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INSULTS, F-BOMBS, AND PARKING STRIPES

2/18/2016

It’s taken me about a week to cool down, but the incident still burns me when I think about it. Even more, I remain simply amazed how some in our society could care less about others, as if it’s their God-given right to do as they please.

Last Friday, my son Alex, his buddy Zach, and I had just watched the premiere of Deadpool, and we were hungry for some late night dinner. We drove around our side of town and settled on a trusted favorite, LaRosa’s Pizza in Eastgate. For those familiar with the area, it's the one by Jungle Jim’s. We love this particular restaurant for many reasons: the food is always good, service is exceptional (mainly because the waiters/waitresses indulge Alex’s want to socialize), and the parking…well, it's among the best in town for accessible vans! I say this because outside this restaurant, the handicap unloading stripes are among the widest I have ever seen! Such civil engineering kindness puts this Duchenne Dad at ease with every parking job, and leaves me confident my son’s needs are met without fear of injury…until the incident.

As I am sure you are aware, handicap parking stripes, especially the wide variety, have purpose. They are designed to allow safe wheelchair exit from, and entry to, side-loading accessible vans. With ramps, the wider the stripes, the better. The extra space allows room for a wheelchair to use the entire ramp (instead of dangerously short-cutting off the side because of a lack of space). The space allows wheelchairs to pivot without concern of hitting adjacent cars, and gives protected peace of mind if you need to reposition the wheelchair occupant before proceeding to your destination. Even better, the stripes are typically located close to a storefront so you don’t have to ford dangerous parking lot traffic just to get inside (note: drivers see people walking, but seldom see people sitting). In short, wide stripes are like a no-fly zone for wheelchairs, so to speak, and I love them.

So, back to our story. Alex, Zach, and I parked in a handicapped-only space next to some wide stripes in front of LaRosa’s. While the boys excitedly debated calzones or spaghetti, I walked around the van to manage the ramp for Alex’s safe exit. I unlocked his wheelchair from its constraints, and guided Alex backwards down the ramp. As I stood at the base of the ramp, safely guiding Alex’s descent onto the stripes, I saw something move out of the corner of my eye, and turned my head to confirm. That is when I observed a large SUV driving onto the stripes where we were unloading! I was astounded.

The driver, a woman of soon-to-be-revealed questionable integrity, wanted to park in the space clearly marked with handicapped stripes. She nudged the nose of her SUV into the parking space where I stood with my hands still on Alex’s wheelchair and WHILE ALEX WAS ROLLING DOWN THE RAMP!

I immediately stopped Alex with one hand and halted the woman with the other. I supplemented my traffic cop pose with an urgent, and angry, “Whoa! Whoa! Whoa! Whoa!” I then threw up my hands as if to say WTF! I expressed to the woman I have a boy in a wheelchair, on a ramp, and we are unloading! I pointed to the stripes and motioned for her to park elsewhere. The woman stopped her SUV, but didn’t reverse. She just waited and then, after some time, resumed inching her way onto the stripes as if to hasten our exit. I didn’t budge. Alex, fearing for his safety, zoomed back into the van. Zach watched with eyes wide open through the van window as the woman finally stopped a mere few feet from hitting me and our now vacant ramp.

Still in utter disbelief, I walked to her driver’s side window.

“What do you think you’re doing!”

The woman insistently pointed to the space as if it was her absolute right to park where she wanted, and demanded that I move. I again explained these are handicapped stripes, and that she cannot park here because I am unloading my son. She then powered down her window and said “go ahead, I’ll wait.”

Wrong.

I explained that’s not how it works, and told her to park elsewhere because this space is not designed for her parking convenience. She told me to just get him out of the van, go inside, and eat our pizza. She explained her need to park there because she had a pizza to pick up. I repeated myself, as did she. A standoff was obvious, so she started lobbing F-bombs, as if the two choice words would improve relations.

I was dumbfounded, and couldn’t believe what I was hearing. I returned to our van and explained to the reluctant boys we have every right to use this space. I then took my time to help Alex, hoping our purposeful delay would urge her to park elsewhere as traffic was forced to swerve around her back end. But, our delay only enraged her to not just lob more F-bombs, but scream them! Needless to say, I had difficulty pulling Alex out of the van as he wanted nothing to do with this apparently psychopathic woman.

Alex: Dad, perhaps we should go somewhere else for dinner!

Dad: We aren’t going anywhere!

Zach: This is awesome!!!

F-bombs continued to rain, as did insults of me and my “sorry-ass son” (another example of her poor choice of words). During the lengthy exit from our van, the woman lost patience, backed up, and sped away in a huff. I prided myself for holding my ground, happy the boys witnessed how you always stand up for what’s right, no matter how difficult.

Once inside LaRosa’s, however, my pride quickly faded. Something didn’t feel right. Although the woman had left and we apparently went our separate ways, I couldn’t shake the feeling of a car key or two scraping across the van, or worse, as she walked by to pick up her pizza. I told the boys to wait by the restaurant window where I can see them, and then walked back towards our van. My sense of foreboding didn’t fail me.

The woman had circled the parking lot (passing several open spaces) only to return to the battlefield. She pulled alongside our van and parked ON THE STRIPES where we had just exchanged pleasantries. I approached in amazement as she turned off her car, casually pulled out her phone, and began scrolling social media (or so I assume) while waiting a few extra minutes for her pizza.

I knocked on her window.

She ignored me.

I knocked again.

She offered a no-look finger salute.

I knocked a third time.

She then rolled down her window and fired dismissive F-bombs without care, certain of her victory and proud of her demonstrated parking abilities. In between the multiple F-bombs and finger salutes, she argued that we had already entered the restaurant and no longer needed the parking stripes, so leave her alone.

Not so fast, lady. As I recall, you referred to my son as “sorry-ass.” I politely told her she needed to move because this space was not designed for her convenience.

Insults followed by F-bombs.

I stood my ground.

She continued impressing me with her vast vocabulary.

During this back-and-forth, it became evident to her that I was intent on ruining her enjoyment of scrolling social media, and intent on standing up for Alex and others who legally need the space. Alex and Zach continued to watch from inside the plate glass windows as did many others who chose to walk by with interest but did not intervene.

The insult and F-bomb rainstorm intensified.

I didn’t care if I got wet.

“F-bomb. F-bomb. F-bomb. Go eat you F-ing pizza, you mother F-er! I can park wherever I F-in want! It’s a free country!”

I explained again the errors of her thinking, and offered I could call the police if she wanted to settle this legally.

Louder insults and F-bombs followed. Then, with a sneer and a devilish smile she said, “Okay, fine. You know what, I’ll move. But, you just wait! YOU just wait! You’ll regret it.” She laughed with insanity as she threw the SUV in reverse, and drove away, throwing F-bombs in rapid-fire as she did and a skyward salute out the driver’s side window.

As I watched her leave, I realized the battle may be over, but the war was about to begin, and it wouldn’t be pretty. If I went inside for a calzone, she would undoubtedly damage our van. On the other hand, I was in no mood to stand outside in the cold to protect the van or continue the argument without a SUV between us. Who knows how long I would be out there. Weighing the choices, I walked into the store, retrieved the boys, and explained that some people cannot be reasoned. I told them that it is better for us to leave now before the incident ended badly. We reloaded and left for another restaurant, leaving the woman and her anger behind.

In hindsight, perhaps I should have stayed and fought valiantly. Perhaps I should have taken pictures of her license plate, her car, or her lovely, screaming smile and steely, enraged eyes. Perhaps even a YouTube video of the incident would have been useful. Perhaps I should have actually called the police, instead of issuing a mere threat. But, in the moment, such logic and patience escaped me.

On the flip side, I could have complied with her early demands and simply ushered the boys inside for dinner, ceding the wide stripes for her convenience. Who would it really harm? I’m sure her need for pizza was pressing and paramount. Perhaps she was running late, or had a family to feed. Pizza is best served hot, right? And, no doubt, people should never go hungry. But the issue is bigger than convenience, pizza, or hunger. The issue is real for wheelchair users and close to my heart.

Snicker if you will at the ridiculousness of the incident, resulting debate, and arguably needless escalation. Smile if you must at the visual of a generally peaceful Duchenne Dad refusing to move off the handicapped stripes while a crazy lady tried to push him away with insults, F-bombs, and a big SUV. But, as I see it, the rights of disabled persons should NEVER be trampled or dismissed. If anything, they should be protected and defended.

No matter another’s convenience, intellect, or craving for hot pizza.

Rant over.

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IAN OF SOUTH WALES

2/10/2016

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You meet new friends sometimes in the most unexpected ways. They enter your life from any direction, be it your neighborhood, school, or workplace. They are found next door, down the street, across town, or across country. Sometimes, even across oceans. The cool thing, however, is you never know when you’ll meet a new friend, it just happens for reasons unexplained. And if you are lucky, every once in a while, you meet one who immediately impacts your world.

I first met Ian after seeing him on Facebook. He graciously accepted my friend request, and we have become fast acquaintances ever since. Ian is a humble, 30-something year-old man, living modestly with his parents in a small village tucked in the rolling green hills of South Wales, United Kingdom. He is a gifted storyteller, digital artist, and inspiring poet. He loves rugby, European football, and Pepsi Max. He is skillful with computers, gaming consoles, and the online community. Though somewhat bashful, he is passionate, thoughtful, and determined. What makes Ian unique, however, is that he is a trailblazer who doesn’t sit still, so to speak, as he lives bravely within the clutches of Duchenne Muscular Dystrophy.

Ian courageously published his life story in a book he wrote, titled DMD Life, Art & Me (Grosvenor House Publishing Limited, 2010). When I learned of Ian’s book, I immediately ordered a copy on Amazon and then listened for the mail delivery truck every day. I wanted to know what Duchenne had in store for my son, Alex, who also lives with DMD. I wanted to learn more than what the doctors or various Duchenne organizations could tell me. I wanted to read a personal account from the perspective of someone fighting the battle. Needless to say, when the book arrived after its journey across the pond, I dove right in.

Ian organizes his story in chronological progression of his life, and begins with his birth in 1984. He quickly moves to his Duchenne diagnosis at age eighteen months, and then describes each year of his life with Duchenne up to age 25, his age when he completed the book (note: Ian is currently writing an update to account for the last six or so years). What’s amazing is that Ian wrote his story while in his mid-twenties, experiencing the full force of Duchenne.

For perspective, Ian’s body is stationary save some facial expressions and slight finger movement. He lives with near constant ventilation and frequent suctioning of secretions from his lungs. He has difficulty speaking clearly because his tongue is a muscle, too. His hands rest tightened, clenched, and locked. Despite all this, Ian writes honestly about the physical and emotional toll of Duchenne, with no holds barred. It's a deeply personal account of his life with Duchenne and everything human in between.

When the book arrived, I naturally jumped ahead to chapters detailing ages sixteen and seventeen, to gauge Alex’s journey with Duchenne. I wanted to learn what Ian experienced at these ages to prepare myself for the battles ahead, as if battles so far have not been challenging enough (spoiler alert: it's only just begun). Thankfully, Ian prepares the reader by entitling that chapter of his life as The Ugly Monster Rears its Head. The Monster, in this case, is Duchenne. It’s stealthy and relentless, and Ian’s descriptions are true to form. I sat deep in my reading chair with eyes wide open as I read how Ian experienced at age seventeen exactly what Alex’s pulmonary doctor warned us about just a couple months ago - pneumonia and its devastating effect on a boy with Duchenne. The timing could not have been more appropriate, nor worrisome as Alex turns seventeen in April.

After reading about Ian’s multiple hospitalizations for pneumonia and difficult recoveries, which lasted nearly a year, I circled back to the beginning of his book hoping for a reprieve from the life-threatening rollercoaster. In hindsight, perhaps I should have started at Page One from the outset as Ian’s story begins graciously and eases the reader into life with Duchenne, as experienced.

Throughout the book, I recognized various milestones within Ian’s transition from standing to sitting. I recognized his frustrations of not keeping up with his friends. I recognized his new life in a power wheelchair. I recognized his home modifications including a ramp, hoist, and elevator. I understood the time-consuming challenges of getting dressed, out of bed, into his power wheelchair, out the door, and into an accessible van for a simple trip to town. I understood when I read of the obstacles his family faced in public education, transportation, and general understanding of a kid with Duchenne. The challenges are many, and Ian describes them openly.

Ian writes of the happy times, too. I smiled reading about his family’s trip to Disney in Orlando, Florida, which reminded me of our recent Dudes Trip 2k15. I admired how Ian met the Prime Minister at 10 Downing Street, took part in his sister’s wedding, and delighted in the birth of his nephew – stories that help you forget about Duchenne for a while.

Nonetheless, the darker side of Duchenne is ever-present and unavoidable, and Ian holds nothing back from his descriptions. I nodded with understanding when Ian described the decreasing circles of his world, including frustrations of immobility, declining number of friends, and growing isolation. I cringed when reading about how doctors cut his hip flexors, hamstrings, and ankle tendons to prevent contractures, and his lengthy recovery in bed. I held my breath when he described his inability to cough productively, having suction tubes forced down his throat to clear mucus from his lungs, and fighting to survive his multiple battles with pneumonia. I took note of his lifesaving tracheotomy to help what is now a routine lung clearing procedure that his mother performs every day. I worried when I read about his exhausting heart palpitations that induced incredible episodes of panic and trips to the emergency room for fear of heart failure (note: Ian reports his heart is doing much better these days).

Ian also details the emotional side of Duchenne, the side you seldom see. He describes his challenging search for love, the heartbreaks, and periods of self-doubt. He writes of struggles he and his parents faced with his daily care, including toileting, feeding, and grooming. He writes of being unable to leave his second-story bedroom for eight weeks while waiting on parts to fix his broken elevator. He writes about watching others move on with their lives, while he grew weaker and more isolated.

My heart was heaviest when I read how the weight of Duchenne hangs over Ian every day. He doesn’t know when his time will come; none of us do. But, with Duchenne, the threat is constant and unshakable. Ian writes that he experiences days when he feels life would certainly end soon, but then doesn’t. Other days, he is certain to feel well, only to suffer a painful reminder of Duchenne’s cruel presence. Although the feeling is something he has learned to live with, Ian describes how worry and acute concern for life is a heavy weight to shoulder. He writes of the expectation of positivity and the burden it carries as he lives with Duchenne.

Yet, what struck me most about Ian was his ability to persevere while in the grip of Duchenne. Despite Duchenne’s hardships, Ian published his story, one keystroke at a time, determined to provide a road map for others following his path. He has created videos and participated in documentaries about life with Duchenne. He has written a blog on his website since 2012, and updates it often for the world to see. He has created art on his computer for over a decade and sells it online with earnings benefiting Duchenne children and their families. And beautifully, despite his challenges, Ian doesn’t give up his fight. Today, Ian is still writing and painting, and does with help of eye movement technology (i.e., a blink for a key stroke).

Think about that for a moment, when you feel the need to complain about life’s difficulties.

If you are seeking to read of a unique perspective of life, I highly recommend you consider Ian’s story. It magnifies endearing qualities of the human spirit, like love, kindness, and perseverance in the face of pain and heartbreak. It reads of devotion and determination. It reads of hope. Ian displays these qualities, and more, as he refuses to let this monster of a disease stop him from enjoying life to the fullest.

His story IS Duchenne. It's not always pretty, but he shows that it can be beautiful.

So, thank you, Ian of South Wales, for your determination, perseverance, and gift of the human spirit! You are an inspiration to many in this world.

Including me, your new friend David of Cincinnati, Ohio.

For more information about:
Ian’s personal story, visit http://amzn.com/1907652337
Ian’s blog, visit http://inspiredlifebook.blogspot.co.uk
Ian’s artwork, visit http://www.redbubble.com/people/thebigg2005

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TWO FIVE EIGHT SIX

2/5/2016

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A lot can happen in thirty years, sometimes more than you could ever dream. Three decades of life includes families, careers, births, deaths, sickness, and good health. It brings memorable moments like birthdays, vacations, graduations, concerts, and various games of sport. It can also pack material milestones like homes, cars, boats, and books. Looking back, the memories are endless, it seems. Many happy, some sad. Many wonderful, some not so much. But, for me, none of them would have happened had a tall, lanky man named Cubs not challenged me to a friendly game of masking-tape basketball that fifth night in February of 1986.

The night began like any other in graduate school. I studied in a large office shared with several other budding geologists for an upcoming Doc Frizado Geochemistry test. Cubs, on the other hand, tired of studying. He closed his books, grabbed our carefully formed masking-tape ball, and began shooting baskets on our makeshift basketball court that we had carefully marked across the dusty tile floor. While I deciphered iron oxide phase diagrams, Cubs drained shot after shot through the wire rim and stringed net that we attached to the top of an old chalkboard. While I studied equilibrium and triple points, Cubs repeatedly voiced his prowess, raised his arms to the surrounding imaginary crowd, and tried to lure me away from the books. Eventually, the tape ball’s dull thud against the chalkboard and tile floor became unbearable.

“Come on, man,” I pleaded, and then tried to redirect. “Don’t you have some studying of your own to do?”

Cubs, always the more laid back of my grad school friends, simply shrugged. He just continued shooting and mimicking the roar of the crowd after each shot. Soon, he began launching shots from directly behind me. Taunting me. Egging me.

“What? Are you afraid to lose, Chef?” he would playfully chide with exaggerated follow-through (note: Chef was my grad school nickname for my inclination to “cook” Chef Boyardee most every night). Cubs knew how to push me, which is probably why we became such good friends. After hearing a few “casual” remarks about his masking-tape basketball shooting skills, I couldn’t take it any longer and pushed back from my desk.

I loved masking tape basketball, and Cubs knew it. We played to twenty-one, one basket at a time, win by two, and had only one rule…score any which way you can. This involved pushing, shoving, bumping, slapping, hacking, or any injury-prone ways that guys released aggression through sport. We crashed against desks, tripped over chairs, and kicked wastebaskets in our fight to score. It didn’t matter that Cubs towered over me by about six inches, because I was quicker and often frustrated his long wingspan. I don’t remember who won that night; it didn’t matter. But, I do remember that game’s ability to declutter the mind and lighten the mood. What Geochem?

After our titanic struggle, Cubs suggested we head out and grab some beers. At first, I was all for it. Basketball and beers, what could be better! Geochem could wait, I rationalized, because the test was still a couple days away. Then Cubs added the twist, which he later admitted was his plan all along.

“Hey, how about we go see Kathy (his girlfriend at the time) and head over to Myles Pizza?”

Oh great, I remember thinking. The last thing I wanted was to be a third wheel on a night when I should be studying. Perhaps I should get back to Geochem.

“…annnnnd how about we see if her roommate can join us?”

Wait. What!? Are you kidding me? Although Kathy’s roommate had previously caught my eye at a recent grad school event, I considered her out of my league as she was one of the more popular students on campus and seemed to know everyone. She was involved in graduate student affairs, studied higher education administration, and worked in the undergraduate admissions office! She studied student matriculation rates. I studied depositional and diagenetic histories of oolitic limestones. We couldn’t be more different!

“I don’t know. I’ve got geochem and all,” I tried to back out.

Cubs would have nothing of it. “Bull crap, so do I! Grab your coat, we’re heading out! Besides, I think you two would hit it off.”

“Yeah, right,” I mildly contended as I tossed him the dented tape ball for another round. “One more game before we go?” Cubs smiled in victory.

About twenty minutes later, Cubs and I walked the few blocks to Kathy’s apartment. We passed Pollyeyes, the bar famous for its around-the-world passport of beers, Dairy Queen where they had recently introduced something called a Blizzard, and then made our way along some railroad tracks to the young women’s second floor apartment. We knocked and waited as thumping music emanated through the apartment door. The music grew louder when Kathy opened the door with a smile and invited us inside. After a quick embrace, Cubs asked if she and her roommate wanted to join us for pizza and beer. Kathy didn’t hesitate to accept, and then looked to her roommate.

There, during what I consider the first official meeting of my future wife, Kristy, I witnessed a young woman doing aerobics on the living room couch. Seriously, ON the furniture. She turned, smiled, and waved a quick hello, though remained focused on completing her aerobics routine. We watched as Kristy stepped across the couch, then off and back up, as she moved with purpose to the beat. She rhythmically punched the sky like a synchronized boxer and kicked to the music like a Rockette. I guess you could say I was mesmerized, but that seems too dramatic. In reality, though, it was pretty close. I remember standing there, thinking, whoa, she’s an energetic one. And, dang is she cute! I couldn’t take my eyes off her as she moved about the room in Spandex leotards and leg warmers. Cubs elbowed me, smiled, and winked as if to say, told you.

We agreed to give the women time to finish exercising and get ready, and then they would meet us around the corner at Myles Pizza. Cubs and I left, secured a booth, and ordered the first pitcher. Although our brotherly conversation involved the usual topics, including sports, school, women, and masking-tape ball hoop dominance, all I could think about was the beautiful young woman who would soon be joining us.

“Well, what’d you think, Chef? Am I right or am I right?” Cubs asked with a grin.

I just smiled and shrugged. Perhaps in hopes, as they say, the rest would be history.

It was. Thirty years’ worth now and growing stronger every day!

And to think it all began after a game of masking-tape basketball that night

…on two five eight six!

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INSULTS, F-BOMBS, AND PARKING STRIPES

IAN OF SOUTH WALES

TWO FIVE EIGHT SIX

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