One beautiful, early spring day in New York, I exited Grand Central an crossed 42nd Street walking downtown on Park Avenue. In the midst of the morning rush, several blocks in, I hear an enthusiastic voice calling out to me, “Well hello there, it’s nice to meet up with a fellow white cane traveler!” I smile and turn to reply, “Hello to you, it is lovely to meet you, and your cane.” I introduce myself and Edward Hirsch does the same. As a point of reference, he mentions the guest essay he wrote for The New York Times, in 2023. I say, “Of course, I know it well.” The title of the piece, “I Am Going Blind, and I Now Find It Strangely Exhilarating,” is a hook. It compels you to find out, what does that mean?
Ed’s vision loss is caused by retinitis pigmentosa (RP) an inherited retinal disease. His eyesight was changing at what seemed a relatively slow and manageable pace, until a couple of unfortunate incidents indicated it was time to consider a new approach. His first step is to reach out to Lighthouse Guild, in New York for help. The confirmation of legal blindness opens a whole world of programs and services, including an advocate, low vision specialist, ophthalmologist, computer specialist, cane training and home visits. Ed says “Daily life has a renewed delight and vigor,” and “Now that I signal my disability with a white cane, I find that I have tapped a well of visible kindness.” And he enjoys stopping other cane users (like me) on the street to say hello.
So you see, it’s learning to live better with vision loss that Ed finds exhilarating. Two years later, he follows with, “How I Learned to Be Blind,” for the Wall Street Journal, confirming that his exuberance is holding.
Edward Hirsch was born in Chicago in 1950. He is a renowned poet and critic who wrote a national bestseller How to Read a Poem and Fall In Love With Poetry.. He has published nine books of poems, including The Living Fire: New and Selected Poems, which brings together thirty-five years of work, and Gabriel: A Poem, a book-length elegy for his son that The New Yorker called “a masterpiece of sorrow.” He has also published five prose books about poetry. His newly published memoir My Childhood In Pieces, a stand up comedy and Skokie elegy. Since 2003, he has served as the president of the John Simon Guggenheim Memorial Foundation.
Congratulations to Gia Pergolini for delivering the first Team USA gold medal at the 2024 Paris Paralympics. Her first place finish, in the 100 meter backstroke, was her second consecutive gold medal in this event. In Tokyo 2021, she took gold and set the world record. In Paris, Gia also won silver in the 50 meter freestyle. More about Gia below, in video and in conversation.
Gia Pergolini wins FIRST AMERICAN GOLD of Paris Paralympics | NBC Sports
Read original post from NOV 18, 2021…
Many rise to the challenge of vision loss, but very few break world records and earn gold medals to prove it. Gia Pergolini did, in the 100-meter backstroke, as a member of Team USA at the Tokyo Paralympic Games in August 2021. At seventeen, she certainly showed us how it’s done. Gia set her sights on gold and was prepared for it by a competitive swimming career that began at age five. Along the way she picked up two silver medals and broke four world records. A visual impairment would not deter this world-class athlete.
Gia’s world record setting gold medal win in Tokyo and interview at Retina Society 2021
I spoke with Gia one Saturday afternoon following her swim practice and was particularly interested to learn more about her point of view. Here are the questions I asked, followed by the answers, in her own words.
How do you explain or describe your visual impairment to someone?
“I usually just say, in the simples words as possible, because I don’t know what good vision is. I explain, I can see, but it’s very, very blurry. I can see who is in front of me, but I can’t tell what eye color they have, or if they have makeup on, or not. I also say that I have blind spots in the middle of both my eyes and if I position my eye in a certain way, I can actually see the blind spots.”
The visual impairment Gia describes is the result of Stargardt Disease, a macular degeneration, causing progressive central vision loss while leaving peripheral vision in tact. She was affected from a very young age.
What are the technologies you use everyday?
“Obviously, I love my computer and my phone, I think those go hand in hand. Just the ‘zoom in’ features on my phone, especially nowadays a lot of my work for school is online, so my Mac and Apple phone can zoom in. The ‘zoom In’ feature on my iPhone has saved my life. I did not know that existed until my friend, Anastasia Pagonis, (and roommate at the Tokyo games) actually taught me this. And I use my Zoom Mag video magnifier, if I have to take tests or quizzes at school.”
You have benefited from the services of CVI,Center for the Visually Impaired, in Georgia, how did they help?
“They were super helpful. Not a lot of the teachers at my school were educated on this, they didn’t have a student like me. CVI reached out to them and explained what was going on and told them what they could do to help me in the classroom. They showed me new technology the would also help me in the classroom. They were just hugely helpful because they were there to help guide my parents through this weird and confusing time.”
How do you find the accessibility of your schoolwork today?
“It has improved a lot, CVI was so good that I found what worked for me and I just stuck with it. Now in the classroom I just need my video magnifier and the computer and I’m all good. I’m at a place where I’m comfortable in the classroom.”
Vision loss is often misunderstood by people not experiencing it, what would you like them to know?
“ I think they should just keep an open mind and listen. I feel that is the best advice you can give to someone who is not educated on something. Try to be in that person’s shoes, veer from stereotypes, because not everyone who is ‘blind’ has dark glasses and a cane, or uses a guide dog.”
What advice would you give about dealing with a visual impairment?
“I would say, there is always a way to work around things. It may not seem fair, but you can get so much out of it with positivity. Like my sport, I would not be where I’m at without my visual impairment. So just look at the bright side, and I know it might be tough, but if you need help find someone to talk with or find an organization that can help. There are many resources online”
Gia Pergolini sets an empowering example for people of all ages. Find the things that work and practice to improve your ability. There is so much we can learn from, and teach, each other. Help elevate awareness, and educate others, to the fact that people are often visually impaired, even though it’s not visible. Most important, if you need help, get it.
Vision: A Memoir of Blindness and Justice by David S. Tatel
David Tatel achieved great success as a civil rights attorney and a circuit court judge, while also dealing with the significant challenges of progressing vision loss. I was first introduced to Judge Tatel by Frank Bruni, in a NY Times column titled, “Am I Going Blind?,” and again in his memoir, The Beauty of Dusk. I got to know David even better thanks to Ricky Enger’s wonderful conversations with him on Hadley Presents podcasts. But through David’s recently published biography, Vision, A Memoir of Blindness and Justice, I have gained a greater perspective and appreciation for his extraordinary life.
The diagnosis of retinitis pigmentosa, at age fifteen, would neither stunt his intellectual growth nor diminish his personal expectations. He did not allow the impending blindness to define him. He expresses some regret about covering up his vision loss, until he began using a white cane in 1980. In this context, David can be assured, the cover-up is no crime, it is a normal part of the process. A far more compelling part of this story is how David’s family and colleagues step up, with quiet and loving support, naturally lending their voices to fill the visual voids he encounters.
Vision loss is, in some respects, a subtext throughout Tatel’s story. His life’s work is focused on advancing civil rights and ensuring equal justice for all. He opens, to us, a captivating narrative of his historic role in the judicial system. He conveys the steady demeanor we hope to find in every judge, that of patience, humility, integrity and courage. You may not think you have much in common with David Tatel, but you will be surprised to discover that you do.
In this Washington Post video clip: Tatel talks about the discussions he and wife, Edie, had in the writing process and the revelations that were part of learning to deal with and accept his blindness.
Thanks to Michelle Ritholz for recommending the audiobook and sharing her review on AudioFile Magazine. She says, “In his introduction, which Tatel narrates, listeners can sense the spectrum of emotions he describes.” Read the full review here.
Launched in 2017, the OE Patients online magazine was created to provide an added level of information and resources, not typically available in the physicians office. It’s all about living better with vision loss, and focused on practical tips and encouraging advice related to Adjusting, Technology, Health, Wellness and Voices of Experience. This collection of ten top OE posts, is a representation of the topics most searched on the web. Please feel free to share with friends, family and healthcare professionals.
1. Hottest Low Vision Gifts
These are the best gifts to give and to get! We’ve included gifts that everyone wants and gifts that are priceless. So go ahead and give someone, or yourself, something nice.
Gift Box With A White Ribbon In Female Hands. Gift Giving. The Woman Gives A Gift. Birthday Present.
3. Accessibility Support Phone Lines You Should Know
A coveted list of specialized support with an emphasis on accessibility, including Apple, Amazon, Microsoft, Google and 12 more. When you need help call an expert.
Yellow road sign for “Support” with clouds on blue sky in background
7. Accessible Workouts for Visually Impaired People
Exercise is good for eyes, in this compilation of accessible workouts are strength training and feel-good exercises, accessible equipment, eyes-free audio guides, and wonderful tips on the topic from our friends at Hadley.
Group of mature adults in strength training session
Amazon’s much loved voice assistant will read Kindle books to you, or play your Audible books, just ask. It’s an easy and independent way to enjoy a good read.
10. Try a New Approach to Reading Restaurant Menus
There are many ways to overcome the challenges of menu reading and continue to enjoy the culinary and social experience. Think less about reading and more about selecting something delicious!
Man reading restaurant menu options to his dinner companion
Insights & Sound Bites is a wonderful opportunity to learn from others what helped them most in the process of coping and adjusting to vision loss. The sound bites are audio recordings, each just a few minutes in length, sharing the power of personal experience. Log in any time you want and listen as often as you wish. Hear the voices of vision loss on topics that include, moving forward, coming full circle and finding perspective. In essence, it’s a word-of-mouth sharing session and access is available whenever you need it, no limits in time or attendees.
Douglas Walker hosts Hadley’s Insights & Sound Bites
This collection of bite-sized podcasts is about giving as well as receiving. The host, Douglas Walker, ends each segment with an invitation to take part with a contribution of your own. The message says, “Was there something that someone said to you or something that happened along the way that made all the difference in the world in helping you adjust to living with vision loss? We‘d love to hear from you if you’d like to share with us, just leave us a message on our Insights & Sound Bites voicemail by calling, 847-512-4867. Or, you can use your smartphone or computer and email us a recording to: [email protected]. Again, my name is Douglas Walker. Take care and I’ll see you next time.”
The team at Hadley knows how to deliver meaningful and supportive content for people with vision loss. Hadley Presents: A Conversation with the Experts, is the original and ever-popular podcast, hosted by Ricky Enger. For tips on Adjusting, Daily Living, Working, Technology and Recreation, log on to HadleyHelps.org. Join a wide array of monthly Discussion Groups on topics of your interest: What’s Cooking, Travel Talk, Tech It Out, Embrace Braille, Writer’s Circle, Crafting Circle, Book Nook, Resource Roundtable and Hadley Growers. You can even speak live to an expert or have content mailed to you.
In this post we aim to share reporting from the web that aligns with the purpose and spirit of OE, keeping our readers inspired and informed to live well with vision loss.
ADJUSTING
Dan uses a probing cane to explore the terrain
The Inspiring Story of Blind Skater Dan Mancina
Dan uses his experience to motivate others to follow their dreams despite the obstacles and challenges. He started a fundraising campaign and both the land to build the world’s first accessible skatepark, designed for people with vision impairments. Read Now on Surfer Today.
Josh Miele photographed at home
A Year After Life-Changing Award, Berkeley Inventor For the Blind is Writing a Memoir
Josh Miele was awarded a prestigious MacArthur Foundation fellowship, also known as the Genius Award. He was named Distinguished Research Fellow in Disability, Accessibility and Design at the University of California at Berkeley, his Alma mater for both undergrad and PhD. He has continued his work for Amazon, designing a more inclusive experience online. He’s starting a nonprofit to advocate for more accessible software, and he’s working on a memoir with former NY Times Metro Editor, Wendell Jamieson. In the midst of all this attention and activity, Josh says he’s still as “disorganized and procrastinative” as ever, which should give us all hope. Read Now on Berkeley Side.
Photo of family creating memories on world tour
Canadian Family Taking World Tour Before Children Lose Vision
When 3 of their 4 children were diagnosed with retinitis pigmentosa, Edith Lemay and Sebastien Pelletier began planning a global tour, for their family, to help the children build visual memories, resilience and a sense of comfort in the world. The parents say the trip has opened their eyes in so many ways. Read Now on CNN.
Theresa climbing
Eyes in the back of my head! Meet the blind woman fearlessly scaling walls as high as London’s 180m Gherkin
This woman knows how to push the limits of vision loss. “Theresa Osborne-Bell, 41, cannot see her feet when she stands up, yet scuttles up sheer climbing walls with the agility and certainty of a squirrel – loving every minute of the freedom the sport gives her.” Read Now in Yahoo News.
Molly Burke wearing white dress with puff sleeves and full skirt
Meet Molly Burke, the social media star busting myths about blindness
“Molly Burke loves fashion, tattoos and makeup, so people sometimes don’t believe she’s blind. But Burke believes that what people wear is part of self-care and self-expression and that everyone should be able to enjoy fashion.” She is the role model she never had and is working to change the way society views blindness. Read Now on NBC.
TECH
Graphic image of character in wheelchair crossing an iPhone ramp
How to Make the Most of Your iPhone’s Accessibility Features
A wonderful introductory guide to Apple’s Accessibility where you can adjust an array of settings to improve the user experience in terms of vision, hearing, and touch. You don’t have to have a disability; it’s available and good for everyone. Read Now on Vox.
Star birth image captured by James Webb telescope
Alt text helps the visually impaired experience the James Webb Telescope images.
A team of scientists, writers and educators worked together to add vivid descriptions to the spectacular images captured by the James Webb Space Telescope to help people with vision loss appreciate the detail. Read Now on NPR.
Siri icon with text: New in IOS 16
Everything New with Siri and Dictation in iOS 16
With this software update, Siri will insert emojis, hang up calls, announce notifications, and even pause a little longer while you finish dictating a message. Dictation now adds automatic punctuation; the microphone icon is moved into the Messages text box. And there’s more. Read Now on MacRumors.
Characters roaming around a cyber amusement park Maze in which some sections are blocked by obstacles Image credit:The Verge
Accessibility Week – The Verge
We know accessibility can both delight and disappoint us. The Verge turned the spotlight on both sides of this coin with a week filled with articles to explore the ups and downs. The subtext: “Technology promises a universally accessible world — and only sometimes manages to deliver,” introduces a wealth of articles on making the most of the accessibility features in iPhone, Android, Mac and Windows. There is an article on the magical possibilities in iPad, a look at the failure of ride-sharing for people with disabilities and more. Read Now on the Verge.
HEALTH
Woman removes headphones from child Image credit: Getty
5 Tips for Preventing Hearing Loss Caused by Headphones
Wearing headphones, earphones, earbuds or AirPods has become the most common accessory on adults and on children as well. Unhealthy volume levels will cause permanent damage. The buds that go into your ear and seal out noise are the worst offenders. It’s all about awareness and prevention. Read Now on ZD Net.
A man wearing helmet, standing with bike
Exploring Fitness for People Who are Visually Impaired
Many excellent and encouraging ideas for staying active and healthy from the Wisconsin Council of the Bind and Visually Impaired which includes advice for those who prefer to walk, run, bike, swim or work out at home, with a trainer or in a gym. Read Now on wcblind.org.
VOICES
A selfie of Paul with Sydney harbor in the background
How I Fought for My Career After Becoming Legally Blind
A beautifully inspiring first person account of one man’s step-by step effort to recover his confidence and his career. He enlightens and educates his employer and colleagues in the process. Read Now on SBS News, Australia.
Heather hugs her two young daughters
My Daughter’s Visual Impairment Taught Me to See Past My Fear of the Unknown
The title of Heather’s story speaks for itself. Upon learning of her baby daughter’s visual impairment, she felt overwhelming grief and distress. As she began to educate on vision loss, the most comforting lesson was “about others who are visually impaired but continue to lead full lives.” She also gained “a beautiful new perspective.” Read Now on CBC News.
OE Editor, Dorrie Rush looks right toward camera and smiles
2023 Letter from the Editor
It’s 2023, happy new year. The number boggles my mind, for so many reasons. Since 2020, it seems we have been living in an altered universe. Although the hope was life would eventually return to normal post-pandemic, deep down we knew things might never be the same. A stark reminder that you don’t know what you have until it’s gone. The lost sense of normalcy and need to accept and adjust felt oddly familiar to life with vision loss
As age 65 approaches, I am compelled to look back, 33 years, to the start of a life changed by progressive vision loss. Having known only 20/20 vision to that point, it was hard to understand what was to come. The questions far outweighed the answers. I feared total blindness as I was simultaneously encouraged to believe there would be a cure in the next 10 to 15 years. Three decades later, neither cure nor blindness has become a reality.
Although my vision qualified as “legal blindness” 20 years ago, the terminology is misleading. My visual acuity has not been recorded with numbers for a very long time; instead my eyesight is reduced to absurd classifications such as: counting fingers and waving hands. This deceptive language insults my intelligence and my eyesight. At the very same eye exam, when I say I cannot read the forms they are handing me on a clipboard, they say, Oh, you don’t look visually impaired.” I reply, “Yes, I do, this is what visually impaired looks like.”
The fact is, I am still able to type this article into a computer and see the words magnified on screen. I have never stopped working or felt the need to declare myself disabled. The fears I felt early on did not come to fruition. My life was changed, but not interrupted or devastated. It would be more accurate to say, it has given me purpose. By sharing my experience, I hope to convey a better understanding for everyone touched directly, or indirectly, by vision loss.
Communication on this topic is anything but clear. The OE post titled, Surprises Contained in the White Cane, brought up a pervasive ignorance about the cane. We heard from too many visually impaired cane users being called out, in public, for faking blindness. Some have been accused of faking sightedness because they do not use a cane. I tell someone I have not seen in several years about my recent adoption of the white cane; they ask, “Can you see anything? Do you have light perception?”
Skewed perceptions perpetuate stigma. As I said in the white cane article, “It’s a conundrum, of poor public awareness caused by inaccurate terminology, and a correction is long overdue. Vision loss is a spectrum, and that deserves a better understanding.” Let’s not make it any more difficult than it has to be.
Celebrate OE Patients 5th Anniversary with this special collection of our top 5 hits in each category: Adjusting, Accessible Tech, Health and Voices. Our pages are filled with practical tips and encouraging advice that empowers patients to live better with vision loss and to believe there is much that can be done to improve quality of life, even when medical treatments do not exist.
ADJUSTING
Nate Berkus fixing up a blue pillow on a couch in a living room.
Nate’s Low Vision Makeover
Make your home easier on the eye and safer to get around. Read Now
Dahlov Ipcar “Sunlight in Forest Glade” (unfinished, 2015)
Artists Work Through Macular Degeneration
AMD need not be a career ending injury for these visual artists. Read Now
Woman practicing eccentric viewing.
8 Ways to Practice Eccentric Viewing
When central vision fades, peripheral vision can compensate. Read Now
Image shows restaurant menus.
Try a New Approach to Reading Restaurant Menus
Don’t let a menu stand between you and your meal. Read Now
Image shows a red passport in hands.
5 Keys to Comfort for Visually Impaired Travelers
Take the anxiety out of travel with a bit of advance preparation. Read Now
ACCESSIBLE TECH
Blue accessibility graphic overlaid on image of smart phone.
10 Things to Know About iPhone
Here are the features that make it easier to use an iPhone with vision loss. Read Now
Older couple, with laptop, on phone with accessibility support.
Accessibility Support Phone Lines
Bookmark this page, it’s an inside guide to technical support for people with vision loss. Read Now
Two female coworkers working and looking at computer monitor.
5 Ways to Make Your Computer at Work Easier to See
An adjustment or two, can keep you working productively. Read Now
Savvy senior woman happily using smartphone.
Your Smartphone is a Comprehensive Low Vision Device
No need to carry external vision aids, it’s all in your hand. Read Now
Smiling woman listens as smartphone reads to her.
The Freedom of Speech
When reading is a challenge, learn to listen. Read Now
HEALTH
Fresh vegetables and fruits spread out on a gray table.
We pay tribute to our longtime colleague and friend, Bernie Landou, who passed away at age 90. He was a veteran of the United States Military and served in the Korean War. He spent several decades working professionally in the business of public relations and enjoyed recounting his legendary assignments and encounters with celebrities. Upon retirement he indulged his love for fine cuisine by attending the French Culinary Institute in New York. He enjoyed sharing his skills to impress friends and family and went on to teach inmates at the Rikers Island Correctional Facility, to cook.
Bernie was affected by age-related macular degeneration and rose to the challenges of vision loss, with the support of his partner of 50 years, Dick Leonard. He became a volunteer with the Association for Macular Diseases at Manhattan Eye & Ear Hospital. He answered phone inquiries and requests for information and contributed to the quarterly Eyes Only Newsletter. He loved helping others with useful tips for daily living and low vision friendly recipes. His volunteer service, with the Association, led him to assume the role of Editor for the newsletter in 2007, then President of our Board of Directors in 2017.
Bernie Landou at 85 and as a young man in the US Military.
We applaud Bernie Landou for his years of enthusiastic service to people with macular diseases and low vision, as he found his own way with increasing vision loss. He possessed a sharp wit and a special gift for stating the obvious. He pointed out, as we were about to launch this website in partnership with Ophthalmic Edge, that “nobody knows how to spell Ophthalmic,” and he was right. We shortened our website name to “OE Patients” to resolve that conundrum. Thanks Bernie!
Here are 6 of Bernie’s articles, originally written for Eyes Only, now published on OE.
Choice Magazine Listening
Choice Magazine Listening
A precursor to audible magazines, established in 1962 for people with vision loss.
The 60 Minutes profile on Freeride skier, Jacob Smith, totally consumes your attention. Freeriding means he skis jagged cliffs, deep chutes, and rough rock walls. That would be impressive enough for anyone, but Jacob is 15 years old, legally blind and skiing against sighted competitors. Once you meet him, you will not forget him.
The story includes Video of Jacob, a few years earlier at the age of 12, dropping into the Big Couloir, a rocky 1400-foot line that descends on a 50-degree pitch. He became the only legally blind skier to successfully conquer this legendary slope at the Big Sky Resort in Montana. It felt so satisfying, he repeated the risky run four more times that day and has not stopped taking on these types of challenges since.
Watching Jacob ski provides little indication that he has severe and blurry tunnel vision, no depth perception, and a visual acuity of 20/800. He proves you can compensate for what you cannot see, with what you can feel. But that’s not all, he also has a trusted and experienced voice guiding him through every turn, it’s the voice of his dad, Nathan, on a two-way radio. It’s not an always perfect scenario and mistakes are made, “But his adaptation is pretty amazing,” says Dad.
Competitive skiing is a family affair, and the Smiths were not about to leave Jacob behind following years of treatment and multiple surgeries, beginning at age 8, to eradicate the brain tumor that took his sight. His siblings Andrew, Preston and Julia say most people who see him ski do not believe he’s legally blind. He does not request or receive any special accommodations at Freeride tournaments and wants to be treated normal, that’s why he competes with sighted skiers. The only real fear he has is “not succeeding.” He says, “No matter what comes at you, there is always a way to adapt, to make it happen and still do what you want to do.”
Watch Jacob Smith: The legally blind 15-year-old freeride skier on 60 Minutes.
The light was changing from amber to red when I turned left onto Main Street. My stepdaughter and I were on our way to a workout on a rainy Saturday morning. From the passenger seat of my trusty Subaru, she screamed — at what, I did not know.
Although we made it through the intersection without hitting an oncoming car that I did not see, our hearts were racing before we hit the gym. On the way home, I wondered about the car’s fitness, but the sudden mechanical failure turned out to be mine.
A few days later, my eye doctor stopped examining me, picked up his desk phone and speed-dialled the head of ophthalmology at the university. “There’s someone you must see right away,” he said.
On Dec. 1, 2011, I received a diagnosis of Stargardt disease, an inherited retinal disorder that affects central vision. Genetic testing showed that my mother carried the mutation, and my father contributed a common variant. One in 10,000 are afflicted with this rare condition, which often presents in childhood. I was lucky to have reached the age of 50 before I had to give up my keys. But I was in shock.
Since the first day behind the wheel of my father’s Ford truck when I was 14, I knew that driving would be my portal to other worlds. He wanted me to gain skills early and comprehensively. What better way than in the old ’48, with its manual transmission and well-worn body? With an enormous shift on the column and a clutch the size of a discus, it took all my strength to wrestle the gears, and of course my timing was poor.
I stalled often at first, while my father sighed and whistled “I Can’t Get Started.” On a dozen springtime Saturday mornings, I practised in the flat, empty pasture at my grandfather’s farm in rural Illinois. After finally finding the rhythm from first to second and then to third gear, it was time to advance to reverse. “If you need to back up, it’s hard to see where you’re going,” my father — who had been a soldier and a prisoner of war — said with unusual gravity. “You need to feel it.”
My father was resilient in this gear. This trait was my genetic inheritance from him, and a defining one, as I would come to appreciate after my diagnosis.
Once I mastered reverse in the hulking Ford, I drove my own car with confidence and what I might call desire. In the Midwest, roads are long and straight, with great distances between things. I wanted to feel the pedal under my foot, getting me to a new place under my own power.
That feeling persisted throughout my life. Working as a classical music agent, I once sped 200 km/hr in a Mercedes sedan through the night in the Swiss Alps to deliver a cargo of artists to a gig on time. The independence I felt whenever I turned on the ignition filled my whole body with energy and a taste of freedom.
“Seeing is believing,” the saying goes. What could “not seeing” mean for someone who loved driving as much as I did?
Blindness is a simple, unemotional word for most people — either a descriptor, as in “blind audition,” or, more often, a metaphor, as in “love is blind.” When sight loss actually happens to you, “blindness” becomes a full-body garment, custom made to conform with every contour of your inner and outer frame. It inflects you in a way that is incomprehensible to the sighted world as it influences your movements and interactions. How do you respond to your beloved if you cannot see his face? How do you, as an English major, cope with no longer being able to read? And how do you make sense of your changing self? No other sensory deprivation is so personal and laden with mystery. No one says “hearing is believing” or “smelling is believing.” No, only seeing is believing. Not seeing must be believing something else.
Getting to that something else now occupies the second half of my life in a way that, like the other car at the Main Street intersection, I couldn’t see coming. Like becoming aware of unconscious beliefs, it is a matter of bringing to light that which is not visible. This takes courage and imagination, but after the initial shock I have become aware of hidden resources to be tapped. Over time I have found that the sense of loss and vulnerability brought on by decreased independence can lead to a heightened appreciation for new ways of connecting to others and the world.
John M. Hull, a university professor of religious education who was blind, put it this way: “Should I begin to think of myself as a person disabled by a defect but empowered by a capacity?”
Hull spoke the question into a cassette tape recorder, his only means of writing in 1986. His book, On Sight and Insight, is a transformational account of vision loss. It helped me reframe the experience and develop creative and resourceful strategies to maintain relationships and work. The concept of a new-found capacity requires both inner and outer efforts. For me, this has involved everything from analyzing startling dream imagery, to memorizing regularly travelled routes and landmarks, to attuning my musical ear to pick up nuances in people’s voices and modulating my own in response.
Above all, acquiring skills in assistive technology has been like taking that pasture-driving course all over again. It is a matter of putting fear aside and practising a new transmission. Today there is a virtual showroom of “vehicles” used by people who are blind or partially sighted. Smartphone technology and screen readers now allow for a dazzling variety of applications, in which auditory information is activated by touch and thus provides access to written material at a terrific pace. I can shift through these gears at speed, and if I wander into a blind alley, there are keystrokes for reverse. Reading is well within reach.
Everything speaks now — Alexa, ovens, doorbells. It is no longer stigmatizing to walk around talking to yourself on the street or having your phone talk to you. This is now normal. The game-changing remedy for being blind or partially sighted — “accessibility” — is an accepted gear for the general population. This being the case, never again shall the words “nothing can be done” be used by any eye-care professional when surgical procedures or drug therapies may not be available. Much can be done, and the delivery system — already preloaded in “Settings”— is likely right there in the pockets of both the patient and the practitioner. It takes only a willingness and curiosity on the side of both parties to engage in this exploration of vision rehabilitation. This is the best time in human history to lose sight because patients now have another way to be independent.
I feel fortunate to have received guidance at a vision rehabilitation clinic, as well as services from the CNIB Foundation and a support group established by the Foundation Fighting Blindness. Every patient should be so lucky, but many suffer silently when this life-changing transition is not fully appreciated or addressed by physicians. Early guidance and referrals can create a road map to vision loss that is not a dead end but instead offers promising pathways.
Professor Hull coined a phrase that speaks to me and may resonate with other patients who experience sight loss: “whole-body seer.” As reliance on other senses increases, awareness of the whole body is enhanced. Hull writes, “A whole-body seer is someone in whom the specialist function of sight is now delivered upon the whole body and no longer specialized in a particular organ.”
Such a concentrated state of being may offer as heightened a sensation as driving. Indeed, I have noticed increased awareness and pleasure in all kinds of weather, and a deep desire for nature. With support, I have been able to accept and explore the complexities and the progression of my low-vision condition. I have not been tempted to get behind the wheel again. The day I unwittingly risked my stepdaughter’s life — and my own — shut that door for good. But I’m no longer experiencing the situation as demanding a shift into reverse. I’ve picked up a new set of keys to unlock this new life of mine and am finding my way to somewhere else.
Footnotes
This article has been peer reviewed.
This is a true story.
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Reference
1 ↵Hull JM. On sight and insight: A journey into the world of blindness. London: Oneworld Publications; 1997.Google Scholar
Upon opening his eyes one morning in October 2017, Frank Bruni finds his vision has changed. Making his morning coffee, he pours boiling water into a french press, but much of it misses the carafe and spills onto the counter. When he sits to transcribe an audio interview on his computer, he quickly discovers he’s having trouble making out the words as they appear to wobble on the screen. He wonders if it’s probably caused by the lingering sleepiness from the late night before? In the shower he tries to wash the fogginess out of his eyes, before going on with the days activities, “beating back any inkling of alarm.” This is the beginning of the story that is The Beauty of Dusk On Vision Lost and Found.
He sees an ophthalmologist and undergoes an arsenal of tests. Doctor #1 thinks it could be multiple sclerosis (but he’s wrong) and sends Frank on to a neuro-ophthalmologist. She repeats the arsenal and upon analysis renders a diagnosis. The vision loss in his right eye is most likely caused by a drop in blood pressure as he slept, resulting in restricted blood flow and causing a stroke of the eye, which damaged the optic nerve. The medical term for this condition is “non-arteritic anterior ischemic optic neuropathy,” also known by its acronym NAION. The bad news gets worse: there is no treatment. And if that’s not enough, there is one more thing, the doctor says there is a 40% chance it could happen in the other eye, (but this is not right either). The statistical risk is actually 20%, which is to say there is a definite chance he could go blind.
Image of Frank Bruni, credit NY Times
The mostly horrific and overwhelming news includes one hopeful thread, the doctor tells Frank there is a treatment being tested in a clinical trial, however he’d have to move fast to qualify for participation. He does exactly that, jumping through all the requisite hoops. He soon finds himself being prepped for the first dose of medicine to be injected directly into his eye. The way he describes this shot in the eye is palpable, “like a splash of acid delivered with a heavyweight’s punch.”
Instead of running away from the fear, he runs toward it, deliberately and with purpose. As “one eye closes another opens.” Frank Bruni begins to see the magnificence of human beings in a way that was not quite as clear before. He recognizes the inner strength, we don’t even know we have, until it kicks in, carrying us through the often abrupt and sometimes enormous challenges we are dealt. His clarity is sharpened by the many conversations and interviews he engages with old friends and new acquaintances dealing with adversity. It turns out if you talk about it, even in your own social circle, you will discover people you know, are dealing with more than you knew.
The Beauty of Dusk is about overcoming adversity with a sense of grace. It’s about finding our way through difficult times with a semblance of gratitude. It is about the human spirit that bonds us. Frank Bruni’s memoir comes at a time we are all in need of recovery.
