About fifteen years ago my father was diagnosed with an eye disease called macular degeneration. Macular degeneration causes loss in the center of your field of vision whereas the retina has begun to deteriorate. There are two stages: dry & wet. The first stage is dry and it can stay that way for a very long time . . . or not. In my father’s case, he had 15+ years before the wet stage set in. The wet stage is characterized by bleeding and growing blood vessels near the retina that blocks its ability to see.
When he was first diagnosed, he couldn’t tell us — his children. I think he and my mother kept it a secret for close to six months. I know how painful that admission must’ve been, for over the next decade and a half, I watched him deteriorate from a very able-bodied man to someone with nar a desire to live. He was angry — boy, was he mad at the world. For the first time ever, I saw my parents fight. And he was mean. Kudos to my mom for snapping back. I knew where it was coming from but happy the burden wasn’t landing on me. My mother is his rock and like my daughter with me, I know what it is like to have the person you love most in the world take out their pain on you. They know no matter how hard they push, the rock ain’t moving.
My dad had been an engineer and a craftsman of precision aircraft parts. He worked to the .0001 cm in measurements. His eyes were greater tools than his hands. He taught me all I know about building and fixing things. Now, a nail and a hammer can no longer strike with accuracy when in his hands.
My father came from meager beginnings: an alcoholic abusive father, shabby clothes and beans from a can. He graduated from a trade school and married my mother, had five children and provided us with a privileged life. His businesses were successful: we had glorious vacations, private school educations and personal cars. The only thing I longed for was new ski equipment EVERY year. He taught me how to be self-sufficient with skills from caring for a car to gardening & lawn care to fixing a sink. Honestly, I can’t think of anything he couldn’t do.
To take that ability away from a strong man can be crushing. And it’s painful to watch.
However, I didn’t anticipate how I would react to the onset of the second stage.
With the second stage, blindness is inevitable. At this point, he had lost his sight in one eye. This announcement came a few years ago.
First, I was incredibly sad. But then fear hit. There is a genetic aspect of this disease. Oh my gosh, what if I lost my eyes?! As a photographer, my eyes are everything. It’s bad enough that I need glasses to see the LCD screen.
Fear for me but also for my dad & mom. She has been his caretaker. What if something happened to her? How was she handling this?
For 16 years, we have done a family holiday in the Outer Banks of North Carolina. 20 crazy family members (+ some stragglers) in one big house. It is as chaotic (and loud) as you may think. I often opt out of these shenanigans but felt I must be there this time, for I did not know when the last time my father would be able to see me. The events that followed were the same, I always had an obligation to go. The tugging on my heart of what if?
{obx family holiday}
Again, not anticipating my reaction to this deleterious stage, I was seriously struggling.
The one thing I do well is show people the world and all its beauty. With the aid of my camera, I capture images to show one what it is I see. Feeling so helpless in a situation like this, I decided I would go document the world and send it back to my dad for him to see, before he no longer could.
My first jaunt was to Europe – 12 countries in three months: Aurora Borealis in Iceland & Norway to meeting long lost relatives in Germany to solitary time on La Gomera and then to the Scottish Highlands. Schengen time expired so I returned to tour the USA. The following year I embarked on Asia: trekking the Himalayas to lying on a Thailand beach to tuk-tuk rides around Cambodian temples. Photographs by the thousands with fascinating tales to accompany each one. I became my dad’s eyes.
Dad has been receiving painful injections in his one eye every 4-5 weeks. An attempt is being made to slow the progression of the bleeding in the eye. Just writing about this gives me the willies. By some good fortune, I was granted permission to photograph this procedure. Remarkably, hiding behind my lens kept me calm and somewhat uneffected. I will admit some time transpired before I found the courage to bring them up on my editing monitor. It was there I wept. He is awake, his eye is open and there is a needle plunging into his eyeball . . . every five weeks just so he can kinda see.
Asking him about how it first presented itself, he would tell me stories about the street lamppost missing a section or thinking he was seeing a flock of birds but they actually were floating specs across his eyes. A few years ago he decided it was no longer safe to drive. A visual hallucination occurred when he was behind the wheel (basically his mind tricked him into seeing something that wasn’t there). Charles Bonnet syndrome can happen to Macular patients, but the doctor told me it’s usually with patients that are still sharp-minded. A small consolation, Dad. You’re losing your eyes, but not your mind.
I began this personal project with my dad’s journey from light to dark and it became something I would love to share with other families experiencing this disease. My photographs are somewhat graphic, so I chose not to display them all here, but would happily share them if it would benefit in any way.
All I know is that I am seeing this man in a different light. He’s always been a pillar of strength, a hard worker & hard-headed, driven, protective, funny and a great provider.
{Papa and his girls}
Oh my this is just heartbreaking. My friend if 30+years, was diagnosed with it years ago. Hers has now prigressed also. Plus she has recently been diagnosed with Early onset Alzheimers which is progressing. Just breaks my heart. Thank you for sharing your dad’s story. Bless him
I am sorry to hear about your friend, Donna. I’ve been working on a personal project about my father’s journey with this disease in an effort to possibly assist patients & their families with information. Perhaps knowing a firsthand account can calm fears and educate. Reach out if there’s anything I can do.
And thank you for your kind words.
~dailyn
I had a great uncle, Bill Ptolemy who had to deal with this eye disease. He became legally blind and struggled with daily living for a number of years. He looked into chelation therapies early on but thought it was useless. But one of the things he always looked forward to, until his passing at the age of 90, was bowling! He knew the 10 spots at the end of the alley in his mind and went for the pocket. And if any pins were left standing, his buddies would yell out the pin numbers. Many know the joy of a strike but I remember watching and hearing the JOY of a spare, recorded by “the blind guy!”
I was touched by your dads eyes and felt compelled to comment and buy a couple of prints. Happy trails!
What a wonderful way to find joy when life throws you challenges! Thanks for sharing the story.
I’m so glad it was inspirational and it sparked a desire to buy art. I appreciate your purchase, thank you.
What an hour this has been.
Somehow semi random I stumbled into your story about your dad, and I wonder how it continued? What a great support to give him a third eye through your eyes and camera. Becoming blind has always be even my biggest fear. So often the look from my parents or a smile by a stranger have impacted my life in such a positive way. It is sad to read about the way you describe the change of your dad … while I and many of us probably feel with him. I am looking back at my parents – and still do right now while thanking you for sharing your story. My dad died the year before you wrote this and my mom died 9 day later. They were my rock. When I moved to the US, the connection never got weaker, my mom and dad even became travelers, remarkable for a woman who had never taken a flight before!
Thank you, Ralph, for sharing your story. I am touched that you were moved by mine. Three years ago, I serendipitously found myself at my parents house. I was able to spend some quality time with Dad; actual precious moments. From there, I went adventuring — a solo backpacking trip, followed by a solo canoe trip, where I almost died. It’s a remarkable story that I will share here one day. I survived to find out Dad was dying. If one were to write a script about how they would want to lose a loved one, this was it. I was there for his last breath. When I first arrived a month earlier that he said had lived a good life, was now almost blind & had no desire to live that way and was in constant pain (the tumor that they had yet to discover). He was ready to say good-bye.
Now I take his ashes with me, scatter him in places I would like him to “see”.