Yes, dear readers, this is an extra post, coming to you in the middle of my regular schedule of posting every eight to ten days … and this one has nothing to do with nature.
Why this, why now? I’m not sure. I guess I want you to know me better. I’ve noticed that the Substacks I enjoy reading the most are those where I learn something about the author, something that gives me a sense of who that person is and what their life is like.
Also, I’m exploring the topic of trauma and disability for a memoir I’m starting to work on. I have a lot of thoughts rolling around in my head, and they need to come out. They need a test audience. Would you mind being my laboratory?
If you’re willing, here's what I want to share with you.
A month from now, I’ll be getting a new eye. I just booked my appointment. When I hung up the phone, a few tears surprised me.
This is an emotional process that happens every few years. And somehow I forget, from one time to the next, just how emotional it is. I forget the vulnerability and grief it brings up – again and again.
When I say I’m getting a new eye, I mean the scleral shell that covers my blind right eye. A scleral shell is not a “fake eye” or a “glass eye,” to quote the phrases most people use (phrases I hate, by the way). Full artificial eyes are bigger than scleral shells. They’re worn by people who’ve had an eye removed due to injury or disease.
I don’t need a full artificial eye, because I have an eye. I’m considered one of the “lucky” ones whose eye wasn’t removed. But the eye I have is shrunken and ugly – and sightless.
The accident happened 60-plus years ago. It was one of those moments of inattention that echoes across a lifetime. In the literal blink of an eye, I went from normal binocular vision to viewing the world as a “monocular.”
I see the world, but not in the same way you see it.
The prosthesis that covers my blind eye fools a lot of people. They tell me they didn’t realize I am half-blind. Or they say they noticed one eye is slightly different, but they can’t quite tell what’s wrong. For the most part, I can walk around masquerading as a person with two normal eyes.
My ocularist deserves the credit for that.
Ocularists, in my opinion, are the unsung heroes of the medical world. They’re a rare breed – incredibly talented artists who create masterpieces but never become famous. Their work doesn’t hang in a gallery or a museum. You won’t see their art being auctioned for millions of dollars.
What an ocularist does is fashion a lump of acrylic into something so closely resembling a human eye, hardly anyone can tell the difference. For someone like me, it’s a lifeline. Without this person and their skill, I doubt I’d have been able to accomplish anything I’ve done in my life. I would be a recluse, hiding myself and my hideous eye from the world.
For millions of monoculars, what an ocularist creates for us is the difference between disability and normalcy. Thanks to them, we can live our lives with a reasonable amount of confidence. We can go to school, we can interview for a job, we can speak in front of an audience, we can shake someone’s hand and look them in the eye.
We can fall in love, and be loved.
Even so, we can never quite forget our defect, our differentness.
Every five to seven years, it’s time to have a new prosthesis made. Scratches accumulate on the acrylic shell, causing constant irritation in my eye. As I age, the shape of my face changes, my eyelids droop more. The old eye needs to be replaced with a new one.
Over the many decades since I got my first scleral shell at age 10, I’ve visited several ocularists in several states. Finding a new one each time I move is scary. How do I trust someone – and pay them several thousand dollars – to create something that will be my window on the world?
How do I know this person is as skilled as my last ocularist? If they’re not, I’ll be living with the results -- the disappointment, the embarrassment -- for years.
This is not a pair of pants you return to Amazon if you don’t like the way they look on you.
Next month, I’ll be trying out a new ocularist in North Carolina. Their office is a four-hour drive away. I’m nervous. I hope I’ve chosen well. I hope this person knows what they’re doing. My self-esteem rests in their hands.
If you’re interested, I will share the experience of getting my new prosthesis with you here on Substack, in photos and words. It’s fascinating to see ocularists painstakingly create a human eye right in front of you.
Their hands are steady, their paintbrushes tiny, their attention to detail astounding. The process takes an entire day.
My friends, thank you for reading this far, if you have. I sincerely appreciate it. Writing about my eye is difficult. I didn’t talk about it for the first half of my life – my entire childhood, teenage, and young adult years.
It was a secret I hid in a closet of shame.
One of the reasons I want to write more about my eye now is that I’ve come to realize I’m not alone. I know there are many people like me who struggle to live with a disfigurement of some kind, a disability that strikes at the core of how they feel about themselves.
None of us live in a perfect human body. Those of us with visible disabilities understand that all too well.
This is my story, but it’s also many others’ story. Maybe even yours … or maybe someone you know and love.
Wow! Thank you for sharing this. I would never have guessed from zoom. As I read this I almost cried thinking how much this shaped you into someone who focuses on seeing beauty. What a beautiful post - this is one of my beautiful things for today.
Powerful and heart-opening. Thank you for this, Jeanne.