CONVERSATIONS ABOUT INTER-ABLED ROMANCE, part 5

Like all romantic entanglements, the reasons for their tensions—tensions, which eventually led the invisible rubber band between them to snap—weren't quite clear.  Or maybe they were entirely too clear.  Telling me about it, Shane struggled for the right words, but his meaning rang with the clarity of breaking glass.

"For a while, she was planning on moving up here to be with me, to be able to help out with all my stuff," he explained.  "She wanted to be the one that takes care of me.  And for an 18- or 19-year-old to be committing her life like that, it's not, I mean—when she asked me for the breakup I was upset, obviously, but I knew it was the right thing to do.  I can't expect her to give up her life for me at this point in her life."

I asked Shane the question he seemed, to me, to have been hinting at: Did she get flak from her family or friends?

"Yes," he replied without skipping a beat.  "Okay, that's another thing.  Probably like three or four months into the relationship, she started telling me about how her sister and the woman they live with [a close family friend/guardian], how they didn't really agree with her being with me.  I've met them, and they're not evil people.  But, like, for instance, once the woman said something like, She's not going to be able to take care of you and provide for you, and all that stuff.  Her aunt was also kind of against it and didn't really understand what she saw in me, because of the wheelchair.  It made [my now ex-girlfriend] so mad.  She was livid at them.  But I think honestly being around them all the time, like, some of their thoughts kind of slipped into her mind.  And she started to see their perspective more than she used to."

There was peer pressure as well.  "Her sister … has an able-bodied boyfriend," Shane explained.  "At their age they're running around having sex all the time.  They drink, they go out.  I think she sees that and even though she doesn't want to be that shallow, she also kind of wants to be a young person.  And I want to give her that."

 

            It forces you to mature fast—or at least it makes you act mature, whether you feel it or not—having a profound disability. 

Conversations about Inter-Abled Romance, part 3

"The first time I taught her how to lift me, that was like a big step in the relationship!  She was nervous but she wanted to try it, because we couldn't really be intimate with me sitting in the wheelchair," said Shane.  "So I told her it's fairly easy.  I don't weigh that much.  I kind of assessed that she was fit enough to be able to do it.  [It's] something I have to think about when I'm talking to new people.  I immediately size them up and figure out if they'll be able to lift me or not.  I don't have any type of lift device in my house or anything."

I asked if this girlfriend had any kind of experience with people with disabilities of any kind.  "None at all," he answered.  "She was in one relationship before me.  But no one who had a disability."

Though it was a new experience for both of them, in different ways, they managed matter-of-factly.  Honesty, open-mindedness, patience, and perseverance got them through.  "We were able to be intimate once I was out of my chair," Shane continued.  "I was 19, and that was the most amazing experience of my life.  It was different [for her], obviously, but she didn't mind it.  I was able to do enough on my own that it worked out."

But that's not the end of Shane's story.  As if in answer to my unspoken question, Shane told me that good sex alone wasn't enough.  "A few months later," he went on, "I was really thinking about us, and all that, and I realized that I didn't really connect with her.  The only reason I jumped on it was because she was the first person who really wanted anything more than friendship with me.  That was really tough.  I didn't want to break up with her if I was never going to find someone else.  I didn't know if she was, like, an oddball. … At first I lied to myself and said, Oh yeah, it's much deeper.  But over time I admitted or realized that she was not a person I enjoyed being around.  So yeah, I had to let her go."

He said his "conscience wouldn't allow me to be with her if it was only for the physical stuff."  Which struck me as a mature observation for a guy who was at the time only 19.  "She understood that I was young and inexperienced and didn't really know what I wanted yet," he reflected, adding that they still talk occasionally.  They're still friends. 

The woman was 22.  I began to wonder if an age difference was a key element to interabled attraction.  After all, ML is three years older than I am. 

Shane soon put me off this thought.  "My second relationship was kind of the opposite of that one," he said with a chuckle.  On his blog, he'd requested volunteers for a nonprofit video project.  "This one girl from Florida was one of the people [who responded] that I selected—and really it was completely business," explained Shane.  "We worked together that summer from a distance.  She stayed in Florida.  And we worked via Skype and texting and email and all that."

She was only 18; Shane was now 20.  Working together, they became close friends.  "Probably my best friend, I would say, that I had at that time [though] we had not actually met in person."

Even after the video project was done, they kept in touch.  "We Skyped every night, pretty much, and it got to a point where I told her that I liked her and she told me that she liked me, more than friends," Shane recalled.  "But because of the distance and some hesitations that she had about everything, including my disability, she just finally said I'm not ready to be in a relationship yet so let's just hold off.  It hurt but I understood and I didn't want to push her."

Then came a surprise ...

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.

###

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.

###

Part 7 of "Miracle Boy"

First of all, readers, I have finally posted a promotional clip for this book proposal. It seems to be necessary these days for authors to double as pitchmen (or pitchwomen).

http://www.youtube.com/watch?v=i0eyffGTHLU

Now, on to the business at hand -- the latest installment of MIRACLE BOY GROWS UP ... (O, that I were in your shoes, encountering these words for the first time!)

***

Finally, finally, finally the door opens and Mom and Dad come out and they're smiling and talking and shake hands with Dr. Spiro, who waves at me.


"So what was that all about?" I ask in the elevator. Dad's pushing me. I'm facing the back wall but it's a mirror so that's okay.


"Just grown-up talk," says Mom.


Mom is intense and coiled-up inside, like something forceful and beautiful wrapped in a tight package. She's about a foot shorter than Dad; Dad's a good six-feet-two-inches, with broad shoulders, though he's not athletic. One of the things Mom and Dad have in common is a great faith in doctors. To them, medical science holds all the answers. "It's not so many years since a man named Dr. Salk cured polio," Mom has told me many times.


I'm not too keen on the idea of a cure for my amyotonia, though. I'm used to my life as it is and any change would be really weird to get used to. I'm not so badly off as many people think I am. I'm not. I'm not like other handicapped kids!


In the car, my chair folded and crammed between the front and back seats, Dad driving, Mom tells me more. We always take the car to Dr. Spiro's because his office is in the Bronx or Queens or someplace like that. "Dr. Spiro is pleased with you. He feels you're doing fine."


"He always says that,” I say, even though it feels good to hear.


"He sees almost no change from last year, which means your amyotonia may be stabilizing. He says it's now called spinal muscular atrophy. You're not losing strength, and you should stay the same your whole life. You know there's no cure still, but you're not getting worse."


You mean I could have been getting worse? I can't recall a time when I had more strength than I have today. I'm told I crawled a little as a baby, which I can't do now, but I figure I was smaller and lighter then. In any case, I don't remember it. I have no sense of lost capacity. So Mom's news ripples past me with little impact.


Mom says we know the worst of it now. She sounds relieved as she says this. From behind the steering wheel Dad adds, "That's good news," in case I didn't understand. If it's such good news, why was I kept out of the doctor's office? And what took so long in there? Just grownups' way of doing things, I guess. I look out the car window. It's getting dark.


If the bad guys pulled up alongside our car now and started shooting, I'd crash out through the window and jump on top of their car. I'd reach inside their window and pull out the driver. If the car started to skid off the road I'd jump off just in time. I'd roll on the ground with guns flaring. They'd run and I'd chase. They wouldn't have a chance. Even if they thought they had me they'd be proved wrong. Just when the bad guys felt I was down and out, I'd shock them by coming up strong and defeating them all, just like I surprise doctors with my strength and intelligence ...


"Of course, you're not going to get any stronger either," Mom says then. "There are no treatments for spinal muscular atrophy, none discovered yet anyway, but that's okay, isn't it? We'll keep hoping, but meanwhile we have to get on with our lives."


I can't read her face. There's a sharp turn at the end of the Triborough Bridge. I know it's coming. It always makes me tip over sideways in my seat, and I silently brace for the inevitable.


***

Part 2 of "Miracle Boy": 1962-1968

In 1962, 4 million babies are born in the U.S.—nearly 700 of them with an undiagnosed neurological disorder that will gradually weaken their muscles until, in most cases, breathing becomes too difficult, pumping blood becomes impossible, and they die.


I am one of the 700.


Though hereditary and therefore genetically present at birth, spinal muscular atrophy—as it's now known—can remain invisible until late-childhood or even adulthood. Mine shows up before I'm six months old. Half of those who manifest symptoms in infancy die before they reach the age of two. Their hearts and lungs become too weak to go on.


I am one of the lucky ones.


By the time I'm six months old my mother has already noticed I'm not progressing as my older brother Alec did. I can't sit up by myself. When placed in a sitting position, I fall over. After I bang my head on the parquet countless times, my parents stop sitting me on the floor. They sit me on the sofa instead, surrounded by pillows. They sit me in a high chair, where I can be strapped in. Later, they put a small football helmet on me, especially when I try to balance on my rocking horse or tricycle, or when Alec and I roughhouse. It's too heavy, however, and makes staying upright even harder.


My parents know something is wrong, but they don't know what.


They ask the pediatrician, who refers them to a specialist. The specialist recommends another specialist. And so on. The months become years, during which I am paraded before countless physicians, therapists, researchers and even a few crackpots. No faith healers (thank God!); my parents are not praying people. Still, I wouldn't be surprised if they offered up a few silent ones during the long waits in hushed waiting rooms and, privately, in the dead of night.


Even in the 21st century, when SMA is well known among neurologists, there's no slowing or stopping it. It's now considered the most common cause of genetically based neonatal death. It's estimated that one in every 6,000 Americans is born with a form of it, and one in 40 carries the gene that causes it without ever manifesting symptoms. In comparison, approximately one in every 300 Americans is HIV-positive, and one in every 206 has some form of cancer, according to the Centers for Disease Control and Prevention. SMA is more common than, say, ovarian cancer, which strikes one in every 8,065 American women (including my mother and maternal grandmother).


Not until the 1990s do researchers finally zero in on the exact genetic mechanism behind SMA. Most cases stem from a faulty gene on the fifth chromosome which results in a deficiency of what's called SMN1, a necessary protein. This deficiency, in turn, depletes motor-nerve cells in the spinal cord. But certain instances of infantile SMA have a different culprit—a mutation of a gene called UBE1, which happens to be on the X chromosome. This mutation impedes the disposal of a bad protein, allowing it to flourish. I don't know which version causes my SMA. In either case, these markers make SMA scientifically identifiable and may someday lead to effective treatments.


But in the 60s, when I'm a child, SMA is undiagnosable and, perhaps consequently, considered extremely rare by those who have heard of it at all.


So I'm at first diagnosed with many other conditions. Spina bifida. Brain damage. Mental retardation. That last one invariably coaxes a chuckle from my dad later, in the retelling: "Those doctors were mentally retarded!" In my cerebral family, God forbid you should make fun of the physically handicapped—and don't dare say "cripple"—but the mentally retarded are fair game.


One thing all the doctors and sundry experts agree upon, however, in the early-60s: I'm a "floppy baby." I have what's called "floppy-baby syndrome." It's still a recognized pathology in medical dictionaries. I lack muscle tone. A more scientific-sounding word for lacking muscle tone is "amyotonia," and that's what becomes my first official diagnosis. I learn to say "amyotonia" before I can add two and two. For me, it's a way of understanding my body—a plausible answer for the strangers who point at me and ask, "What's wrong with him?"


Or more accurately, "What's wrong with her?" The blond curls and long eyelashes I sport in those days apparently emasculate me. Never "What's wrong with you?" Till I'm at least seven I'm considered not competent to answer such a question.


Nothing is wrong with me! I just have amyotonia, I think to myself. My typical spoken answer, once I'm old enough and courageous enough to speak up: "I can't walk. I was born this way." It seems simpler and sufficient.


I never walk or stand. On my own, that is. When I'm four my doctors prescribe a battery of physical therapy; as part of it I'm fitted with heavy, metal leg braces. The braces lock me into a statue-straight posture. I'm then placed in a large wooden box, which supports my standing frame. I do this for an hour, three times a week ... to aid circulation and overall well-being, or something. Honestly, it must have been thought up by an able-bodied fitness nut! It's the closest a modern American child can come to foot binding—yet it's still recommended for many kids in wheelchairs! Luckily for me, the standing therapy is rescinded in a matter of months, when it's determined to have no value. Nevertheless, other physical-therapy exercises continue.


In nearly every other aspect I'm a healthy and happy kid. Yet every time I catch a cold I'm at high risk for pneumonia. I can't cough with sufficient force to clear mucus from my lungs. Regardless, from an early age I refuse to think of myself as fragile. Sure, I'm floppy and do bump my head a lot, but I always bounce back. I'm tough, resilient. I'm a survivor. The labors of my disability strengthen my character.


Other remedies are offered from time to time by physicians, therapists and outspoken streetcorner healers: Massive doses of vitamin E. Transplants of sheep blood. And, of course, acceptance of Jesus Christ as my savior. For the most part my parents resolutely favor modern medical science, but in those days even the legit experts come up abashedly empty-handed. For one thing, my symptoms keep defying expectations.


Specifically, I don't die.


***
[Coming next: my brother...]

Medical Progress Rolls On...

A short-ish blog this time … because I've been continuing to think through things already posted, and don't have much to add.

First, I'm grateful for all those who've commented intelligently (here and on Facebook) about my entry on the role of medical research. I'm trying to refocus my comments into a piece for NPR. I'll keep you posted on how that progresses.

Second, this past week I was struck by some new material from the Muscular Dystrophy Association about spinal muscular atrophy. I may well be stupid on medical and scientific issues, but it seems to me that the more we learn about the diagnosis the less we really know.

What do I mean by that outrageous assertion? First, one genetic mutation was discovered that seems to be the culprit behind four different types of SMA. I believe I was Type 1 originally, once upon a time--the infantile and progressive version also known as Werdnig-Hoffmann Disease--until I outlived that prognosis and, thus, instantly became Type 2, which is early onset but with a somewhat gentler progression. Types 3 and 4 start showing symptoms later in life, as far as my understanding goes. (But I'm not a medical professional, so please don't take my word for it.)

Then, more research showed another genetic mutation that causes SMA--a different type of SMA (or should I say another different type). As I understand it, this one happens in adulthood, too. There may even be others, but that's where I get lost.

Even within this mishmash, I believe there are exceptions ... or sub-types. In my case, I showed symptoms of muscle weakness as early as six months old. I was a "floppy baby." But the progression of my atrophy slowed considerably when I was about six years old. The word my doctors used then was "plateaued," but I'm not sure neurologists still use that term. I'll have to ask.

Anyway, I assumed that meant I had gotten as weak as I would and the active part of the "disease" was done. It had done its damage and hightailed it. I was wrong, as I learned when I was in college and shortly thereafter. Things can still go weak--and not at a steady, gradual pace, it seems to me. It's something more random.

Which doesn't matter, except it makes it hard to plan for.

New evidence--more anecdotal than from clinical research--shows that when people with SMA do live to an advanced age they can suddenly have a relapse, or let's say a resurgence or flareup. Basically, whatever muscles are left wear out. They age prematurely. Which to me sounds very much like postpolio syndrome. There was an article about postpolio syndrome in the past week. I don't think much has been done about post-SMA syndrome, if that's even an appropriate way to call it.

So even I, at 47, am not necessarily out of the woods yet! (Cue dramatic music.)

The point, once again, is not to define us (or ourselves) by our diagnoses.

As I've said before, I understand parents who are desperate for medical advice and treatments for their kids. I didn't used to. In fact, I used to resent it, the efforts my parents had made to "cure" me. But age and perhaps parenthood has given me a kind of wisdom. Or empathy, at least. I mean, I wouldn't want a parent who didn't do all he or she could for his/her kid's health and safety.

Yet to me, the better mission toward improving the lives of people with disabilities involves improving the societal stuff--fairness, openness, tolerance, inclusion, access and so forth. Those goals are more easily and quickly met, for one thing. For another, the pay off goes to all people with all types of disabilities--the old and the young, the dying and the living.

There was also new evidence published this week that some people who are said to be in a persistent vegetative state are actually more conscious--or at least do have more brain activity--than was previously thought. Many of us have suspected this. It's consistent with what I've heard from people I know who have come out of so-called vegetative states.

The connection here is that this shows yet again the limits of medical knowledge. Doctors are people too, and as such they can be wrong. There is often greater potential in the person than the medical establishment--if that's not too abstract and generalized a term--might expect.

Hey! This turned out to be longer than I expected!

If you like what you're reading here at all, I'm wondering if it'd help to ask you all to write NPR (or write NPR via this form) and say you want to hear more from Ben! (Sorry for the shameless self-promotion. But hey, we're all in this together, right? Hope so.)

Wherever you are, enjoy the snow, the rain, the Super Bowl, and whatever else is happening this weekend! And thanks for stopping by.

Thank you for the kind words (& keep 'em coming)!

Hooray! To start the New Year off with a bang, my NPR piece was broadcast on Monday morning, January 4, 2010. Judging by the flood of kind e-mail I've received about it, it must have come off all right. I'm gratified and intimidatingly humbled about reaching so many people. Thank you all for listening and writing!

The actual transcript--slightly different from the one on the NPR.org/opinion site--is linked to my professional Web address at www.BenMattlin.com

For anyone who cares, here's the original long version of the Commentary--the one I submitted, before my editor made cuts to save precious broadcast minutes. Read on, keep listening, send links to friends and colleagues, and know that I'm always delighted to hear from you.

A GOOD ENOUGH YEAR

For me, the new year is as much about looking back as looking ahead. At least this time it is.

I turned 47 this past year. That in itself is miraculous. I was born with a neurological nuisance called spinal muscular atrophy. Nobody knew that at first. It can remain invisible for many years. Then it gradually, relentlessly weakens muscles.

In my case the weakening began at about six months. My mother noticed I wasn't developing as my older brother had. I didn't sit myself up, or stay up when put into a sitting position.

We now know that about half of the babies who manifest symptoms of S.M.A. die before the age of two. Their hearts and lungs become too weak to go on.

I was one of the lucky ones.

I've used a wheelchair my whole life and no longer have the strength to hold a pencil. Am I still one of the lucky ones?

I believe I am. Most days I feel lucky. Always have. So why do so many people feel sorry for me?

They don't know me, of course. They don't know that I was lucky enough to grow up in a good family, to graduate from Harvard, to get my writing published, even to marry and father two terrific little girls. I consider myself lucky for a lot of reasons.

Still, people who think they know me from what they see on the outside have said to me, "If I were like you, I'd kill myself."

This is supposed to be a compliment, I think. They mean to commend my perseverance, my pluckiness. So how come I want to say back, "No you wouldn't"?

(Or "If I were like YOU I'd want to kill myself, too!")

Yes, there are some people in terrible circumstances, with painful illnesses, who do want to die. But there are also many, many people living in conditions I don't envy--living in famine, in war-torn countries, or in abject poverty in this country--who retain a stubborn sense of hope and struggle on. People whose lives I wouldn't trade for my own.

It happens every day. Nothing all that extraordinary.

Don't get me wrong. I don't see myself as a kind of modern-day Tiny Tim, pointing out the good in people, cheering everybody up. No thank you. I reject holding myself up as an inspiration, an example of the triumph of the human spirit.

Anybody who really knows me knows that. At home I grouse and kvetch all the time. Why not? It runs in the family. Plus, life is rough. Especially for me, at times.

Like two years ago. 2008. I had to spend most of that year in a hospital bed. A surprise gastroenterological infection required emergency surgery. Then something went wrong under the knife. Myriad dangerous complications ensued. I nearly died.

But here I am to tell the tale. So yes, I do feel lucky. The year just past wasn't anything special. The usual assortment of good and bad. But it was blessedly drama-free, and after its predecessor that was enough to make it a good year.

Sure, I hope for better things ahead. I hope for continued good health for my family and myself. For our country and our world. I hope in the new year to do better than in the year just gone by. To finally get that book contract. To really master Facebook and Twitter. And to do more of these commentaries for NPR.

But even if most of that doesn't work out, I'd still say I'm lucky. Because sometimes just normal life is good enough. And for me, this life--life in a wheelchair--is normal. And that's good enough, too.

###