I was born with it. Ever since I can remember, it was always easy for me to talk to random people. In fact, I am known for making at least one new friend everywhere I go.
Beginning of vision problems
This started at a very young age when I had to ask classmates:
- "What does that say on the board?"
- "Just read it to me it's easier that way."
Eventually, they caught on to me - family, teachers, friends, and doctors.
Continuous vision tests
During this time, I remember always dreading going to doctors' offices to do countless vision tests. I would always say, “Look, all I CAN see is the big 'E.'" Doctors and specialists wrote every script you could think of and nothing worked. This was discouraging, so I decided to stop wearing glasses. People didn't really like that idea and they made comments like:
- "Why are you looking so close?"
- “You're gonna make your eyes worse"
- “Where are your glasses?"
I was super frustrated and annoyed; it’s not like I wanted to look this close to my phone or books, but I had no choice.
My mommy, being the incredible women she is, took me to the best of the best to figure out why I saw the same with or without my glasses. I was finally diagnosed with macular degeneration when I was 11 years old. Getting a diagnosis was bittersweet. On the one hand, it finally solidified what I had been trying to explain to my family and friends. But, on the other hand, it confirmed that I was always going to need a little extra assistance.
Avoiding assistive devices
In the beginning, post-diagnosis, I tried my hardest to avoid using assistive devices. When my teachers would ask me if I wanted to utilize my special accommodations I would say “No, I am fine,” knowing good and well I wasn’t. But, at that time, I was trying to be cute and not stick out. As a result, I struggled tremendously in school.
C's get degrees
When I was 14 years old my parents decided to move to Chandler, Arizona during my sophomore year of high school. At the time I was so upset at my parents for moving to Arizona because I finally made friends at my high school in Philadelphia. Everything was great! Prior to moving to Arizona, I was content with meeting the bare minimum at school. I remember getting the last report card of my freshman year which was full C’s and B’s; I wrote on the envelope “No summer school for me.” My new motto was C’s get degrees.
Adapting to vision loss
Eventually, I got tired of struggling in school and decided to finally utilize the supports that were put in place for me to succeed. At my new high school, in Arizona, I proudly went to the resource room and accessed the accommodations.
From class clown to honors student
Looking back on it, I think it was easier for me to access the accommodations at my new school in Arizona because no one knew me and needing accommodations was my baseline. Whereas in Philly, people perceived me as normal and did not know I was visually impaired. I guess I was trying to keep that facade of being "cool" or maybe because it was socially acceptable for me to do the bare minimum in Philly. In Arizona, my friends were all honors students and being “cool" meant being in Advanced Placement classes, rather than being the class clown (which I was trying to be in Philly) because I was insecure about my struggles.
Fast forward I did well in high school and knew I wanted to attend college. I am a first-generation college student from the inner city, so my parents had very little knowledge about how to make this happen. My mom and I met with my Individualized Education Plan (IEP) team and we discussed my education goals. They connected me to the Office of Vocational Rehabilitation (OVR) and from there, my educational career flourished.
Working my way through college
I received my Bachelor's in Social Work and then completed a one-year advanced standing program for my Master’s in Social Work (MSW). During my MSW program, I applied for Supplemental Security Income (SSI) because I was not able to work while I was in school. I was approved immediately and collected it up until I secured employment as a Medical Case Manager (MCM) in 2013.
Shortly after becoming an MCM, I began the process of purchasing a home. No one in my nuclear family has purchased a home before, so this was exciting and scary. I closed on my home in April 2014. I became a mother to an incredible human being in 2015, broke up with the love of my life in April 2016 (we’d been together since I was 14), passed my Licensed in Social Work exam in June 2016; became a supervisor in 2017 and a coordinator in 2018.
My life with Stargardt disease
Now that you know my background my next articles will discuss what it is like living with Stargardt‘s and these various identities. I intend to be transparent about my victories and the lessons I have learned. I look forward to sharing with you “the way eye see it”.
Have you visited our new sister site, ChronicDryEye.net?