How to be Blind
Publsihed in Cicada, September/October 2013
Before I became a writer, I had no clue that most books contain a journey of crisis and challenge so that the hero grows positively from the struggle. My personal experience supports this literary formula, but as my journey began, I wasn’t a reader or a writer and expected only losses ahead. I hoped simply to be brave and soldier through them. Like most protagonists, I did have some personal strengths to help me—a determined, independent streak from my mom, an unwavering capacity for hope and humor from my dad, and the youthful elasticity to rebound. Still, the gains that resulted came as a complete surprise.
As I became blind from retinal hemorrhaging in my mid twenties, I underwent many tests and saw many doctors, dozens every Wednesday just in UCLA’s Eye Clinic. After each new black line signifying a hemorrhage, I had to go to bed with my eyes patched and with three pillows propping me up. Doctors hoped this position would help the blood settle and do as little scarring of the retina as possible. In bed, I had plenty of time to ask myself the question the doctors asked, why was this happening. But I also expanded that question: why was it happening—to me.
One of my closest friends from my Pennsylvania hometown, Brian, now lived in Los Angeles and visited me every day in the hospital, even when I had a three-week stay. The hospital staff thought he was my boyfriend, since my actual boyfriend, an hour away, came much less often. Brian, a social worker, allowed me to speculate about all the existential issues occupying me. In those discussions I began to define what I did and did not believe, what I valued, how I might still enjoy life without sight.
At the same time, a nurse surprised me with a talking book machine, a precursor to audio tape players. With my eyes patched and eyesight failing, I discovered books. Previously, I’d been a jock. At first, I read classics, just to raise my spirits and delight in the language and happy endings of Austen and Dickens, but soon I turned to a book entitled, Search for God. That led me to all sorts of theological thinkers, to memoirists, and self-help writers with positive messages. Alone, I prayed.
To keep me from growing too pious, Brian teased me, as he’d always done. My boyfriend sneaked beer to me, hiding it in my bedpan.
After six months which coincided with summer vacation from my teaching job, I traveled to my parents’ home in Pennsylvania to consult east coast doctors. All the super-god medical minds in Boston, Philadelphia, and New York were just as baffled as those in California. No diagnosis. The doctor in New York City agreed to continue laser treatments I’d undergone in California to seal off the newly-forming blood vessels. Still, the bleeding continued. My stomach churned as my sight diminished bit by bit.
Staying on in Pennsylvania, I didn’t have anyone like Brian to discuss the large questions I was contemplating. Neither my boyfriend by phone nor my mom, one bedroom away, would address these issues. They wondered how I could relate to any God who would “do this.”
Enter Dottie. Dottie was an Arizonan, married to a wealthy friend of my parents. She’d already purchased every nip and tuck that plastic surgery provided. She took my hand and kissed me above an eye patch. “I know why God is giving this to you, Sally.”
I’d dismissed the notion that my problems were God-given, believing I had some unknown earthly disease. Still, I was drawn to this discussion. “Really?”
“Yes,” she said soberly. “You’re being punished for sins in a former life.”
Ah, that wicked former life of mine. I should have known it’d come back to haunt me. I only hoped I’d had ridiculous amounts of fun in it.
Soon, new problems arose. My sweet horse of a brother, now in the army, was being deployed to Vietnam. He moved his January wedding up to October. Three days from the ceremony, as I walked with my sister, Marty, to the last fitting of our bridesmaid’s dresses, I saw a pool of ink spread across the sidewalk. But the problem wasn’t outside; it was inside. From my left eye, the one I’d been able to read and drive with, I saw only motor-oil black on the bottom half of everything. My local ophthalmologist took one look and squeezed my shoulder. “A retinal detachment. You’ll have to go to Campbell. I trust only him to do this.”
Dr. Campbell in New York City, two hours away in good traffic.
“I can schedule the surgery Friday afternoon,” Dr. Campbell said. Friday, my brother’s rehearsal dinner. Unbelievably, I was going to miss his wedding.
Dad began to weep.
“I’ll stay with Sally,” Mom said. “And Bob, you’ll be at the wedding.”
“No,” I protested. “You both, at least, have to see Bobby get married. Carol and Susie will come.”
Since I’d been back east, two of my closest college friends had come from New Jersey every day that I spent in this hospital, just as Brian had in California. Reluctantly, my parents agreed.
After they left, Carol and Susie arrived, just in time for another check-up with the doctor.
“Can you fix this, Dr. Campbell?” I asked, something I couldn’t ask in front of my parents.
“Frankly, my dear—” he paused.
Oh no. Was he going to give me a Rhett Butler “don’t give a damn?”
“I don’t think so.”
I walked out, then, so determined not to cry that my nose clogged shut. Once in my room, Carol threw her arms around me. “Oh, Sally, I wish this were happening to me instead.”
All three of us hugged, and the tears rushed out. My amazing friends always let me cry, but they also applied subtle pressure with their expectation that I’d cope—whatever happened. Failure wasn’t an option.
So when Dr. Campbell did re-attach the retina, it was a great coup. But as the days passed in the hospital and the swelling diminished, I found less reason to celebrate. I could see only the blurred bottom half of things. I couldn’t read, and I wouldn’t be able to drive again. I’d become legally blind.
“What can I do, Dr. Campbell?” I asked before being discharged.
“Well, you go out and buy sunglasses with very dark lenses,” he began.
And a tin cup? “Excuse me?”
“As the hemorrhaging continues, you’ll develop secondary diseases, such as glaucoma, which will make your eyes less attractive. Eventually, your eyes will atrophy enough that you won’t be able to keep them open.”
Ugly eyes? Sigh. That was a real ouch to someone vain like me. Permanently shut, incommunicative. People always said I spoke with my eyes, that they brimmed with mischief or concern. Now they’d be silent.
But then I remembered. I needed training. Even I knew that was more important than what I looked like.
“Where can I get training? I mean, I need some rehab to learn how to function—this way.”
I couldn’t say the “B” word yet.
“I don’t really know, my dear.”
How could he not know? He was the last chance eye doc for everyone? Surely I wasn’t his first failed case.
My mom tried to cheer me up, unfortunately putting the focus on the appearance issue, too. As a coming-home gift, she presented me with seven pairs of sunglasses, all in different colors to match my outfits. She’d pilfered Dad’s pool sticks, and painted them each a different color to match those sunglasses. Good looks and athleticism had been highly-prized where I’d grown up, and I wondered now how I’d keep up the standard.
Appearance also came up with my California boyfriend. He had my life and his worked out before he flew east to propose. Sitting beside me on the beach, he said, “You’ve always been independent. This won’t change that.”
“How can you be sure?”
“I know you. Look. The school superintendant wants you back—if you can still handle the discipline.”
Yeah, well. Thirty-eight third graders? “That’s a big if.”
“You’ll find a way.”
We were silent, as I realized how fiercely I wanted to keep teaching. Then my mind pulled a quick escape, and I heard myself saying, “I have to figure out a way to renew my driver’s license. I don’t think I can pass a test now.”
“Hello-o-o! Don’t you think it’s safer to let your license expire?”
Lord, what was I thinking? How many other things hadn’t sunk in? “I probably can’t ski.”
“I’ll go off skiing or sailing with the guys. You’ll hang out with your friends.”
“Very tidy. So what activities will we share?”
He laughed. “Bedroom activities.”
Insert some serious kissing here.
“The doctor says my eyes will get ugly.”
He rubbed my nose with his. “Then I’ll put a bag over your head.”
So we escaped into denial, pretending that romance would see us through. But I walked from the beach, worrying. What hobbies could we share? Tom followed sports, not the symphony.
The first real step in confronting the challenges ahead came by way of my dad. He’d heard of a blind man and Braille teacher. Maybe he could tell me how to function blind. I entered his office the next day.
“Straight ahead,” the receptionist told me.
I lifted my chin and saw the door. I knocked.
I turned the knob and found a completely dark room. Spooooooky! And a real killer to my optimism. I sure didn’t want to be a solitary blind woman sitting in the shadows. With the light from the hallway and my head cocked, I could make out the man in sunglasses at his desk.
“I hoped you could give me Braille lessons,” I managed to say.
“I can lend you this book,” he said, tapping the large volume. “That tells you everything you need to know in both print and Braille.”
“Keep it as long as you need it,” he said. “How else can I help?”
“Well, I wondered if you have any advice for me.”
Before I could explain that I wanted training, he began, “Your father told me you were engaged to a sighted man. This is a big mistake. You can’t trust someone sighted.”
Aha! Just sit in a pitch-black office and avoid 99% of the people in the world. How preposterous was that? Well, at least I had a Braille book to study.
That evening I joined my parents for dinner with their closest friends. The husband was a stockbroker, paralyzed in the battle of Iwo Jima. He drove a car, played bridge, ordered his wife around like the Marine officer he’d been, and raked in money. As the resident intellectual in the valley where I’d grown up, he’d know what I should do.
“Okay,” he advised. “You find a job at Bucknell [my alma mater] and live in the dormitory on campus. The cleaning crew will keep your room spotless. You can walk to your meals there and not have to worry about cooking. Campus police are around, so you’ll be safe. Your recreation will be right there at your fingertips, concerts, lectures, etc.”
So tailor the world to meet my disability. Don’t tailor myself to meet the world. I was no fan of cooking or cleaning, but shrink my world? To a campus I’d enjoyed, but outgrown four years before? Much as I loved the man, his advice really stank. If a famous eye doctor, a Braille instructor, and a disabled man couldn’t give good advice, who could?
Apparently, my dad. From a different blind association, he heard of a Pittsburgh rehab agency for newly-blind adults. Over a fifteen-week program, I’d learn cane and Braille skills and how to perform daily tasks to function independently. Amazingly, the state of Pennsylvania would pay for my entire residential experience. Finally, the help I needed. But fifteen weeks? Sequestered away with a bunch of blind people?
During the interview, the assistant director gave me the agency’s philosophy. “We believe there are twenty losses accompanying blindness—“
Twenty more? No fiction writer could get away with this.
“Loss of mobility and reading, obviously, but also of spoken communication.”
My friends wouldn’t believe that anything could take away my powers of speech.
“Loss of physical integrity,” he continued, “of reality contact with the environment.”
“Of social adequacy and self-esteem.”
I sank lower in my chair, fighting tears. Ugly eyes and social inadequacy. What a charming future!
“Our program is designed to restore those losses so that you’ll re-enter the sighted world, work, and live fully.”
I couldn’t deny that this program could help. If only I could get the training each day and return to the refuge of my parents. But if I wanted this program, I’d have to sign up for the full residential package. And that package extended past August 9, my scheduled wedding date.
Ah, the wedding. Trouble was really smoldering in that little corner of my life. I couldn’t read my fianc�’s letters, so asked my new sister-in-law to read them to me. Tom’s letters became outlines. I realized they’d also dwindled when I heard my four-year-old niece ask, “Did Sally get a letter from Tom?”
Wow. How telling was that? Guess I knew how obsessively I’d been asking that question.
His phone calls increased, but I detected a bitterness I’d never known. “Why can’t these doctors do anything?” Or “This should be happening to all the miserable people out there, not you.”
Had he always been negative? We’d spent so much time with large groups that I wondered if I’d really known him.
He wanted me to fly to California and we’d go to Sun Valley, Idaho during his spring break. “You just need to get out here,” he said. “All the doubts you’re having are caused by this distance.”
Still, my misgivings grew. Talking to him one-on-one instead of in our customary gang of friends made me realize our differences. And not being able to see him made him, well, less attractive. How much of my ardor had been—face it—lust? And I kept judging him. When not in the hospital, I taught at a Job Corps Center, which was so meaningful. Tom taught, too, but the work seemed to constitute a pay check, not a passion.
Yet, how marketable would I be to anyone else on the singles scene—blind? So I headed out west. The romance of the first week ran into complications. When he described the beautiful snow-capped mountains, tears fell down my cheeks.
“Hey, if you’re going to do that, I won’t tell you about things.”
Uh, oh. Sadness morphed to anger. “I have a right to cry about this. If I can’t express the sadness to you, then what are you?”
He gushed with apologies, but we kept disconnecting. Blindness was changing me, not Tom. The handwriting was on the wall—not in Braille, but clear enough.
And if my feelings were cooling, he began to have ice cold feet. “Let’s move in together after your rehab. Maybe we should see how we work together before committing to a marriage, just yet.”
Made sense. Of course. That was reasonable. Except that I had become completely certain that it couldn’t work. I flew back to Pennsylvania and packed for rehab.
Though I never thought Tom was a villain, apparently Mom did. I learned much later that she wrote him a note:
“Time heals all wounds and wounds all heels.”
Yo, Mom! Nobody messed with Kate’s kids.
Although I didn’t realize it then, I think my decision to break the engagement was a turning point, freeing me to concentrate on learning the skills I needed now. I didn’t know if I’d ever marry, if I’d have kids, but I’d find a satisfying life. I headed off to intensive training, knowing that Brian, Carol, Susie, and my family were all rooting for me. I planned to pull this off. No, I’d conquer. I’d be the walking manual, the poster child, for how to be blind.
I traveled to the rehab program, of course, on a raw, drizzly, dismal day. Dad actually got lost in a town called “Dormont,” which sounded as much like dormant to be the symbol for my new life: inactive, slumbering. And when we located the agency, we were a day early. The building was echo-empty with a skeletal staff. This had to be a comedy skit! We sorted everything out, but journey, part two didn’t begin for twenty-four hours.
I sat in the lobby and tried to check out my new digs. At this point, I could see the bottom half of anything that was within a three-foot distance. Just as I registered the celery and beige d�cor, a boy sat beside me and rocked back and forth as if his stomach ached.
“What’s your name?”
I thought the question came from the boy, but he didn’t turn to me, just kicked the rocking into a higher gear.
“Are you talking to me?” I asked.
“Hm. That Gaelic?”
I laughed. He sounded eight, but I knew everyone in the program had to be at least 16. “What’s your name?”
Just then, a girl stumbled over my foot. I reached up and caught her elbow and, ah, her breast, not that I was aiming for that. I’d gone for the waist, but my pitiful sight was imprecise. She’d been walking with outstretched hands, flailing.
My heart didn’t just sink, it plummeted. In another month would I, too, be rocking and floundering around? The major stereotype of this minority group I’d entered was helplessness, not a coveted quality. I silently prayed that I could toss out values of looks and status—go for inner beauty.
“Get some confidence going here,” I told myself. “Remember going solo to Nantucket Island? Going solo to California?” Well, this rehab stint couldn’t exactly compare to those adventures, but first days were always the worst, and then I made friends.
“Miss Hobart? I’m your mobility instructor, Miss Zimmerman.” In a few minutes I pegged her as a military, no-nonsense person. For the rest of the day, she oriented me to the building. At the end of the week, she gave me a white aluminum cane. Very light and balanced and different from Mom’s clunky pool sticks, the cane seemed more violin bow than stick. She showed me the hand position, the gesture of scolding.
“Now place your elbow in your belly button,” she said. “Then touch, don’t tap or pound or slam the cane tip left and right—two inches beyond each shoulder.”
This was uncomfortable, and I’d known something of wrist, hand, and arm movement—I’d been a high school majorette.
“Hobart, you’re denting the tile floor.”
I gripped tighter and tried to soften my blows. After about four hundred hours, she ordered the foot action.
“Step with the left foot when you touch right. Now march.”
She actually used that verb. And I obeyed, stepping out in the most awkward, zombified walking of my life. Even at a year old, I couldn’t have been this off-balance. And at one year old my parents cheered. My instructor, however, laughed—uproariously. “Your feet don’t have to be wider than your shoulders, Hobart,” she said.
Ridicule was not something I took kindly. I’d been a water ballet star in high school and college. I might look hilarious at the moment, but I’d conquer and move with former grace, maybe even stomp on Miss Z. in the process. Jock reborn.
By the end of the second week, by deep concentration and, well, jockish persistence, I learned to use a cane—indoors.
“Sight used to be your primary source of orientation,” Miss Zimmerman said. “But touch and hearing, even smell, can substitute. You just have to trust them.”
With that, she began to teach me about echo location, where the noise of my cane or footsteps bounced off nearby objects, like walls. She taught me about facial vision, where the nerves in my face might sense nearby things, such as open cabinet doors.
From another teacher I took a daily Braille class, since I hadn’t been able to learn it on my own. Braille consisted of arrangements of six dots, smaller than grains of rice, and just as clumped together. The differences between the letters were minute enough that 19-year old Eric and David, my adopted little brothers, swore never to use it. My fencing opponent, Ken, who competed with me to see who bought sausage sandwiches and beer, simply swore.
By the third week I faced the outside, real world with the cane. Because of my residual sight, I had to wear occluders, unfashionable, rubber goggles with opaque lenses. Not only did they conceal the eye liner, shadow, and blush I’d worked so hard to perfect—inner beauty goals notwithstanding—they rendered me totally blind.
“Meet me out front,” Miss Zimmerman said.
I swung open the heavy lobby door and stepped through it, tapping my cane for sound and fury and anything else it could express.
“Sometime today, Hobart!” Miss Zimmerman called.
My insides lurched. Her sarcasm came from many feet below, beyond the killer stone stairs that awaited me.
I extended my cane. I had to find the edge of the top stair before I could overcome my legs’ paralysis. Ah, there it was. And somewhere there was a railing; it was there yesterday, so it should be here today, unless as some sadistic joke they had removed it overnight. Clunk. Found it.
“Hobart, get down here. I don’t have all day.”
I gripped the railing, prayed for survival, and descended the ten concrete steps.
At the bottom I jumped into the air and cheered.
“Finally.” Miss Zimmerman elbowed me, and I took her arm, hoping I’d had my last test of the day.
“Now you’re going to learn to parallel traffic.”
This consisted of my tapping along the street, listening for cars coming up behind me. When one passed and moved two car lengths ahead, I aimed at the sound of its motor. A second later, I had to forget that car and concentrate on the one coming up behind me again. This way I would theoretically walk straight down the sidewalk.
After a few days, I also learned how to cross intersections safely. I listened to idling cars, waiting to move in the direction I wanted to go. When the driver gunned his motor, I stepped off the curb. My light was green.
As the weeks passed, I became a demon listener (not only to traffic). I began to make sense of all the tactile clues, what my feet and cane were telling me. Of course, I had battle scars, smashing into telephone poles, falling off curbs. But in time, the cane became as familiar in my hand as a tennis racquet and baton. After eight weeks, my lessons moved into downtown Pittsburgh, where the stimuli increased five-fold—more traffic, more people, and taller buildings compressing the noises to sort out.
And so the weeks passed. Gradually, I learned to find the food on my plate, cut the meat, find my clothes, put make-up on, read and write and type and cook and clean, substitute swimming for tennis, and walk to various stores. I grew to appreciate every trainee in the program, even the rocker, Robert. From weekly counseling, which required a good bit of tissue, I regained my tender self-esteem and felt sufficiently adequate socially. The agency’s director offered me a teaching job, which I accepted. At our graduation party, he said, “Go and be good missionaries for the blind.”
“Convert, you sighted people!” Eric yelled. He and David began to play drums and guitar, respectively, and I sat down to accompany them on piano.
Then tough-love Miss Zimmerman came over and actually hugged me. “Make me proud, Hobart,” she said.
“I’m going to teach here in September. You’ll still be able to boss me around.”
“Oh good Lord,” she said and walked away.
Then, Ken made me dance with him in a dizzying rotation.
“Could we dance counter-clockwise?” I asked. “I’m getting nauseated.”
He took my hand and dragged me through the other blind dancers, many who had fallen in love during the program. “You shouldn’t insult me,” he said as we stood in the stairwell. “I won’t want to hang out with you anymore.”
I kissed his cheek. “Smell you later,” I said, using another of Eric’s lines.
He pulled me into a hug. “See you in September.”
I tapped down the steps, not knowing then there would be no September for Ken and me. My lovable, cynical friend died from kidney failure three weeks later. But that innocent, hopeful night I went to bed, as prepared as possible to re-enter the sighted world.
A month later, my parents delivered me to an efficiency apartment in the middle of Pittsburgh. Leaving me there had to be one of the hardest things they’d ever done. For the first time, I witnessed my mom cry, which was pretty unnerving. But I think they granted me this independence, knowing that they’d already endowed me with many essential gifts for managing my difficulties.
If my story were a novel, I would close here, possibly tacking on the following epilogue:
“Two months later, another hemorrhage took the rest of my sight. I taught for a year, then entered graduate school in social work. Just as I received my master’s and took a job, I met an English professor, Bob Alexander. We married, had two kids, and now have two grandchildren. Finally, I have published eight books and many articles, and I teach again. The nurse’s introduction of that talking book machine broadened me and sparked an entire new career, one that I would never have considered without first becoming a reader. So I’ve gained much from my disability. Is my life easier? No. But it is deeper and richer because of my journey.”