spent half the night marooned like a pirate without any rum. The ride from Philly down to DC was also a little PTSD-ridden as well, because I distinctly remember a familiar calm setting in on our way into town right before everything went sideways.

Amazingly, we made it to the nation’s capital with little fanfare besides the taxi juggling act of getting the team, our luggage, myself and the carcass of my old chair to the hotel. After hauling all our junk into our rooms, we were finally able to sit down and relax. Claire and I freshened up and went down to check in for conference. Within minutes, we found ourselves chatting with folks from all over the country. Minnesota, Tennessee, Kansas, Iowa, Texas, Florida you name it. Even a handful of my new friends from New York. So many genuinely cool people.

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It was a little surreal to see that quite a few people had been following along with our shitshow adventure but it served as an excellent icebreaker, making people I’d never even met already feel like old friends. I was also glad to hear that our struggles on Friday served as a bit of a warning flare for the handful of fellow air travelers, reminding them to stay extra vigilant with airline personnel handling their wheelchairs on their trips into town. As far as we could tell, we’d been the only major casualty.

The majority of the day was filled with informative seminars featuring advocates from all over the country. I got to hear about a lot of initiatives that I’m sure will benefit many of my friends living with paralysis. Things like the Disabilities Integration Act which aims to restore the inalienable rights of life and liberty to those who are so often forced into understaffed institutions simply because it’s cheaper for the insurance companies than to let them live at home with dignity and the proper care they actually deserve.

Unfortunately, I had to miss a few presentations to haggle with United, who I hadn’t heard from save for a couple face-saving tweets on Saturday. It was a little more than frustrating that it took a couple snarky tweets of my own to finally get a phone call from someone in the organization, I will say that. Good thing I was able to use my own connections at the conference to find someone willing to pick up what was left of my chair, so maybe I’ll get to drive something of my own again later this week.

Those setbacks aside, it has been really inspiring to be surrounded by so many people with such an incredible fire for advocacy. It’s going to make for quite a show when we roll up on Capitol Hill tomorrow. Should be a good time.

We the People.

The view outside our hotel room here in Philadelphia looks out over the Christ Church Burial Ground, the final resting place of Benjamin Franklin who, besides helping draft the Declaration of Independence and the Constitution, is also known as one of the first  people to harness electricity. As I sat in my manual wheelchair, looking out over his grave site this morning, I couldn’t help but wonder if he ever could have envisioned a man being as dependent on that discovery as I am today. Probably, he was a pretty sharp guy.

I’m pretty sure, however, he may not have imagined me using his discovery to have digital conversations with one of the world’s most prominent travel conglomerates in 140 character snippets over something called the Internet. But in his defense, I never would’ve pictured going back and forth with United Airlines on Twitter either, but that’s how my morning started. I guess it’s time to admit that my life has gotten way more interesting since last Saturday.

After finishing off the most surreal communiqué of my life, the only other real order of business left was notifying Amtrak that I would be bringing not one, but two wheelchairs with me to the station for our trip to Washington DC tomorrow. That’s going to cost United another hundred bucks because the dead chair needs a ticket of its own. With all of that taken care of, Claire and I had the rest of the day to explore Historical Philadelphia. If we thought it was difficult to navigate New York City with three people tag teaming a hand control power chair, making my girlfriend push me through miles of old brick roads was even worse.

But as we made our way around through so many historical monuments, I could feel my discomfort and annoyance with my current predicament began to fade, lost in the background of a larger perspective. Visiting spots like the Constitution Hall, the Liberty Bell, and, particularly, The Tomb of the Unknown Revolutionary Soldier — which served as a mass grave of thousands who lost their lives in the American Revolution — snapped me out of my funk rather quickly. It was a pretty stark reminder that pain is part of the process, and that maybe, just maybe, this little blip on the radar is just that last catalyst that galvanizes my commitment to advocating for people in my situation.

One of our last stops was at Independence Hall, where both the Declaration of Independence and the Constitution were adopted. We caught the very last of their express tours before closing. The tour itself was short, we only got to see the Supreme Court room, central hall and the assembly room. It was in that last room of the abbreviated tour that the guide talked about how the founding fathers had the foresight that this country would evolve, which is why they programmed in an amendment process that gave way to the abolition of slavery, women’s suffrage, the civil rights movement of the 60s, the ADA in the 90s, and the current battles for gay rights. The guide wrapped everything up by saying they is still plenty of work to do, which is exactly why we are headed to the capital tomorrow; to declare that my independence matters just as much as everyone else’s does; that I have the right to travel without putting myself in danger.

And it was one tiny act of kindness by a stranger right before the tour began that brought it all together for me. While waiting in line, a man named Pascual struck up a conversation with Claire and me. Because she was pushing my chair, I never really got to see his face. We chit chatted and learned he was from Virginia by way of San Jose. When we approached the ramp heading into the hall, he gently nudged Claire aside, offering to push me around for the next 20 minutes so she could have a break. It’s those little gestures by so many people this last week that have lightened the load on these paralyzed shoulders.

There’s Dorothy, the sweet Jewish lady we met on the New York Metro who told us of how she was smuggled out of Germany as a child to escape the wrath of the Third Reich and ultimately went on to work with United Nations, proving survivors can make a difference. There’s Ernie, the most charismatic service elevator operator on the planet that reminds me that we all have a job to do, so we might as well do it with passion. There’s George and everyone at the Axis Project serving as inspiration for what The Here and Now Project can and will become. There are the countless people sending messages, phone calls, texts and tweets reminding me that I’m not alone on this journey. There are the Bobbseys, who have graciously and sometimes begrudgingly stuck with me through three of these catastrophes and made these learning experiences possible.

And finally, there is this girl who didn’t let me turn back when my chair flickered “CONTROLLER FAULT” half a dozen times while we did the tourist thing on our final day in New York. And she didn’t complain once about pushing me over cobblestones and bricks in mid-80° weather today, proving that love really is the answer, that love will find a way.

I just realized that this is only halfway through our trip. Who knows what the second half will bring. Whatever it is, I know we’ll get through it together. Thanks for all the support so far.

Stranger than Fiction

It only took a couple of seconds to recognize that the popping sounds coming from the bottom of my chair were sparks. What was supposed to be a throwaway travel day from NYC to Philadelphia after a few mild hiccups on the way to Penn Station turned into a mad dash to find somewhere, anywhere, to yank me out of my chair.

After that it was just another repeat of last Sunday, only this time I was offloaded onto a pew-like bench in a Philly train station instead of a claustrophobic family bathroom in the Newark airport. I spent the next few hours doing awkward pressure releases until my latest hero named Rick showed up and sweated his ass off for another couple hours piecing together a chair that wouldn’t light mine on fire. The next couple hours were focused on logistics as we try to get my new POS Express back to the hotel with whatever the hell this thing is now.

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At this point, all you can do is laugh. The plot is thickening faster than I can keep up, but now I know what kind of ride I’m in for from here on out. We got to the hotel a half an hour ago, where I’ve managed to force down half a 7/11 sandwich and a couple handfuls of almonds. We’ve been up too long again, and now I have to get back to bed to see if we didn’t just ruin all the healing progress I’ve made over the last few days.

On the bright side, we posted a little video on social media that seems to be bringing out many of the horror stories that others have endured while attempting air travel, so hopefully this is the start of something big. And to top it off, I’ve already made a ton of new friends in the city of brotherly love. Thanks Tony, Benny, Joe, Carl, and Rick for doing everything you could to get us to the hotel safe!

Wish us luck and stay tuned. It’s bound to get interesting.

And then this happens.

If the events of the first three days weren’t enough to bring four people to the brink of insanity, I don’t know what else could have done it. Despite a short reprieve from the chaos Tuesday night when we took a trip to the top of Rockefeller Center and were treated with a breathtaking view and a chance run-in with the most chipper service elevator operator on the planet, we still woke up yesterday morning a little road weary. Thankfully, the travel gods decided to bless us with an incredible Wednesday.

Our exploration with mass transit was remarkably more successful than the previous day. After hailing a slightly cramped accessible cab we made a successful, albeit pothole-jumping trip to the Bronx for a Yankees game we’d gotten tickets for through a United Spinal friend in Portland. I was able to set aside my resentment towards The Bombers (for eliminating the Mariners from the playoffs 15 years ago) just long enough to enjoy what turned out to be one hell of a game, complete with a grand slam, a couple comebacks and a walk off victory. After that it was time to test our luck on the bus.

It only took us one false start boarding the wrong bus followed by a quick hop from the Bronx to Manhattan where we caught the M3 line heading south to Harlem. Even with the 37-point turn around we needed to get and the POS Express into proper position inside the bus, this was our most painless transportation yet. And this is where it finally started to feel a bit like a vacation instead of a four letter word (T-R-I-P) it’s felt like since we first landed in Newark.

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I’ve always been fascinated by cities, and this is one that is easy to fall in love with. From me sheer scale and beauty of its architecture to the incredibly diverse culture, there is always something new to see or someone new to meet. So as we slowly made our way down St. Nicholas Avenue, picking out passengers from all walks of life and passing countless corner shops and brownstones, I could feel my spirits begin to lift.

We arrived in Harlem late in the afternoon, with just enough time to wander around a bit before we were scheduled to meet up with George Gallegos, another United Spinal contact who runs an outfit called Axis Project. Not knowing much about the Project other than what I’d seen in a quick Google search a few weeks before we left, I had little idea of what I would find in the little alcove at 1325 Fifth Avenue.

We rolled in about  6:45 and were met by George, a former Paralympian with big muscles and a broad smile. He introduced us to his business partner, Alex, and took us back to the main gym where we found roughly 30 people in wheelchairs listening to a presentation. We hung towards the back and George explained the holistic approach the Axis Project uses to help nearly 600 members living with disabilities in the New York area; handcycle spin classes, boxing, circuit training, a certifiable genius of a physical therapist on staff, and a multitude of classes and seminars for self-improvement. The talk we were watching was folks from Bank of America teaching people how to properly invest their money, which feeds into the main goal of the Axis Project, empowering others to live more independently.

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George said 40% of their members are either people they have helped transitioned from nursing homes, or those at risk of being sent to nursing homes that they have placed in more suitable apartments with proper home care. He also introduced me to a couple of high level quads like myself, Jonathan and Sergio. I got to talk with Jonathan about his travels to the Dominican Republic in a manual wheelchair (insane!) and Sergei showed me some exercises he uses to help stabilize his core with the help Lawrence, the certifiable genius of a physical therapist they have on staff, . Sergio also a phenomenal mouth stick painter, and gave us one of his originals as a souvenir.

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We left both humbled and inspired after seeing so many people taking charge of their own lives and Doing Life to the fullest extent of their capabilities. This is what this trip was supposed to be about from the get-go, so it’s hard not to be a little frustrated that it took this long to get to where we are. But if it had happened any other way, we probably wouldn’t appreciate it nearly as much. That, and it probably would’ve made for pretty lame reading. That was the running joke before we left, I’m just here to entertain you people. So yeah. You’re welcome.

After sleeping a little this morning, Claire went for a run in Central Park. Oh, and guess who just got his legs back? This guy. Time to go have some fun. Catch you guys later.

The Nightmare Continues

Where did we leave off last night? Oh yes, my bloody backside and defcon 627.

Anyone who has kept track of my last few road trips is familiar with the resiliency of our collective crew’s attitude when it comes to wheelchair issues. We’ve pushed me around Southern California in a dead wheelchair for days on end, visited the Grand Canyon in a Franken-chair held together with pool noodles and a set of Wal-Mart suspenders, and have managed to do so somewhat gracefully and even with a little humor. And I know a lot of that probably hinges around my ability to roll with whatever punches Life decides to throw my way. Wheelchairs break. Shit happens.

But when we saw evidence of pressure on my backside in the world’s worst impromptu examining room on the planet, my PTSD kicked into hyperdrive. To know why that happened, you need to know my history with pressure. In total, I’ve spent one third of my paralyzed life stuck in bed battling skin issues, with the most recent stint coming two summers ago while planning this exact same trip, ironically. These are the types of things I lose years to. The kind of things that kill people. People like Superman. People like my friend Dan. They are not something you play around with. Needless to say, I wasn’t too enthused with dragging my body back off that card table and into an improperly positioned, broken wheelchair. We needed more options.

The only thing the airline thought to do was call for a transport to our hotel, but 911 responders could only take me to one of the local hospitals.. That landed me in the University Hospital emergency room for four hours with a doctor who had either zero understanding of the severity of skin issues in quadriplegics, or just didn’t really care. Probably both. Meanwhile, the airline’s mobility connection finally arrived and was unable to revive my chair, saying they needed to take it to the shop for at least a couple days. Hopefully Tuesday, they said. They were able to provide an ill fitting hand control wheelchair as a loaner until that time. It beats pushing, I guess. All we needed was an hour of the most brutal, pothole filled cabulance rides of my life to finally get us to the hotel, where we had to jump through seven or eight hoops to prove that, yes, we do have two rooms booked and, yes, they did have our bags that had been delivered from the airport.

All that explains the micro-blog Sunday night. We were running on no sleep and little more than Dunkin’ Donuts breakfast sandwiches after the most brutal travel day I have yet to experience. We crashed out at 9 PM, and didn’t even consider trying to assess the damage until mid-Monday afternoon. As far as we can tell, the bloody skin on my backside appears to be more of the shearing nature (i.e. more friction than pressure), but it’s really hard to tell at this time. The only thing we know for sure is that I’m not out of the woods one bit. I’ll need to limit my time  out of bed precipitously until we start to see progress, which completely blows up any of the plans  we had coming in.

We spent much of early Monday evening with a gracious hotel tech attempting to turn this hand controlled jalopy (now unaffectionately known as The POS-Express) into something that could at least properly support my frame. That left a couple hours for us to exit the hotel a little more presentably than the homeless folk we must have looked like on arrival. After clumsily navigating the POS down a few blocks at a blistering 2.5 mph pace, we found ourselves smack dab in the middle of Times Square. A few slices of pizza and a hand full of street performances later, and our frazzled nerves calmed just enough for us to enjoy the view. Hell, Alicia even mooned the Jumbotron, which I’m sure most of the other tourists won’t realize made their photo streams until they get back to wherever they came from. We stopped and got some cheesecake and went to bed mildly optimistic considering all that we been through.

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Then today happened.

We began the morning with the goal of familiarizing ourselves with the public transportation system. This should have been what we were doing Sunday, but we tried to soldier through regardless. In very un-Kenny fashion, I actually did  quite a bit of research into the accessibility of the New York mass transit months in advance. My only mistake (and a crucial one) was forgetting that the word “accessible” means a lot of things to a lot of different evaluators. “Accessible” doesn’t always mean “wheelchair accessible” which doesn’t always mean “power wheelchair accessible.” After tracking through the sweltering afternoon heat in the convection oven that is this town, we finally made it to an “accessible” subway station, only to find little hurdles like these preventing us from boarding the train.

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While that little gap doesn’t seem so formidable in the picture, one that probably wouldn’t pose too much of an obstacle were I in my own wheelchair under my own control, you have to remember that the logistics of me in the POS Express adds just enough of an extra wrinkle to make it terrifying. Just getting through an elevator doorway, for example, requires two people to enter before me, one to keep the door open, and another to take the handoff of my drive controls when the person driving behind me can no longer reach. Throw that dynamic into the madhouse that is subway traffic and it’s near impossible. Again, in my normal chair? Challenge accepted. In this thing? Not so much. We chose to go to outside and test our luck with other forms of transportation.

And then the mobility company called, saying that, in all likelihood, I won’t get my chair back until Thursday because they had to special order some fractured caster bearings as well as an electronic module that were all damaged in-flight. If I thought morale was at an all-time low when we got lost and almost ran out of gas on the way to the Grand Canyon, I didn’t realize there was an even bigger hole for us to fall into on the other end of that phone call. With the wind completely taken out of our sails, we crawled our way back to the hotel to lick our metaphorical wounds.. Okay, that was probably a poor choice of words given the situation, but whatever.

I’m finding my mood to be about at the lowest it’s been on any of my road trips so far, and trying not to berate myself with an internal dialogue filled with statements that begin with “You should’ve done this twice that.” But it’s hard right now, especially as the “captain” of these road trip ships, when I see the crew as affected as it is. So I have to constantly remind myself that this entire trip would’ve been infinitely easier had the aviation industry have something even remotely more accessible for people traveling with their wheelchairs.

I should probably wrapup this bitch-fest here and take a minute to point out that nearly everyone we have dealt with besides the one doctor have been supremely kind, thoughtful and as accommodating as they possibly could be, especially the people on the ground at the airport. It’s not their fault the higher-ups in their organization are tone deaf to the needs of my community.

Who knows, maybe a week from now we will be sitting toe to toe with our elected officials with that much more to talk about. As it stands right now, I’m not really digging this current plot device. But then we rounded the corner right by our hotel and found this monstrosity staring us down.

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I know, I know. This too shall pass. We’ll see what tomorrow brings.

Recapping the Nightmare Pt. 1

16 hours of sleep and my senses have recovered enough to give you all rundown of what should become a pivotal example of why the aviation industry needs to finally join every other transportation agency in complying with the Americans with Disabilities Act.

It all started out with the four of us in a quite chipper mood. We followed the exact same protocol used on a wildly uneventful test flight to Portland a little over a month ago; arriving with plenty of time to pre-board, thoroughly explaining our system to flight officials before heading down the jetway, breaking down my wheelchair with pit crew-like efficiency outside the plane (removing all crucial pieces and wrapping the rest in foam & cellophane), making the best of a terribly flawed system of transfers in and out of that bullshit aisle chair situation, and performing vigilant pressure releases on my roho cushion every half-hour for the duration of the five hour flight. In short, we did everything by the book. As we banked one final turn southbound descending towards the Newark Airport tarmac, the view of the Manhattan skyline bathed in a saffron glow of morning sunlight seemed to bless our arrival.

We deboarded United flight 1695 expecting my wheelchair with its accompanying bag of the armrests and footrests to be waiting in the jetway like they were after our Alaska Airlines flight to Portland. They were not. It took a half-hour of me sitting on the clipboard on wheels for my chair to finally show up, but the arm/footrests were nowhere to be found. Good thing we kept my head controls and main cushion on the plane with us, so I was at least able to limp from our terminal down to the baggage claim with my chair slightly tilted so as to not run over my own feet. It looked something like this:

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II remember saying something jokingly like, “If this is the biggest hiccup of the trip, I’m fine with that.” It wasn’t even 15 seconds later that my chair lurched hard to the right and came to an abrupt stop, the words “CONTROLLER FAULT” flashing ominously on my screen. Claire and I met eyes. Not again. Fortunately, a quick reboot got us back in motion and we made it down to baggage where the rest of my chair parts were waiting. We quickly reassembled my ride and were about to exhale our collective sigh of relief when the chair completely lost power.

The team went into full troubleshoot-mode: Claire assembled the rest of our luggage, Amanda started checking wires and Alicia got breakfast and got a hold UA officials. After an more than an hour, we had to admit the solution was beyond our power, and were left waiting to see what the airline could come up with. At 8 AM. On Sunday. On Father’s Day. We sat there for a couple hours, and it dawned on me that the tilted position I was stuck in was not ideal for the integrity of the skin on my ass. We asked airline officials if they had a room available for us to transfer me out to perform a skin check and the best they could come up with was a folding card table in a cramped family bathroom that reeked of piss.

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After an extremely awkward transfer we pulled my pants down and saw blood, taking the situation from seriously inconvenient to defcon twelve.

To be continued…

Triplog Day 1: A Nightmare in Newark

To be honest, I don’t know where to start. In fact, I don’t think I have the energy after everything that has transpired in the 20+ hours since my last post.

My chair is broken, I spent four hours in a Newark emergency room with skin breakdown, and some of our luggage got lost. And that barely scratches the surface of what kind of day it’s been.

It never fails. I guess the travel gods didn’t take kindly to my callout to “Bring it on.

Not to worry, though. We’ve been down like this before. Tomorrow is a new day, and it’s time to get some sleep.