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.

Posted in Relationships | Tagged , , | 4 Comments

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.

Posted in problem solving, Uncategorized | Tagged , | 3 Comments

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?

Posted in Stories | Tagged , , | Leave a comment

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.

Posted in Adapting | Tagged , , | 1 Comment

The Curious Case of the Hungry Dog

You gonna eat that?
You gonna eat that?
You gonna eat that?
I could eat that!
—from a book of verse by a famous Labrador Retriever poet

In an effort to understand my Black Lab’s obsession with food, I consulted Wikipedia.  “Labradors,” I read, “have a well-known reputation for appetite.”  This dainty understatement rivals for fussiness my mother’s assertion that Randy is “just a little food-driven.”  The Wiki spin is that Labs are “persistent and persuasive in requesting food,” meaning they stop short of stalking and mugging.  And, though Wiki says some Labs may be “indiscriminate, eating indigestible and non-food objects,” my Randy has a discriminating palate.  When my mother’s crocheted potholders went missing, I told her, “Frisk the cleaning lady; don’t blame my dog.”

The instinctive food mania of Randy’s ancestors was reinforced by their owners —hunters who shot birds from the sky for food and fun.  Their Labradors retrieved the fallen game gently, careful not to ruffle any feathers.  Thus, Labs acquired a “soft mouth,” in which Wiki claims they can “carry an egg without breaking it” (Randy carries eggs to the stove for scrambling).  Wiki says Labs “instinctively enjoy holding objects, even hands or arms, in their mouths (but) are prone to chewing, though they can be trained to abandon this behavior.”  Such training is especially important when the objects they enjoy chewing are hands or arms.

When not eating, thinking of food or dreaming of food, Labrador Retrievers are “kind, pleasant, outgoing, tractable (and) trusting with strangers.  They are curious and exploratory and love company, following people and interesting scents for food, attention and novelty value.”  In other words, they’ll hop off their front porch and follow a stranger walking by with a cheeseburger.

Lest you conclude that Labs lack impulse control, let me submit three mitigating factors:

*Wikipedia cites a 2016 published study of 310 Labs.  Most lacked all or part of the “POMC gene, which plays a part in appetite regulation.”  So, rather than Randy being a glutton, he simply lacks a factory-installed fuel gauge.

*Don’t we call brown Labs “Chocolate?” (though we mustn’t feed them that).  And don’t we refer to the several shades of Yellow Labs as butterscotch, vanilla or cream?  Just so Randy the Black Lab doesn’t feel left out, shall I rename him, “Licorice John?”

*Wikipedia states that “the progenitors of the Labrador Retriever were actually from Newfoundland (and) the breed known as the Newfoundland was created in Labrador.”

The bottom line?  No wonder Labs are confused and, as with humans, seek solace in food.

Posted in Guide Dogs, Uncategorized | Tagged , | 2 Comments

Walk This Way

They had a ritual, this old couple.  Every payday, on her way home from work, she stopped at the market and bought a roasted chicken, a nice plump one for six dollars.  And every payday, he and his guide dog stopped by the deli and bought a quart of potato salad, the kind without pickle relish.  And a quart of chocolate ice cream, the kind with real chocolate chips.

At home, he fed the dog and the two cats, all the while listening for his wife’s arrival.  When she beeped the car horn from the alley, the dog raced down the back stairs, out the screen door and across the yard to greet her.  Only for her homecomings did the dog not stop and dunk his head into the recycle bin on his way outdoors.

The man set the dining room table for two and, when he heard his wife step into the kitchen, called, “We’re all so happy to see you, Honey—even the cats.”  She prepared two plates, slipped some chicken skin to the dog and the cats, then announced, “Dinner is served.”

The man shuffled across the kitchen, not from infirmity, but from fear he’d trip over the dog.  He called its name and located the sound of its tail thumping against the wood floor. But where was the rest of the dog?  Left of the tail?  Right of the tail?  The man raised his left foot high and placed it well ahead of him.  Then he did the same with his right foot.  Certain he had cleared any obstacles, he smiled and said, “Hannibal crosses the Alps.”

She’d watched this pantomime a thousand times—once by Marcel Marceau on TV and almost daily by her husband—this high-stepping over the sleeping dog only the mime could see and only her husband couldn’t.  She’d watched her husband step over or around lots of things and nothing at all.  She never intervened or corrected him.  His method worked well enough—it just looked a little funny.

They ate chicken and potato salad surrounded by the dog and the cats.  She read the newspaper aloud and they discussed the state of the world.  They ate lightly, saving room for dessert.  When she rose from the table and said she’d “de-bone” the chicken for tomorrow’s sandwiches, he knew she’d used the wrong word, that she’d meant to use the word, “bone.” But he didn’t correct her, didn’t prove himself right.  That didn’t need to be said—not by him, not right then.  What she meant was what mattered.

They had a ritual, this old couple, which went beyond chicken every payday.  They gave each other credit for good intentions and kind acts.  When she returned to the table, she placed in its center the quart of ice cream, with two spoons rising like candles from its rich chocolate surface.

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

Hey, I’ll Settle for Post-Traumatic Stress

My friend and fellow blogger, Beth Finke, once told me, “RP is the cruelest way to lose eyesight.  Just when you think it’s bad enough, it gets worse.”  Bravo, Beth, for empathy beyond your own experience.  And for understanding that, while any blindness choice is picking between poisons, gradual blindness is torture extended.

A few years ago, I sought help from a therapist specializing in Post-Traumatic Stress Disorder.  Blindness, gradual or sudden, is traumatic and I needed help dealing with its effects.  The therapist mentioned that her associate was allergic to dogs, so, at the first appointed date and time, I set out with my white cane instead of my usual sidekick, Randy the Seeing Eye dog.

Eight blocks to the therapist’s office proved my cane skills rusty.  I veered and zigged and zagged.  I bumped into parking meters, hooked sign boards touting soups and salads, sideswiped open air cafes usurping my sidewalk and impaled at least one pedestrian’s pant leg.  And my fellow travelers acted like sadists: drivers turned in front of me, cars crowded the crosswalks and lunchtime strollers jostled me right and left.  One guy even hurdled my cane in his dash to cross Clark Street.

Totally frazzled, I took the first third of our fifty-minute hour to hyperventilate with anxiety and vent from frustration.  Then we focused on our initial therapeutic objective: identify the traumatic incident for which I sought treatment.  Was it thirty years past, when I was diagnosed with RP?  Or fifty years ago, lurking in childhood?  We settled on the former and embarked on the journey to desensitize the trauma of discovering RP.

Sad to say, neither my therapist nor I had a breakthrough and, after eight sessions, we parted ways.  No hard feelings.  But I recently recalled what Beth said about RP and what my therapist and I did about trauma.  And I saw the light: RP is not a single trauma, it’s trauma that keeps traumatizing.  Maybe not every day, but every time I find the way I’ve learned to live doesn’t work anymore.  I now realize that, at my first appointment, we didn’t need to search the archives—my trauma was right there and right then.

And it’s still right here and right now.  But I’m grateful for the lesson learned—that I need to keep current and constant with my skills because blindness doesn’t take a day off.  And the skills remain practical and emotional, from white canes to resilience, from echolocation to acceptance.  And if I can’t put trauma into the past, I can progress along the process at its core: growing from victim to survivor.


NOTE:  Beth Finke’s latest book, Writing Out Loud: What a Blind Teacher Learned from Leading a Memoir Class for Seniors, published in mid-2017 by Golden Alley Press in print and electronic formats, is now available as an Audible book and is in process of becoming an NLS Talking Book.

Posted in Adapting, Blindness | Tagged , , , | 2 Comments