Personal Story: How I Lost My Sight but Gained My Vision

by Mariagrazia Buttitta
cone dystrophy

It was three o’clock on the dot when I sat on a wide and comfy chair. My forearms placed on each side of the armchair, resting comfortably. Though, the rest of my body felt stiff as I was also experiencing heart palpitations. But that wasn’t my only concern, the palms of my hands and the rest of my body were sweating profusely. I believed I could slide right out of the chair and land into the carpet flooring. 

I took a deep breath and comforted myself knowing that my mother, patiently, waited for me in the waiting area. 

Yet, somehow, I finally found the courage to lift my gaze. I was, somewhat, curious to see what the man in front of me had to say. I wanted to give this a chance, but I had never seen a psychologist before, and I had no idea what to expect. One thing was for sure though, the irrational and racing thoughts began to hover over me once more, leaving me feeling overwhelmed and gasping for air. 

“Am I going insane? Am I losing my mind? He must think I am crazy; I must be freaking the poor man out. I better say something soon or jump out of the chair and run for my life. Okay, now, just take a deep breath, inhale and exhale. There you go.” 

Thankfully, those initial thoughts of wanting to run off suddenly became replaced by a strong scent of lavender and sage that filled the room. Not to mention an adorable golden retriever who immediately captured my heart and finally got me to crack a smile.  

I slowly started to feel calmer, less threatened by my own thoughts and by this man sitting in front of me. He didn’t say a word, almost as if he knew I needed a second, or more like a good 10 minutes to adjust. Then he finally asked, “Feeling more relaxed?”, my thought, how in the world could he have known that? Was he some kind of psychic? Then again, my face must have been ghostly white.

Despite the initial anxiety, my first session turned out better than I expected. Talking to a professional about how I was feeling wasn’t so bad after all. I was actually looking forward to going back for my next appointment. 

But nothing could prepare me for what was to come in the upcoming weeks, things got candid fairly quickly. I soon learned I had a major depressive disorder and a general anxiety disorder. I hated the idea of having to carry a label. I desperately wanted to be more than the girl who was depressed and anxious all the time. At the same time, all of this finally made some sense. My anxiety and depression didn’t happen overnight, I had experienced a lifetime of being bullied, talked down to, misunderstood by teachers and peers, and I had an eye condition I had to learn how to accept—it is no wonder I felt the way I had, for years. 

I was born and raised in Sicily. A beautiful country that often leaves me thinking about how wonderful it was to be surrounded by the sea, mountains, family, food, tiramisù, espresso, and parents who loved my sister and me very much. But I also grew up in a culture that didn’t embrace differences. How could I thrive in a culture that wouldn’t accept people like myself? I felt broken. 

I spent most of my childhood sitting in doctors’ offices while teachers thought I was mentally challenged because I could never read like all of the other children and because I was extremely clumsy and fell everywhere. I became the girl who appeared lazy because she refused to read books in tiny prints. They didn’t understand that the chalkboard in front of me appeared blank to me, and, how could they? When I barely understood it for myself. Why was all of this happening to me?

My parents and I desperately waited for answers that never came, and years went by and I started to believe I was less than everyone else. It’s like all of those teachers and peers hypnotized me into believing all that was true about myself. 

This belief about myself led me to constantly feel sad and lonely because no one wanted to hang with the strange kid at school. I got bullied by twins who taunted me during my middle school years, and yet, I was too scared to stand up and defend myself and too embarrassed to go home and say anything to my family. 

Luckily, my parents weren’t ready to give up on me and by the time I turned 14 years old, we had answers. I finally received an eye diagnosis of cone dystrophy that would change how I saw life for good—no pun intended (or maybe it was). 

According to the National Organization for Rare Disorders (NORD) cone dystrophy affects nearly 1 in 30,000 people in the United States. Now what? How could I ever be like everyone else? 

Cone dystrophy affects the cone cells in my retina which is the portion of the eye that helps people see in bright conditions. I am extremely sensitive to light and constantly wear sunglasses. I experience low vision, nystagmus which is a shaking of the eye, and have a colour vision defect. I also walk around with a white long cane—which I named Casper. My vision will vary depending on the light and how familiar I am with the environment. The road ahead would be filled with challenges and had many fears to overcome surrounding this diagnosis. 

Moving to New Jersey with my parents at the age of 21 was life’s winning lottery ticket I had been waiting for a lifetime. I was finally in contact with the commission for the blind, I was receiving professional help, I even went to college, and eventually, I earned a master’s degree in clinical mental health counselling from The College of New Jersey. I graduated with honours and was awarded the Douglas Burroughs Professional Commitment Award by the Counseling Department. I started sharing my story of hope and healing by becoming a motivational speaker, as of 2019, I am also a National Certified Counselor (NCC). Additionally, I am the author of my memoir, Now I SEE: How I Battled Blindness, Mental Illness, an Espresso Habit and Lived to Tell the Tale. My story has also been featured on the Huffington PostMediumWriters Digest, and Counseling Today (a publication of the American Counseling Association), to name only a few publications.

I also initiated a social media campaign the #eye4acure where I aim to address the stigma surrounding cone dystrophy. In addition, I am an advocate for people with mental health and physical disabilities. But most importantly, I gained a vision in my life as I had never before. I have never seen more clearly than I do today. Now, 2020, is the year of perfect vision. I used to think that being different was a curse, and that being depressed and anxious meant a life filled with limits, but instead, it opened doors that would never have opened otherwise, it made me so much stronger, so determined, and a more resilient individual. The best part is that it put me on a path to want to help others. 

For many years, and sometimes I still to this day, I feel insecure, useless, depressed, overwhelmed or anxious but I try and remember this; everything will work out in the end. Now, I didn’t say it was going to be easy and I am not suggesting you fight this battle alone either—you don’t have to. I didn’t have to. 

I still consider myself work in progress, but who isn’t? One thing is for sure, I surround myself with positive people. People who believe in me and accept me as I am. I have my incredible mother, family, a few good friends, professionals and my dogs aptly named Lucky and Happy. Additionally, I have prioritized self-care. 

I want to show people that no matter what you are going through in life, that it’s possible to heal again. To feel whole again. Every day I am starting to feel a little less broken.  

Don’t let your difference define your future aspirations. 

Be you. 

And to all those who doubted me, who put me down, and who didn’t believe I could, I want to say thank you for letting me work even harder and prove you all wrong. 

And as Dr Seuss once said, “Why fit in when you were born to STAND OUT.”

If you want to learn more about Mariagrazia and her journey with Cone Dystrophy, you can purchase her memoir here

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