Toys for All Ages

Saturday morning, I sat on the living room floor and played with my toys—just like when I was a kid.  Back then, I was the voice of the Lone Ranger, calling, “Hi Ho Silver” as the stiff-legged horse galloped across the carpeted plains.  I made funny faces on Mr. Potato Head, then set my Slinky loose on the stairs.  I built the Empire State Building, with King Kong perched atop its tower, on my Etch-a-Sketch.  Before lunchtime, I had tamed the Wild West, invented plastic surgery, mastered the laws of physics and created the Eighth Wonder of the World.

I am older now, and I’ve put aside childish things.  Saturday morning, I sat on the living room floor and played with the Seeing AI app on my iPhone.  AI stands for artificial intelligence and the app does all sorts of amazing things, from reading text to recognizing faces.  It even reads handwriting.  I printed block letters with a black Sharpie on white paper and Seeing AI read, “Hey, good looking!”  Now, that’s intelligence!

Then I switched the menu to “Person,” pointed the camera at my face and heard, “Eighty year-old man with blond hair looking neutral.”

“Eighty years old, my ass!” I shouted at the phone.  “I’m only sixty-eight—and my friends say I look ten years younger.”  I jabbed the phone and snapped another head shot.

“Eighty year-old man with blond hair looking angry,” said Seeing AI.

“You bet I’m angry!  You cheated me out of twelve years!”

Then, recalling that crabby people look old, I forced a smile.

“Eighty year-old man with blond hair looking happy,” said Seeing AI.

“Wrong again,” I said, and, putting Sharpie to paper, I hand-lettered a manifesto.

“Fifty-eight year old man with blond hair looking smug,” read Seeing AI.

“It’s about time you got it right,” I said and closed the Seeing AI app.

Saturday morning, I sat on the living room floor and played with my toys.  I pondered modern maturity, made peace with technology, honored the judgment of friends and took ten years off my age.  All before lunchtime.

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Speaking of My Vow of Silence…

After driving crosstown during rush hour and hiking cross-country through parking lots, then careening down corridors to the Cancer Research Center, my wife turns to me and sighs, “I’m sorry, Honey.  I don’t think you signed on for all this.”

I had heard those words before.  Long ago and far away, in the eighth year of a marriage and eighth year of RP, my then wife succumbed.  “I feel like I’ve lost my best friend,” she told me.  “It’s not that you’re a person with blindness, it’s the person you’ve become.  I didn’t sign on for this.”  Her despair was exceeded only by my own, for I knew I was its cause.

We settle into waiting room chairs.  “You’re right, Honey, I say.  “Sickness and health weren’t part of our vows.  As I recall, I pledged not to talk so much and you promised not to interrupt so much.”

“In music, they’d say I added harmony to your melody,” says my wife.

“You are the soprano to my basso, the Diva to my Lothario.  And I’ll say this about sickness and health.  I’ve learned a lot, especially from you. Cancer is not your fault.  Blindness is not my fault.  Only if we let them become our fault.  As long as we work together, we’ll get through anything.  Life is ten percent what happens to us and ninety percent what we do about it.  I haven’t always done my best with blindness.  I withdrew and isolated.  But you, you’re out there doing it.  I admire your strength, your resourcefulness and your honesty and I’ll do anything I can to support you.  You have so many…”

“Honey,” says my wife, “the doctors are ready for us now.”

“Really?  I didn’t hear them calling.  I must have been…”

“Talking,” says my wife

“Hmmm, yes.  Well, let’s get on with the show.”  We rise and my wife leads me left and right and straight to Exam Room 12 for her second or third or, maybe fourth opinion.  But who’s counting?

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Our Four-Star Hospital Cafeteria

It’s not that my wife and I get off by hanging around hospitals.  It’s just that what we need to get done doesn’t get done at our neighborhood sushi bar.  So, with a squeeze of the hand and a kiss on the cheek, my wife heads upstairs for her cancer scans and I go down for my colonoscopy.

“We’ve improved the prep a lot since your last time, don’t you think?” says the nurse who takes my clothes.  “No more do-it-yourself enema, which is nice.  See?  The worst part’s over.”

“No,” I reply, “the worst part’s not over.  The worst part is starving for a whole day and a half.”

The transporter wheels me into a room at the end of the hall.  “Is this the cafeteria?” I ask the three nurses, nurse anesthetist and doctor who surround me.  They chuckle politely and describe how wonderful “Twilight Sleep” will feel.

“Might as well knock me out.  I can’t see the TV screen anyway.  I’m blind.”

“We know,” they say.

“So much for privacy,” I say and nod off.

I awaken in the hallway.  A voice from above intones a prayer. I blurt out, “OMG!  Who called the priest?”

“It’s Sister Savannah reading the Daily Prayer over the intercom,” replies the transporter, accustomed to drug-addled rambling.

The nurse brings my clothes and a snack: orange juice, fruit cocktail, cheese and crackers.  I wolf it down—now I’m really hungry. The doctor comes in and says I did very well.  He hands me a glossy folder with my results and photos.  “Polyp pictures!” I say.  “Oh, boy!”

I am wheeled, blessedly, to the cafeteria, where my wife has a cup of tea and a piece of fruit and I choose a donut and chocolate milk.  It’s the best donut I’ve ever had.  My wife tells me she and the cancer center staff are on a first-name basis and she considers them friends.  I tell her I’m glad that kindly connection helps her but I wish she and the cancer center staff had never met.  She agrees, then asks about the colonoscopy.  I tell her those people don’t want me back for five years because they think I’m a smart-aleck, to which my wife agrees.

“So, what’d they find up there?” she asks.

“Two polyps,” I reply.  “Wanna see the pictures?”

“If they’re yours, they’re beautiful,” says my wife.

“How did your scans go?” I ask.  “I mean, I know we won’t get results ‘til tomorrow, but…”

“Actually, they did tell me what one scan looked like,” she says.  ”But it’s something I’m sure you’ll say you already knew.  They told me the CT scan of my head revealed nothing.”

I hear mirth in her voice.  “Wide open spaces, eh?”

“Yep,” she replies.  “Nature’s perfect vacuum.”

And we laugh long and loud.  I get another donut because I’m still really hungry.  And my wife pours another cup of tea.  “Here we are,” she says. “Our little table for two.”

Posted in Coping, Relationships, Uncategorized | Tagged , , | 2 Comments

Blindsided

Two years ago, my wife had cancer surgery.  Once the bad parts were removed and she was back on her feet, we figured we were in the clear.  But my wife’s cancer has returned.

Two years ago, I disproved skeptics predictions that this blind husband would fail as post-operative home health aide.  I brought earnest imprecision to my duties and, mercifully, did no harm. This time around, I am dogged by feelings of inadequacy and frustration that I can’t run interference—drive my wife to treatments, navigate the medical maze or pore over the fine print in her medical records. Instead, we’re finding ways I can help with our shared vulnerability.

I’ve discovered 111 NLS Talking Books on cancer and I’ve read seven so far.  I’ve learned how rapacious breast cancer is, how relentless and necessary are side effects of chemotherapy and how to be the best and most supportive husband I can be. I’ve learned not to fill her with false hope, ply her with vacuous cheerfulness or burden her with my anxiety.  For once, I avoid trying to fix things.  I’m learning the value of being there, the power of being present.  I listen to content and tone and sometimes say the right thing and sometimes the wrong thing.  Sometimes I don’t know what to say so I say nothing at all.  I’ve learned to accept and support her decisions about her health, her body and her life.

We each carry conditions without cure.  My aberrant RP gene kicked in thirty years ago; my wife’s cancer has been hit and run for fifteen.  Despite my symptomatic head start, I must not presume to know what she’s going through nor pretend to have the answers.  I recognize that she uses her strengths and meets her needs in ways different than I.  I must honor my wife’s experience as hers, separate from mine.  Honoring her reality, and she mine, values both.

I’m encouraged how briefly either of us dwelt on fairness.  So easily I could rail ad nauseum, “If life were fair, I wouldn’t be blind and my wife wouldn’t have cancer.”  Still, I catch myself murmuring, “Please make her well because I don’t know what I’d do without her.  I’m not asking for cures, just containment.”  Selfish prayers from my own needs may seem unseemly.  Writing about my blind needs rather than her cancer needs may seem self-centered. For this, I beg your indulgence for my self-indulgence.

My wife and I are not islands—Cancer and Blindness.  We are a system, a constellation, a family.   We’re ordinary people—we let the dog up on our bed.  We’re ordinary people in extraordinary reality—we get too up or too down based on events of a single day.  As for the fluffy parable that adversity brings perspective, we’ve got perspective up to our ears. We practice surrender and strive for acceptance.  And every time we think it’s OK, we are stung by the reality that no, it’s not OK.  It is what it is and that’s all.

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Kitchen Concussion Protocol

My wife and I bought a new refrigerator.  We had to.  The old one conked out.  The new one keeps Cold Duck cold and frozen yogurt frozen.  But when we close the refrigerator door, the freezer door swings open and the frozen yogurt unfreezes.  On lucky days, we avert meltdowns when, after a minute of open door osmosis, we hear the warning chime.  But if we wander out of earshot, our Eskimo Pies melt like the Wicked Witch of the West.

I crank up my print-reading gizmo and listen to the fine print in the Owner’s Manual.  “Warning!  Achtung!  Do not operate this appliance in a bathtub or while standing in a puddle!”  Meaning a puddle of unfrozen yogurt? Under “Troubleshooting,” I hear remedies for problematic ice makers in four languages but not a word about freewheeling freezer doors.

“Call the repairman,” says my wife.  “Show him how the door swings open.  Show him the dent in the freezer door.  Show him how the dent in the freezer door matches the bump on your head.”

Next day, I explain to Rodney the repair man how risk becomes injury because I’m blind and can’t see when the freezer door swings open.  Rodney tightens a bolt and loosens a screw and torques a nut and tells me the refrigerator is not level, that it leans forward and that’s why the freezer door doesn’t stay shut.  Then he tells me it’s an installation problem and not a repair problem and, since he’s a repair man and not an installation man, he can’t do anything about it.

“We’ll have to tip it back and jam a stick or something under the front of it,” I tell my wife when she gets home from work.

“Tip it back?  That thing weighs a ton,” says my wife.  “Wait, I’ll get the jack from the car.”

“Won’t work,” I reply, already having considered, then discarded the jack idea.  “No, one of us will tip and one of us will jam.”  Then we sit, weighing certain concussions versus probable crushed fingers.

That was three weeks ago and the freezer door still swings open.  But we’ve made progress.  When we remember, we hold it shut when we close the refrigerator door.  That keeps the ice packs icy so I can put them on the bumps on my head for the times when we forget.

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The Perks of Being a Valued Customer

I phoned my local newspaper and asked why I was being billed the same amount every six weeks instead of every twelve.  The way I figured, I was being charged double.  But I’ve been told many times that the way I figure is all wrong, so I prepared to state my case.

“The revision to your bill reflects the numerous premium editions you enjoy throughout the year—the Return to School, the Cubs Playoff Preview and the seasonal holiday editions to name a few,” said Lydia the rep, cheerily and breathlessly.

“What if I don’t want the Premium Editions?” I asked, matching Lydia’s cheerfulness without challenging her use of “revision” rather than “exorbitant price gouging.”

“Then you can opt out of the Premium Editions,” said Lydia, cheerful as ever.

“If I opt out, will I get a stripped-down version or no version at all?”  I hid the tone of skepticism that I’d lose out somewhere down the line.

“You’d receive the Premium Issue.”

“Hmmm.  Even if I opt out?”

“Even if you opt out.”

“Hmmm.  Without paying for it?”  I hid the tone of skepticism that if it sounds too good to be true, it isn’t true.

“Yes, because you are a Valued Customer.”

“Well, Lydia, a lot of businesses call me a Valued Customer, but they don’t give me something for nothing.  They just try to flatter me so I’ll pay more.”

“We’re not like that,” replied Lydia.

I could think of nothing to say other than, “Thank you, Lydia.”  I didn’t say I’m blind so I listen to the e edition, nor that I love when my wife reads aloud the Sunday print edition over breakfast.  Nor the existential question, “How did I become a Valued Customer?  And, Lydia, how do I attain that stature in all my affairs?

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The Holiday Party

I almost hit the jackpot at the staff holiday party.  I guess 166 jelly beans and the actual count is 174.  Nancy the nurse guesses 175 and wins the gift card.  But I win second place, a feat considering I’m the only staffer whose guess is based on feeling the bean bag rather than eyeballing it.

Where there is a holiday party there is pizza and where there is pizza there is the deep dish versus thin crust debate.  I choose one slice of each for scientific comparison.  And where there is a holiday party there are games: Bean Bag Toss, Musical Chairs and Pin the Nose on the Snowman, wherein a blindfolded staffer is guided by shouts of “Left!  Right!  Up!  Down!” amid general hilarity.  A colleague sidles up to me and whispers that perhaps this game is insensitive to blind people, that exploiting vulnerability is bad form.  I munch my pizza and ponder the issue.

No, I am not offended   By the Pin the Nose on the Snowman game.  I do not feel that the fun is at my expense. If anything, it might be a valuable experience for sighted staff to try to navigate wearing a blindfold.  Perhaps playing “temporarily blind” might increase awareness that hey, this not seeing anything isn’t only scary –it sucks.  But this holiday party needn’t become a learning experience. It’s just a party.

Then there are games, like Musical Chairs, in which a truly blind person can’t participate.  I feel no resentment toward the organizers; rather, I feel that “outside looking in” twinge of sadness.  I don’t expect to be catered to—this is a sighted world, after all, and the world doesn’t revolve around me.   I know how to meet my own needs and I can enjoy the enjoyment of others.  My choice is either to engage from a sense of adequacy and a willingness to take a risk, to take a pass (neutrally) or to remain outside the circle nursing a grudge and feeling sorry for myself.  Today, I take a pass and get a kick out of the game, albeit vicariously.

While I appreciate my colleague’s sensitivity about what might be insensitive, I don’t need someone to assume they know what makes me tick—or what makes me ticked off.  I have a voice.  At the holiday party, I choose to laugh.  The bottom line?  I probably would have won that Snowman game.  After all, I’ve got the most experience finding things I can’t see.

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