My Story of Becoming Beautifully Blind

By Robin Ennis

Have you ever had a time in your life when you felt nothing but complete utter loss, fear, uncertainty, and sadness? Well, I have, and it is a time in my life that I will never forget. For me, it all started in 2002; a year that brought me much pain and heartache. I would have never guessed that a slight change in my vision would be the beginning of a new chapter in my life. It was a hot day in May of 2002, when I noticed that I was having difficulty seeing the mouse on my computer. My Mom made me an appointment with the optometrist for the following week. However, my appointment had to be moved up because the sight in my right eye began to rapidly decline even more than the vision in my left eye. I didn't know why my vision was declining, and all I could do was wait in anticipation.

The day for my doctor's appointment finally arrived. I sat there in the chair while the optometrist shined a bright light in my eyes. During this time my mind was blank; I didn't know what to think or feel, but I knew something was wrong by the doctor's nonverbals. After what seemed to be a century, the diagnosis was given to me and my parents. The cause of my vision loss was due to hemorrhaging behind my eyes. As the days proceeded, I would learn that my new diagnosis was brought on by an increase in intracranial pressure. I should be happy that there was an answer to my problem, right? Wrong. Although, I received treatment, I was still losing my sight. Baffled like me, many medical professionals could not explain why the deteriation was still occurring. So, week by week, I literally watched my sight deteriorate before my eyes. It was scary and heartbreaking to say the least. I would engage in daily rituals to distinguish between how much vision I had, compared to previous days. Some days I would cover one eye to see how much I could see around me, while other days I focused on a focal point that I had established. Within a little over one month's period, I went from being able to see the eye charts to barely being able to count fingers.

I was often told that my sight would come back, it just takes time. I built up a false sense of hope and dreamt that my vision would return. But when it didn't, it felt like my dreams had shattered into a million pieces and there was nothing I could do to stop them. I had dreams of returning back to school for my sophomore year, and most importantly being roommates with my best friend. I dreaded making the phone call to my best friend to notify her that she would have to find another roommate; it was a sad day. Not only did I cry that day, but I later learned that my best friend cried as well. My question moved from why was my vision declining to why me? I cried a lot that summer.

In the early to middle part of July, I saw another medical professional who had an idea that might stabilize my vision. The treatment worked; no more declining vision. Not only did the treatment work for my eyes, but it also taught me a lesson. I learned that sight or not, I should be grateful for what I do have in my life, instead of focusing on what I don't. I gained this perspective by listening to other patient's positive attitudes and personal disclosures. In addition, it was during this time when my mom limited my negative self talk to only a few times a day. If I exceeded that allotted number, I had to do a favor for my mom. Let's just say that helped me think positive real quickly.

Well, the end of the summer approached, and my vision was still stable. After the stabilization, I found out that my optic nerves were severely damaged. With optic nerve damage or Optic Atrophy, if a person is to gain any sight back, it is usually within a six month period from time of treatment. Optic Atrophy is one of the main causes of permanent blindness. My window of six months was constantly in the forefront of my mind as the time passed with no visual improvements.

As December rolled around, not only was it a time where people were about to bring a close to the year, but for me it marked my deadline. It was a time when I was told that I would not gain anymore vision back. I had to come to terms with my new reality; one without sight. After hearing the news, I cried. But, with the support of my family, I continued to put one foot forward by living my life the best way I could. This meant that I had to adjust to vision loss, and one way of doing this was through the purchasing of my first white cane. At this time, my white cane was a symbol of the unknown and unexpected, but soon it would be my companion.

Adjustment for me not only meant dealing with the situation at hand, but also maintaining some of my usual activities. For me, returning back to school, connecting with my peers, and continuing my usual routine, was a form of therapy for me because I was able to go back to doing something that I enjoyed. School allowed me to work towards my goal of helping others.

Going back to school one year after the loss of my sight, entailed improvising; not only was I learning from my professors, but they were learning from me as well. In a lot of my classes, I was the professors' first blind student. With this in mind, there was a sense of collaboration between myself and some professors to ensure that my class experience would be as beneficial to me as my sighted peers. To enhance my educational experience, with the permission of the professor, I tape recorded the lectures so that I could later type my notes. I typed my notes on my computer, which has a screen reader called window eyes, and if there were any handouts, I would scan them to be read. I received my books on tape and in scanned format from the disabilities office at my school.

My educational experience as a blind student consisted of more time and hard work as usually anticipated. However, I finished my undergraduate and graduate degrees with not only learned knowledge, but lived experiences that have forever impacted my life. I must say that the unwavering love, devotion, and time bestowed upon me by my family, was the support I needed to accomplish my goal in attaining my degrees. For my parents, it wasn't a matter of if I would return back to school, but rather it was a matter of when I would go back. They believe in me and my aspirations.

Although, I suffered a major loss, I suddenly realized there was so much more to gain; that is when my sister Toni had the idea of blogging about my feelings. The initial purpose of the blog was to be a forum where I, along with Toni, could blog about our experiences surrounding vision loss. The blog offers two perspectives; one from a sighted perception and the other from a blind point of view. After the blog was launched, Toni had an idea to take Beautifully Blind a step further by turning it into a nonprofit that would offer awareness about blindness, grants, transportation, home maker services, and offer counseling for newly blind individuals. The goal is to make the transition to vision loss a little easier for individuals and their families.

To sum it up, the events that unfolded have helped shape me into the person I am today. When I lost my sight at the age of eighteen years old, I learned at an early age to not take anyone or anything for granted because you never know what each day holds. I believe the adversities in my life have made me a stronger person. I will continue to live out my dreams because disability does not mean inability.