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They say eyes are the windows to the soul. It’s something you’ve probably heard again and again. Yet behind the windowpane of my left eye there was a leak. The leak pushed against the glass. And the pain was nearly unbearable.
I was diagnosed with Coats’ disease when I was eight years old. Basically, the blood vessels around my retina leaked fluid and scarred my retina, gradually blocking my vision.
I can’t remember when I started to lose my eyesight, but it was sometime in elementary school. My mom noticed I was squinting quite a bit. And I remember the pressure building up behind my eyes until it was too much to bear. I spent many nights on the bathroom floor in tears.
After being diagnosed with Coats’ disease I had monthly doctor visits to get needles in my eye. Yep, you heard that right. Needles. On each visit, the doctor held out a long needle containing corticosteroids which was supposed to help control inflammation.
My mother brought my younger brothers to my appointments as moral support. They watched in horror as I resembled a squeezed stress ball with my eyeball bulging as the needle penetrated the squishy eye tissue.
The needles did not help. Nothing was helping. Life was so intense then and I couldn’t focus on anything else. I needed to take medicine four times a day, including eye drops, and a pill that made the world spin. My vision in the diseased eye deteriorated like fruit left out in the sun. I was in pain and my eyesight rotted until all I could see were shadows.
Over several years, I had three surgeries to remove the scar tissue that was wrinkling my retina. None of it helped. My dark brown pupil had become sickly and polluted, it was now a painful grey. Murky veins ran like waste-water rivers across the white of that eye. My window was cracking. It had to be cut out of my house.
I was excited to get rid of it since that meant I could get a normal-looking prosthetic eye and I would be free of pain. I hated the way my eye looked almost more than the pain it gave me. I just wanted to be normal. I just wanted to fit in. I was sick of all the stares and questions.
I frequently missed school for doctors’ appointments and struggled to focus on homework as the pain was a pounding beat in the back of my head that never stopped.
My mother looked at me like I was a wounded puppy but I was wounded in ways she would never understand. She knew I was in pain and that hurt her, but she couldn’t feel the agony. My brothers were also uncomfortable when they would see me in pain. When you’ve never had your own eye collapse on you like an old building you can’t really empathize. Still family members tried their best to comfort me. My grandmother took me out to dinner. My mom would hug me and tell me it was all going to be okay.
But, at 18, and during my first semester at university, my eye removal surgery took place.
The recovery was hard. My eyelid was swollen for a whole week. I was still in a lot of pain. I had to take so many painkillers and steroids. Yet once the swelling had gone down and the healing was done: No more pain.
It was awkward to walk around without an eye. And I noticed the pain had returned, but taken on a new shape. It was no longer a physical pounding but a realization that I would never be like everyone else. I couldn’t control this with medication. It followed me everywhere. I needed to find an outlet. So I turned pain into humour and art. I wore eye patches. I put my hair over the space where my infected eye once was, called myself “emo” and made jokes.
Within a month, I was happy to visit a special doctor who makes prosthetic eyes. She made a mould that fit the shape of my eyehole. Then she sculpted it and painted it to look exactly like my other eye. It was a freeing experience. All the shame about the fact I would never be like everyone else began drifting away.
When the new eye was placed in my head, I was smiling and giddy as I took so many pictures of my face. I felt like the window to my soul had been fixed. I had another eye made that has a butterfly where the pupil sits. It makes me feel free. I feel like I’ve turned my suffering into art. It’s become self-expression. I wear my butterfly eye for special occasions to make me stand out.
I’ve come to realize that standing out is not a bad thing. I embody my pain as freedom.
I’m learning to accept who I am. The one-eyed girl. The window to my soul isn’t screwed up it’s just custom made.
Bella Melardi lives in Toronto.
