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}