83 Narrative Ethnography

When I was three years old my parents took me to my first eye doctor appointment. It was routine, they didn’t have any concerns or reasoning to take me, other than it was what they had done with all their kids when they turned three. The optometrist noticed that something wasn’t right with my vision and referred me to a specialist two hours from my hometown.

I was sent to a pediatric ophthalmologist, where I was diagnosed with amblyopia. Amblyopia is reduced vision in one eye, caused by the incorrect development of nerve pathways between the eye and brain. In simple terms, I had really bad vision in my right eye and my brain would only use my left eye (my “good eye”) to see, ignoring my right eye completely. My vision was completely good when I had both eyes open. To help train my brain to use my bad eye, I was told to wear a patch over my good eye for six hours each day for an indefinite period. As a three year old, I didn’t understand the reasoning for wearing the eye patch.

With the eye patch covering my good eye, I was left with very little vision. I couldn’t see television shows or movies clearly, all I could see was blurred color and motion. It was hard for me to play with dolls or do anything because I couldn’t see and I would get frustrated. When I wore my eye patch at daycare I would cry and cry until I would fall asleep on a couch because it was hard for me to play when I couldn’t see. It was like looking through very frosted glass. I didn’t ever actually wear my eye patch six hours a day, at most I wore it twelve hours a week. I was a stubborn kid and I hated wearing that eye patch. Even as I got older, I tried to read children’s books with huge lettering while wearing the eye patch to try to strengthen my eye. This only would make me frustrated because I couldn’t focus on any letters or words through my extremely blurred vision.

At each eye appointment every six months from the ages three to twelve I was told I needed to keep wearing my eye patch to try to improve my condition, but after about the age of seven, I refused to wear that patch. When I was young and wore the eyepatch it was always tear soaked: wet, cold, and itchy against my sad toddler face. When I was older, seeing the eyepatch reminded me of being little, sad, and confused. My favorite eye patch was cotton and it slipped over my glasses. It was light pink with a unicorn embroidered into it and was pilled from many years of tears. I still have that patch and get sad when I’m going through my things and see it.

Beyond the eye patch traumatizing me, the bi-yearly eye exams were no better. I would have to wake up early and drive to the eye specialist two hours away. From the time I was five, I would get so anxious leading up to the appointments. I hated missing school, even at a young age and I hated going to the doctor even more. Half the time when we would go it would be winter. We would park in a big cold parking garage and take an elevator up to the 4th floor, the ophthalmology floor, a word that was too big for younger me to understand. We would check in at the receptionist’s desk and head to the waiting room. I would look out the big windows overlooking Lake Superior, with my stomach in nervous knots waiting for the appointment.

When a nurse would finally call my name, my nerves would only grow. For the first six or so years I went to the ophthalmologist I had the same nurse. His name was Kevin. Kevin wasn’t very friendly at all. He would have me sit in a big chair that towered over me with all sorts of scary looking eye measuring tools surrounding it. He would then put pictures on the screen for me to look at (as I got older letters were put on the screen, but before I could read I looked at pictures.) I could only ever see the pictures or letters with my bad eye when they were at the biggest size possible on the screen. Then Kevin would have me out on 3-D glasses and try to see if a picture of a fly’s wings “jumped out” at me. They never did.

After all of Kevin’s routine tests, the ophthalmologist would come in. His name was Dr. Shuey. Dr. Shuey would perform some similar routine tests and then give me eye drops to dilate my eyes. As he would try to put the eyedrops in I would squirm like a little worm and squeeze my eyes shut because the drops stung my eyes. Eventually, Dr. Shuey would end up holding my eyes open and get the drops in. Then, I would go back to the lobby where my vision would slowly get blurry from the eye drops dilating my eyes.

After my vision became fully hazy, Kevin would call me back to my exam room again. Dr Shuey would then put a big scary looking metal tool with lots of dials, adjustments, and lights up to my face. I would put my chin on a little plate and Dr. Shuey would adjust dials until my face was fully encased in this big tool. The metal on the tool was cold against my face. He would then shine a bright light into both of my eyes and hold a prism up to measure my eye.

Each appointment would end with the same conversation between Dr. Shuey and my dad. “Her vision nor her condition has improved. We have two options, you can continue to try to have her wear her patch six hours a day, or we can try surgery. Surgery wouldn’t guarantee change, nor would it correct her vision, but it could help her eye muscles align to wear they should be.” Dr. Shuey would say.

“I don’t want to do surgery, we will continue patching.” My dad would say, and we would be finished with our appointment.

Most of the time he let me go shopping for whatever I wanted after each appointment because I hated going so much. One time I bought a (very ugly) new suitcase that I was so excited about, it was a purpley-maroon suitcase with rainbow dots covering the whole thing. Most of the time I just wanted a new stuffed animal or a few new shirts from Justice. And we always went to my favorite restaurant after each appointment, finishing off the meal with a piece of homemade red velvet cake with ice cream.

I went to these appointments until I was twelve or thirteen, dreading each one the same. As I got older, I learned to understand my condition and that because I didn’t wear my patch as much as I should’ve, the vision in my right eye was a lost cause. My vision couldn’t be salvaged by glasses or surgery, I would just have to live with it. When I was about thirteen, Dr. Schuey announced he was retiring and said that I could see a new ophthalmologist if I wanted, but beyond surgery to help the muscles in my eyes align for cosmetic purposes, there wasn’t much that could be done for my eye. So, I stopped going to these appointments.

I purposely avoided mentioning this earlier, but my amblyopia causes me to have a lazy eye. I don’t like talking about it and very rarely tell people this is the case, because if people haven’t already noticed it, I don’t want them to know it exists. My lazy eye wasn’t very noticeable when I was young, but when I hit puberty my vision in my right eye got even worse, and with it so did my lazy eye. In about sixth grade people started pointing it out. They’d say horrible things “Audrey, your lazy eye is lower than your IQ.” and “I can’t even tell where you’re looking.” Comments like these immediately put tears in my eyes (and I am not a sensitive person)! I became very insecure about my eye. I didn’t feel pretty because of it.

When I was fifteen I started to get double vision. I would be looking at a person and see two of them, or at a whiteboard in class and all the words would be doubled. It first only happened every now and again so I decided to brush it off and not tell anyone. I didn’t want to have to go back to the ophthalmologist, but soon it started occurring daily and while I was driving. So, I decided to tell my parents and they took me back to the same hospital I had gone to for nine years of my life for ophthalmology appointments. This time, I had a new doctor. She was young and very kind, her name is Dr. Wang. Dr. Wang had a whole new team of very caring and kind nurses who didn’t intimidate me like Kevin did.

Dr. Wang, like Dr. Shuey had, offered me surgery. She told me that the surgery could help fix the double vision and align my eyes to fix my lazy eye. I made the decision to get the surgery even though my dad was hesitant about it. Within three months of my first appointment with Dr. Wang I had my surgery scheduled for the Christmas break of my sophomore year of high school!

I was very nervous in the couple months leading up to my surgery, but I knew the results were out of my control and I had to put my full trust in Dr. Wang and her surgical team. The day of my surgery I had to wake up at five in the morning to get to the surgery center, two hours away, by eight that same morning. My dad drove me down. It was a very snowy morning, the roads were bad, but it was four days before Christmas and the fresh snow left me feeling hopeful. Fresh snow, a fresh start to my confidence.

We got to the surgery center and I got all checked in, put on my surgical gown, and was prepped for surgery. A purple “X’ was put above my right eyebrow to ensure the correct eye was operated on, I was given an IV, and Danny, the anesthesiologist, wheeled me back to the operating room. While getting wheeled back, I felt pretty calm. I was in high spirits with hopes for good results. While wheeling me back to the operating room, Danny asked me questions about how I was going to spend my Christmas, and soon the anesthesia ran its course and I was out like a light.

The next thing I knew, I was waking up. My eyes were covered with a cool, damp rag. I heard a nurse talking to me, I don’t remember what she was saying. I was still very groggy. I then felt myself getting wheeled around and heard the dinging of an elevator. Then, I heard my dad’s voice. I still hadn’t opened my eyes, I didn’t want to. Eventually I pryed my eyes open. It wasn’t an easy task. My right eye felt glued shut, it was crusty and bloody and really hurt. The room was too bright, I quickly but gently closed my eyes again.

Within two hours of waking up, I was released from the surgery center. My eye was feeling alright, until the next morning.

The day after my surgery I woke up and didn’t want to open my eyes. My eye was again crusted shut with blood. It took me over thirty minutes to build up the courage to open my eye. When I finally got it open I was slapped in the face with pain. The surgery required a muscle in my eye to be cut fully apart and then sewed back together TIGHTER. Not only the fact that my eye muscle was cut in half hurt enough already, but then was sewed back together to be pulled tighter caused extreme pain. The worst pain of my life so far.

It hurt to move my eye at all, I couldn’t look around, and light hurt my eyes. So for three days straight, I sat in my room in complete darkness, with my eyes closed, and I listened to podcasts. I didn’t have an appetite because of the pain I was in, so I didn’t eat at all. I didn’t shower for those three days either because I didn’t want to have to look at myself in the mirror to brush my hair, my eye was a bloody mess.

My fourth day post-op was Christmas and I finally started to feel a little better. I was able to be in a room with the lights on, I took a shower, and I worked up an appetite to eat Christmas dinner. Each day got better after that, and by two weeks post-op everything was pretty much healed. My lazy eye was fixed and I didn’t get double vision anymore! My confidence sky-rocketed and I became so much happier. I didn’t have to worry about people being able to tell who I was looking at in a crowd, didn’t have to get made fun of, and didn’t get double vision anymore.

Two years later though (the present), my lazy eye has started to come back, as well as my double vision. The surgery didn’t work as well as it should’ve. I get insecure while taking pictures because I don’t like seeing my lazy eye. Dr. Wang says I can get surgery again if I want to, so I probably will within the next five years if my eye gets any worse. It’s disheartening for sure, and the thought of going through the recovery for my surgery is scary, because I know it is the worst pain I have ever been through. But, at the end of the day, I am grateful for the two years I have had with an improved eye and the connection I got with my dad through going to all those tough appointments together.