Hypothetically Speaking

What if I pose a hypothetical question—the type attorneys are counseled not to ask and politicians not to answer?  The kind anyone going blind and those they love are cautioned not to pose?  What if I ask this hypothetical question—what if I could see again?

I’d like to see again.  I’d also like everyone in Colorado to send me ten bucks—but that won’t happen either.  Pondering this fat-chance prospect is not my escape into magical thinking.  Rather, it’s a referendum on the quality of life I’ve constructed given forty years with RP.

But what if there’s a miracle?  What of the patience, tolerance and resourcefulness I’ve attained as a blind person?  Well, how about patient, tolerant, resourceful and…sighted!  If it takes more character to handle good fortune than bad, I’d like to show how much character I could muster.

Born-again sighted, would I be Overwhelmed by TMI?  No more, I suspect, than my current state of confusion.  Blindness brings, not a paucity of stimuli, but too much info that makes no sense.  While street corner encounters with Harleys and hot-rods now make my head spin, I’d like a shot at creating order out of chaos with the benefit of sight.

Why dream the impossible dream?  I hear the wise say life is 10% what happens and 90% what I do about it.  I am, if not happy with blindness, at least useful and, more times than not, comfortable in my own skin.  Does wanting to see again mean I’m giving up the fight?  What fight?  Blindness is part of me and fighting it is fighting me.  Acceptance is the key.  I accept my role as a blind man; it’s blindness that sticks in my craw.

Lola tells me how green are the foothills, how snow-capped the Front Range peaks, how the azure sky holds cotton clouds.  She asks if she should describe what she sees or if it hurts too much to hear of beauty I no longer see.  I tell Lola to tell me everything, tell me of the beauty around us.

I tell Lola how, sharp-eyed and twenty-one, I helped build a log cabin in those foothills.  I tell Lola how, around the campfire, I saw a million stars in the night sky.  I tell Lola how I cherish this vision.  I gaze toward the foothills, the Front Range peaks.  And I gaze at Lola, whose sweet face I will never see.  And I wonder how to tell Lola about this heartache.

Playlist:

“Persuasion” by Richard Thompson (with Teddy Thompson), from Action Packed (The Capitol Years) (2001)

“Change the World” by Winona, from Revelations (1996) and by Eric Clapton, from Phenomenon (soundtrack, 1996)

“Smiling Phases” by Traffic, from Mr. Fantasy (1968)

“Green” by Edie Brickell, from Picture Perfect Morning (1994)

“(I Can’t Get No) Satisfaction” by The Rolling Stones, from Out of Our Heads (1965)

“Ain’t That Pretty at All” by Warren Zevon, from The Envoy (1982)

“Unsatisfied” by The Replacements, from Let It Be (1984)

“Alright” by Electric Light Orchestra, from Zoom (2001)

“I Can See Clearly Now” by Johnny Nash (1972)

“Suddenly I See” by KT Tunstall, from Eye to the Telescope (2004)

“Young and Innocent Days” by The Kinks, from Arthur, or the Decline and Fall of the British Empire (1969)

“Persuasion” by Tim Finn, from Before and After (1993)

Put Me In, Coach

“If I were going to storm a pillbox, going to sheer, utter, certain human death, and the Colonel said, ‘Shepherd, pick six guys,’ I’d pick six White Sox fans, because they have known death every day of their lives and, for them, it holds no terror.”

—Jean Shepherd, humorist and lifelong White Sox fan

I was born in springtime.  For my ninth birthday, I asked for, and received, a baseball uniform.  That summer, my Chicago White Sox made the World Series but lost to the Dodgers in six games.  I still have the incomplete set of baseball cards of my incomplete heroes—my ’59 White Sox.  And I retain the lesson I learned at age nine: you sometimes get some of what you want but you don’t always get it all.

I spent the summer of ’59 playing baseball and listening to White Sox games on my transistor radio.  I practiced fielding grounders by throwing a rubber ball against the stone steps of 2016 State Street.  My soundtrack was the mellow tones of Bob Elson calling play-by-play and the hum of traffic on State Street, the name locals used for U.S. Highway 20.  While Elson, known as “Professor,” counseled that “errors, like runs and hits, are part of the game,” by World Series time, precious few grounders got past me into U.S. 20.

Though I outgrew my ’59 baseball uniform, I didn’t outgrow baseball.  In junior high, I roamed left field for the Marsh Hawks.  In college, my intramural team was the Delta Chi Doobie Brothers.  Working for Child Protective Services, our coed team was the Catalina Cardinals.  In the Arizona beer league, I pitched for the Bandersnatch Pub Elbow Benders.  From State Street to Arizona league, my playing career spanned nearly three decades.

1986 was a lousy year.  The White Sox went 72-90 and I was diagnosed with RP.  Losing my eyesight put me in a different league.  Gone were hardball and softball.  When invited to join a Blind Beep Ball team, I replied, “Thanks, but I spend half my waking hours bent double, feeling for things I can’t see.  What makes you think I want to make a game out of that?”

Lest I come off as too good for Beep Baseball, let me remind you that White Sox fans humbly settle for less.  They consider a 6-5 loss a victory.  The Sox even have a scandal named after them.  Being born a White Sox fan is like serving a life sentence.  With little chance for parole, I keep showing up year after year—ever hopeful.

April 16 is, for most, the end of Tax season.  For me, it’s baseball season.  And it’s my birthday.  This year, I’m not asking for a baseball uniform, just donning my White Sox cap and tuning into hear the Sox play the Royals.  Radio gives me what I need to see the game.  The White Sox provide the drama—and inadvertent comedy.

Some people say baseball is boring.  I say baseball is life on the edge.  Some people say baseball is a waste of time.  I say it’s the ultimate here and now.  It’s Greek tragedy and Keystone Cops slapstick.  But, most of all, baseball makes me feel like a kid again.

Playlist:

“Past Time” by The Baseball Project, from Volume 1-Frozen Ropes and Dying Quails (2008)

“Centerfield” by John Fogerty, from Centerfield (1985)

“Home Run King” by Gene Clark, from Two Sides to Every Story (1977)

“Twilight of My Career” by The Baseball Project, from Volume 2 – High and Inside (2011)

“Say It Ain’t So, Joe” by Gary Brooker, from No More Fear of Flying (1979)

“You Can’t Always Get What You Want” by The Rolling Stones, from Let It Bleed (1970)

“Twilight” by U2, from Boy (1980)

“The Boys of Summer” by Don Henley, from Building the Perfect Beast (1984)

“You Make Me Feel So Young” by Frank Sinatra (1956, remastered 1998)

“Happy Birthday to Me” by Cracker, from Cracker (1992)

Kinder and Gentler

“The disability of blindness is not blindness but society’s refusal to give them the tools and respect to function.”

-Moses Street, “From Victim to victor” episode of The Blind Chick podcast (January, 2024)

The symptoms of dwindling eyesight with escalating anxiety ended my career as hospital social worker.  My deepest fear was flattening some post-op patient who’d shuffled into my blind spots.  Even with white cane training and full disclosure of my RP, six years in critical care with critically diminishing eyesight rendered me fearful and frazzled.

My colleagues began treating me with indulgence reserved for terminal patients.  Doctors who had mistaken my cane for a newfangled golf club adopted deferential silence.  Jovial workplace banter dissolved.  I had become different and, as such, outside.  I felt deficient eyesight made me a deficient person.  That notion was false then and now.  But, then and there, it rang true.

I was 48 years old and the Americans with Disabilities Act was eight years old.  I suggested to HR a transfer behind the front lines but their silence suggested a clean break would save everyone the headache of a lawsuit arising from a no-fault collision.  In hindsight, I suppose I should have pushed a test case for accommodation through the ADA but my naivete, coupled with my feeling that I had caused the problem, derailed that course.

I resigned from the hospital assured I would not go hungry.  I was a social worker—I knew about Social Security Disability, Medicare and Long-Term Disability.  I enrolled in Blind School with the social goal of attaining mastery and the vocational goal of becoming a writer or disc jockey.  “But there are blind social workers out there,” said the Voc Rehab counselor.  “Been there…” was my reply.

That the Americans with Disabilities Act was on the books in 1998 guaranteed nothing.  For laws to benefit the disabled, they need not only be the law of the land, they need to be respected and enforced.  During his presidency, Ronald Reagan chose not to enforce housing, voting and civil rights laws enacted twenty years prior, rendering them impotent.  Despite widespread popularity, the Americans with Disabilities Act failed to become law during Reagan’s tenure.

The ADA was enacted in 1990, under Reagan’s vice-president-turned-successor, George H. W. Bush, who famously called for a “kinder, gentler” America.  That hasn’t happened.  Instead, lawmakers now aim to shoot holes in the safety net that cushioned my fall.  Former president Trump demeans Americans with disabilities.  While the style has changed from subtlety to ridicule, the tone is set by those at the top.

Rather than assume the mantle of victim or revolutionary, I accept responsibility for internalizing limitations and shame of blindness and failing to advocate for my rights.  But even heroic figures have fallen victim to that stigma of disability.  Franklin D. Roosevelt, our longest-serving president and polio survivor, was not photographed in his wheelchair lest he be judged as weak.  Had I known then what I know now, had I accepted then what I accept now, I would have acted differently.  That is my lesson from history.  Now is the time to ensure that history never repeats.

Playlist

“Put a Little Love in Your Heart” by Jackie DeShannon (1969)

“Know Your Rights” by The Clash, from Combat Rock (1982)

“Business as Usual” by Eagles, from Long Road out of Eden (2007)

“The Factory” by Warren Zevon, from Sentimental Hygiene (1987)

“Career Opportunities” by The Clash, from Sandanista! (1980)

“Workingman’s Café” by Ray Davies, from Workingman’s Café (U.K.-2007, U. S-2008)

“Can’t Keep a Good Man Down” by Randy Newman, from Randy Newman’s Faust (1995)

“If I Had a Hammer” by Peter, Paul and Mary (1962)

“Volunteers” by Jefferson Airplane, from Volunteers (1969)

“Not Enough” by Johnny Hickman, from Tilting (2012)

“Clampdown” by The Clash, from London Calling (1979)

The Other Side

Even as I lust for life, I wonder about the other side.  I’m curious in the metaphysical sense of souls and energy.  Curious in the physical sense that, if there’s really a bright light, will I see it?  Curious in the practical sense whether I should pack my white cane.

Beyond personal curiosity, I possess a professional interest in life and death.  I was a hospital social worker.  I covered the ICU—destination of stroke victims, inadvertent overdosers and those who had intended to end their lives.

I met the Irish lass who gulped a handful of Tylenol after being jilted by her laddie.  “He promised me the moon and stars,” she sighed, and my heart broke alongside hers.  I met the stroke victim whose paralysis brought inconsolable despair.  On the eve of discharge to a nursing home, she died.  I remain convinced she chose death rather than life with unbearable loss.

My experience with the precariously living was infused with my own drama.  In the midst of my tenure, I was pronounced legally blind, that milestone along the road of sight loss caused by RP.  I contributed to that drama by resisting acceptance, stuck in that hellish limbo of trying to pass for sighted.

One morning, I met Margaret.  She was propped up in ICU bed #4.  She was 93 years old and had tried to kill herself with pills.  “You’re probably wondering why I did what I did,” Margaret said to me.  “I will tell you.  I have macular degeneration.  I will go blind.  I do not wish to die a blind woman.”

Margaret’s words left me speechless.  I excused myself from her bedside.  I sought my quiet, private place, next to the candy machine outside the ICU.  I chewed a Milky Way and pondered life, death and blindness.  When I regained equilibrium, I returned to Margaret.

“You’re probably wondering why I did that,” I said.  I told Margaret I wished to amend my professional role and speak person to person.  I told her about my RP.  I told her I was struggling to find meaning in loss.  I told her that what I had thought would bring the end of the world hadn’t ended up that way.  I told her I hoped parts of my story would make sense to her and I realized she would be the judge of that.

Then Margaret told me about her life.  She told me of her loves and her accomplishments.  She said she considered the onset of macular degeneration a sign for her to step aside, to leave life to the strong and able-bodied.  She said she’d wanted to go out before age and time robbed her of her faculties.  She said taking pills might have been “a bit impulsive” and that, perhaps, her survival was a sign for her to stick around for a while.

During her five-day hospital stay, Margaret and I shared stories past, present and future.  We constructed a safety net of people and resources.  Instead of returning to live alone, she accepted the invitation from a loving daughter to live with family.  I hope she was happy.  I don’t know for sure.  I do know that she did not revisit the ICU during the remainder of my tenure.

In my time in ICU, among those who saw both sides, I learned about humility, courage and insight.  I learned how people who act impulsively possess wisdom to find balance.  I learned how self-determination and quality of life measure one’s will to live.

In my time in ICU, I was lucky, not only to stand beside the bed rather than lie in it, but to learn that, by helping others, I helped myself.  I was lucky to learn what I learned in that classroom—about other peoples’ lives and about my own.

Soundtrack:

Side One

“My Sweet Lord” by George Harrison, from All Things Must Pass (1970)

“Where Will I Be?” By Emmylou Harris, from Wrecking Ball (1995)

“Sweet Old World” by Lucinda Williams, from Sweet Old World (1992)

“Goodbye” by Patty Griffin, from Flaming Red (1998)

“If We Never Meet Again” by Merle Haggard and Band of Strangers with The Carter Family (1979)

“In the Ether” by The Who, from Endless Wire (2006)

“One of Us” by Joan Osborn, from Relish (1995)

“Good with God” by The Old 97s, from Graveyard Whistling (2017)

“Talking Old Soldiers” by Elton John, from Tumbleweed Connection (1970)

“New Lamps for Old” by Procol Harum, from Exotic Birds and Fruit (1974)

“All My Tears (Be Washed Away)” by Emmylou Harris, from Wrecking Ball (1995), Julie Miller (1993) , Mark Bishop (2021)

“Hallelujah” by Jeff Buckley, from Grace (1994), Leonard Cohen, kd lang

Side Two

“Spirits in the Material World” by Megon McDonough and by The Police, from Ghost in the Machine (1981)

“Holding On” by Gary Brooker, from Within Our House (live, 1996)

“Strange Boat” by The Waterboys, from Fisherman’s Blues (1988)

“Within You Without You” by The Beatles, from Sgt. Pepper’s Lonely Hearts Club Band (1967)

“Stone” by Faces, from First Step (1970)

“In Held Twas In I: including (a) Glimpses of Nirvana, (b) Twas Teatime at the Circus, (c) In the Autumn of My Madness, (d) Look to Your Soul, (e) Grande Finale” by Procol Harum, from Shine on Brightly (studio, 1968) and from Live in Concert with the Edmonton Symphony Orchestra (1972)

T&A for Dummies

“What were we talking about?” asks Lola.

“Transactional Analysis.”

“What’s Transactional Analysis?” asks Lola.

“The title of the blog before this one.”

“Oh, I knew I’d heard it somewhere before,” says Lola.  “But what is it, really?”

“Something they taught in social work school,” I tell Lola.  “You and I are conversing—we’re transacting.  We’re also interpreting—we’re analyzing.  We’ve found that you and I see things alike even though I can’t see and you can.  My eyesight is missing but I fill in the blanks.  Like, in a symphony, silence is as important as music.  Beethoven said that.”

“Beethoven?  Beethoven was so deaf he thought he was a painter.  George Carlin said that.”

“I wonder,” says I, “if Beethoven was deaf, how did he know that silence spoke as loudly as music?”

“He saw silences on the sheet music,” says Lola.

“How weird is it that Beethoven could see silences but I can’t and I can hear silences but Beethoven couldn’t?”

“Getting back to George Carlin,” says Lola, “do you suppose Beethoven became a composer because he was a frustrated painter?”

“Getting back to Transactional Analysis,” says I, “do you suppose Beethoven composed Symphony #9 because people told him they really liked #5 and he couldn’t help being a people pleaser?”

“So, you’re saying that’s how to analyze Beethoven using T&A.” says Lola.

“Not exactly.  Transactional Analysis is T A,” says I.  “T&A is totally different.”

“T A…T&A…blah blah blah,” says Lola.  “In nursing school, they taught me T&A stands for tonsils and adenoids.”

“Yes, nurses say T&A means tonsils and adenoids,” says I.  “On Broadway, actors sing about T&A in A Chorus Line.”

Lola hums a few bars, then shouts, “Aha!  T&A!  Body parts on Broadway!  Now I get it—T&A has everything to do with George Carlin!  The T word is one of the seven you can’t say on TV.  The A word you can probably get away with nowadays.”

“On that note,” says I, “let’s call this blog ‘T&A for Dummies.’”

“And who’s the dummy?” asks Lola.

“It’s dummies.  Plural,” says I.

“Well, everybody finds their niche,” says Lola.  “Beethoven and George Carlin have theirs.  Now, we’ve found ours.”

Playlist:

“The Fifth” by David Garrett, from Rock Symphonies (2010)

“The Mayor of Simpleton” by XTC, from Oranges and Lemons (1989)

“The Book I Read” by Talking Heads, from Talking Heads ‘77

“Dance 10, Looks 3” by Pamela Blair, from A Chorus Line (Broadway Cast, 1975)

“Shiny Happy People” by REM, from Out of Time (1991)

“Tommy Gets His Tonsils Out” by The Replacements, from Let It Be (1984)

“Talking Loud and Saying Nothing” by James Brown (1972)

“Wise Up” by The Waitresses, from Wasn’t Tomorrow Wonderful? (1982)

“Lipstick Vogue” by Elvis Costello and The Attractions, from This Year’s Model (1978)

“9-9” by REM, from Murmur (1983)

“Roll Over Beethoven” by Chuck Berry (1956), by The Beatles (1964)

Transactional Analysis

Way back when I was in graduate school, way back when Gerald Ford was president, I studied a psychological counseling approach known as Transactional Analysis.  Whatever your recollection of Gerald Ford, here’s what I recall about Transactional Analysis.

Each time I slid a glass of beer across the bar on Wednesday nights at The Bandersnatch Pub, the customer slid fifty cents across the bar to me.  That was a transaction.  When that customer told me he was having girlfriend troubles and I told him I was too, that was a transaction.  When that customer cried in his beer and I figured he’d cried in his beer because of his girlfriend troubles, that was the analysis part.

Ten years after I graduated, ten years after my Transactional Analysis internship at The Bandersnatch Pub, I began losing my eyesight.  Losing my eyesight has reduced the information I receive as part of a transaction.  While “I statements” and “F words” come through loud and clear, I miss the nods and winks, the shuffles and struts.  Deprived for over three decades of those visual effects, how much of the Transactional Analysis continuum am I missing?

“You don’t miss much,” says my partner, Lola.  “You can read people, interactions, situations.  Yesterday, you described how the doctor entered the room, sat in his chair, scooted over to face us, leaned forward, placed his elbows on his knees and clasped his hands—before he even said a word.  How you knew that is beyond me.”

“What I knew was what I heard.  I just added the visuals.  That made a transaction.  The larger part was the analysis—putting that transaction into the context of the situation.  the doctor had serious news to impart.  He did so with kindness.  His bedside manner was gentle.  He treated us with respect.  All this became evident to me.”

“I was sitting next to you and could see his every move, his every expression.  You saw none of that yet the picture is identical for both of us.”

“This may sound weird but sometimes I think seeing is distracting.  We lose sight of the big picture amid the bright, shiny objects, amid the bling.”

“I’m beginning to see how vision has little to do with eyesight.”

“Absolutely!  This morning, when I knocked over my big mug of cocoa, I had a vision of dark chocolate spreading over our white tablecloth.  I couldn’t see it but I saw it.  Sometimes, I think I see quite clearly.”

“Like I said, you don’t miss much.”

“Not much?  I sure missed that morning mug of cocoa.”

Playlist:

“Drinkin’ My Baby (Off My Mind)” by Eddie Rabbitt, from Rocky Mountain Music (1976)

“Questions” by Buffalo Springfield, from Last Time Around (1968)

“Hello, Goodbye” by The Beatles (1967)

“Communication Breakdown” by Led Zeppelin, from Led Zeppelin II (1969)

“Do I Have to Come Right out and Say It?” by Buffalo Springfield, from Buffalo Springfield Again (1967)

“Things I Should Have Said” by The Grass Roots (1968)

“I Called You Up” by Catholic Girls, from Catholic Girls (1982)

“Return Post” by Bangles, from Different Light (1986)

“Communique” by Dire Straits, from Communique (1979)

“The Letter” by Joe Cocker, from Mad Dogs and Englishmen (1970)

“One for My Baby and One More for the Road” by Frank Sinatra (1947)

Blind by Proxy

Adjusting with vision loss takes teamwork.  And my teammate is Lola.  Lola stands five foot four, has curly red hair and a gap-tooth grin.  She feels deeply and laughs easily.  She approaches challenges with enthusiasm.  She wants to learn everything about everything.  She was Professor of Nursing—voted Teacher of the Year.  She was nurse anesthetist—putting people to sleep and, when the danger passed, bringing them back to a better life.

Lola has laughing blue eyes and wears reading glasses which she misplaces daily.  I help Lola find her glasses, her phone and her car keys.  I have somber brown eyes and see shadows and light and little else.  Lola helps me find my vision, my voice and my place in her heart.

Lola embraces her role as foreign exchange student in Blindland.  She’s learned to close cupboard doors and open conversations.  She’s become a skilled sighted guide and door describer.  She helps me feel safe in strange places.  We negotiate overprotectiveness and self-reliance (which Lola calls stubbornness).  She asks before helping and lets me make mistakes and learn from those mistakes.  We discuss issues and share vulnerability.  The more we talk, the easier it gets.  The more we laugh, the more we feel we are the lucky ones.

I depend on Lola.  I depend without branding myself deficient.  Lola has the tool of sight and views us as equals.  My job is to keep us equal by keeping my current blind skills sharp and learning new ways to do old things.  That way, I keep my end of the bargain and avoid dependence becoming a dirty word.

Still, dependence implies imbalance.  And, while I trust Lola’s good will, I’ve begun to question the veracity of statements such as, “Looks like we’re out of potato chips” and, “Too bad they only served you four french fries.”  I realize the temptation to mess with the blind man is powerful.  When it prevails, I choose to retain unconditional confidence that the stakes are measured in small potatoes.

Dependence confers less power on one party.  While that party may choose to get mad and then get even, I take the gentler approach that two can play.  Soon, I’ll dim the lights (I think), play soft music, arrange the place settings and call Lola to table.  Then, as we sit down to our Valentine’s dinner, I’ll face my partner and paramour and say, “You won’t want to eat this pizza.  It will taste terrible.”  And we’ll feel love’s gravity and we’ll laugh with the lightness of kids at play.

Playlist:

“Dark Side of the Moon” by Chris Staples, from American Soft (2014)

“Rock of Your Love” by John Hiatt, from The Tiki Bar Is Open (2001)

“Count on Me” by BoDeans, from Blend (1996)

“Buddy Holly” by Weezer, from Weezer (Blue Album) (1994)

“This Is Us” by Mark Knopfler and Emmylou Harris, from All the Roadrunning (2006)

“That’s What My Man Is For” by Delaney and Bonnie and Friends, from On Tour with Eric Clapton (1970)

“Hero” by Family of the Year, from Loma Vista (2016)

“Strangers” by The Kinks, from Lola vs. Powerman and the Moneygoround (1970)

“Church” by Stephen Stills, from Stephen Stills (1970)

“Please Be Patient with Me” by Albertina Walker with Reverend James Cleveland (1979) and by Darlene Love, from The Concert of Love (2010)

When Worlds Collide

Life is complicated.  We need order and predictability.  We need comfort and safety.  We seek to meet our needs within our gang, our crowd, our peeps.  We grant credence and deference to people who look like us, act like us, think like us.

Life is complicated.  To people unlike us, we allow nothing more than we are us and they are them.  We lump them into categories: the homeless, the mentally ill, the MAGAs.  We replace curiosity with suspicion.  We fear what makes them different from people like us.

For the first half of my life, people like me were sighted, for the second half, blind.  I am expert at neither, experienced with both.  I’ve been given ample time to integrate the subtle and profound.  Looking at life from both sides has, I hope, taught me to view the other with understanding and tolerance.  For those not treading the blindness path, I offer this primer to learn quickly what has taken me decades.

It’s true that everybody’s vision loss is different.  It’s untrue that all blind people see nothing exactly the same.  And it’s true that everybody’s adjustment with vision loss is unique.  It’s untrue that all blind people will either change the world or amount to nothing.

Blind people act the same as sighted people for different reasons.  Blind people bump into things because they don’t see them.  Sighted people bump into things because they don’t pay attention.

Five false assumptions:

*Telling a blind person, “It’s over there” is helpful.

*The way to get through to a blind person is to talk really loud.

*You’ve got to explain things to a blind person like you’re talking to a four-year old.

*Telling a blind person, “Funny, you don’t look blind” is a compliment.

*Blind people are inspiring if they can tie their shoes and/or say a complete sentence.

Blind people and sighted people are equally adept with smart phones.  The difference is that sighted people stare at their phones all the time while blind people listen to their phones all the time.

Contrary to popular belief, not every blind person knows Braille.  Witness the restaurant server who first hands me a print menu and then, noticing my white cane, a Braille menu and then asks my companion what I want for lunch.  Conversely, all elevator operators know that every elevator panel is different and it’s a rare blind person who can find and press the right button before some sighted person on some other floor presses their own button and…away we go.

Orientation and mobility skills are vital for blind people but foreign to sighted people.  Hence, the belief that blind people carry white canes for sympathy or, in urban areas, as weapons.  Or, the best way to help a blind person cross the street is to grab their arm and pull them, while the next best way is to grab their cane and pull them—like elephants do.  And guide dogs are really guard dogs dressed up in a harness.

Lest I judge sighted folk ignorant and intolerant, I allow that we are not born knowing.  I hadn’t a clue about the blind world until I crossed its borders.  Blind people have the same common human needs as anyone else.  Dignity and respect are paramount.  To find the strength and humility to extend a hand across the line enriches us all.

Playlist:

“Opening Statement” by Hard Working Americans, from Rest in Chaos (2016)

“I’m Tired” by Savoy Brown, from A Step Further (1969)

“I’m Not Like Everybody Else” by The Kinks (single, 1966) and from To the Bone (live, 1994)

“I’m Different” by Randy Newman, from Trouble in Paradise (1983)

“I’m Not Talking” by Yardbirds, from For Your Love (1965) and Birdland (2003)

“Mister, You’re a Better Man than I” by Yardbirds, from Having a Rave Up (1965)

“Don’t Let Me Be Misunderstood” by Nina Simone (1964) and by The Animals (1965)

“Are You a Boy or Are You a Girl?” by The Barbarians (1965)

“Everyday People” by Sly and the Family Stone, from Stand! (1968)

“One World (Not Three)” by The Police, from Ghost in the Machine (1981)

“I Know Where I’ve Been” by Queen Latifah, from Hairspray (soundtrack, 2007) and by Darlene Love, from The Concert of Love (live, 2010)

“(What’s so funny ‘bout) Peace, Love and Understanding?” by Elvis Costello & The Attractions, from Armed Forces (1979)

Charity

I gave to others on Giving Tuesday.  Today, my greatest gift is to give myself a break.  A break from perfectionism and pressure.  A break from the guy judging my every move with clipboard and stopwatch.  A break from needing to prove something, anything about blindness.  Today, charity begins at home…with me.

Charity affirms it’s OK to say, “I’m lost” without feeling I’m failing to grasp deeper meaning in blindness.  Self-help gurus implore me to grow from struggle and find meaning in suffering.  But not everything needs to be meaningful, a constant test of will or skill or mettle…a test of faith.  Today, extending this blind man’s search for meaning is a fool’s errand.  Rather, accepting my grudging acceptance of blindness, living with my wry compromise, is my gift of charity.

Progressive vision loss is not progress, it’s regress.  It’s not adding, it’s subtracting.  At least, that’s the way it looks to me.  With each slip in eyesight, I need time to catch my breath.  Whatever I’ve learned about living with blindness has to be, not just revised, but remade and relearned.  Sisyphus climbs and falls and climbs again.

Charity allows me to integrate blindness into my identity.  I am many things: comic, tragic, playful, somber, genetically gifted and genetically flawed.  I am changeable and changing, learned and learning.  I am adjusting with blindness, not adjusting to blindness.  The difference in prepositions is more than semantics.  Blindness is within me, not out there lurking like the wolf at the door.

To some, charity implies rescuing a lost cause, imbuing meaning where there is none.  This is not the charity of which I speak, for I am neither hopeless nor purposeless.  No, the charity I ask of myself has nothing to do with money or guilt.  It has everything to do with patience and tolerance.  It has everything to do with kindness.

Some days, I fall short of acting the heroic figure who finds deeper meaning in life with blindness.  That I am not that wise is a necessary lesson in reality and humility, not evidence of inconsequence.  I need the reminder that I am everyman.  There’s always someone more heroic than I.  There’s always someone doing more with blindness and someone doing less.  I just need not to feel bad about feeling bad.  Today, charity begins at home.  I’ll show up and get through.  And that will be enough.

Playlist:

“Good Morning, Good Morning” by The Beatles, from Sgt. Pepper’s Lonely Hearts Club Band (1967)

 “Mmm Mmm Mmm Mmm” by Crash Test Dummies, from God Shuffled His Feet (1993)

“The Heart of the Matter” by Don Henley, from The  End of the Innocence (1989)

“Give Me Strength” by Eric Clapton, from 461 Ocean Boulevard (1974)

“Oil in My Lamp” by The Byrds, from Ballad of Easy Rider (1969)

“A Satisfied Mind” by Porter Waggoner (1956)

“Good Shepherd” by Jefferson Airplane, from volunteers (1969)

“Changes in Latitude, Changes in Attitude” by Jimmy Buffett (1977)

“Collideascope” by Dukes of Stratosphear, from Chips from the Chocolate Fireball (1987)

“You Set the Scene” by Love, from Forever Changes (1967)

Hope

“Optimism is the faith that leads to achievement.  Nothing can be done without hope and confidence.”
-Helen Keller

Dear Helen Keller,

Did you ever yell, “Oh, Shit,” when you spilled your soup?  Did you then castigate yourself for being clumsy and stupid?  Did you then blame whoever was so thoughtless to put your bowl where you were sure to knock it over?  Did you then tremble with fury over how unfair it all is?  Well, I do.

I’ve seen your rage.  I saw it in The Miracle Worker.  I could see back then.  You had animal rage, the fury of animal survival in your dark and silent world.  Your life was much worse than mine.  I hear just fine and I learn a lot that way.  Plus, I’m a lot older than you were in the movie.  I’ve got perspective.  I know that if I spill my soup I won’t go hungry.  There’s plenty more soup where that came from.  I just mop up the spill and open another can.  You didn’t know any of that.  No wonder you went nuts over food.  You were terrified you’d starve to death.

Still, I get angry when I lose control over my life.  I mutter and sputter as I clean up my mess.  I’d like to leave it at that.  But ego and perfectionism judge me harshly.  I turn situations into problems.  And the problem is not soup—the problem is me.

You spent your time in hell.  But you sure snapped out of it.  It took you a while and it was gradual, but you really made something of yourself.  All of this leaves me feeling guilt and shame and anger.  I feel guilty that I have not evolved to live life on life’s terms with the serenity you showed.  I feel shame that every other blind person seems to be adjusting better than I am.  And I feel angry because I have turned a physical condition into emotional inadequacy.  At least, that’s how I compare myself to you.

I admire you.  You are an inspiration.  You are St. Helen, our patron saint.  Now, the flip side.  I resent your perfection.  I envy your serenity.  I am jealous of your happiness.  Compared to you, I am wanting.  These are my defects of character.  These character defects breed resentment.  These resentments lead me to write this letter, because I shall not find peace amid resentments.

People call you a hero.  We love our heroes.  We put them on pedestals.  We put them in People magazine.  We hate our heroes.  We hate everything about them that we don’t possess.  We don’t need heroes.  We need good ideas.  We need good behavior to model.  Ideas and behavior are beyond reproach.  Heroes are human and fallible and fall out of fashion.

I have been called a hero.  I’m told I inspire.  Thing is, I don’t often feel inspired.  I do what I need to do in my own way and, when that way no longer works, I try a different approach.  I need a certain amount of success in life, a degree of mastery of challenges.  I’ve learned I can’t control a lot of what I used to.  Maybe you’re different in that you never knew anything to start with.  I mean, you started out blind and deaf.  I had both sight and hearing.  So, you gained while I lost—though that doesn’t sound like a very healthy way for me to look at things.

Maybe I’m giving you a bad rap.  Maybe what I resent is my own blindness.  Maybe all this has nothing to do with you.  You lived your life as you saw fit.  And you did a damn fine job.  Last night, I heard a quote from you.  It was in a TV commercial for hearing aids.  You said, “Seeing connects you with things; hearing connects you to people.”  I like that.  It makes me think how fortunate I am to have my hearing.  Then I say to myself, “Another wise saying from Helen Keller.  How profound.  How helpful.”  Helen, for every wise saying you uttered, was there a time you said, “Oh shit, Annie, what did I step in?”  Because that’s reality and I just need you to be real to me, not perfect.  I need you to be as real as I am, as imperfect as I am, in order to take you seriously.

This letter is my amend to you.  It’s not perfect but it’ll do for now.  I hope you hear from me again.  If you do, it means I am progressing.  I’m sorry I thought and said all those nasty things about you.  It was ignorance and false pride.  I know you have helped a lot of people.  I hope I let myself be one of them.

Respectfully,

Jeff Flodin 

Playlist:

“I’ve Forgotten What It Was in You (That Put the Need in Me)” by Maria McKee, from Live at the BBC (Manchester University, 1991)

“Am I the Only One (Who’s Ever Felt This Way?)” by Maria McKee, from Live at the BBC (Manchester University, 1991)

“Drinkin’ in My Sunday Dress” by Maria McKee, from Live at the BBC (Manchester University, 1991)

“I Can’t Make It Alone” by Maria McKee, from Live at the BBC (Cambridge Junction, 1993)

“Show Me Heaven” by Maria McKee, from Live at the BBC (Manchester University, 1991)

“My Lonely Sad Eyes” by Maria McKee, from Live at the BBC (Cambridge Junction, 1993)

“Why Wasn’t I More Grateful (When Life Was Sweet)” by Maria McKee, from Live at the BBC (Cambridge Junction, 1993)

“You Gotta Sin to Get Saved” by Maria McKee, from Live at the BBC (Cambridge Junction, 1993)

“You Are the Light” by Maria McKee, from Live at the BBC (Cambridge Junction, 1993)