VisionAware

By  Mariagrazia Buttitta, VisionAware peer advisor

Lub dub, lub dub… my heart raced faster than ever during one of the many eye doctor visits I had planned for that year. I vividly recall the tightness in my body, my clammy palms, and the sweat dripping from my underarms as I held on for dear life to the armrests on each side of the chair. I took a few deep breaths, covered one eye, and attempted to read the eye chart in front of me. Once I got past the big letter “E,” everything else was a big blur. I desperately wanted to read all the other letters, and so, I would proceed to exclaim: “A, no, L, I mean, C?” “Okay, I was kidding, V, nope, definitely a T.” “R, final answer.” I wish I could have used my “ask the audience” lifeline, but this was no Who Wants to Be a Millionaire game show. This was a brutal reality for me—one I was not ready to face. How could I, my parents, or anyone so young for that matter face, what seemed at the time, such a devastating diagnosis? As always, I turned to my supportive mother for comfort as I felt a sense of guilt wash over me. But I would immediately resort to irrational thoughts and ask myself these questions: What’s wrong with me? Why am I failing to read the chart? Why am I failing to see colors? Why am I overwhelmed by light? Thankfully, the many “why’s” were answered by the time I turned fourteen.

My Condition

The condition that I have is called Cone Dystrophy, and according to the National Organization for Rare Disorders, it affects one in 30,000 people in the United States. Blindness affects people differently—because no two people are alike. I am one person with cone dystrophy, and this is my experience and my experience only. People are curious, and curiosity often leads to assumptions about blindness and low vision. Perhaps we often fail to educate others about blindness by informing them that blindness has a spectrum that is similar to the autistic scale or the ADHD scale. Nevertheless, I have been told “You look like you can see” orthey ask the “What can you see?” question because many people hope I can provide them with a quick explanation. But cone dystrophy is far from easy to comprehend or explain on the spot. Still, without hesitation—I often start by listing my symptoms, such as photophobia (abnormal sensitivity to light), color deficiency (in my case, I can distinguish darker colors from lighter colors, but don’t ever put me in charge of throwing a gender reveal party), and nystagmus (which is characterized by involuntary quick eye movements).

At this point in the conversation, I often sense a bit of remorse from them for having asked the question because I still haven’t truly answered the “What can you see” question posed earlier. I then tell them I am considered legally blind, meaning I have a visual acuity of 20/200 or less in dim light. Though, I usually don’t get off the hook that easily as they fire up more questions like “Can you see me, then?” Or “why do you need that stick, then?” (By stick, they mean my white cane, which I named Casper, like the friendly ghost). Usually, I lose people around this point. Nonetheless, if and when they stick around, I try and explain to them how I never see something or someone the same way. Factors that affect my vision are typically new environments, new details, and the amount of light exposure (indoor and outdoor). Yet, despite my continuous efforts, blindness and low vision are misunderstood by many, which is true about many things outside our experience.

My Turning Point and My Accomplishments

The road ahead was an emotional rollercoaster both for me and my parents. We had never met another blind person, we didn’t know the resources that existed, and we were blinded (no pun intended) by this eye disease. In 2009, my parents and I left Sicily and embarked on a new life adventure and opportunity in New Jersey. I joined New Jersey’s Commission for the Blind and Visually Impaired, went to college, started motivational speaking, and wrote my memoir, Now I see: How I Battled Blindness, Mental Illness, an Espresso Habit and Lived to Tell the Tale.

Sure—along the way I hit a deep depression and struggled with anxiety—still do—but with the proper combination of support and self-care, therapy, my white Shi Tzu, Happy, and my incredible mother by my side, we fought it together, we grew together, and we learned to take better care of one another. Each day I learn to love myself a little more—perfectly imperfect as I am. I also take care of my mental and physical wellness through exercising and meditating.

In 2020, I joined the Rutgers Eye2Eye Peer Support Program for Vision Loss as a program promotion, outreach, and peer support specialist. I get to help individuals and families feel more hopeful about blindness and low vision, which is a beautiful thing. It has been extremely rewarding. By the way, this program was recently featured on VisionAware as an agency of the month. I am also now a VisionAware Peer Advisor.

After earning a few degrees, doing a whole lot of work, and gaining loads of determination—I can assure you that blindness is far from darkness. It has brought more light, vision, strength, and resiliency into my life than ever before. The worst things in life can sometimes bring out your best qualities.

What I Want Others to Understand About Cone Dystrophy, My Eye Condition

1. Neither cone dystrophy nor blindness are contagious. You can’t catch them.
2. Just because you don’t understand cone dystrophy doesn’t mean I am faking it.
3. Even though I lack sight, it doesn’t mean I lack vision. I can live a meaningful life despite having cone dystrophy. I have dreams and goals like everyone else.
4. Cone dystrophy doesn’t mean I can’t hear, too. Nor does it mean I was born with superpowered hearing. So, please, tone it down a bit.
5. Don’t feel like you need to constantly apologize to me. Let’s take a deep breath together, and I will do my best to let you know if and when I need assistance. Occasionally, I will ask to hold onto your arm by the elbow and let you lead the way. We will make a great team! Please don’t panic; I will educate you.
6. I wear my sunglasses because light really hurts my eyes. Though, what hurts me most is when people ask me to take them off or accuse me of hiding from something.
7. Last but not least, don’t assume that cone dystrophy is something I “got used to” and “overcame.” I do have the tools and support to help me manage my day-to-day life challenges. Every day, I learn new ways to cope with cone dystrophy. I am a lifelong learner.
8. Sorry—I had to slip in one more. Just because I can see something and not others at times doesn’t mean I shouldn’t use my white cane. I find the white cane (Casper) extremely helpful. People don’t know I am legally blind unless I tell them, so Casper helps me avoid looking clumsy. However, in moments when it’s bright, Casper makes all the difference.

My Hopes for the Future and Final Remarks

I hope to continue to spread awareness about cone dystrophy, blindness, and low vision. I hope I can continue to educate people and reduce the stigma surrounding blindness and disabilities. I also hope I can continue to serve as a role model to others experiencing blindness, low vision, and challenges in general. Happy Disability Awareness Month and White Cane Awareness Day. Let’s keep spreading knowledge, supporting one another, and accepting differences.

Blindness is not the characteristic that defines you or your future.

—National Federation of the Blind of Maryland.