Doth God exact day-labour, light denied.

 (John Milton, 1608-1674)

 Everyone recognized Dr. Nelson.  A political science professor at Southern Illinois University, the man was a campus fixture, kind and gentlemanly, impeccably dressed.  We marveled at the dignity and ease with which he and his guide dog navigated the hilly, wooded campus.  He was exotic, intriguing, Other.  He was conspicuous.

This was in the late 1970s.  Fast-forward to Dr. Nelson’s Ball State counterpart, Dr. Tom Weidner.  When we married at the ripe old age of 21, we both knew he had a slowly progressive eye disease, but the potential that he could become blind, the ramifications of living day-to-day with a disability, these were merely Star Trek holograms, no more real than old age or parenthood.  By 1993, Tom was a full professor and well-established scholar, father of three lively children.  And he was blind—I found myself married to the man everyone recognized, the guy with the dog.  I took refuge in memories of Dr. Nelson’s classy attitude and demeanor.  I wrote him a letter, and he responded with a stark honesty that gives me pause still:  “Blindness is a grievous disability.”

Wait a minute!  Excuse me, sir, but that’s the wrong answer.  I want to hear how utterly normal and ordinary you are, how your life is just like everyone else’s, how the dog gets you everywhere you want to go.  I want you to make me feel better, gild the disability, paste on a smiley face.

Grievous?  As in loss?  The relentless pain of the not-there?  Well, yes.

Blindness is relentless.  Beth Finke, a Chicago-based commentator for National Public Radio, states, “People think… that everything’s okay now, that I’ve ‘overcome’ my blindness.  But it’s just not true.  The only people who conquer disabilities are those who are cured.  The rest of us…live with our disabilities, not despite them.”

It sounds so deceptively simple, so positive, so politically correct:  “living with disabilities.”  To quote Finke again, “On good days, I think of this as a blessing:  Not everyone gets a chance to live life from such completely different perspectives.  On bad days, I grieve.”[1]

That word again, with its connotations of burden and heaviness and pain.  Despite the magic of computers and other adaptive technologies; despite polite, dependable guide dogs; despite the rebellious, resilient human spirit; despite intellectual or marital status; despite elaborate coping mechanisms and soul-deep joie de vivre, people’s lives are diminished by blindness.

I’m not saying that blind people don’t lead full, productive, joyful lives.  Of course they do—Beth Finke, for example, or Tom Weidner.  Homer, John Milton, Ray Charles.  What I am saying is that we tend to gloss over, ignore, paint in pretty colors the difficulties that just plain do attend blindness.

Let’s watch a bit, make like voyeurs into my husband’s world, a world navigated by fingers and ears, faith and grit.

He sets the alarm by listening, one number at a time; then checks to be sure he has the correct time—a.m. or p.m.?  Alarm, CD, or radio?  Did he get the alarm button or did he accidentally hit the time?  He checks all of the above, patiently listening to the clock:  “Hour setting, 5, 6:00.  It’s 6:00 a.m.  Minute setting, 0, minute 5, minute 10, minute 15, alarm off, it’s 6:15 a.m.  Alarm on, it’s 6:15 a.m.”

Morning; he shuts off the alarm and moves toward the bathroom, but dammit, the kids left a Lego block on the floor—ouch!  Flinching at the pain in the arch of his foot, he bangs his nose on the bathroom door.  And he hasn’t even peed yet.  True, anyone can fall prey to renegade Legos and diabolical doors, but for the blind, these petty frustrations become routine.  Continuing through the rest of his morning ablutions:  take a shower (what’s the difference between liquid soap and shampoo, between shampoo and conditioner, between shaving cream and hair mousse?); get dressed (pants to the left of the tie hanger, tie hung around shirt, shirt hung next to pants, all carefully pre-arranged); have some coffee (pour to finger, burn finger, rinse finger); eat breakfast (instant oatmeal again, it has more flavor than dry toast and is easier than trying to land the butter in the right place).  Oh, and the dog requires morning ablutions as well, because he, too, must be socially acceptable.

Before our Peeping Tom day ends, countless other obstacles will bedevil him—a laundry basket trips him up as he gets the dog’s dishes; the dog has diarrhea; the secretary is sick; the meeting has been moved to a cramped room across campus, in an unfamiliar building; construction blocks the dog’s usual grassy area for doing business.

Professional travel gets a bit tricky.  Relying on airport employees, pluck, and helpful strangers, Tom gets to the hotel, engaging a bellhop to carry his suitcase—with one hand working a dog, he needs a free hand for things like doors and elevator buttons.  The suitcase is meticulously packed so that he doesn’t wear the black shirt with the navy blazer, or the brown jacket with the gray suit pants.  “Find the counter,” he tells the dog.  Alas, the dog goes to the wrong counter, so someone leads the duo to the registration desk.  “Follow!” is the dog’s command, this time a bit curt. Tom produces his hotel confirmation, credit card, etc.  He then asks for a couple of pieces of Scotch tape, and requests help finding a grassy spot for the dog’s relief area.  Tape?  Grass?  The tape goes on the cardkey for the door, so that he can feel which way to insert the card; another piece goes on the door itself, so that he can be sure he’s trying to open the right door.  And then there’s the grass, always an adventure.  In San Francisco, the nearest grass was six blocks from the conference hotel.  In Anaheim, there was a four-foot square gravel area near a utility hook-up.  In St. Louis, we found a tree in a pot—the dog jumped into the pot(ty?) and could just exactly squat, hitting the mulch most of the time.

Over the years, Tom has developed a philosophical sense of humor, necessary to maintain sanity and smooth his bumpy path through life.  He quips one-liners to the travel professionals whose job it is to ensure that he finds the restroom (or the grassy area), gets on the right airplane, figures out the various routes to and from meeting rooms.  He jokes easily and frequently with students, colleagues, and assorted strangers, helping those around him to be more comfortable with his blindness.  The guide dog—intelligent, dignified, clean, alert—the dog helps bridge the awkward spaces, too.  The two of them, dog and man, smile bravely and believably, if sometimes through gritted teeth.  Yet there remains a subterranean frustration, helplessness, even humiliation, in needing assistance for everyday activities, activities most of us take for granted.

Okay, here is where I should shift gears and take you to the positive side of blindness, share some of those funny one-liners and stories that act as social lubricant, humor being the best defense against the inevitable awkward moments.  Humor does ease the pain, both physical and psychological.

In mid-flight a passenger once blurted out, “Hey!  There’s a dog here!”  Tom ignored him the first time but when he persisted, Tom turned to him and asked, “What are you talking about?” then leaned over, felt around for his guide dog, a rather obvious black Lab whose haunches were crammed uncomfortably under the seat, forcing Tom to straddle the dog, and exclaimed, “Hey!  There IS a dog on this plane!”  The silliness lightened the awkwardness for everyone.

Clownish, yes, but these moments free people to acknowledge the elephant in the room (or the dog gas in the air).  Recently I watched Tom walk into a pillar in a restaurant and ask it where the men’s room was; then recognizing his error, he patted it kindly, thanked it for its time, and moved on as though talking to pillars was a part of his everyday business.

Tom is creative in softening the awkwardness through humor and quirkiness.  He and a friend made light of the unavoidable grand entrance to a concert (B.B. King) by walking in together, each with a hand on the harness, “sharing” the guide dog.  At a recent professional conference, where Tom presented research findings to a group of about 500 colleagues, he planted several slides in his PowerPoint:  “Don’t laugh, you’ll only encourage him!”  “Sshhh!  If you file out quietly, he’ll never know.”

The guide dogs, too, ease the way, often with a touch of sass.  Guide dogs are the crème de la crème of the canine world, the Rhodes Scholars, the Ivy League gang.  Like smart people, smart dogs tend to have strong and idiosyncratic personalities.  Guide dogs lead sheltered lives, trained to value the human voice over their own instincts.  They don’t get to bury bones or jump in the cow pond or chase rabbits or sniff and lick themselves.  The first time we took Tom’s dog swimming in Texas’ pristine Guadalupe River, he cowered at the shore.  Finally, obedience won over fear, and he timidly joined us in the water, paddling immediately to my sister and jumping in her arms—80 lbs. of frightened Labrador retriever.  Like Tom, the dogs are resourceful.

Another dog did love the water and loved to play fetch.  This one accompanied Tom and a friend on a canoe trip, where, on a break, the dog brought a large, smooth rock weighing about 10 lbs. and dropped the boulder at Tom’s feet:  “Come on Dad, let’s play!”  Luckily, the rock didn’t break any bones. Asked to find the counter at a Subway once, Tom’s dog promptly stood on his hind legs and placed his front paws on the counter, ready to order.

In some ways, I suppose I could argue that Tom’s blindness actually enlarges our world, perhaps softens it a bit.  That “perspective” Finke mentions.  We will always have a calm, even-tempered, obedient, beautiful dog, without the hassle of soiled carpets or chewed shoes.  Tom is never hampered by a person’s appearance; his impressions are refreshingly free of the prejudices that spring from physical attractiveness or political correctness.  In Tom’s mind’s eye, I am eternally in my early 30s, when his vision took its final downturn.  I may go gray, sag and droop where I once perked and poofed, but the effects of age are primarily visual.  There is some small comfort there, in our youth-obsessed, image-saturated culture.

And yet, I’m not willing to add the “but” clause:  “Blindness is a grievous disability, but…”  Blindness permeates everything, for the blind person and for all who love and live with him.

Consider for a minute how it feels, at 13, to have to make a joke when your dad sits in the wrong chair at the assembly, or fumbles finding the right one.  You can’t be mortified—he’s your dad, after all, a responsible, decent parental unit, someone you actually respect, though you’d never let on in public.  What if it was your Lego block he hurt his foot on, after the tantrum you threw last night when he accidentally crashed into your carefully crafted masterpiece, sending its components flying?  Your doll with a broken arm—you left her in the floor where you had been playing, and Daddy stepped on her.  Your racetrack, bent beyond use by an errant Daddy-foot.  Your milkshake on the counter where you left it for a minute to go to the bathroom, now spilled on the floor, for you to clean up.  Consider the Grand Entrance this family makes, always—at church, the ballgame, dance recital, gymnastics meet, concert.  Oh, you get used to it, shrugging off and pushing down any stubborn feelings of embarrassment.  You put your stuff out of his way—one smashed iPod and you learn your lesson.  You adapt.  But it is a conscious effort, and it is relentless.

For me, living with blindness means protecting Tom, protecting the kids, protecting us all, from the inevitable fall-out of blindness.  Buffering it, like I’m the first line of defense.   Whether or not that is actually true, it feels that way.  I constantly check for obstacles, pick up almost obsessively, move the Lego contraption to the corner and hope he doesn’t go there, get the UPS package off the porch before he trips on it, put away the laundry baskets, verbalize everything:  “Dishwasher is open.” “There’s a basket by the basement door.” “The cat is right by the door; don’t let him out.”   I kill the spiders, answer the late-night doorbell, clean up the spilled wine or coffee or milkshake.  Not because Tom can’t, but because all of our lives are easier with fewer “blindisms.”

Like the guide dog, I am ever-alert, ever-vigilant, checking fore and aft for booby traps.  Unlike the dog, though, I’d really like to engage in meaningful conversation as we walk; rest while my partner drives; do the “lady” thing while my man forges the way, opens the doors, protects me from the elements.

Anger and frustration are frequent houseguests.  Children leave toys in the floor; dogs and cats (and children) get underfoot; door angles shift from when you came through a little while ago.  Stuff happens, and tension builds.

It makes for a skewed domestic life.  Everything on his to-do list requires maneuvering around the blindness.  Making coffee by feel, adding cream and sugar by faith.  Wiping off counters gingerly, hoping to avoid knocking over the crystal wine glass.  Loading the dishwasher or clothes washer, one hand feeling for blank spots.  Eventually, the law of probability kicks in.  The glass breaks, the wine stains, the coffee spills (and burns), the overdyed blue jeans get washed with the white camisole.  The ramifications are far-ranging, encompassing gender expectations, finances, career choices, family planning, leisure activities—everything.

            Season by season, inch by inch, Tom’s vision loss has forced us to change our lives, in increments.  With young children and their needs and activities, many of which involve transportation and volunteer work, it seemed logical that I stay home full-time.  Eventually, it became clear that we couldn’t manage the modern two-career family—transportation and errands and appointments simply claimed too much time.  I took a position as a part-time university instructor, a job I love, a job that is perfect for our family, a job I might very well have chosen.  Only I didn’t get to.  And that makes a difference.

Our recreational activities are completely different now.  One too many singed eyebrows, and Tom had to concede that charcoal grilling was no longer safe; a headlong fall into a construction ditch convinced him that it was time to give up another cherished activity, running alone; bare feet gave way to flip flops, which gave way to sandals, which gave way to shoes.  Playing catch with the kids, watching movies and television, riding horses—once hobbies we all enjoyed, now casualties of blindness.

Or vacations—Tom’s blindness relentlessly requires accommodation.  “Are we there yet?” loses much of its punch.  When we finally arrive at our vacation destination, we don’t get to drop everything and go play.  We have to stow our stuff carefully, along the perimeters; figure out designated spots for toiletries; show Tom the layout of the rooms, where the dog can relieve himself, where the snacks are, how to get to the beach or pool or exercise room or whatever.  We have fun, eventually.  After we accommodate blindness.

Sightseeing takes on a whole new meaning.  Most sights are exactly that.  Everything is unfamiliar, therefore requiring careful, detailed explanation.  Outdoor adventures take on near-demented dimensions, and we have had some terrifying experiences—a memorable trek along a “moderate” piece of the Appalachian Trail, with sheer bluffs on either side of an 18-inch path; a whitewater run where nothing more than quick reflexes and sheer physical strength kept Tom in the raft as it careened down the Nollichucky River.  Now we hire our own guide for hiking and other potentially life-threatening pursuits, an expensive addition that eliminates independent exploring.  But even in the best case scenario, where the guide finds wonderful places that incorporate other senses—still, Tom can’t fully share the breathtaking view, the awesome power of the waterfall or rapids, the sun as it gracefully melts into the ocean.

Vacations are anything but relaxing.

Socially, too, blindness is always a force to be reckoned with, a constant companion demanding energy and attention.  Requiring accommodation.  We—his friends, family, whoever he’s with—open the doors, point out his chair, show him where the restroom is, read the beer or wine list to him, tell him if we leave the table.  Easy, little things.  But relentless.  We draw stares, which we try to ignore, and we smile.  Through gritted teeth.

Parties present their own perils.  Tom is a handsome, slim, dignified man, well-coordinated and athletic.  But crowded places are difficult to negotiate.  It’s easy to bump into people, kick a table leg and spill someone’s drink, step on a foot or two.  It’s hard to juggle food, drink, and dog, while feeling for a place to put them.  So we run interference, bringing him food and drink, finding him a place to sit where the dog won’t get his tail stepped on, making sure he isn’t stuck in a corner somewhere alone.  Mingling requires careful forethought, explicit instructions and descriptions, single-minded focus and attentiveness.  Forget spontaneity.

Professional/social events—now those can get gnarly, the obligatory white-tablecloth-and-red-wine affairs where most of us feel a little nervous, edgy; where we’re on our best behavior, with our pinky out, our forks analyzed, our napkins just so.  Most of us suffer through those dinners and speeches by watching what everyone else is doing.  My husband relies on me, or another companion, to explain protocol.  And it gets old, it gets frustrating, you just wish you didn’t always have to be so carefully attuned.

We jokingly call Tom “His Eminence, Dr. Weidner.”  My husband is a college professor, a scholar and researcher with an international reputation.  He runs (indoors, on a treadmill), cycles competitively, lifts weights maniacally; he has been cross-country skiing in Alaska, whitewater rafting in the Appalachians and hiking in the Sierra Nevada.  He embraces life and lives fully, facing the inevitable challenges, obstacles, and frustrations with aplomb.  His formidable courage, strength, and heart inspire friends, family, students, colleagues.  His multi-tasking skills would boggle the minds of most CEOs, and might even impress a mother of young children—there is much to think about and remember when you can’t see.  Students, past and present, learn not only from his vast knowledge store but from his example and attitude.

Nevertheless, to live with blindness is to face relentless obstacles, in every pathway.  Adaptive technology, well-trained guide dogs, supportive family, and the mostly-reliable kindness of strangers can take you only so far; the rest involves grit, wit, humor, and above all, tenacity.  Blindness is not something one “gets over.”  Much like grief:  You don’t get over it, you live with it.  You maneuver around it, laugh at yourself, lose some of your vanity, abandon foolish self-consciousness.  I’m not planning to trade in my husband of nearly thirty years for another flawed human whose eyes work.  But I won’t pretend blindness doesn’t hamper his life—and the lives of all who love him.  Dr. Nelson was right.  Blindness is, indeed, a grievous disability.

 

[1] Used by permission.  Quoted from Beth Finke’s radio essay “Christopher Reeve’s Legacy for the Disabled,” available at //www.bethfinke.com/media.html.  Ms. Finke’s gracious, astute comments concerning blindness, guide dogs, fashion, and whatever else is on her mind can be found there as well.

 

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During the academic year, I play professor, but during the summer months, while my husband toils away teaching classes for Ball State University, I write, reflect, laugh.  And work hard to improve my craft in both tangible and intangible ways.  I live with my family near Muncie, Indiana, best known as the birthplace of Ball canning jars.

I am an essayist.  I don’t have some big important Truth to share, just little tidbits and nuggets and foibles.  At its best, I like to think my writing is grace-filled, like the U2 line from their song by that name:  “She carries a pearl, in perfect condition / What once was hurt, what once was friction.”  I hope you’ll find pearls and not pebbles in my writing.