Alison's Story 

When we got back to my parents, I was crying. Not because I was scared. At that point I didn't even know what was happening.  The social worker who had given me a tour of the hospital had been very kind. I thoroughly enjoyed seeing the glass floor in the ophthalmology department. The large rectangles of opaque, blue-green glass, although they were not the clear glass where you would feel as if you were walking on air of my imagination, had been mesmerizing nonetheless. The herd of fierce bronze elk bugling and pawing at the asphalt beneath their hooves in acknowledgement of those pulling into the parking lot had delighted me. I wasn't even fazed by this foreign experience of being in the care of anyone but my family.  No, I was crying because Casey the Elk (who really looked more like a moose if you ask me) in his miniature denim overalls with the Casey Eye Institute logo on the breast pocket and black wire rim glasses had a patch. It ruined the intended placating effects of the stuffed animal. The elk/moose had a circle of black cloth over his left eye and it made him look like a pirate. Pirates were scary. They were meant for boys, not Hanna Andersen clad four-almost-five year old girls.

So they took it off and everything was fine. Casey was fine with his two, visible eyes but as soon as you took one out of the equation with an ugly patch he became an undesirable, lesser toy.  This became a slight problem for my poor parents. They knew that while Casey could just take off his patch and turn back into a normal, although rather ambiguous, cerividae, I could not.  They could not simply take off my patch and make my eye come back.  There would be nothing under my patch but a clear conformer to keep the shape of my eye socket for several weeks until it had healed enough to get my permanent prostheses.

We ate dinner at Grandma and Papa’s house every night that week and we did all the things that were supposed to happen at Grandma and Papa’s. Each night after the ivy green table cloth that was smooth and cool under my soft, warm hands had been cleared and wiped off with a damp washcloth that smelled like the pool in the summer time, Grandma would give me a bath.  I would climb up the stringy oatmeal carpet stairs and into the bathroom and there would always be the foamy soap that sprayed out of the can like whipped cream. It looked like whipped cream but at this stage of my life, I had long since learned that it did not taste anything like the sweet, white foam that hissed when Aunt Kayla sprayed it into my mouth when Mom and Grandma weren't around.  And after my bath, there was always a thick warm towel and the smooth, blue oil that smelled like grandma and was not, I was assured, the same oil we used when we made cupcakes. Then I would don my pajamas and someone would carry me to the car where I was buckled in and driven home. When we got a few blocks away, I would pretend to be asleep so that someone would carry me in and put me into bed.  Lately, however, this hadn’t been my own bed.  Instead, I got to share with Mom and Dad would sleep on the couch or the floor or wherever he slept for the next couple of weeks when no one had the heart to make me go back to sleeping alone.

I guess I knew, even at that point, that something wasn’t quite right. We did go up to my grandparents quite often but not every night.  Perhaps it was that night that I woke up with more than a scary dream and cried and cried while Mom held me and I held my head with my small hands or the trip to the doctor’s office with everyone turning off the lights and shining a bright needle of light into my eyes and shouting at me to “Look at my nose!”or the gold, slimy gel that felt like the goop we had made one time at daycare that they rubbed all over my cheek with a stick attached to a computer that gave me a clue. But it wasn’t until the day that we sat in the corner of the living room by the shelf designated for my many picture books and read a new book that I really understood. 

The book wasn’t very good.  It was about a boy who had a sick eye that had to be taken out so it wouldn’t get the other eye sick. The doctors in the book simply took it out after giving the boy medicine to make him sleepy. But the worst part about the book that it seemed to suggest that I was like Tommy or Johnny or whatever the boy’s name was. It made it sound as if after they had poked me repeatedly with needles, given me another stuffed animal and made me drink icky pink medicine, that they had taken out my eye. And then, when I looked up tearfully at my mother, I realized it was true. I realized why I had the metal plate over the eye that I hadn’t used to see with for weeks. I was Casey the Cerividae.

The next couple weeks proceeded as normal. I went preschool with the colorful, patterned patches that Grandma had made with fabric scraps and contact paper. I wore my pink sparkly patch to the first day of ballet, played with my dog in my rainbow one and got my first school pictures taken with the cloud patch.  I got to wear circular, pink glasses and no one said anything about my patches that I can remember. Then, one day we got in the car again and drove on the big road and went over the cris-crossing bridges and saw a man named Kevin.  I didn’t know that Kevin was my ocularist as I sat in the waiting room and played with the Lego table they had in the corner. This office was so different than the other waiting rooms I had seen over the past few months. For one, it didn’t smell overly clean. It had a thick, warm smell that was much closer to that of a house than to a doctor’s office. The biggest difference, though, was Kevin himself.

When Kevin came into the waiting room and greeted me by name, he looked at me differently than all the other strange adults I had seen. His face didn’t contain pity, curiosity, confusion or panic. Instead, he just looked so normal. He didn’t appear overly eager to meet me but, at the same time, he was welcoming and kind. When he led me back into one of the small, blindingly white rooms and I sat across from him in a spinning office chair as he meticulously painted my iris onto the small white prostheses and painstakingly pulled apart silk threads to make the tiny veins, I wasn’t frightened. He wasn’t touching my eye or pulling my eyelid back or putting in eye drops or shining lights at me. He talked to me. We talked about my dog and my pony named Bunny, for his love of carrots and his rather bouncy gait similar to that of rabbits. He even did a magic trick where he made the eye disappear and reappear in his other hand that he promised he would show me once I turned thirteen. And then, it happened.

“What do you want me to paint on the top of it? I always put something on top so you can tell which way is up when you put it in.  I could do like a heart or a flower or an animal.”

This was the first and perhaps the only time I had a choice in the entire process. He was asking me what I wanted. And maybe I didn't realize it in my four-year old mind, but when I choked out, “Can I have a heart”, I was really doing so much more. I was saying how grateful, whether I realized it or not, I was for a choice and the chance to regain the independence that I had worked my five years of life to gain. It would take months to move back to my own bed, get dropped off at preschool without crying, adjust to the lack of depth perception fully, understand that I will never see a 3-D movie and even longer to give up the hope of being good enough at volleyball and basketball to play in high school and to be able to fully explain to complete strangers that I yes I had cancer when I was five and they had to remove my eye but not to be sorry.  But right there in Kevin’s office, at the moment, I was on my way. The simple selection of a simple symbol gave me power over my life.

I left the office that day after the tearful process involving candy and the promise of Ronald Dollars (redeemable at any McDonald’s location) of getting my new eye properly installed with a smile on my face.  I didn’t have to wear the patches anymore and this eye was just as comfortable as before.  And, even after the horribly loud and upsetting experience of accidentally removing the prostheses during circle time, I liked going to see Kevin and I still remember that first visit. In fact, I have yet to redeem the Ronald Dollars and, come to think of it, I should ask him to teach me that magic trick.