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.

 

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 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.

 

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.

group photo

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.