Image Retrieved from the Eye2Eye Peer Support Program.
By Mariagrazia Buttitta
December 23, 2020
By the time I was four years old, my tiny face was already glued to my oversized pink frame glasses that did nothing to help me see the world clearer. Instead, they left me feeling confused while my parents and teachers were puzzled and concerned about me. I fell everywhere and always ran over things. I hated the idea of going up and down steps because I would always stumble and fall. One day after school, my mother waved at me, but I never responded because I couldn’t see her standing two feet away from me. This was only the beginning of what was to come over the next few years: countless doctor’s appointments and a never-ending list of inaccurate mental and physical diagnoses. As a child, I spent more days in the doctor’s office than I did on playgrounds—or at least that’s what it felt like.
As my childhood and early adolescent years went by, my parents remained determined to find answers. Meanwhile. I had no choice but to carry on, struggling academically, getting bullied, and hating every aspect of my life. The “why me” refrain suddenly became my life’s anthem. I envied girls my age who were focused on dating and looking forward to obtaining their driver’s licenses. Despite these challenges, I was surrounded by love—my wonderful family loved me as I was. As my mother always said, I was perfect in her eyes. No diagnosis would ever change her unconditional love for me, and I’d always be the same beautiful girl inside and out.
Still, nothing could prepare us for what was to come on my fourteenth birthday. Two words—cone dystrophy—would simultaneously change and define my life and my parents’ lives forever. For a while, it was a constant battle between me on one side of the ring and my opponent, cone dystrophy, on the other side. Cone dystrophy affects approximately one in 30,000 people in the United States alone, according to the National Organization for Rare Disorders. My teenage life became a quest to beat this powerful opponent. But before I could step out of the boxing ring, declare victory, and take-home a “ring belt” and championship, I first had to learn much more about this disorder.
Thankfully, the internet makes it extremely easy to access information in a matter of clicks, and there are a lot of credible resources out there that explain cone dystrophy in-depth. But as with any disorder, everyone’s experience is different. So rather than explain things from a biological or technical viewpoint, I would rather give you a quick glimpse of how cone dystrophy affects my day-to-day life. First, please remember that blindness is an umbrella term that encompasses different types and levels of blindness. Simply stated, blindness and vision loss is a bit complex; it’s not always about seeing the world from a black or white perspective.
The easiest way to explain cone dystrophy is to ask you, the reader, to find a quiet, dim space and close your eyes for about one minute. Then, walk into a bright room or even stare out the window. What do you see? Similarly, cone dystrophy causes me to feel constantly overwhelmed by light. I experience something called photophobia, which is sensitivity to light. That is why I need to wear sunglasses almost all the time. Also, the colors around me are confusing pink can seem to be white, and green can look like blue. They all look similar. When I try to focus on something for too long, I experience a constant shaking of the eye called nystagmus. I am considered legally blind, meaning that I have a visual acuity of at least 20/200 in dim light. I also walk around with a long white cane—which I named Casper (like the friendly ghost)—because my eyes never seem to discern things completely or in the same way. Faces are not always clear, and details are difficult to process all at once. Everything takes time, but my experience varies depending on the light and the environment. So, for good measure, Casper is always beside me. Repetition is key: it takes a while to learn my surroundings.
After moving to New Jersey at the age of twenty-one and joining the Commission for the Blind and Visually Impaired, I was able to learn new skills and eventually face one of my all-time biggest fears: attending college. But I did it. I got straight A’s and learned to be content and independent. There are a lot of things I am grateful for, and I am proud of what I have accomplished, including earning a Master of Arts in clinical mental health counseling from The College of New Jersey and becoming a National Certified Counselor (NCC). I am also an author, a motivational speaker, a wellness and health enthusiast, and a passionate mental health and disability advocate. I am no longer just a statistic; I am living my life authentically with no limitations other than the ones I put on myself or allow others to put on me. Even though life is not always crystal clear, I have learned that through determination, love, and professional support, I can accomplish anything I set my mind to.
Most important, I have learned to accept this disorder, and I wouldn’t change my situation for the world. I wouldn’t be the person I am without cone dystrophy, so it does define me in a lot of ways, but mostly in positive ones. Each day I learn something new, and I am still a work in progress. But my main message is this: After accepting the person I was meant to be, I started living life to the fullest. I love hiking, spending quality time with my mother, playing with my four-legged friend, Happy, riding my bike, writing, working, cooking, baking, going to the beach, traveling, exercising, and embarking on life’s adventures.
If you want to learn more about my journey—my experience growing up in Sicily, moving to New Jersey, and learning to treat cone dystrophy not as my opponent but as something that motivates me to thrive and be successful—then go ahead and get a copy of my memoir, Now I See: How I Battled Blindness, Mental Illness, an Espresso Habit and Lived to Tell the Tale. It is available in multiple book formats, including paperback, e-book, and audiobook.
To this day, people have numerous questions about my eye condition. People are curious, but sometimes their curiosity leads them to make quick assumptions about blindness in general. It’s okay to ask questions, but what is not okay is (1) making assumptions and (2) asking the wrong questions at the wrong time. For instance, people I have never met in my life constantly ask me these questions:
Were you born this way? How much can you really see? Do you wish you had full sight? Is life hard? Why do you wear sunglasses indoors? IS YOUR HEARING BETTER (as they speak slower and louder to me)? Can you drive? Can you text and live a normal life?
And the list goes on and on. I do feel like a celebrity at times because my eye condition always seems to spark a conversation in public. So, as you can see, I have a lot more work and education to do. But, thankfully, I am not alone. There are so many great organizations out there that educate and provide resources for individuals like me as well as for their families. In fact, during the COVID-19 pandemic, I came across an opportunity that would allow me to fulfill my desire and mission to educate and help others like me. I am fortunate to have landed a position as a Peer Support Specialist for the Eye2Eye Peer Support Program. This one-of-a-kind program assists blind and visually impaired individuals and their families all from the comfort of their homes through phone-based peer support.
My role at Eye2Eye Peer Support is to not only assist and listen to our callers but also market and help spread awareness about blindness and low vision and make sure individuals and their families are aware of this service through outreach efforts. Let’s face it—blindness is one of the most difficult disabilities to deal with. There is so much stigma and uncertainty surrounding blindness and low vision, and individuals and their families may find themselves unsure about what the future holds, similar to my story. Being able to connect with peers who are also blind and visually impaired is what makes this process unique and therapeutic. Currently, there are not many phone-based programs offering information, support, resources, and referrals to assist individuals with managing challenges and celebrating victories.
But look no further; contact the Eye2Eye Peer Support Program, and let Us help
See the world a bit clearer.
About Mariagrazia Buttitta
A native Sicilian-Italian speaker, Mariagrazia Buttitta is a National Certified Counselor (NCC), an author, a motivational speaker, a wellness and health enthusiast, and a passionate mental health and disability advocate. Mariagrazia holds a master’s degree in Arts in Counseling: Clinical Mental Health Counseling from The College of New Jersey. Mariagrazia — the author of, Now I See: How I Battled Blindness, Mental Illness, an Espresso Habit and Lived to Tell the Tale, has also been featured on the Huffington Post, Medium, Writers Digest, and Counseling Today (a publication of the American Counseling Association), to name only a few outlets. Mariagrazia is a tireless advocate who regularly educates and speaks to college students and organizations about her blindness and her long-term battle with depression and anxiety. Learn more about Mariagrazia by visiting, www.embracingyourdifferences.com
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About the Eye2Eye Peer Support Program
Mission Statement: “To provide an easily accessible, community-centered peer support, phone-based resource program that will assist people in coping with the demands of adjusting to vision loss.”
Eye2Eye is a free, phone-based, peer support program, designed to assist individuals who are blind or visually impaired.
- Emotional support
- Assessments of needs and wellbeing
- Community outreach
- Information and resources
- Services for families and loved ones
- And much more …
Eye2Eye focuses on the shared experience of vision loss as a powerful tool for connection, emotional support, and personal growth. Callers will be matched with trained peer support specialists who are also blind or visually impaired.
Eye2Eye is here to help build resilience, navigate the challenges of vision loss and celebrate victories one step at a time.
Learn more at www.shp.rutgers.edu/eye2eye
If you or someone is overwhelmed by vision loss, please look no further, and get in touch with the Eye2Eye Peer Support Program for further assistance.
Phone: (833) 932-3931
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As Scott Hamilton once stated, “the only disability in life is a bad attitude.”
Thank you for reading.
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