The Beautiful Lie

I tell myself that serenity is not determined by how much I see.  I tell myself to forge ahead, keep the faith, shine a light.  I tell myself that, even if my eyesight doesn’t improve, my patience and tolerance will, my acceptance will. I tell myself this beautiful lie, this lie that things get easier.  Right here, right now, my bitter truth about blindness is that things are getting harder.

I write what I see and I write what I feel.  I’ve written funny stories about planting pansies upside down and serious stories about finding acceptance.  I’ve written honest stories born from despair and rejected by publishers because they failed to reflect the triumph of the spirit in the face of a disability.  Yet I honor these last for being authentic and for their power to connect with people who struggle.  Not every song in the concert can be “The Wheels on the Bus.”  For every “Hallelujah Chorus” there is a “Requiem,” just as, in life, birth and death are necessary and inevitable.

Back in my formative years, I assumed my training as a social worker would steer me toward the fast lane through my personal stages of grief.  I would race to the finish line of acceptance, with denial and anger only a blemish in my rear view mirror.  Silly me.  At this stage, I accept only that recovery from loss is a process. Anger is a natural and necessary phase of that process of victims becoming survivors. To deny or suppress that anger is to reject reality and derail what must and will occur.

This is the dark side of blindness.  It will pass.  I’ll again see the humor, even when the joke’s on me.  I’ll value the irony of unintended outcomes.  I’ll accept that grief is not a linear process but one that doubles back on me.  I’ll get out of myself and gain perspective. But, for now, it’s all I see.  And I’m tired of its tyranny.


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Invisible Ink

Every other Monday for five years, rain or shine, I posted a Jalapenos story.  I wrote comedies about dogs and tragedies about people.  High or low, I wrote—136 stories in all.  Then, at holiday season last year, life overwhelmed our home.  My wife’s cancer returned after a decade’s remission and we spent Christmas frightened and vulnerable.  This summer, my wife’s mother died and she found that becoming an orphan, at any stage in life, brings desolation. My cataract surgery, from which any improvement would have been celebrated, failed to reveal any new and wondrous sights.  Indeed, with the insidious advance of RP, I see less now than then.

My writing has been one victim of the emotional onslaught.   It wasn’t the writer’s block where I took up the pen but nothing came of it.  Rather, I had no desire to pick up the pen at all.  I especially didn’t want to write about blindness or the triumph of the human spirit, for I felt not in the least triumphant.

I coped by regressing.  I stopped reading good books and started binging on the empty calories of sports and Netflix, which entertained but did not nourish.  Stress breeds odd behaviors—I quit winding the clocks and gluing that little thing that’s always falling off that bigger thing.  I quit untying the knots in my shoelaces.  “Does it matter?” became my burning existential question.

I needed a solution but faced the dilemma: Do I think my way into better acts or act my way into better thoughts? With minimal exertion, I picked up a good book and found food for thought. I turned that fuel into my own words and, in doing so, found a therapy that works: write through it.  Writing turns out to be my relief, my release from what’s pent up.  Maybe it’s my best, maybe it’s my only way to get “through” this—one word at a time.

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The Scientific Method Applied to a Dog

I set out to test my theory that wherever in the backyard Randy peed, the grass died.  For my laboratory, I measured a five-foot square, enclosed it with treated four by fours and filled it with bark.  I based my model on the former dog relief area at work, a concrete and gravel box which, abruptly one weekend, was replaced by a decorative fountain.  “I wish I’d gotten my hands on that gravel,” I told my wife.  “Randy really took to it.  It had the scent.  But I bet bark will work for us.”

“I’ll call Animal Planet,” my wife replied.

Throughout the dog days of summer, I steered Randy to his pee pad and urged him to embrace toilet training. He climbed onto the bark and sniffed every square inch. I told him to pee, believing he understood English and was eager to please.  He sat and stared at me.  I felt our connection.  But Randy did not perform.  As I led him from the pee pad, he squatted and peed on the lawn.  I swear I heard the grass scream.

I examined my experimental variables.  “He’s not making the connection between the gravel and the bark,” I told my wife.  “Can you spare an old pie tin so I can collect some pee and sprinkle it on the bark?  That way, he’ll catch on.”  But this additional ingredient, too, failed to produce results.  I increased the probability factor by lobbing morsels from his copious backyard #2 deposits onto the pee pad.  Following protocol, Randy climbed onto the bark, sat in its only unblemished corner and stared at me.

Summer school has ended and, with it, my experiment.  These days, I water our new sod backyard and walk Randy around the block to pee.  The bark is spread among vegetable plants that produce manly zucchini and voluptuous tomatoes.  “I wish you could see the bountiful fruits of your experiment, Honey,” says my wife.  “Every zucchini and every tomato has Randy’s smiling face on it.  Animal Planet will be filming here next week.”

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I Don’t Think of You as Blind

When I define who I am, blindness is pretty far down the list.  First come husband, son, brother, writer, reader, music lover and social worker. In these roles, I try to be loving and kind, thoughtful and thorough, patient and tolerant.

But among significant life events, losing my eyesight has had the most profound impact. I lost, then, after retraining, regained my career.   I haven’t driven a car in twenty-five years. I live in a large city and depend on public transit.  I am less adventuresome, preferring familiar environs.  I feel the loss of visual things which used to give me pleasure, like taking photos and watching ball games.

At times, blindness becomes my most obvious and dramatic characteristic.  If I try without success to find someone to read me a handwritten letter or I begin to cross Ashland Avenue against the light, blindness becomes vexing or downright dangerous.  I can proceed no further nor reach safety until I find a workaround.  But even as blindness inserts obstacles, I identify and internalize how blindness has enhanced my patience, ingenuity and problem-solving.

My wife has had two episodes with cancer.  Yet I do not think of her primarily as a cancer victim or a cancer survivor as defined by a pink T-shirt manifesto.  Cancer is part of her just as curly hair and a soothing voice.  Blindness is part of me just as male-pattern baldness and a singing voice tending toward flats.  Cancer and blindness are but two brush strokes in our portrait; they are not our portrait.  They are one frame of reference through which we think, feel and make decisions.  Where a stranger says, “Funny, you don’t look blind,” a friend says, “I don’t think of you as blind.”  The closer we come, the more we see, in ourselves and in one another.

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Elvis Costello Meets St. Francis

My wife says I’m fixated at adolescence; I tell her that keeps me young.  Back in the Sixties, when my chronology matched my maturity, I sang “Don’t Let Me Be Misunderstood,” a Top 40 hit by The Animals.  “I’m just a soul whose intentions are good/Oh, Lord, please don’t let me be misunderstood.”  And no one was misunderstood like we adolescents.

In 1986, Elvis Costello covered the song and a new generation of misunderstoods took up the refrain.  I was thirty-six and, stuck at adolescence, echoed the chorus.  Later that year, RP kicked in and I began losing my eyesight.  As time and eyesight passed, I learned that being misunderstood applied not just to adolescents.  “You have no idea what it’s like!”  I cried to those who failed to understand me and my blindness.

Today, an adolescent on Social Security, I sing a different verse.  I try to practice the St. Francis Prayer and “understand rather than be understood.”  This is a radical shift—to get out of myself and empathize with another’s experience.  I see how deeply I’ve invested in being the victim while reaping huge payoffs in self-pity and martyrdom.  I see how myopic my vision has become, not from RP but from self-centeredness.

Redirecting energy from passive to active does not come instinctively for me, Me, ME.  So I’m starting with becoming more aware how my blindness creates confusion in others who do not, cannot, share my experience.  As I ask for tolerance and acceptance, I must tolerate and accept those with different struggles, even those whose ignorance or judgment have offended me, for I understand the fear of what or who is different.  Doing this, I help others understand.  In turn, I feel understood.

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Funny, You Don’t Look Blind


“What’s so funny,” I ask Adam, the I. T. guru, as he strides into my work cubicle. Our guide dogs exchange greetings: Hello.  Ola.  “Just this,” says Adam.  “I’m standing on the corner, waiting for the light to change, when this guy tells me he’s been watching me walk up the block and, funny, I don’t look blind.”

“And neither does your dog, right?” says I.

“Now, that’s funny,” says Adam.

“Did you take it as a compliment?” I ask.  “Or an accusation that you’re faking it?  You know, to get sympathy and reduced bus fare.”

Adam chuckles.  “All I can figure is that I don’t fit his stereotype of what a blind person looks like.  He said that I walked confidently—head up, eyes forward. Hell, I know how to get around.  I’ve been blind since I was seven.”

He must figure blind people flail around like Patty Duke in The Miracle Worker,” I say.

“Or drive a Maserati like Al Pacino in Scent of a Woman.”

“Right,” I say.  “The extremes—helpless or superhero.”

“I’m not often speechless—just ask my wife,” says Adam.  “But what am I supposed to say to this guy?  “Thank you?”

“It’s mighty hard, but God knows I try?”

“Give me a minute and I’ll walk into a door?”

“What does a blind person look like?”

“That’s a stupid thing to say?”

“All valid responses,” I say.

“Anyway,” says Adam, “I thought I’d tell you so maybe you’d write some kind of story about it.  Or figure some kind of social work angle to explain it.  Me, I’m going back to my I T stuff.  I can understand that.  It’s people that confuse me.”

He stands and I stand and we perform the awkward choreography of blind men shaking hands.

“Now, that’s funny,” Adam says as we chuckle, clasp hands and part.

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Food Fight

I work in the 5500 block of Lincoln Avenue in Chicago.  During seasons when snow and ice recede, I stroll to and from work with my Seeing Eye dog, Randy.

In the 5400 block of Lincoln Avenue is a bakery whose aroma excites Randy and me equally.  This afternoon, as we pass, Randy dips his head and, I assume, scarfs a blueberry muffin, jelly donut or chocolate éclair.  I stop.  Randy stops.  I pry his jaws apart.  He offers no resistance.  I insert two fingers into his mouth.  He complies.  I remove a huge dough ball.  He sheds tears, I’m sure of it.  I say to Randy, “No!” and, pivoting like a shortstop, I fling the sodden wad toward the street.

That’s when I glimpse the hulking mass of the SUV parked at the curb.  I hide behind Randy, frozen by fear.  Did I score a direct hit?  I hadn’t heard a telltale splat or a shrieking driver.  But the SUV is so huge, no way I missed it.  Where did that dough ball go?  What if the window is open?  Oh, Lord, what if the window is open?  Is that dough ball plastered against the inside of the windshield?  Dripping down the leather interior?  Keeping Randy between me and the SUV, I edge across the parkway.  The SUV whoops and growls.  I jump back onto the sidewalk.  What if both front windows are open and the dough ball sailed all the way through?  I sure can’t tell where it ended up and the SUV won’t let me get near it.  Only Randy can find the dough ball, and that’s how the whole mess got started in the first place.

In the 5200 block of Lincoln Avenue stands a police station.  Randy and I slink past, expecting sirens and footfalls and nightsticks.  The interrogation room.  An extracted confession.  Malicious mischief on my hitherto clean rap sheet.  I’ll take my punishment.  I just hope they go easy on Randy.

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