When I was told I would go blind, I got angry.  At thirty-five, I was still operating under the delusion I had control over my life.  But that dose of fear and pain enraged me.  .

First, I got mad at my parents.  After all, it was the funky combination of their genes that produced RP in me.  They could see fine and so could my older brother and all my other relatives, so why was I the chosen one?

Next, I got mad at God.  I collected all my favorite visual stuff – my baseball glove, my golf clubs and my cameras, piled them on a picnic blanket and sold them at a yard sale.  “I’m not gonna wait for God to take my joy away!”

Then I got mad at the doctors who sugar-coated every year’s vision loss by telling me to take heart, that research was very promising.  They told me that, as a young man, my future held promise for a cure.

After that, I got mad at myself for not handling blindness better.  I was a social worker, by God, and I should be doing a better job with grief and loss, putting knowledge to the test, practicing what I preached.

Thirty years into blindness, I still get angry.  But it doesn’t permeate my life.  I’ve made my peace with those who were my targets.  Oh, sometimes, when I get so frustrated I could scream, I scream.  But I’m learning.  I’ve learned that pain and anger are a dead end. I’ve learned to pass from mad to sad.  Oh, I don’t like feeling sad, but I realize that sadness leads to healing.  Only by the gift of sadness do I gain acceptance and recovery.  It’s a simple lesson but sometimes the simple lessons take the longest to learn.

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HD Stands for “Help Dummies”

From a friend, we inherited a fifty-two inch flat screen TV.  It brings football into our living room.  My wife is dazzled by the High Definition picture.  She raises her hands every time Tom Brady throws a pass in her direction.  I’m impressed with the Polk Audio sound bar.  I feel like I’m at the fifty yard line even though I can’t see a punt, pass or kick.

Besides football, we can stream Netflix, Hulu, Amazon, podcasts and movies on demand.  We can record shows to watch later and watch shows broadcast earlier.  We can do all this but we don’t.  We find it way too complicated.  Our cable remote has 49 buttons but no bump on number five.  Our TV remote, which the cable guy said we wouldn’t need but we found we really do, has another 42.  We have smaller buttons within larger buttons.  And even when we press the right buttons, we’re stymied by on-screen menus telling us to press more buttons.

All this made us feel like dummies.  Not only couldn’t we enjoy the features of our new TV, for a while we couldn’t even turn it on.  But with football as impetus, we grabbed the remotes, replaced the batteries and started calling signals.  When we couldn’t move the ball, we called the cable company and implied it was their fault we couldn’t get a first down.  The cable guy, accustomed to the technologically challenged, patiently guided us through the process.  But nothing seemed to work like he said it would.  I got lippy with him and, just when I’m sure he was typing “difficult” in our customer profile, my wife whispered in my ear, “Honey, the number nine button is stuck.  It won’t pop up.”  That made me feel stupider, like I’d spilled soup on it or something, until I realized it was the cable company’s remote and they had foisted faulty equipment on us.  So I gave the cable guy another earful, fetched a screwdriver and pried the number nine button back to where it should have been.

My wife and I tell our friend how much we’re enjoying the big screen TV he gave us.  He tells us he has a new eighty-inch plasma with cup holders.  He tells us he has a house full of Amazon Echoes and Dots and that, from his bed or his shower, he can say, “Alexa, order me an anchovy pizza,” or “Alexa, play ‘Fly Me to the Moon’.” But my wife and I are in no hurry for a house full of artificial voices.  We have enough trouble making sense of the human ones.  And, call us old fashioned, but if we want to order a pizza, we’ll pick up the phone. Oh, we don’t deny technology’s usefulness.  We’re just waiting for the day when we can say, “Alexa, feed the cats” or, better yet, “Alexa, turn on the big screen TV.”

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The Sidewalk Saint

I’m a fan of the Saint Francis Prayer.  Bringing peace to chaos and shining a light into dark places is the way to go.  Understanding rather than being understood and loving rather than being loved can bring results.  Acting rather than being acted upon gets things done.  But, being human, I like receiving as much as giving. And I’d rather be born without having to die first, a request I’ll slip into the Celestial Suggestion Box.  While I’m here, I try to practice the principles of the Saint Francis prayer.

So I’m walking home from work with my Seeing Eye dog, Randy, when we are surrounded by the Unholy Trinity: lawn mower, weed whacker and leaf blower.  This trio renders me deaf to street sounds I need for safe travel. But I nip my budding resentment with the words, “Everybody deserves to make a living.  Keep calm and keep walking.”

Randy stops at the corner and, when I urge him forward, he stays put.  Then I realize the landscapers’ truck is blocking the crosswalk. As my fresh resentment takes root, I hear a voice saying, “Here.  Give me your hand.  I will guide you across the street.”

“Is this your truck?” I ask the voice.

“Yes.  I am sorry.  Give me your hand.  I will guide you across the street.”

“Your truck is blocking the crosswalk,” I say.

“Yes.  I am sorry.  Give me your hand.  I will guide you across the street.”

Now, here’s where my Saint Francis training kicks in.  I’m on the verge of throwing a snit fit.  But I pause, take the offered hand and surprise myself by saying, “I forgive you.”

As we cross the street, I start laughing.  ‘I forgive you?’  What am I, the Pope? Since when do I dispense dispensation?  But it sounded good and it felt good and it got the desired result so I say it again, pat the guy on the back and walk on, shining my light.


Prayer of Saint Francis
Lord, make me a channel of thy peace.
That where there is hatred, I may bring love,
That where there is wrong, I may bring the spirit of forgiveness,
That where there is discord, I may bring harmony,
That where there is error, I may bring truth,
That where there is doubt, I may bring faith,
That where there is despair, I may bring hope,
That where there are shadows, I may bring light,
That where there is sadness, I may bring joy.

Lord, grant that I may seek rather to comfort than to be comforted,
To understand than to be understood,
To love than to be loved.
For it is by self-forgetting that one finds.
It is by forgiving that one is forgiven.
It is by dying that one awakens to eternal life.


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My View from the Bleachers

Miller Park is named, not for a baseball legend, but for the Miller Brewing Company.  And on this glorious summer Saturday, 40,000 tailgaters toast their namesake with double-fisted gusto.  My wife and I, caught in the high tide of Happy Hour, wash up amid the human flotsam and jetsam outside Gate C. One reveler, eyeing my white cane, observes that I walk straighter than most.  “Got to,” I reply.  “I’m calling balls and strikes.”

We pop through the turnstile as the first inning ends and, rather than search for Fan Services—where they hand out real-time radios—we head for Section 227, Row 4, Seats 7&8, where we sit. Real-time radios are cool because they keep blind spectators like me in sync with the real-time game.  But I’m prepared with Plan B—my 1992 Day-Glo yellow Walkman whose radio feed is only delayed about three seconds—and that’s close enough to reality for me.

But the old Walkman remains mute as I twirl the dial.  “Should have checked this thing before we left the house,” I tell my wife.  “Got any double A batteries on you?”

She hands me a lipstick tube.  “Closest thing I’ve got.”

I advance to Plan C—my 21st Century streaming radio iPhone app.  I’m told streaming involves delay—how long the delay I calculate by asking my wife to tell me when she sees a pitch hit the catcher’s mitt on the field versus when I hear it hit the mitt on the radio.  Twenty-five seconds.  Heck, in twenty-five seconds, even the laziest baseball game can come alive with a screaming line drive hit right at my noggin but speared one-handed by my wife, saving my life and earning her a standing ovation and a cameo on the JumboTron.  And I’d have been oblivious to the drama.

“Shall I bring you into the here and now or leave you to your version of history?” asks my wife, sensing my time-delay dilemma,

“I want the best of both worlds,” I say.  I plug in one earbud and cock the other ear toward my wife.

“It’s a full count on Bryant,” she says.

“He’s not even up yet,” I reply.

I hear the crack of the bat.  Then my wife says, “Bet you five bucks Bryant’s going to single to right.”

“What do you take me for, a chump?” I say, knowing she could clean me out, five bucks at a time, and I’d let her.

In the seventh inning, we sing “Take Me Out to the Ball Game.”  We are melody and harmony.  I put my arm around my wife and we sway to the music.  I am grateful for what I have and whom I have.  I am grateful to be taken out to the ball game, taken out with the crowd, bought some peanuts and Cracker Jack.  I gaze ahead, searching for signs of life in the thick, gray green fog that is the playing field, the dark gray fog of the stands.  I turn to my wife but she’s not there.  I’m holding her hand but she’s not there.  She says my name but she’s not there.  Then in my ear, the ear away from her, I hear the radio sing, “and it’s one, two, three strikes you’re out…at the old ball game.”

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Smile for the Camera

I’m eager to show off my new iPhone app that describes peoples’ faces.  It does other things, too, like read print and bar codes, but recognizing people is too cool to keep secret.

“Don’t point that thing at me, please,” says my wife, looking up from her book.  “I don’t need artificial intelligence telling me I’m a ‘middle-aged woman with curly hair, looking crabby.’ I can figure that out myself.”

“But that’s not how I see you,” I tell her.  “To me, you’re still a ‘pretty teenage girl with curly hair, laughing’”

“Honey, what you don’t see won’t hurt you,” says my wife.  “Here, smile and I’ll take your picture—‘distinguished gentleman with moustache, looking smug.’”

“Is that what I am now?  It’s been so long since I’ve seen myself.  What about the rest of me?  I know I could stand to lose ten pounds around the middle.”

“Keep going,” says my wife.

“I can’t possibly look like those old codgers I saw, way back when, strutting around the locker room at the golf club—saggy this, hairy that.”

“Hmmm,” says my wife.  I want her to cry, “Oh, Hercules, you force of nature!”

“Lumpy here, wrinkly there.”

“My, my.”  That’s all she says, though I want her to say more.

“At least I haven’t gotten any tattoos or piercings.”

“Why would you?”  she says.  “You couldn’t see them anyway.”

“And I don’t wear tank tops or spandex like other guys my age.”

“Honey,” says my wife, taking my face in her hands, “you are my dream of delight.”

“And you are mine,” I reply.  “Beauty is in the heart of the beholder.”

“Now, take that camera away,” says my wife.  “Snap a shot of the dog.  ‘Black Lab with gray chin whiskers, looking hungry.’”

So I stroll away, still eager to show off my new app, calling, “Randy, if you let me take your picture, I’ll give you a biscuit!”

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The Fear of What Hasn’t Happened

When I was diagnosed with RP three decades ago and was told I would go blind, my first thought was that the world would end.  It hasn’t.

When I stopped driving, I figured I’d become house-bound, isolated and withdrawn, that I’d never go anywhere anymore.  That hasn’t happened.

When I started using a white cane, I was afraid I’d flail around and get lost more than found.  I haven’t.

When I replaced my white cane with my first Seeing Eye dog, I just knew I’d trip and fall on my face every third or fourth step.  I haven’t.

When I renewed a relationship after many years, I feared that she wouldn’t want to be with a man who had lost his eyesight.  That didn’t happen.

When I interviewed for a job I knew I could be really good at, I figured they’d find a way to reject me because I was blind.  They didn’t.

When I walk down the street and need to step on a manhole, I just know the cover is off and I’ll fall all the way to China.  That hasn’t happened—yet.

Each day with blindness brings the tide of anxiety—constant, shifting, relentless.  It rises less from visual misperception than from my character defects—worry, inadequacy and perfectionism for starters.  I lack many qualities, faith not the least among them.  If history is the best teacher, I’d learn from abundant evidence that events are predictable, the world is benign.  No, I repeal these laws of nature and probability, subjugate experience to superstition.   I create the fear I feel.  I fear not only the dog that bit me, I fear the dog that might.  Flight is the obvious reaction, the logical choice. Shed the fear and retreat.  But to retreat is to risk every self-fulfilling prophecy, every outcome that could have happened but didn’t.  There’s a choice but there is no choice.  This is a matter, not of heroism, but of survival, of self-respect.  If I can’t embrace fear, at least I can acknowledge it as my companion. So on we go, whistling through the graveyard, fearing most what will happen, not around the corner, but what will happen if we don’t take that next step.

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Bob’s Electronic Birthday Party

I am of the generation that mailed birthday invitations with red, yellow and blue balloons on them; with block printing about who, what, where, when and why; and with a postscript message like, “Bring lots of nice presents!”

Last Monday, I got an e-vite for my friend Bob’s surprise birthday party.  I down-arrowed line by line, hearing things like, “Join the e-vite team” and “Be the first to…” but nothing about the date, time or place of Bob’s birthday party.  I decided not to respond “YES” or “NO” without knowing when or where, so I just closed the e-vite and figured I’d figure things out later.

Last Tuesday, I got an e-vite reminding me that an e-vite to Bob’s birthday party had been emailed to me.  I checked this one out line by line, too, hoping for somebody’s name and phone number to RSVP to, but found only a “MAYBE” button, so I pressed Enter on that.  I figured I could buy some time while I figured things out.

Last Wednesday, I got an email from e-vite welcoming me to the e-vite team. Maybe pressing the “MAYBE” button had enrolled me in the inner circle.  I read this one, too, line by line until, way at the bottom, I found a “NOT NOW” button and clicked on it.  I figured stalling them was my best tactic.

Last Thursday and Saturday, I got e-vites reminding me about the other e-vites.  I don’t know why they gave me Friday off, but they did.  I read these two, too, and heard a more strident, demanding tone.  But still no when or where.  I clicked every link in the e-vite, figuring they’re smarter than I am and they’ll figure it out.

Sunday, I called my friend Bob so I could ask him when and where his birthday party would be.  I figured somebody had probably already spoiled the surprise part of it, so why not ask him directly.  Bob told me his birthday party had been the night before and where the hell was I, everybody was wondering.  I wished Bob a happy birthday and kept my technologically-challenged excuses to myself.

I haven’t gotten any more e-vites to Bob’s birthday party.  I figure they figure if you don’t tell them what they want to know, they cut you off.  Still, I’m on the lookout for the e-vite that says, “Take a Minute to Rate Bob’s Birthday Party.”  I think it’s important to provide feedback when solicited and, boy, will I give them an earful.

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