| This is the 588th story of Our Life Logs® |
When you meet someone, what’s the first thing they tell you? Their name? Their occupation? Their favorite color? Well, my introduction is a little different.
“Hi, I’m Alicia Owens, and I’m legally blind.”
Of course, that’s not the only thing that defines who I am. I was born and raised right outside Atlanta, Georgia, I’m a first-generation college graduate, I speak four languages, I love music, and I read at least two books a week. I also drink coffee like it’s water, and I love trying to make new recipes, but you can ask my mom how that works out for us. Most of all, my family always comes first. They’ve made so many sacrifices for me.
This is just to say that I’m so much more than my disability, but it is a large part of my identity. Wait—I’m getting ahead of myself. I haven’t even told you how I lost my sight in the first place. Let me tell you my story.
The rehearsed version of the story is that, when I was 11 years old, I was taking acne medication and I ended up being allergic to it. The reaction created an excess of fluid in my spinal cord which put pressure on my brain and that pressure killed my optic nerves. That’s how I initially went blind.
Now, the longer, more emotional, more drawn-out version is that I had been sick for a couple weeks, but we didn’t know what was wrong. I had a lot of back pain and I couldn’t seem to keep food down. I was pretty dang miserable. It remained like this for a week or two until one day, I stood up and felt lightheaded. My vision blacked out a little bit, and I assumed it happened because I hadn’t been eating much. So, I waited for my eyes to go back to normal. Except…my vision never came back. I worried I was overreacting at first, but the longer I waited, the worse my vision got.
After that, things moved quickly. One second, I was telling my sister about it, the next, my mom was driving us to the hospital.
Once we got to the hospital, I was quickly admitted. They weren’t sure what floor to put me on at first, because they didn’t know what was causing this, so I think I was moved around a few times over the span of a few days. The doctors finally determined a cause and placed me in a semi-permanent room so that they could get to work.
I won’t bore you with the medical terms, but as a reminder, this was all caused by an allergic reaction that led to a buildup of fluid in my spinal cord. That created so much pressure up and down my back that it felt like I was constantly being stabbed from my hips up to my shoulders. On top of all that, I couldn’t see a thing. Finally, though, my doctors were able to figure out a cause for all of this, and then we moved on to how to fix it.
I had two spinal taps because one wasn’t enough to get all the fluid out of my system. Then, I had surgery on each eye to try to salvage my eyesight. From there, all we could do was wait.
My memory goes in and out for what happened after, but there is one moment I remember so clearly that I can almost see it playing out like a movie (which is funny because I never saw anything that happened in that room). I was with my family in the neuro-ophthalmologist’s office after my procedures to determine whether or not I would recover any of my sight. I can still feel the chair I sat in. I can hear the sniffles of my family crying and the soft buzz of the lights. I can smell the alcohol wipes sitting on a counter near me. And, of course, I can hear the doctor telling me that I may never see again.
Now, keep in mind, I was only eleven years old. Imagine if you had been told at that young age that you may never see again. What would be your reaction? Well, mine was true to who I am. In the year 2011, I was most concerned about not being able to watch the last Harry Potter movie that was being released that summer. Once I said that, everyone cooed and cried a little more, assuring me that I would get to see the movie someday. Honestly, I was hoping it would be funny, but I didn’t read the room well enough to know that a joke probably wasn’t right for the moment. Oh well.
I was discharged soon after the news and I had to adjust to life without sight.
When I first lost my sight, every moment after that was focused on how to gain some of it back. Hopeful? Yes. But I think we knew that our efforts would be for nothing because the damage was so bad. My mom and sister helped me adjust the best they could. I had to relearn how to get around my house and to do everyday tasks without my sight. I was visiting the neuro-ophthalmologist regularly to monitor how I was recovering, but at this point, we didn’t expect to have any change. I started to rely on touch and sound to help me get through each day as easily as possible.
My family and I started rewatching the movies and shows that I knew well enough to play them through in my head so I could keep up with them more. I listened to music instead of reading all the time. I was taking each day as it came, trying to get through without dwelling too much on what I’d lost and might not have again. My doctors performed several procedures all with the end goal of getting some sight back, but we were never sure if it would be successful. Still, I hoped.
Then, about a month into my new life, a miracle happened. I was laying in my bed when I realized I could see some of the pictures on my closet doors. While going blind was hard for me, it was just as difficult for my family. So, even a small thing like seeing some cartoon ninjas out of one eye was enough to lift my family’s spirits.
It ended up that I could see about 20% through my right eye, and in my left eye, it’s like I’m looking through a coffee straw. Overall, I have less than a quarter of my sight, but that little sliver of perception changed everything. Suddenly, there was hope where we didn’t have any. I stopped trying to adapt to the situation and I made the situation adapt to me.
On the night of a middle school concert, almost exactly a year after I lost my sight.
I knew the kind of life I wanted to live, and it wasn’t one where I needed help just walking down the stairs in my own house. I still have moments where I do have to use a sighted guide and there are days that it would be smart for me to use a cane, but my sheer stubbornness and the rush of hope pushed me to learn how I could manage things on my own. I was determined to keep my life the way it was with just a few changes here and there.
Before I lost my sight, I played sports every season out of the year, but I stopped playing because I was worried I might get beamed in the face with an unseen softball or basketball. To take up my time instead, I turned to outlets like theatre and writing. These two things helped me in more ways than I knew at the time. Theatre ultimately gave me the confidence to use my voice. Writing helped me know what to say when I had an audience who would listen.
Both of those passions have helped me in more ways than I can count, and I can point to a few moments in my life where my theatre experience made things easier or my writing skills gave me the perfect words for the situation at hand.
As I neared my graduation from high school, I felt I was in a good place. I had figured out how to mask my disability so that no one would suspect I was different. Exhausting? Yes. But at least I felt normal.
After a night at the theatre, performing in a production of To Kill a Mockingbird.
During my freshman year of college, I was in a club focused on learning about identities and cultures, including our own. That was the first time I thought about my own identity as a disabled person. I spent years trying to hide my blindness, not telling others about it, and making excuses when I didn’t see something or needed help getting around. I realized then how many people there didn’t understand disabilities. As the only disabled person in the room at those meetings, and in most rooms, honestly, advocating for my disability and others became part of my daily life.
I started speaking up about my experience and my perspective. And, that same semester, I gave a speech to a group of strangers on my blindness and how misunderstood it is. I realized the power a story can hold as I told more and more people about my “blind story.” Knowing how words can affect someone else and help them learn more about themselves and others is a driving force behind the work that I do, and it’s all thanks to my experience with my disability. It’s the reason you’re reading this story right now.
This may not sound monumental to you, but believe me, it was. Acknowledging my disability was something I only did with family or very close friends, but all in the span of a couple months, I had gained the confidence to shout my identity from the rooftops. It was kind of a miracle, and it made this whole journey come full circle because I had these hobbies to thank for that epiphany, and I probably wouldn’t be a writer or a former theatre kid without my disability. I don’t know why I waited so long to embrace it, because I’m so proud of it now.
I graduated cum laude from Georgia State University in December 2020.
I’ve been legally blind for almost ten years now and I’m still finding ways that I adapt to being blind. Most people don’t know that blindness is a spectrum, and that lack of knowledge has led to my advocacy for my disability and for others. Not everyone understands what it means to be blind, or visually impaired, or legally blind, but one of my goals in life is to change that.
I hope that using my passion for telling stories will help people understand my disability and the many complicated ways it can manifest itself in the world. Because seeing blind isn’t always what meets the eye.
This is the story of Alicia Owens
Alicia grew up in your average American home. However, her entire reality was jolted when she became legally blind at 11 years old. After years of hiding her visual impairment, Alicia was able to embrace her difference and use her love of storytelling to help advocate for people like her. Alicia is a recent journalism graduate with a desire to tell stories every way she can, whether that’s through writing, editing, or shooting footage firsthand. She’s passionate about helping others get their voice heard, and her visual disability is the driving force behind her work.
This story first touched our hearts on March 9, 2021
Writer: Alicia Owens | Editor: Kristen Petronio; Colleen Walker