They Call Me Wheels

Table of Contents

CHAPTER 1

CHAPTER 2

CHAPTER 3

CHAPTER 4

CHAPTER 5

CHAPTER 6

CHAPTER 7

CHAPTER 8

CHAPTER 9

CHAPTER 10

CHAPTER 11

CHAPTER 12

CHAPTER 13

CHAPTER 14

Foreword

As I set about knitting these articles together into something unified and cohesive, They Call Me Wheels began to look more like a parody of a self-help guide on parenting than an actual self-help guide—complete with laugh-out-loud-lists and hah-hah charts; sprinkled liberally with the real-life antics of my fascinating and terrifying new journey. All was going along great until, with my manuscript almost compete, I ran the idea by a friend in the publishing industry. She noted right off the bat that there was no reference to my being confined to a wheelchair whatsoever. Why was that?

Good question, I thought. At the time I didn’t think it was necessarily relevant.

She went on to assure me that the present manuscript would probably have a snowball’s chance in hell among the enormous flood of self-help parenting guides currently on the market, especially since most are written by professionals who are actually qualified to dole out parenting advice.

"But what about a parody of a qualified professional? I asked, still somewhat rosy-eyed. Not to mention that I’m in the trenches, getting whaled on everyday by these kids—doesn’t that in some way qualify me by default?"

No—and to tell you the truth, it’s not really that funny. At least she was honest. But you know, she added, that story you told me about how when you’re mad at the kids and they run up the back stairs to get away from you, and you have to wheel around to take the ramp to your second level, and just as you’re about to reach them, they pop down the back stairs again to the first level, and you have to go back down and around, only to have them go back up the stairs, repeating the whole thing, until you eventually lose your mind? Now that’s funny—hilarious in fact!

Finding some strange resolve in her advice, I revisited my project, discarding nearly everything in favor of an account of my real-life story with no holds barred—real dates, times, places, embarrassing bodily functions; how I met my future wife Elizabeth and virtually overnight became a step dad to her two young sons, embarking upon the most arduous, terrifying and—okay, enough. You’ve probably read all about it on the back flap by now.

But in all seriousness, you can believe the flap about Wheels; I have hoped to capture the raucous essence of my beloved new family without focusing exclusively on disability, or parenting or anything else. But rather, I hope readers of all stripes—disabled, able, parents, step parents, non-parents and everyone in between—will find entertainment and commonality in the stories presented here. The journey might be to some inspirational; others may find it humorous and still others might find it in places somber; I have worked hard not to confine the narrative into one specific category.

I wish to thank my family for allowing me to write about them (although I never actually asked them, I just started writing and changed their names after the fact). The same can be said for virtually every main character in the book, whose names are different than their real life ones, with the exception of Dean and George (Rick), who I’m shouting-out to, Dr. John Rosemond, who plays a brief cameo of himself, and Bob from Chapter 8, who is an imaginary entity, designed to be an amalgamation of every naysayer (male and female) I’ve encountered in my small town.

As memoirists have noted since the dawn of literature, the events depicted here are remembered, filtered through the lens of time, and recalled on the page to the best of my ability. I can certify that I’m not making any of it up, especially the becoming paralyzed part. In that sense I wish I was lying—really. Because then I wouldn’t actually be confined to a wheelchair, and that alone would be worth the wrist slap on National TV from Oprah many times over. Furthermore, as Dave Eggars notes in his own autobiography, most conversations depicted here are nothing near to what was actually said at the time, the memory of them forever altered and eroded by the passage of time; however it is still the most bizarre, most unreal exchanges that tend to be the closest to verbatim (with the exception of the ones that are truly imaginary, like the nightmare comprised of Dr. Rosemond in the confessional booth).

I wish to thank the following, in no particular order, for their help, support, ideas and inspiration: my parents Ed and Rosa, F.D.R., Reninca Labella, Jill Marbaix, Dan Lazar, Lisa Westerman, Pam Johnson, Michele Angerosi, Miles, Dizzy, Monk & Byrd, Andy & Katie Mann, Dr. John Rosemond, the alpha-dad with the perfect hair and popped collar, the Dattco bus company for providing me a place to work, Nickelodeon, Cartoon Network, Disney, Pixar, Carla, Dylan and Nick, Dave Peterson, Boppy (Dave Peterson, Sr.), Grammy & Pa (Fran & John Oktavec), and EVERYONE I may have callously left out – peace and love.

And last but not least Laura, Kyle, Kelvin & little Kaid—no one would believe the tremendous love I have for you all, so I had to write it all down.

CHAPTER 1

SATURDAY MORNING

"What, what was that you were saying about me? . . . I thought I heard you say

it was a pity. . . . A pity I never had children? But you're wrong. . . .

I have thousands of them . . . thousands of them . . . and all boys!"

- Charles Chipping (Goodbye, Mr. Chips)

I’m definitely not with the program. It’s Saturday morning, it’s before 9 am and I’m nearly dozing in place, as a cow might do, on the field behind our town’s elementary school. I’m wearing the jeans I had on yesterday, the tee-shirt I slept in, and the quickest, least cumbersome footwear I could stuff my feet into, which happen to be a pair of worn Tevas. Josh, my newly acquired five year old step-son of three weeks, however, is appointed like Beckham himself; and apparently he’s not the only one.

In our town, the first Saturday morning of kindergarten soccer isn’t just where we present our little ones to the world. There’s also a bit of parental pageantry going on as well. Who knew? Just about everyone but me, judging from a quick visual survey of the duly appointed thirty and up crowd on this misty, early autumn morning.

Here they come; the Alpha Parents. First we have Dad Number One. Yes, each and every lobster on his navy blue shorts has been hand-embroidered. The outer of the two Polo shirts has the collar expertly popped up; expert in the sense that it looks completely non-deliberate, as if a sudden gust of wind had done it, yet clearly and utterly precise. I shake my head as I look down upon my own stained jeans and weathered sandals, my curled, gnarly toes poking through the cracked, pilling straps.

But back to our subject - and on his arm we have: nobody. His wife is here, wearing a floppy straw hat and a flourishing sample of this season’s demure pastels and earth tones, but she, like most of the wives, appears to have put the maximum distance between her and Dad Number One that the legal dimensions of the field will allow. At first I thought this was a figment of my imagination, but this curious ritual of un-coupling will become more common with each of these functions I attend. Some couples, I notice, will even arrive at exactly the same time, in separate vehicles, and promptly reconstitute into two distinct gender groups. It reminds me of junior high school, where the girls and boys remain within their own ranks, separating only when absolutely necessary.

Nevertheless, these folks are all way better at this social butterfly thing than I am.You can tell by the relative ease with which they assume their roles that they’ve all done this before. Once enmeshed within their groups, some become boastful and pugnacious, while others are deferential and self-deprecating. I, on the other hand, have no place within this social pecking order.

Out on the field, some 50 yards away, coaches are doing their best to make this event resemble an organized team sport. They are volunteers, most likely parents of players themselves. I try to imagine the amount of sheer enthusiasm needed to enlist in such an activity, and wonder if I will ever share that desire. At this point, I’d be happy if I had the confidence to join in with those two sideline dads over there, bent-kneed, pointing and emphatically discussing what I can only guess are the subtleties of their kindergartener’s ball-handling techniques.

For now, I elect to stay out on the fringe, removed from the activity. It is going to take some effort to propel myself over the spongy surface to join the throngs of frenzied parents and their ball-chasing offspring.

Every so often, when there is a lull in on-field activity, Josh glances over in my direction while scanning the rest of the sidelines. He’s probably wondering if any of the other grown-ups are here. Mom’s running a few errands with your little brother and your father works weekends during the boating season, so for the time being, it’s just you and me, bud.

But because I am the closest thing to a parental guardian Josh has at the moment, I may have to actually insert myself amongst the proceedings. I sigh heavily as I try to think of the least invasive way to do this. Most of the crowd wouldn’t know me from Adam, and even the casual acquaintances from around town have never seen me at any kind of parent-child activity before. Perhaps I would be less out of place in the local hardware store, the coffee shop, or tossing down a few at the local bar. I have never been seen with children before.

But I’m not the only fringe dweller. There are a few other disenfranchised souls as well; for instance that guy over there with the shaved head, goatee and the black AC/DC tee shirt on – he’s a little more my speed. Or the skinny, nerdy looking guy with the glasses and Microsoft embroidered on his shirt; I’m sure we’d have lots to talk about. Hi, I’m the other oddball. Mind if I hang with you?

But I’ll ignore myself and focus on Josh. It’s his first day of soccer. It’s a milestone, of sorts, and I’m fortunate to bear witness.

Soccer at age five is the closest to true freedom that most of us will ever reach. There are no positions (or none you need to adhere to with any consistency), no playing your zone, no off-sides, no jocks (yet), no cheerleaders to impress, no division championship; just boys and girls together, chasing a ball, blissfully unaware of life’s many encumbrances. If they even touch the ball a few times, that’s a good thing; if the ball should roll into the other team’s goal that’s even better, for at this age, there’s a better chance that the goalie will kick the ball into their own goal by mistake.

It looks like the coach of Josh’s team is motioning to the parents who belong to the players of his team into a huddle of sorts. I guess that means me, right?

Still, I hesitate. For as uncomfortable as it is being the only non-biological parent here at the soccer field, it still dwarfs in comparison to the terrifying sensation of being the only non-biological parent at the soccer field in a wheelchair. These responses have become so cookie-cutter in nature, so utterly predictable, that I can actually categorize them. For instance, there’s the I’m going to look once, just one quick look – OK, there – I’ve looked response; and the more complicated I’m going to force myself to ignore you, as if you aren’t even there, thus creating a stranger vibe than if I had just looked in the first place response; and of course the person in a wheelchair - I’ve got to ask him if he needs help – yes I know he’s just sitting there reading the paper – but I must do it anyway – ‘excuse me, do you need help?’ – there, I’ve done it, I feel better response; followed by the ever popular please don’t let me say anything stupid, please don’t let me say– ‘hey Speedy Gonzales, slow it down in that thing’ – oh crap! I did it again! response; and finally, and by far my personal favorite, the "oh fuck it, I’m just going to stare, blatantly" response.

The contrast between the non-disabled and the disabled world only seems sharper if you had first lived life without impairment, as had I for the first nineteen years of my life. Regardless, the first time you are wheeled out in public with your brand new disability you feel as though the reactions of those around you are amplified way beyond normal proportions. Your ears become giant parabolic reflectors. Your eyes become two magnifying glasses. You’re not spared one sidelong glance, or a single uncomfortable sigh or fidgeting. The pity becomes an almost permeable texture like heavy humidity, or a sudden drizzle of rain.

For some reason, my wheels feel even heavier in the damp turf, almost like rolling through quicksand. I pensively edge closer to the forming group of parents with what amount to a series of little upward bursts of the front end of my chair. These hops are necessary, for if I don’t lift the tiny front casters out of the grass with each push, the front end might jam up and actually spill me out forward. This would not be good, especially as I’m trying to remain as unnoticeable as possible, and take it from me – nothing draws more attention than a paraplegic who does an unintentional swam dive out the front of his wheelchair.

***

As I laboriously approach the parents of Josh’s team mates, I realize that most seem to know each other very well, and there’s much glad-handing and camaraderie to go around, so I stop and catch my breath a few feet away from the throng, hovering somewhat detached, by a lone coniferous sideline marker, apparently still invisible. Maybe I can get away with just listening to the coach from afar, and then spirit myself back to the edge of the field without causing too much notice.

But what’s this – handouts for the parents? That means I’m going to have to be responsible for official children’s documents! My fear is replaced now by a strange feeling of excitement, and I realize that as routine a procedure as this may seem to the seasoned parents out there, this is a definite first for me; a watershed moment – the point where I put way more than just my foot in the strange waters of this whole parenting venture. This simple schedule – eight weeks on plain