Category: Delving Deeper

(Brett pictured with Sophia)

By Mark E. Smith

When I meet fans of WheelchairJunkie.com in-person, they always have a million questions. However, almost everyone asks one specific question, word for word, “Is that guy, Brett, on the message board, crazy?”

“Absolutely nuts,” I confirm. “I’m waiting for him to mail me his severed ear like Van Gogh.”

Of course, in real life, Brett isn’t crazy in the least – but, he is among the most inspired individuals I’ve ever had the pleasure of knowing, where he quietly strives to empower those around him, making his community a better place in the process, day after day, no matter how his life has changed.

I’m not sure how long I’ve known Brett, but my first encounters with him must have been seven or eight years ago. And, I’ve been a fortunate witness ever since to the powerful life journey that he’s lead.

In 1991, Brett was graduated with both a B.S. in biology and a B.A. in art, going on to pursue a doctorate in neuroscience. In 1997, his education goals were achieved, earning a Ph.D. from Temple University. And, in-between, Brett pursued his passion for teaching, pointing to a likely path as an inspired young professor.

However, as you, yourself, may know, there are no certainties in life, no guarantees that if we simply work hard and live well, we are assured of calm futures. For Brett, this reality was presented in the first-person when, in 1997, just one week before receiving his doctorate, he was diagnosed with multiple sclerosis.

By 1999, Brett used a wheelchair and scooter, facing the progressive realities that many with M.S. experience. As I knew Brett through correspondences and meeting up with him at expos, I saw that there were obviously tough changes occurring in his life, the ebbs and flows of romantic relationships complicated by disability, the realization of losing portions of his independence, and the necessity to make changes in his living arrangements due to his progressing condition.

Yet, the more Brett’s life changed, the more focused he became, finding safe harbor in his two truest foundations, religion and art. It was these two passions that compelled him not to let M.S. slow him, but to inspire him. In the 10 years since his diagnosis, Brett has become a fixture in the M.S. community. Not only has he played a key role in championing 21^st-century awareness for M.S., voicing the need for more research and a cure, but he’s a tireless volunteer and participant at Good Shepherd Rehabilitation Hospital in Allentown, Pennsylvania, where he helps lead the art-wellness program and raises funds through such activities as an annual M.S. Walk team. In fact, in 2007, Brett embarked on the acclaimed Faces of M.S. Mask Project, an art endeavor in which participants created plaster masks of their own faces, painted as an expression of themselves in light of the disease. Of course, with such a positive outlook, it’s no wonder that Brett is a sought-after speaker, including delivering keynote addresses at M.S. conferences.

Personally, Brett is an artist in the truest sense, his paintings coming from within, the canvas calling him, a passion that is a bit hobby, therapy, study, and vocation mixed in, recognized by galleries, showings, and patronages. And, when not volunteering or working on his art, Brett practices a deep devotion of faith, leading prayer groups and singing in his church’s choir – a clear source of his inner-strength.

Of course, Brett will tell you that much of his success comes from his not being alone on his journey, with unyielding love and support from his parents and family, as well as his best friend, Sophia, his extraordinary German shepherd service dog who’s always by his side as confidant, partner, assistant, and cheerleader.

Despite the countless lessons that Brett’s zeal teaches many of us, what strikes me most of all is that his life prove among my own foremost beliefs: Life doesn’t always work out the way we want, but if we have faith, it does workout exactly the way that it’s supposed to – that is, presenting us with opportunities to learn, grow, and empower, making a difference in the lives of many others along the way.

In the New Year, let us all strive to follow Brett’s lead. Let’s not dwell on what we’ve lost or don’t have, or concern ourselves with what unwanted life changes may come our ways next. Rather, let’s draw upon our strengths and passions, and allow them to lead us toward making a difference in our our own communities and in the lives of those around us. Let us know that although we may not be able to control what happens to our bodies, with dedication, fortitude, and perseverance, we can control the impact that we make in the world – an impact that offers understanding, hope, and empowerment to others.

After 33 years of wheelchair use, I recently got my first elevating seat. Surely, I’ve known countless people who have had elevating seats on their wheelchairs with great success, and my company has manufactured them for many years; however, personally, I just never had one.

 

Environmentally, an elevating seat makes clear sense: It gives the ability to reach high places. Additionally, with the popularity of raised tables and bars at restaurants, an elevating seat increases social access, as well as allowing one to see over standing crowds at concerts and sporting events.

 

However, what’s truly captured my interest was in the common sentiment that I’ve heard users of elevating seats convey, that being able to look others directly eye-to-eye when elevated, as if standing, was a life-changing experience, for once not having to look up to others.

 

This expressed benefit of an elevating seat changing users’ literal perspectives on the world intrigued me. I’ve always lived my life quite comfortably and assuredly by using a wheelchair at a visual height of 4-foot-something, so was I missing out on some aspect of sitting taller at 5-foot-something that I never realized – that is, would being taller change the way I saw myself, others, and the world?

Based on all of the remarkable life-changing experiences I’ve heard, I was admittedly a bit nervous elevating for the first time. After all, was I going to realize all that I’ve missed out on by not being elevated all of these years? Would my wife, daughter, and house look different? Or, would I possibly feel different about myself, having greater confidence or esteem by being at literal eye level of others?

Nope. I hate to burst your inspired bubble, but sitting a foot taller makes no intellectual difference to me. I mean, sure I can reach higher places, and being able to sit at raised tables and see over crowds is fantastic – it makes the feature well worth buying. But, perception wise, it doesn’t make a darn bit of difference toward who I am. My wife, daughter, and house look the same to me, and, in fact, I don’t visually see any difference sitting about a foot taller than usual – and I certainly don’t feel any difference.

The fact is, I’ve never felt like I look up at the world or that it looks down on me. In my everyday seated position, socially and intellectually, I’ve always felt on a level field, right down to looking people in the eyes when we speak. Some might say that my view stems from my never having walked, that if I walked, my view from a wheelchair would seem different, like others really were looking down to me. 

I couldn’t disagree more. If one has a complex emotional hang-up regarding disability, a belief that one is less of a person when sitting in a wheelchair than when standing up, of course one will view height as an issue, believing that sitting taller somehow makes them appear less disabled. However, I say that height has nothing to do with me as a person or the extent to which others perceive disability. No matter if I’m a foot taller or shorter, looking at eye level or breast level, I’m still the same person. (And, in the interest of full disclosure, even when I’m sitting at eye level, I’m still predisposed to look at breast level, but only on certain individuals – this proves that added height does not change me for the better.) 

Interestingly, I heard a gentleman note that upon elevating his seat, his wife wanted to dance with him for the first time in 20 years. It is a touching sentiment; yet, it’s completely twisted, too. His wife wouldn’t dance with him at 4-foot-something, but would at 5-foot-something – how is that a relationship to appreciate? If my wife based any of our relationship on my height, not on who I am as a husband, father, and person, I’d skip the new elevating wheelchair, and, instead, look for a new wife! 

In fact, upon elevating the first time, I asked my wife what she thought of my new stance, to which she shrugged and noted, “It looks like an elevating seat to me.” 

No, an elevating seat didn’t turn me into Brad Pitt in my wife’s eyes. But, that’s alright – she’s always danced with me no matter how short and dorky I am. 

The fact is, as terrific as an elevating seat is toward environmental access – and we should all have one for that reason – it doesn’t change who we are. Anyone basing one’s self-worth or esteem on how tall one sits is missing out on a fundamental key to succeeding with disability: We are bigger than our bodies, and it’s not what we see, but it’s how we see ourselves. Sitting tall, it turns out, isn’t about height at all.

When I think of Dad, the smell of beer immediately fills my senses – I don’t think he ever didn’t smell of it. My mother often said that the reason Dad drank was namely due to my disability – but, even as a very young child, I could hardly believe that, even as much as I took the blame to heart.

In fact, somewhere along the line, my father told me stories of stealing liquor and cigars as a nine-year-old from his mother’s restaurant, getting a buzz going with his friends in a cave they dug by some railroad tracks in Oakland, California – it must have been the 1950s. By the time he met my mother in the ‘60s – he was sixteen or seventeen – he’d given up school, took to riding a motorcycle, and loaded catering trucks to get by. Soon, he was drafted to Viet Nam, where he took seemingly hundreds of pictures of himself and his buddies hanging around his base. As a child looking at the pictures, I always thought Viet Nam looked as hot and dangerous as it sounded in my school history books, as he was always pictured in a sweaty T-shirt, with a machine gun in one hand, and a beer in the other.

After Dad returned from the war, my brother and I were born, me just eleven months after my brother – and with cerebral palsy.

I truly don’t have any recollection of how Dad reacted to my disability beyond my mother’s recollection. All I knew was that like from the photos from the war, Dad always smelled of sweat and beer when he picked me up from my wheelchair to move me about. Other than that, he didn’t have much to do with me.

Among my few memories that I have of my dad from when I was a child was coming home from school one day in the third grade, finding Dad in our driveway, passed out in a convertible pink Mercedes, a car I’d never seen. There he snored, head cocked back over the seat, still holding on to the steering wheel as if driving, passed out cold in the pink Mercedes, its passenger seat full of empty bear cans and a Playboy magazine. I later learned that his boss – Dad worked as a grounds keeper for a wealthy couple – asked him to get the car washed, but somewhere he took a wrong turn, having a few beers, ending up passed out in our driveway, soon to be fired.

Dad was inevitably a well-worn drunk, unemployed, gambling, fighting with Mom, waking us up at night with drunken ramblings about the house. And, then he split, moving out of state, leaving us barely getting by on public housing and food-bank blocks of cheese and powdered milk for a time.

Once my mother remarried, Dad either called to tell us that he couldn’t see us because it was our mother’s choice to shut him out of our life, or he would promise to come see us on a certain day, at a certain time, and not show up, leaving my brother and me waiting by the window. I suppose that between the ages of eight and eighteen, I may have only seen him six or eight times, not even at my birthdays or high-school graduation.

One Christmas, though, for reasons I’ve never understood, when I was around eleven, my brother and I spent with him, and he barrowed money from us to buy our Christmas presents the day before, never to pay us back. We did have fun that holiday, turning the clocks ahead a few hours, waking him from a drunken stupor, tricking him that it was time to open presents hours before the agreed time.

It’s these few stories that have helped me come to terms with my father over the years, where if nothing else, Dad was consistent in his dysfunction. He even sobered up for a while in the mid ‘90s, and I tried to have a relationship with him, even writing about it in a book; but, it predictably wasn’t to last – not his sobriety, not our relationship.

When my brother called late one night this past April, explaining that Dad was found paralyzed on the floor of the camping trailer he lived in up in the Sierra Nevadas, I wasn’t surprised. And, when the tests came back from the intensive care unit that all my Dad’s organs were failing, that he had only days to live at best, unable to communicate, I wasn’t surprised at that, either. Yet, I was surprised when my brother found a letter addressed to us in our father’s safe-deposit box.

Dear Steve and Mark,

If you’re reading this, I’m probably dead. Just so you know, my girlfriend Georgette gets my Jeep. You can get rid of my other stuff or whatever.

Dad

My brother and I had to laugh – if nothing else, again, Dad was consistent till the end, not coming through with the words sons need to hear.

Ultimately, I have no ill regards toward Dad, having resolved any remaining feelings of rejection and abandonment through being the best father I can now be, as my brother has also done, where our daughters know what it’s like to sit down and do their homework with their fathers, never to smell beer or be left waiting by a window.

Surely, it’s somewhat ere now that my father’s gone. After all, even when estranged, there was some comfort in knowing that he was somewhere on Earth, with some possibility of meeting up again some day. But, it never was, and never will be – a real relationship with my father, that is – and I’m accepting of that.

My hope is that wherever my father is now, he’s smiling in a convertible pink Mercedes, with a twelve-pack of beer and a Playboy.

I like about profound physical disability what others hate about it: You ultimately can’t hide it. Clear physical disability demands living in your truest sense, as you physically are, undeniable to the world. You can buy a lot of disguises – fancy clothing, enhancing cosmetics, and other surface masks – but none vale a wheelchair, muscle spasms, or impaired speech. And, there’s liberation and empowerment to embracing such a simple rule, knowing that no matter how you dress or what airs you strives to present, you are still as you are, with your true cards on the table for all to recognize. I say that you can be better because of it – your relationships can be better because of it – where others take and leave you truly as you are, undeceived by fancy clothing, enhancing cosmetics, and other surface masks. I say, that’s living with disability – that’s living bold.

This hospital bed would be comfortable under different circumstances – maybe in my bedroom, watching television; or, maybe in a Las Vegas hotel room, overlooking the Strip; or, even parked in my office, in front of my computer, next to the phone. But, here I am on the fifth floor, in the cardiac unit of a hospital, staring at the stained ceiling tiles, listening to squeaky I.V. racks and E.K.G. monitors roll up and down the hall, reminding me of my own monitors, stuck in my arms, adhered to my chest. And, I just want to go home, and to work, back to normality, my own schedule, and family, and security. But, here I am on the fifth floor, in the cardiac unit of a hospital, staring at the stained ceiling tiles, wondering how they became stained – maybe a leaky water pipe overhead, servicing the sixth floor?

There’s a knock on the door of my private room, and I wonder if it’s good news or bad, maybe it’s solid food or more blood-thinning shots in my stomach?

“Come in,” I say.

“Mr. Smith,” the on-call doctor, Madeira, says in the most graveled voice I’ve ever heard, walking in with his clipboard, wearing a yellow tattersall oxford shirt that I recognize from L.L. Bean’s fall line some years ago, a shirt that I almost bought during my first semester working at the college, but couldn’t afford. “How are you?”

“I’ve been better,” I say, rolling over slightly, toward where he is on my left bedside. “How are my test results?”

“For whatever reason, your body isn’t producing enough blood,” he says, placing his clipboard on the counter in my room. “Your red blood cell count is exceptionally low.”

“I know, that’s why I’m here, Doc,” I say. “Delight me with something new.”

“Yes,” he says with a pained smile, as if hardly baring my sarcasm, standing beside my bed, an arms reach away, his hands crossed in front of his khakis slacks like an alter boy.

“What are all of the tests showing?” I ask. “You’ve taken nine vials of blood, performed an angiogram, a colonoscopy, a stress test, and had me drink mud while scanned by some nuclear machine – you must have at least found a button that I swallowed when I was two?”

“Well, yes,” he says again with a smile, glancing down at his shoes. “I’d like to give you blood.”

“Do you know anything more than you did yesterday?” I ask.

“Well, we’re still waiting for more results,” he says, reaching for the pager on his belt. “Excuse me, I need to use your phone.”

He walks around my bed, to the phone on my nightstand, and calls someone, explaining that it’s alright for a given patient to stop therapy. Then, he walks back around my bed, to his previous place, resuming his posture of his hands crossed in front of him.

“OK,” he says with that damn smile. “I’d like to give you blood.”

“We discussed this last night – can you tell me in no uncertain terms that it’s vital that I receive blood?” I ask.

“It’s in your best interest,” he says

“Look, again, unless you can assure me that it’s vital, then I’m not willing to take the risks of receiving blood,” I say.

“OK,” he says, now without the smile, impressing me that I’m a difficult patient. “You also refused your antispasmodic – is that correct?”

“Yes,” I reply.

“And, why is that?” he asks.

“I don’t take antispasmodics,” I reply.

“Why?” he asks.

“I don’t need them,” I reply.

“And, why is that?” he asks.

“I’m comfortable living with myself – I don’t need to alter my body or mind,” I say.

“Have you ever taken medication for your spasms?” he asks.

“As a child, and it made me a doped-up mess,” I say.

“Well, medication has changed in thirty years,” he says. “There are medications that can help you.”

“Help me with what?” I ask.

“Well, I see that you’re amazing adept at living with your condition,” he says, pointing from my bed to my manual chair, having seen me transfer myself last night. “But, medications could make you more comfortable, allow your legs to relax straight, for example.”

“The reason why my legs are pulled up toward my chest like this is because I am comfortable – it’s my body, in its natural state, whether or not it makes you comfortable,” I say.

“But, you take medication for your acid reflux – so you pick and choose your treatments,” he says.

“Acid reflux is a medical issue, my cerebral palsy isn’t,” I reply.

“And, how’s that?” he asks.

“My cerebral palsy is static, it doesn’t get better, or worse, and doesn’t require treatment – it’s like any other permanent physical characteristic, it just is,” I say.

“OK,” he says. “I’ll see you this evening.”

He leaves the room, and I try to relax, taking a deep breath, feeling the pinch of my I.V. sandwiched between my left forearm and thigh. But, then there’s a knock on my door.

“I forgot my clipboard,” the doctor says, walking by my bed, toward the counter.

“Robert, I notice a tracheotomy scar on your throat,” I say, making eye contact. “What’s that story?”

He stops in his tracks, crossing his hands in front of him, paused.

“Yes, when I was thirteen, I had a lung collapse, and removed, and had a trach for nine years,” he explains.

“I appreciate that,” I said.

He nods, picks up his clipboard, and heads for the door.

“So, you understand,” I say.

“No,” he says, glancing back at me, closing the door behind him, leaving me to return to the ceiling tiles.