“I am sorry Kylie but there is no other choice, you need surgery.”
I knew it. I had an eerie feeling on that brisk January morning that something was not going to go my way and, sadly, I was right; I desperately needed eye surgery. I had been battling Juvenile Myocilin Glaucoma, a rare eye disease that only affects about 25 individuals in the United States, since the young age of 12. This disease raises the pressure in one’s eye causing damage to the optic nerve and permanent sight loss. I had lived for years off of all medications known to optometrists, until finally my body grew tolerant. I needed surgery and I needed it fast.
My disease required two surgeries (one on each eye). The first surgery, on my right eye, took place on January 29, 2020 and was as smooth sailing as a procedure could be. I was up and back to normal within two weeks (a miracle in the eye world). Sadly; however, the same cannot be said for my second surgery.
On February 25, 2020, my second surgery, on my left eye, took place at 8 am on the Surgery floor of the Iowa City Hospital. I was given an IV and put under for several hours of intense operation. Once brought to a hazy consciousness, the doctor informed my family and I that the surgery had presented more difficulty than the last, resulting in higher levels of trauma. While the surgery itself required persistence, the battle truly began with recovery.
I was ordered by doctors not to raise my heartbeat, workout, bend over, sleep flat, sneeze, cough, rub my eyes, or wear contacts. My eyes, my once favorite physical feature, were now filled to the brim with deep, red blood and a large and inflamed pupil. This resulted in constant stares from strangers and very, very blurry vision. Sadly, that was not the worst of recovery.
One chilly March night, the slight aches that had been present in my eye for a month became more prominent. Quickly the throbs turned to unimaginable pain. It felt as though a sharp knife was being dragged in and out of my left eye. The pain caused me to go in and out of consciousness for minutes at a time while screamed and crying in agony. My flesh burned and my head felt as though it was going to explode. I begged my parents to stop the pain and get some sort of help. My mother spent the night on a heated phone call with the doctor, trying to get me relief before the morning; however, we were informed that we needed to wait until the hospital opened to receive aid. In the meantime, I took large amounts of my prescribed pills and eye medication in an attempt to end the living hell. The mass amount of drugs put me into a deep slumber after hours of sobbing and throwing up due to the uncontrollable pain.
As early as the hospital opened, my mother and I were on our way. The pain had eased in the morning and I could once again think clear. The night before had felt like an awful nightmare. Once inside the eye clinic, my doctor reviewed my eyes and took my pressure. What she had to say next was something I would never forget.
“Kylie, your vision has been saved through these surgeries. They did exactly what we wished they would!”
I was quickly overcome by a sense of relief. The surgery, and its anything but fun recovery, had truly been worth something. The pain I had felt the night before was my eyes attempt to drain the blood and begin to heal; however, that did not mean that my eye was anywhere close to being back to normal. The road to recovery was long and far from easy. I spent all of my free time battling my thoughts. Would my pupil and eye ever look the same? Would the pain I had once felt come back? Will I ever be able to do what I once enjoyed again? I wanted to feel a sense of normalcy again. I yearned to workout, to be able to sneeze without hurting my eyes, and most of all I wished to be a regular teen again with no care in the world. I failed to understand why God chose me for this battle. I became miserable and a shadow of who I had once been. I felt as though I was being held back from a life of joy and laughter as there was nothing I could do without endangering my eyes.
After weeks of living my life in hope of change, I was done. I was fed up with feeling sorry for myself and realized that no one else had control over how I felt. I could either make the most of my time, or I could watch my life pass by, day by day. I became grateful for what I had been given. I was one of the luckiest people to have been diagnosed with Juvenile Myocilin Glaucoma, as 100% of other patients had lost some form of permanent sight loss. I, on the other hand, had caught my illness early enough and was exposed to the best doctors in the world resulting in my ability to keep all of my eyesight. I was blessed, and I knew it. So yes, it did suck having to go through something most 17 years olds would never have to worry about, but I had no choice. I could either feel sorry for myself and live in sorrow, or I could see how lucky I was to be healthy.
I learned to live with what I had. Despite my blood filled eyes and long list of restrictions, I found my groove. I made deep and everlasting friendships, meant the love of my life, and found new confidence and a feeling of worth. I felt in control and proud of the person I was shaping into. I stopped begging for each day to pass and started to look forward to waking up every morning.
My entire experience with my eye surgeries has been one that no one else will likely ever have to face, but I am truly, truly thankful for it. It allowed me to reach a level of happiness that I was unable to obtain pre-surgery. My battle has made me the strong, powerful, and confident woman I am today. In life, I have no control over what happens to me, but I do have the power to control how I react!