Down days, What a trip

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.

Down days, Keeping perspective, my "tribe"

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
Down days, paralysis analysis

Away from the Sun Again

I should be in Maryland right now. Maybe Ohio, or at least Illinois – somewhere on the road to Washington DC for a Roll on Capitol Hill that starts on Monday. I’d take anywhere but where I am now. There is an old adage that says that life is what happens when you’re busy making plans. So it only figures that, in what is undoubtedly the most productive point in my journey thus far, life would throw me a curveball that has landed me on bed rest. Yep, my almost 4 year run of being pressure sore free officially came to an end last month.

I knew this day would come, I just didn’t think it would be now. Then again, I guess no one ever does. On the heels of the first Here and Now Project event, and just before what was sure to be an epic East Coast road trip to rival last year’s West Coast run, the timing couldn’t have been worse. And of course it pops up during summer, the time of year when we in the Seattle area are guaranteed a good dozen or so days where the clouds part to reveal that warm, golden orb we always hear so much about, but rarely see. It’s hard not to feel like the unseasonably hot June weather is mocking me from the window.

3 Doors Down has always been one of my favorite bands. Their second album, Away from the Sun, came out the year before my accident, and it took on a completely different meaning after that. The title track became one of the songs that best fits my life after paralysis, and it’s even more appropriate to this situation. Here’s the lyric video:

For those unfamiliar with paralysis and its inherent risks, prolonged pressure in the bony areas where we sit cuts off circulation and essentially kills the tissue from the inside out. The body has to expel the dead tissue before it can heal, so it slowly opens up. By the time you notice it, it’s already too late. That’s what happened to me. What looked like a minor skin irritation a week or so before Memorial Day became a hole roughly the diameter of a quarter and almost a centimeter deep by the time the holiday arrived.

The issue is much more of a figurative pain in the ass than a literal one. I can’t feel it whatsoever, but it still manages to f#ck with my entire world. It’s yet another illustration of how my life has gone from one polar extreme of the human condition to the other. What was once my greatest asset — my body — has now become my biggest liability. It is frustrating as hell but also terrifying, because these things are like kryptonite for people like me. It was infected pressure sores that precipitated the deaths of Christopher Reeve as well as my good friend Dan who just passed away in February. That’s a list I’m not interested in adding my name to anytime soon.

Plus bed rest sucks. I liken it to the limited understanding of solitary confinement I’ve gleaned from prison movies and TV shows. At best, it’s an hour or two of relative freedom in my chair per day, the rest is spent flat on my back in bed. The only other time I become remotely vertical is the 20 minutes or so when I raise the head of my bed up 30° to eat dinner. My eyes get blurry from staring up at a laptop, and my whole concept of time is thrown out of whack. The hours creep by at a snail’s pace, but the days somehow melt together and, before you know it, weeks have passed; a slippery slope I’ve been down before.

The last time I had a sore it cost me the better part of three summers, when I spent the two and half years between April 2008 and October 2010 primarily in bed. The prospect of losing another summer is crushing, especially when you consider how much life has changed since my last prison sentence. Back then, I was a shut-in and had no idea what I was missing. Not anymore. I have a rich and full life, one where I regularly put more miles on my wheelchair in a single month than I did in my first two or three years combined. Of course, that overcompensation is partially to blame for where I find myself today.

I’d known for a while that I was pushing my luck by spending nearly 14 hours a day in my chair, relying far too much on the “miracle” cushion than I should have. The system prevents most, but not all of the damaging effects of pressure, and I wasn’t doing my part to relieve the rest. Factor in four years of wear and tear on my chair and the inevitable body changes that come with it — both of which went relatively unaddressed — and I can only point the finger of blame in one direction. Right at myself.

But as dire as this all seems, it actually serves as a litmus test for the state of my overall mental, emotional and spiritual health which has improved immeasurably over the years. With my last sore I was in such denial, I wouldn’t so much as look at a picture of the wound, let alone actively engage in its treatment. Now I know what’s on the other side of that window and I want it back. My recovery is my responsibility alone, so I’m doing everything necessary to give myself the best chance of salvaging my summer.

Who is photo bombing who, here?
Who is photo bombing who, here?

I put myself on bed rest early and I’ve already had multiple physical therapy appointments to assess my seating and adjust my cushion. I’m pounding protein shakes like a Mr. Universe contestant, and my team is taking enough close-up butt photos to make a Tim Burton-esque stop-motion movie of the healing process… we’ll call it “The Nightmare Before July Fourth.” Here’s an outtake of the Ear Stabber photo bombing when she should have been working. At least someone’s having fun, I guess. Yeah, I’m a little bitter and snarky right now. It’s just because I’m impatient.

But I’m doing everything I can, the only thing left to do is give it time and have faith that, just like with the previous sore, these are growing pains that will help me mature into a stronger and healthier person. Because, if I’m honest, I know those 30 excruciating months stuck in bed were necessary to break me out of my reclusive funk and get me back out in the world and doing life. (Okay, the pretty girl didn’t hurt, either.) But in my attempt to make up for lost time, it appears I let the pendulum swing a little too far the other way.

So just like the song suggests, “It’s down to this. I’ve got to make this life makes sense.” I have to find a new way of living somewhere in the middle. The discomfort and frustration I feel will eventually pass, and I am sure I will be better because of it. One day I’ll be able to look back at this situation as a lesson in balance and moderation, hopefully learned in a matter of weeks instead of years. Until then, I’ll continue laying waste to my Netflix and Kindle queues while thinking up dorky puns in an attempt to laugh off the madness sun deprivation brings. Really awful stuff like, “I’m so bad-assed, my butt needs two holes.” Wish me luck.

Down days

Somewhere in between

I wake up in the morning having had another one of those dreams where I regain movement in my arms and legs.  They are always so vivid, so clear.  Every touch completely realistic, every smell so real you could almost taste them.  It starts out slow, me faintly beginning to move.  At first, I don’t believe it.  Then I concentrate a little bit, and find that I actually am moving just slightly.  I pick my hand up just a few inches off my bed, and it falls limply back down.  "You can do this, Kenny," I remind myself. 
I focus on that one hand only, but nothing.  Come on.  After a few more tries, it comes into the air again, this time higher.  I slowly bend my fingers in and out, feeling the tightness that has built up from over a year of paralysis.  I rub my hands together, and savor the rush of sensation.  "Welcome back, boys.  It’s been awhile."  I run my hands over my body, feeling each muscle begin to come to life.  It is a long, drawn out process, but I slowly gain more motor function until I am able to sit up.  I run my fingers through my hair and across my face.  I had forgotten what everything felt like, it had been so long.  I lay myself back down to rest after an arduous work out of movement, and then I wake up.
Every time I wake up from one of those dreams, I swear it wasn’t one.  It couldn’t have been.  It was real, it happened this time.  "OK, one more time," I think to myself.  I take a slow, deep breath, and prepare myself for another workout.  I look down to my hands once more, and tell them to move.  They don’t.  What about my elbows?  Nothing.  Shoulders?  Same story.  This can’t be happening… I JUST moved 10 minutes ago.  I just need to concentrate, that must be the problem.  I’m just not focused enough.  Maybe I will start with my legs.  Again, nothing happens. 
NO!  IT JUST HAPPENED!!  I KNOW IT DID!!!  This is about the time that it just becomes pathetic.  My conscience of course knows that it was just a dream, but my mind is not willing to accept that fact.  For hours on end, I desperately focus on my body, begging it to move again, with no result.  I try focusing on the smallest of movements… just bending my fingers or toes, anything.  But still, nothing happens.  My face covered in tears, I finally give up, crushed.  Looks like it’s another day of being paralyzed, let’s just hope I don’t get stuck somewhere in between reality and my dreams again tonight.
Down days

Crosses to bear

Everyone has a cross to bear, doesn’t matter who you are.  And although mine is a rather heavy load, I try to carry it as quietly as possible.  But sometimes you buckle under the weight, and just want to scream.  This is me screaming/venting… They say that everything happens for reason.  Is this my purpose?  Is this going to be my job for life?  A muse?  An inspiration to the masses?  Am I just a web site that reminds people to appreciate their lives? 

Well… I hate this job.  I don’t want it, never did.  I never wanted to be this person that realigns perspectives about life.  I want a life of my own!  I never wanted notoriety, I just wanted a simple, boring little life.  I didn’t want to change the world for thousands… I just wanted to do it for one girl.  A life completely under the radar, except to that one person.  But I don’t get to live my own life anymore, everyone else does.  I get to stand off to the side, and watch life pass me by.  For everyone else, life goes on without me.  I’m nothing more than a spectator now.  Nothing but entertainment for the multitudes. 

And to top it off… I am cursed with being a hopeless romantic.  You know, there’s a reason it’s called hopeless.  I just want a normal brain, a normal heart.  Not this hyperactive, overly analytical brain that drives me insane each night.  And maybe one of those hearts that actually rests nicely under your rib cage, not planted firmly on your sleeve.  But Noooooo, not this guy.  I have always been known to shoot way out of my league, and that hasn’t changed.  Now, the "unattainable" group has just grown exponentially.  I fall for girls that I will never have.  There’s always a reason I can’t have them; they are taken, too guarded, emotionally unavailable, or too busy.  There will always be something more appealing.

But the worst thing is not even being considered or noticed.  I can’t even count how many times I have met someone who is "totally moved, and inspired" by the person I am… and then they say "Now, if I could just find a guy like that."  That is a good reminder of my new reality.  Instead of having a perfect relationship… I am this faceless inspiration that guides people through their own.  While my heart and soul appeal to everyone… the fact of the matter is this is not a life you want to join.  Everyone thinks that they can… but really it’s not possible. 

Adding insult to injury, is the fact that I know I have less to offer.  What most people don’t know, is that I was the same person I am now before I was hurt.  "A Broken Man’s Plea" wasn’t just something I came up with after I got hurt… it was who I was.  It’s difficult to know that I only have 50% of myself to offer someone.  And the physical stuff does not mean sexually.  I’m talking about holding her hand, putting a ring on her finger, dancing at the wedding, etc.   Knowing this, I’ve come to the realization that I will probably never be a woman’s first choice.  I think a woman will have to have experienced everything she wanted in life and exhausted all other avenues before they realize that the connection is all that matters. 

And I’ve always clung to the idea that if you love someone, you want the best for them.  You can see how this puts me in a difficult place.  I find myself battling the concept that were I to love again, how could I live with myself knowing that I want more for that person.  I know that everyone thinks I am extremely unique, one-of-a-kind, but I disagree.  I know there are guys out there with my same mentality that can still give the other 50% as well.  With that in mind, I find it difficult to find comfort in the fact that I could possibly be enough for a woman.  Long story short… I would give my life for just 10 more minutes of being ridiculously happy.  I just have to come to terms with the fact that I am only built for friendships now.

Let me remind you, this is just me venting.  No offense, but nothing anyone can say can take this pain away from me, I’m sorry.  This is a cross I have to bear.  No need to cheer me up.  I DO NOT WANT pity, advice, prayer, or lecturing.  I’m allowed to have down days, but it will pass, not to worry.

Down days

A bit of foreshadowing?

We were inseparable from the moment we met.  Mutual friends secretly set up a "chance" meeting at a party one night Labor Day weekend while I was in town.  She, a crush I had harbored for almost a year.  I was the lucky guy that happened to catch her eye the night before.  I knew I wanted to keep her in my life forever after the first kiss.  We spent as much of the four-day weekend together as was physically possible.  "Four days" became our little inside joke of sorts.
Wanting to make our first Christmas together something she would remember forever, I took the advice of a friend and bought her a bracelet that could be engraved.  I figured that "4 days" would be the perfect thing to put.  It would be something that only we would understand, and a constant reminder for her of the fairy tale beginning we had experienced that late summer.  Because I took my time choosing the item, Tiffany & Co. was not able to get it engraved in time for Christmas.  I chose instead to give her the bracelet blank, tell her what the plan was for it, and have it finished after she left to go back to school.  You should have seen the look on her face, priceless.
She returned to college just after the new year, and I took the bracelet in for the engraving.  The clerk informed me that the style I had chosen would take around four weeks to complete, and that they would call me upon finishing it.  Simple enough.  I finally got the call the first week of February, and picked it up.  It looked perfect… better than I had planned.  I knew that I held in my hands something she would cherish forever. I decided I would deliver it to her at school that weekend. 
I was scheduled to work a large event for the radio station that Saturday, but figured I would head over the mountains as soon as the concert was completed.  It was a long, stressful day beginning around 5 a.m. and ending about 12 hours later.  I was exhausted and starving (because my only nourishment for the day was a single bagel around 6 AM), but nothing would keep me from delivering her gift.  I pulled into Ellensburg around nine o’clock that evening, grabbed a half rack of Bud Light (hey, I earned it), and set out for her house. 
As usual, she was elated to see me as I walked through the door, and greeted me with a big hug and a kiss upon entry.  When I presented the bracelet, her eyes welled up with tears, and she could not speak.  She could not stop rubbing her thumb over the spot that read "4 days.”  Mission accomplished.  I had finally found the gift that could make a girl truly understand how I felt about her.  I’ll never forget that night, February 7, 2004.  Four days  before I became paralyzed…Within six months, she left me.  It’s amazing how four days can change your life in either direction.
Down days

Missing in action…

He was a true renaissance man.  A jack of all trades, if you will.  Mentally, physically, academically… he could do it all, and he could do it better than most.  He graduated college with a 3.7 grade-point average without really trying.  Walked on to the college wrestling team a virtual unknown, and left a decorated athlete and respected team leader.  Extremely confident in almost any situation, his internal drive to be the best spanned everything from work to wakeboarding.  He landed a job in marketing/advertising that, while the furthest thing he should have done considering he had an engineering degree, perfectly fit his outgoing personality.  His ability to deal with people was unmatched and undeniable.
He brought with him a positive mindset and quirky sense of humor which were magnetic.  The one thing he lived for above all else was to make people smile.  He would stop at nothing in order to get a laugh from a friend or coworker. No matter what the situation, he could find a way to put a positive spin on it, and make it fun for all.  His sarcastic comments and sharp wit kept everyone around him on their toes daily.  Easy to talk to, he seemed to be the guy that everyone would turn to in time of need.  He had an uplifting quality which he used to make all those around him realize exactly how special they were.
Though he never realized it, he was one of the best looking guys out there.  Anywhere he went, heads would turn and he would not know why.  A genuine smile teamed with a style all his own, he could have probably had any girl he wanted, but would laugh if you told him so.  He had always thought of himself as that kid from middle school that no girls liked because he was too small.  In his eyes, he was the funny guy or the smart guy, absolutely not the good-looking guy. Somehow he hadn’t noticed that he had grown into quite a heartbreaker.  He always had ridiculously gorgeous girlfriends throughout his life, but swore that each one was completely out of his league.
The one aspect of his life he was positive that was unique was his heart.  He came from a solid family of a father that pushed him to be the best, a mother who loved him without condition, and a big sister that revered him above all others.  His love for his family and friends could not be matched.  He was always quick to help, defend, and praise all that were close to him.  To top it off, he knew exactly how to treat a woman, and was confident that he could make her feel sexier, more special, and more loved than any man could.  Anywhere he went with his girl, they left a trail of jealous onlookers behind, because it was obvious how she was treated.  He wanted nothing more than to make one girl unbelievably happy for the rest of her life.
He was one of those guys who could do anything.  Sure, he had his flaws like everyone else, but they were fairly minor.  He was me just two short years ago.  I really miss that guy.