AM A SPECIAL-NEEDS DISABLED CRIPPLE?

Recently, a friend wrote me about an idea he was puzzling over.  It concerned the language of disability.

The very word itself, he said, was troubling--and I agreed.  He wished there were a term that "didn't even remotely imply 'substandard' or 'not,'" he wrote.  He wished there were "a different gestalt altogether."

(Gestalt!  Now THERE'S a word!)

He's certainly not the first person to raise these sorts of concerns.   What's so great about the word "disability"?  What was so wrong with the word "handicapped"?  Is the word "cripple" still considered offensive? 

 

In further explanation, he fleshed out this scenario:

Wouldn't it be nice if people thought

'There goes Ben, just like me'
and not
'There goes Ben, I'm glad I'm not him'

Well, I couldn't disagree with that!

In answering him, however, I felt like he'd released a pent-up wellspring of ideas and yearnings.  Every movement--perhaps every generation--has gone through the undulations of nomenclature.  (Okay, maybe that's a bad phrase.)

For example, how did we go from "Black is beautiful" to "Black" is not good, or at least not as good as "African American"?  How did "gay" suddenly become LGBT (and now I'm told it's LGBTQA)?

All right, these are rhetorical questions.  I'm not so much interested in the answers as the ideas behind those transitions.  Are any words or terms intrinsically good or bad, positive or pejorative, or is it just a matter of context?

I told my friend that his idea was a good one for an essay, but that he might want to flesh it out a bit.  Perhaps provide some linguistic history--for instance, I believe the oldest English word for someone like me IS "cripple."  Chaucer used it, I think.  It referred to someone who creeps along the floor (no doubt related to the word "creepy"). 

Many folks I know object to the word "disability" because it does sound so negative, yet at least it has the advantage of being a term chosen by disability-rights activists, as opposed to imposed upon us in patronizing fashion by others.  I don't love it, but I think it beats the treacly euphemisms such as "differently abled," "physically challenged," or "special needs."

On the other hand, I told my friend, we all have bigger problems to worry about than language, don't we?  I think of this when I hear people use politically correct terms like "gay" or "African-American" to say something disparaging and most definitely not politically correct!  Do words really change attitudes?  Not sure.

What do you all think?

TWO SCORE AND TEN

In a week from now I'll have lived a half-century.  Turning 50 is something people do all the time, and never without some trepidation or at least reflection.  What surprises me, though, is just how calm I feel about it.  Guess I've been anticipating the moment for the past year if not more, so it's actually a bit anticlimactic.

Or is it?  Am I just saying that to calm myself down?

In the greater scheme of things, what makes my 50th birthday momentous must be the fact that I wasn't always expected to live to my teens.  In the dark ages when I was born, doctors didn't know what to make of my sluggish infantile development.  I failed to sit.  I was a floppy baby.  Many diagnoses were pinned on me by way of explanation.  Perhaps chief among the accomplishments I would never attain: adulthood.

In memory, my parents never believed that stuff.  They held to what must have been a romantic ideal--that I would grow up and, moreover, could become anything I wanted.  And fortunately, I didn't want to become anything I couldn't.  I knew I wasn't going to be an athlete, for instance, and when MDA--in that early-1970s telethon ad I've done my best to make famous (or infamous, really)--declared that I wanted to be a fireman "if" I grew up, I balked at the absurdity of it!  I wanted to be a scientist, a detective, maybe a starship captain.  I had bigger fantasies!  And yes, I saw myself as more brain than braun.

Which is not to say that I didn't have fantasies of physicality, too.  In fact, I frequently imagined chasing after bad guys--running and jumping and fighting like my heroes on TV.  It was just that I saw these uncharacteristic activities as add-ons, a vague sense of unrealized potential, but not as regular or likely scenarios in my future.

After all, though Capt. Kirk was more than capable of kicking ass, that wasn't why he was captain, really, was it?  He was captain because he knew how to be in charge, knew how to think outside the box.  He was smart and daring.  Had leadership qualities … which my teachers said I possessed as well.

And so I went on expecting whatever my version of a normal life was.  I boldly went to Harvard.  I boldly fell in love and my girlfriend and moved across country.  I boldly looked for work and, failing, boldly tried to publish novels.  Got married to that girlfriend, too.

I gave up the dream of ever being dubbed a wunderkind when I turned 30.  Three years later I became a father, a miracle that was repeated three years after that.  By and by I found occasional work as a writer.  In time, technology caught up with me.  Thanks to the Internet and voice-recognition computers, I was able to write more, more quickly than ever before, and do independent online research, submitting my writing without needing others to deliver it.

Disability rights kept up with me, too.  It gave me a community, a sense of history, and a new subject to write about.

Still, there have been many times over the past 50 years when I doubted I would make it to this landmark.  Bad asthma and bronchitis have periodically undermined my optimism.  Occasional hospitalizations--especially the series of unfortunate events that took up most of late-2007 and 2008--brought me closer to that "undiscovered country" than I'd like to be ever again.  Yet somehow I'm still here, despite occasionally wondering how much longer.

Are there still things to do?  Of course!

Besides the personal goals of seeing my children grow up and so forth, I held in my heart for many years the dream of publishing a book.  A real book, distributed by a real publisher.  Three months ago, that dream became a reality.

I'm still not quite believing it's true, still in the midst of trying to promote that book, still incredibly emotionally fragile over its rises and falls in the Amazon rankings and elsewhere.  If I get a good review, even in some obscure Web site, I feel complete as a person.  If there's a lull and the book seems likely to die of neglect, I die a little inside, too.  I'm like the high school nerd waiting breathlessly for a smile from the popular blonde cheerleader.

So here I am, nearly 50, maturing but with definite strains of immaturity.  And for those of you keeping track, yes, my birthday this year falls on Thanksgiving--as it did when I was born.  It happens that way every few years.

This time, however, I meet my birthday with many of my life's dreams achieved and nothing to look back on with regret.  My only real fear now is, what will be my next set of dreams, goals, disappointments, and accomplishments?  Because turning 50 shouldn't be just an endpoint; it should also mark a new beginning.  Yes? You think? 

I'm game!

THE PRESIDENTIAL DEBATES…

... got off to a rousing start last night (yawn!). But one key issue--one attribute--was conspicuously absent: Ann Romney's multiple sclerosis.

In the past, she and hubby Mitt have made a big deal about this.  And lest you think I'm exaggerating the importance of multiple sclerosis in this election, at the Democratic National Convention in August, Michelle Obama made a big point about her father's multiple sclerosis, too!

For a while there it seemed everybody wanted to get on the MS bandwagon. But why? If experience with multiple sclerosis makes one better suited to be president, then I should run for emperor!

Disabling conditions like MS can be profoundly educative, to be sure.  But they hardly make you special, or even presidential material.

I was born with spinal muscular atrophy, a congenital and progressive neuromuscular weakness.  I've never walked or stood, never had much use of my hands--though I was able to feed myself till about 20 years ago.  Now my hand strength is completely gone.

Not that I'm seeking pity.  Nor do I want to engage in a game of "who suffered more"—the Romneys, the Obamas, or myself.  What I am saying, however, is that I know the disability experience, and I know it's not in and of itself grounds for leadership.

Yes, it can make you humble.  It can also make you angry.  It can make you give up, or it can lead you to find an inner strength you never knew you had.  Or it can do none of the above.  There's really no predicting.

No matter how we react to our own disabilities, people call us courageous and inspiring.  They mean well, but there's nothing ennobling about having a disability.  None of us asked for it or had any special qualifications.  It simply happened, and it can happen to anyone.

You never know how well or poorly you will cope when disability enters your life.  But somehow you will cope.  We all do.  We don't honestly have any choice about it.

So are the Romneys or Obamas better people for their encounters with a crippling condition?  Possibly.  But one thing is clear: they didn't survive it because of their grace or strength of character or gumption.  They survived simply because they endured.  In short, they got lucky.

I concede that having personal knowledge of a disability does lend a candidate some common ground with the estimated 50 million Americans who are living with a disability.  That's as far as it goes, though.  It's just not that unusual a thing.

In my experience, the challenges associated with disability come in three varieties: First, and arguably foremost, are the physical/medical struggles.  We do have to fight with our bodies' limitations. 

Second are the societal barriers--the attitudes and obstacles that can isolate people with disabilities from the mainstream.

Finally and perhaps most importantly, there are economic issues.  Disabilities are expensive.  Even leaving out medical bills, a motorized wheelchair can easily cost as much as a new car.  A modified van starts at $50,000.  And if you need full-time personal-attendant care, you'd better have a spare hundred-grand on hand.

The extent to which a disabling condition impacts one's life is directly related to one's financial resources.  If you do have sufficient funds to procure the medical attention and assistive technology you need, your disability can practically be reduced to a mere inconvenience.  So I'm not really sure the Romneys experienced disability the way poorer people do. 

In fact, the most recent census reported that a third of working-age adults with disabilities are unemployed, far higher than any other minority group, and 27 percent live below the poverty line--double the proportion of adults without disabilities.

Granted, neither the Romneys nor the Obamas invented this idea of disability as a kind of badge of courage.  It harks back at least to Franklin Roosevelt.  Whenever the polio-surviving president couldn't hide his inability to walk, he cleverly manipulated his image to turn a presumed liability into an asset.  His disability became a stand-in for the Great Depression itself, and his ability to rise above it--albeit on crutches--a symbol of his mettle and the nation's potential to overcome.

To this day, people with disabilities are called "overcomers" a lot.  I don't know how many times I've been praised for "overcoming" my disability.  It's simply not true.  I haven't overcome it, Mrs. Obama's father didn't overcome his, and even Mrs. Romney--whose MS seems to be in remission--hasn't overcome hers either.  Be inspired if you like, but none of us deserves credit for beating our conditions.  We can't.  Rather, we learn to live with them.

If a candidate truly wants to embrace the disability experience, he or she must understand that we don't want sympathy or blanket admiration.  We want respect, opportunities, a place at the table.  Not because of paternalism or pity, but because of an honest, realistic, un-sentimental understanding of what living with a disability is really like.  And maybe it's not so different from what life is like for everybody else.

###

A BERKELEY STATE OF MIND

By Ben Mattlin

It's widely reported that a certain famous novelist has a new book out that takes place on and around Telegraph Avenue--that multicultural boulevard running through Berkeley and Oakland, California. A worthy landscape, to be sure, but I can't help wondering if his fiction will do justice to that area's seminal role in the disability-rights movement.

Granted, it may seem a small part of that vibrant cityscape's history.  Small to you, that is.  As a lifelong wheelchair-user, I can't help regarding Berkeley and environs as a kind of Holy Land.

I myself didn't understand their importance until researching my own book--a memoir about growing up during the height of disability rights.  I found myself referencing Berkeley over and over again.

In fairness, I haven't been privy to the celebrated author's new novel yet, but I'm reasonably certain there's little or no overlap in our takes on Berkeley.  Does he mention the Rolling Quads, for instance?  Doubtful.  But once you learn of them, how can you forget this Merry Prankster-ish troop of early activists who tooled around the Bay Area protesting access barriers in the late 1960s in revolutionary devices known as motorized wheelchairs?

Does he reference the world's first curb ramp for wheelchair-users, cut at the corner of Telegraph Avenue and Bancroft Way?  Or that it was at the renowned University of California, Berkeley, campus that Ed Roberts, a polio survivor, fought for (and won) the right to attend regular classes in his wheelchair, decades before any disability-rights laws had even been considered?

Roberts is now known as the father of the independent-living movement, which went beyond the political idea of equal rights to actually mapping out how people who were so totally dependent on others physically could be empowered to control their own lives.  His legacy (he died in 1995) is a national network of independent-living centers designed to support people with disabilities in that quest.

 
No reason the famous novelist should listen to me.  His story and mine are completely dissimilar, I'm sure.  And I have no personal stake in Berkeley--I don't live there--other than the debt of gratitude I feel.  Yet I remember my father's taking me to the original ILC there, in 1979.  I was on the cusp of starting college on the East Coast, of living on my own (with a paid attendant) for the first time.  Dad thought the place might inspire us, teach us something.  What I recall mostly is my adolescent discomfort at all that talk about rights and empowerment--but I loved the gadgets.  The speakerphones, remote switches for lights, and souped-up, customized wheelchairs that have become emblematic of modern disability life.

I'm confident I'm not the only one who feels this visceral connection.  Many disabled people's lives have been profoundly affected by Berkeley's revolutionary zeal.  Leaving this particular material out of any yarn about Berkeley would seem a major disservice.  Even today, Berkeley is the home of the World Institute on Disability, a leading think tank on nonmedical, non-technological, disability-related issues.  Policy leaders from around the globe convene on its campus to discuss the very survival of what, in some countries, is the most marginalized population.

 
Chances are the celebrity novelist already knows some of this, though he might not feel it in his bones the way people like me do.  You can't spend time in Berkeley and not be aware of its sizable disability presence.  And in truth, the city itself takes up only a small piece of my book.  (The word "Berkeley" appears only a dozen times out of some 75,000 words.  I counted.)  But I like to think its spirit pervades my true tale of the struggle to achieve a sense of autonomy and pride in a sometimes unaccommodating, even hostile, world.  Isn't that what Berkeley-ism is all about?
 
Perhaps the eminent novelist and I could tag-team.  Not that we should literally tour together, but could we defer to each other on specific areas of expertise?  I'll take the accessibility stuff, and he can have the rest.  Yes, trying to piggyback my book promotion off of his (and vice versa) may sound crazy.  But these days, when you're not supposed to judge a book by its cover but are expected to judge it by dubiously-sourced online reviews, who knows?  Maybe I'm onto something.  Maybe this'll prove a winner after all.
###
Quick links: The books mentioned here are –

Telegraph Avenue: A Novel, by Michael Chabon

Miracle Boy Grows Up: How The Disability Rights RevolutionSaved My Sanity, by Ben Mattlin

ON FATHER'S DAY, BREEDING MUTUAL RESPECT

By Ben Mattlin

Now that my father is nearly 85 years old, we seem to have a lot more in common than we ever did before.

That's not just because I'm now a father myself.  It's because Dad, who's still in remarkably good health, has had to slow down, which has caused him to understand at last what my life is like as a physically disabled person.

I am a lifelong wheelchair user, thanks to a genetic neurological muscle weakness.  It hasn't stopped me--I'm also a Harvard graduate, husband, father, and moderately busy financial journalist.  But having a disability can at times force me to go slow.  It often makes me plan logistics ahead of time, quashing any impulse toward spontaneity.  And it's given me a particular perspective on life's multifaceted values.

The overlap in my worldview and my Dad's became clear in a recent conversation.  He was grumbling that he shouldn't have to "think young" or pretend to have more energy than he does--that he's entitled to move slowly, spend long afternoons in a rocking chair, need a seat on a crowded bus or even doze off in the theater.  "Sloth," he joked, "is no longer a sin at my age.  It is a well-earned privilege."

My father has a keen wit, to be sure, but for me these sentiments have important repercussions.  I've often pushed myself too hard, felt afraid to use my disability as an excuse--in short, I've acted like what disability activists call a "super crip," trying to be better than average just to prove I shouldn't be counted out. 

Many other minority groups and women have said they have to work twice as hard to be treated as equals.  It's basically the same thing. 

Remember when George Bush Senior went skydiving in his 70s to prove his virility?  How often do we hear about an awe-inspiring quadriplegic or amputee who climbed a mountain or went hang-gliding, or performed some such Herculean stunt?  Maybe they're just naturally outdoorsy, but surely they also want to demonstrate that they've still got it, are still in the game--that there's no difference between them and everybody else. 

Is it really necessary to put these extra physical challenges up against the so-called physically challenged?  Frankly, I think I'm as good or bad as anyone else just as I am, without having to prove it.

I concede that these brave acts do inspire--but some of us are too busy just doing the heroic business of surviving.  Do we really need to do something superhuman to feel good about ourselves and gain the admiration of others?  Don't we deserve the same degree of respect as anyone else?  Frankly, I often feel that the everyday survivors are the true inspirations anyway.

Later, in another conversation, Dad said, "I hate it when people tell me, 'Oh, you're not old!'"  He laughed at the patent absurdity of it.  "I'm almost 85!"

This funny comment struck a chord with me, too.  It called to mind the many times I've heard things like, "We're all disabled in some way."  Comments that are meant to be kind and accepting, I suppose.  So how come all I want to say back is, "Oh, come on!"?

It's as if the words "old" and "disabled" were unspeakably dirty concepts.  There should be nothing shameful about aging or about having a disability.  We shouldn't have to minimize or sugarcoat them.  In fact, I think we should be proud of them.

I asked my father about this.  He denied meaning anything so profound, but I don't think I'm projecting to say he feels a tad insulted, or at least patronized, by such remarks.  And I wonder if he hasn't actually taught me a great deal over the years about accepting differences after all, even if those differences are simply a matter of age.

###

MIRACLE BOY GROWS UP: How the Disability Rights Revolution Saved My Sanity is available now for pre-order from Amazon.com and BN.com--for more info, go to www.MiracleBoyGrowsUp.com

More on PUSH GIRLS

First of all, I've been guest blogging.  It's supposed to be a good way to promote my upcoming book.

(Most of my guest blogs have appeared on DisabledOnlineLosAngeles.  Check 'em out.)

The most recent one, I talked about the new Sundance Channel reality TV series, "Push Girls."  So far, I guess you could say I have a love-hate relationship with the show.

I love that it exists.  I love that it shows hot, empowered women on wheels.  I love that it uses real para- and quadriplegics, telling their own real-life stories.

But…

Well, in fairness, when it comes to disability issues I'm a bit of a radical.  I think the most disabled among us should be welcomed as equals.  I want to hammer those who construct or sanction obstacles to acceptance, integration and access--those who accept or perpetuate stereotypes.  I want to salute all those who've come before and laid the groundwork for everything from curb ramps to civil-rights legislation.  The things we practically take for granted now.  I want to remember, appreciate, and remain vigilant.

This show does none of that.

I understand they are supposed to be loud and brash and flashy.  That's the nature of TV, especially Reality TV.  But when one of them says something like, "If you can't stand up, you've gotta standout!",  I want to answer back, Why?  Isn't it okay just to be who you are, disabled and all?

Granted, I love the scene where the one goes to be photographed in an attempt to restart her modeling career--and ends up having a muscle spasm.  The photographer sort of freaks out, but the woman herself remains calm and in control as she explains what she needs, why this happens to her, and what to do about it.  This is the reality of her disability, and she is completely competent in controlling her own care, making sure her needs are met.  A powerful scene that's especially significant if you know the history of disability portrayals.

I hope to see more like this.

Unfortunately, the first episode was a tad overmuch for me.  Now, I'm not exactly a Reality TV fan.  I'm not into the voyeuristic aspects.  But to me, too often these women seem to protest too much (to borrow from Shakespeare).  It's sad.

For instance, when one of them says that people wonder if she can still have sex, she doesn't just say yes, I can and do.  She actually ladles it on with "oh yes--lots and LOTS of sex!"

Puh-lease!

In future episodes, I'm looking for more about obstacles and barriers and advocacy.  It's a dangerous thing when the burden of integration is put on the oppressed minority--in other words, to say these chicks will fit in just fine if they're plucky, sassy , and brash enough to make it.  I'm delighted they're independent-minded and hate to be helped, as they keep reminding us.  But sometimes we need to ask for help, and the sooner we face that the better. 

And sometimes--maybe all the time--we need to remind the nondisabled world that it ought to meet us halfway, at the very least.  We might not want favors or special treatment, but we shouldn't have to do all the work of inclusion ourselves.  Because all the guts and bravura (or hairspray, makeup, bangles, etc.) in the world won't get your wheelchair up a flight of steps or even get you that job or that relationship.  The other side has to be open and affirming of us, disabilities and all.

Disagree?  Please let me know.

***
LA-based journalist Ben Mattlin, who was born with SMA, is the author of MIRACLE BOY GROWS UP: How the Disability Rights Revolution Saved My Sanity, available now for pre-order from Amazon.com and BN.com--for more info, go to www.MiracleBoyGrowsUp.com

NO APRIL FOOL

For me, April has a special significance I never fully realized until recently.

            In April 1977, when I was 14, I was in a hospital bed in New York, preparing for surgery to correct my severely curved spine.  The scoliosis came from a neuromuscular condition I was born with, a form of spinal muscular atrophy, which made me unable to walk or sit straight. 

            Without adequate muscles, my backbone was collapsing upon itself.  I looked more like a curly headed beach ball than an adolescent boy.

            I didn't know it then, but at the same time as I was lying helplessly in the hospital, disability-rights activists across the country were agitating to rescue me in other ways that would become apparent only years later.  Four years before, the federal government had passed the world's first disability-rights legislation--the Rehabilitation Act of 1973—but it wasn't being enforced.

            When I met some of the survivors of those protests, in researching my book about the movement, I learned that the biggest demonstration occurred in San Francisco (not surprisingly).  Those patriots actually camped out for 25 straight days and nights at the Health, Education and Welfare Department's local headquarters--sleeping in their wheelchairs or on the floor, sharing urinals, catheters, and personal-care attendants, bathing in front of one another with little shame.  Many had come from institutions where they were used to having no privacy anyway.

            I recall feeling a little like that myself, that I had no privacy, spreadeagled in the pediatric orthopedic ward.

            Anyway, these protesters had nothing much to lose and, frankly, nothing else to do.  Most were unemployed or had been banned from mainstream schools.

            I went to a regular school.  My parents had insisted on it, fought for it, in those bad old days before kids with disabilities were fully integrated. 

            Yet I had a lot in common with those protesters.  Like them, I was benefiting from the latest medical treatments, such as my scoliosis surgery, and technological advances like motorized wheelchairs.

            In the end, I came out straighter and taller than ever.  My breathing improved and the strain on my heart eased measurably.  And the activists proved victorious, too!  They got President Carter to sign new regs to enforce equal access.  The deadline was 1980, the very year I started college.  I became a sort of pioneer, a test case, at Harvard University.  So I was a direct and almost immediate beneficiary of the April protests.

            I never knew about these foot soldiers--or should I say wheel, crutch and guide-dog soldiers?--of disability rights until after I'd graduated and begun to ponder my role in society, my roots, as it were.

            What I take away from this saga of unsung heroes is a combination of gratitude and inspiration.  Even the smallest, most overlooked acts of righteous bravery can have profound repercussions.  After all, the regulations they spearheaded became the model for subsequent, more sweeping civil rights for disabled people.  And where would I be today without that?

            So for me April is a time for thanks and remembrance.  For a certain humility mixed with the hope of ever-possible rebirth.

###

GOODBYE FEBRUARY

For me, a White guy with a severe and highly visible physical disability, the history of African-Americans, which we celebrate in February, has a special resonance.

It may sound presumptuous, but I believe our minority experiences overlap in certain profound ways.

I was born with spinal muscular atrophy, a genetic degenerative neuromuscular weakness.  My spine is curved, my limbs are reed thin, I have the basic musculature of a ragdoll, and I can only control my motorized wheelchair with my lips.

When people see me tooling down the street or meet me for the first time, they often have an unnatural reaction.  Sometimes they even cut me a wide berth as if to avoid close contact—something I know many African-Americans have experienced. 

I thought about this when I heard a quote by Thurgood Marshall.  He once said that no matter where he went, whatever city he stopped in, he never had to look at his hand to remember he was Black.  He could tell by the way White people reacted to him.

My affinity for African-Americans was developed early on.  As a high school kid in the 1970s, I recall trying to catch a cab in New York with Kenny, my attendant and best friend, a young man from Trinidad.  Taxi after taxi would slow down and then speed away once the driver got a look at us.

In the years since, I've noticed things like if I'm out with a White person, White store clerks and waiters and such often ask him or her what I want.  Yet if my companion is Black, it's the other way around.  They turn to me for input, ignoring my friend as if he or she is an underling.

Perhaps more importantly, I know what it is to feel separate, even excluded.  Many aspects of our society are closed to me as surely as they were to African-Americans during segregation.  They may not be closed due to malice.  But if, for example, a school PTA function is held at someone's walk-up apartment or McMansion with steps out front, I can't attend.  And needless to say, discussing business over a round of golf or handball is out of the question, too, even if the country club or gym isn't technically restricted.

Not that I'm feeling sorry for myself.  But I do think I understand what many African-Americans have gone through in a way that other Whites may not.  And I believe this sense of solidarity is mutual.  African-Americans frequently nod at me or exchange a kind word when we pass on the street or in office corridors in a way that, I'm told, doesn't happen with other Whites.

Maybe this connection stems from my having spent so much time among Black people.  I've always needed help doing basic tasks—from getting washed and dressed to running errands and doing household or office chores.  Over the years, many of my assistants have been Black.  Lest I sound like Katheryn Stockett, author of "The Help," I believe the experience of needing a hand is also in keeping with the African-American experience.  Another Thurgood Marshall quotation: "None of us got where we are solely by pulling ourselves up by our bootstraps. We got here because somebody … bent down and helped us pick up our boots."

We all can benefit from recognizing past struggles and saluting the heroes.  But there's often a universality to each group's experiences.  Perhaps reflecting on commonalities as much as differences will help us rededicate ourselves to building bridges AND  ramps.

###

Super Bowl Sunday & My (sort of) PTSD

ROOTING FOR THE SUPER BOWL,
NO MATTER WHO WINS

By Ben Mattlin

With the New York Giants and New England Patriots once again facing off in the Super Bowl—as they did four years ago—why do I find myself shuddering in posttraumatic stress?

I'm not exactly what you'd call a football fan.  What's causing me to experience horrific flashbacks has nothing to do with the game itself.  It has everything to do with where I was four years ago.

Four years ago I nearly died.  Four years ago I was lying in the ICU at UCLA only semi-conscious after a botched colon surgery had left me with blood poisoning and sundry other dangerous complications including repeated pneumonias and multiple blood clots. 

I remember trying to watch the Big Game from my hospital bed.  The TV was at a weird angle, or my bed was, and it was difficult to hear over all the beeping machines.  In the hospital the TV is always on, it seems, but I couldn't follow what was going on.

I hadn't thought about any of this—at least not so vividly—until the Republican primaries started up.  That sparked the memory cylinders' chugging.  I missed most of that horse race four years ago, too.

I'm no stranger to medical complications.  I was born with spinal muscular atrophy, a genetic neurological delight that relentlessly weakens muscles.  I've never stood or walked, always used a wheelchair and been susceptible to colds, especially respiratory infections.  So for me, having a fairly standard surgery go wrong and completely upend my life and my family's life for the better part of a year seemed pretty much par for the course.

And yet it was anything but.

I'm all better now—from the hospitalization, that is, not the spinal muscular atrophy.  Though I still bear the physical scars of that ordeal in the ICU, my life is back to normal.  But then the Giants and Patriots started winning playoff games, looking like Super Bowl contenders, and I began to re-glimpse those bleary days. 

Last Sunday, when the mud at Candlestick Park settled and the Super Bowl rematch was official, it all came flooding back in dizzyingly sharp focus.  The way my coma fog had initially lifted to reveal my family gathered around—even my then-80-year-old father, whom my wife had called back from a vacation in Mexico … my struggle to communicate when intubation muted me ... the x-ray tech who awakened me each morning with a jolt, followed by a kind nurse who kept asking, "Mr. Mattlin, do you know what day it is?  Do you know where you are right now?"

And, of course, the impatience to return home, a wish that wouldn't be granted for nearly three months.

Ever since my hospitalization, I've taken special delight in not missing the Super Bowl, the Oscars, and other markers of the post-holidays season.  I'd always enjoyed them before, but they'd never felt so significant as they have the past three years—celebrating them as reminders of being well, of no longer being incarcerated among a webwork of life-sustaining tubes, of survival itself. 

With each passing year the flashbacks have been fading.  Which is why this year's HD-like clarity is so shocking. 

Of course, I missed other events, too, when I was too busy fighting for my life and stoned on medication.  The birthdays of my school-age daughters and my wife being chief among them.

I suppose this is how returning servicemen and women must feel.  Perhaps Congresswoman Gabrielle Giffords, too.  For anybody whose life has been interrupted by forces beyond their control, just to get back to the normal things—to experience ordinary, predictable occurrences—feels profound and wondrous.  The fact that this time nothing has gone wrong, no major disaster has interfered with the continuum we tend to think of as our due, becomes nothing short of miraculous. 

That's not necessarily a bad revelation.  What is bad—the stress, the trauma, the physical and emotional pain—will all heal in time.  But the recognition of making it through, of remembering to take joy in the simple things, perhaps should never be completely swept aside.

Is this the silver lining—learning to appreciate what you almost lost?  I'm far too cynical to accept such a notion.  But since bad things do inevitably happen to all of us, why not take away from them something of lasting value?

So this year I hope to watch the Super Bowl as never before.  That is, if I can stand it.  If it doesn't bring back too many ghastly half-memories.  Even if that happens, it's simply the fact that I can watch the game—any game—that counts for me.

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