Monday October 24, 2022
For many survivors of bilateral retinoblastoma, vision changes throughout life. This may be due to treatment late effects, eye health, or other medical events. World Eye Cancer Hope USA President and founding board member, Marissa D. Gonzalez, recounts her journey with vision loss during two different seasons of life, and her difficult experience with acquired blindness as an adult after decades of good sight.
Marissa, age 2, sits with her grandmother Martha.
Writing about your worst fear coming true, and the immense difficulty it brings, is a daunting task. The reality is that no matter how long you have been blind, it remains a daily challenge to accomplish many things. I wish I could say this blog is filled with a triumphant undertone; it is simply my story, and I hope it can offer insights into living with vision loss so that people may have a better understanding about it.
I was nine months old when my mother noticed a white glow, similar to looking into a cat’s eye. She took me to an adult ophthalmologist who did not bother to thoroughly examine my retinas, nor refer me to a pediatric ophthalmologist. It was not until I was seventeen months old that my mom learned about pediatric ophthalmologists.
Upon seeing this new physician, I was under anesthesia within 24 hours and the diagnosis of bilateral retinoblastoma was made. I received a month of daily radiation, along with cryotherapy under anesthesia, but at twenty three months old it was determined that my left eye would need to be enucleated.
Having lost my eye before my second birthday, I only knew the reality of monocular vision. I also knew the reality of an aggressive pediatric cancer that landed me in an operating room multiple times per year in both California and New York.
The tumors in my right eye grew for five years after the left eye was removed, and it was an additional five years of exams under anesthesia until I was declared cancer free. By my 12th birthday, I had received 50 general anesthesias and surgeries for retinoblastoma.
Marissa, age 3.
While growing up with monocular vision is the only thing I knew, it did require many adaptations in the classroom. My mother met with every teacher and had me sit close to the chalkboard, with my right eye closest to the front of the room.
I wore protective glasses to keep my remaining eye safe, and protect my prosthetic eye. I loved school, and exceled in the classroom, so it wasn’t too difficult in my primary and high school classes to learn and enjoy being in the school environment.
The largest challenge was that since I had a prosthetic eye, I looked different as a child. As my body grew, my facial growth was stunted in the temple areas, leaving bilateral indentations in my face as I matured. I also had a droopy eyelid and a prosthetic eye, which was an easy target for bullies.
If you know me, or met me as an adult, it would be nearly impossible to believe that until college I never stood up to bullies, and I never asked for my own accommodations to assist with my monocular vision. I was a very extroverted child in my own home and in places that I felt safe, but this did not extend to the playground.
I used to dread my mother meeting with my teachers and asking for simple adjustments to where I sat in the classroom. I honestly cannot remember any teacher in my 16 years of matriculation being difficult or having any issue with helping set me up for success. But I think I was so scared that someone would be angry at me because my mom asked for a little help.
Looking back on this, it sounds absurd, especially since I am now fiercely independent in asking for any extra assistance. But I guess my reality was the unknown – a decade of hospitalizations and never knowing if my tumors would grow or shrink. The reality of that for a child until age 11 is simply awful. Maybe I thought if I was quiet and did everything I was told in school, my teachers would like me. In retrospect, my teachers liked me because I was a good student and a kind little girl.
In kindergarten, I befriended two girls named Kristen and Joelle. Neither of them minded that I looked any different. To this day, Kristen is my best friend. I stood by her side at her wedding; she stayed in the hospital when I lost the vision in my right eye. Our families are intertwined, and I even call her mother “Mom Number Two”.
In second grade when I changed schools, I met another life-long bestie, Kelly. She would yell at the bullies on the playground if they made fun of me, even when I did not have the confidence to do this myself.
Once I began high school, I reconnected with Kristen and Joelle, and found an incredible group of friends, many of whom I am still close with to this day. I had found my true passion in figure skating, and a solid group of friends and coaches at the ice rink. I enjoyed my classes, and worked hard to maintain a high GPA.
For the first time in my life, I had a firm understanding of what I enjoyed, and my self-confidence began to grow. My personality really came out because I had a wonderfully exciting athletic life (I even arose at 5 am to go ice skating before school), and a solid and large group of friends. I no longer had to be in the hospital, and I no longer feared that the tumors would grow and possibly blind me in my only eye.
My vision loss did not even keep me from driving. In my senior year of high school, I was taking myself to the ice rink, then to school, then to babysit, and finally home every day.
Marissa stands on one of the 1,200 pound stones at the base of the Great Pyrami in Giza, Egypt.
Because of my radiation treatments as a baby, I knew there was a solid chance that a cataract would grow in my right lens. By late in high school it was beginning to affect my vision, and by college, it was much worse.
While my mother was still involved in speaking with my high school counselor about my needs as a monocular student, I was pretty much dealing with it on my own by my junior year. By then, I had enough self-confidence to vocalize my needs as a visually impaired student. I wish I had gained this confidence much younger, because no teacher ever had a problem with re-seating me.
Many teachers would go out of their way to ask me if I needed extra help, tutoring, or extra time on a test. One particular teacher was fantastic. I had Mrs. Stough for two years in algebra 1 and 2. She would have me come to her desk before she re-did the seating chart, and hand select my desk. Eventually, she just left me in the same seat as the others moved, because she knew it was the best spot for me.
I feel incredibly lucky that I had such kind educators. People who were genuinely invested in making small adaptations to help me learn – sometimes even reading a test out loud to me if my eye was fatigued from surgery.
The cataract was gradually causing me to go blind in my right eye, and I finally had it removed while in college. This was the scariest moment of my life to that point; should anything go wrong, I would be blind. Thankfully, the surgery was a success, and for the next 18 years I had 20/25 vision in my right eye.
Life was just normal to me during those years. I was able to work full time, attend concerts and sporting events, zip off to Vegas on a whim, travel the world – live the life of a twenty-something who had endless energy and could survive on six hours of sleep.
Marissa and Kristen at a tea party celebrating her birthday. In 2018,
I had a routine facial reconstruction surgery, and during the surgery I had a medical complication in my right eye. I went into surgery as a young woman with great vision in one eye, and I left as a blind woman.
I spent a week in the hospital undergoing what felt like 1,000 tests to see what could be done to restore/save the vision. Ultimately my diagnosis has no cure, and I left the hospital with the new reality that I was now legally blind in both eyes. On a vision chart, I read 20/800, and I estimate that I have twenty percent of the vision remaining in my eye.
What did reality as a now legally blind in both eyes person look like? Hell.
Once the myriad of appointments, visitors and hyperbaric oxygen treatments slowed down, I was left to grieve the one thing I had most feared in my life – being blind. I lived with my mother for about four months, as I had to learn how to do everything all over again. I started attending classes at the Braille Institute, and worked with an Orientation and Mobility specialist to learn how to use a white cane. I was never alone. I didn’t even know how to use the microwave on my own.
Slowly I learned how to organize my world so I knew where things were, and how to keep the refrigerator stocked so I could identify products. Slowly I learned how to use my white cane, even though I preferred to walk holding my friends’ arm as opposed to using the cane.
One day, my friend Erika told me she wanted me to use my cane when we walked in public, and I was so upset. I realized though that the cane tells people I am blind; it alerts pedestrians, drivers, cyclists and others to the fact that I cannot see them coming. But I had to realize this was my new reality, and my friends were trying to help me. And probably it gets old holding onto someone who is not a toddler all the time!
The day I sold my car was devastating. I sold it to a friend of a friend; when I heard it leave the garage, turn onto the street and drive away, I landed on the floor in sobs that shook my entire body. That piece of independence was now forever gone. I would never again buy a car, use my hard earned money for its monthly payments, put my USC license plate frame on it, and my Denver Broncos sticker on the back window. In that moment, I felt my life was over.
I moved back to my own home, and extended leave from work. I was finally alone to face this new reality. I could not deal with the pain, so I drank a lot. I acted out suicide plots in my head, and thought it would be easier if I was no longer alive.
After nine months disability leave from work, I returned on a part-time basis. Learning speech to text dictation software was a nightmare, and still is. But eventually I managed to send emails, to write documents, to put items in an excel sheet. Eventually I learned to walk around my neighborhood with my white cane, and to walk my pet dog along with the cane.
Eventually, I learned that if I wanted to stay employed, I would have to work my ass off to learn how to keep up and prove my worth (which I did, lol). Eventually, I had to learn the biggest lesson of all – to ask for help, and to ask for grace.
When I reflect upon the enormous differences between losing an eye as a toddler versus losing sight as an adult, I feel they are two polar opposite experiences. When you grow up with monocular vision, you do not know anything different. Your brain adapts quickly to your new reality, as this is the only reality you know.
Most children with retinoblastoma do not even remember life with sight in both eyes as cancer gradually destroys vision, and many eyes are removed at such a young age. You adapt to your surroundings, and life as a monocular child becomes the norm.
Losing sight, or an eye as an adult, especially when you only have one eye, is a tremendously jarring and terrible ordeal. The brain is much less malleable, and it is significantly harder to adapt to your new situation. Vision loss at any age is a huge challenge, but it is far more psychologically, emotionally and physically intense as an adult.
I wish I could tell you that living with vision loss just takes some adapting, and that it gets easier as the years progress. In years two and three, I struggled with the concept that it would get easier, yet I would find myself despondent in tears at least once a week because life was so difficult being blind. For about two years, I actually thought living with vision loss got harder, not easier.
Year four has brought its own challenges. For the first 6 months of 2022, I was sad, had a chip on my shoulder and was just pissed off at the world. I cannot imagine that I was a pleasure to be around! I would often have to apologize for my foul attitude. But as many people will say, the only person who can adjust my attitude is me. So I had to, because living in a constant state of anger and depression is not healthy.
I credit therapy with the ability to pull myself out of the extremely low places. I have learned the tools to adjust my mental mindset, and identify unhealthy behaviors, and I have put in the work to improve my mental state and mental health.
This can be a draining and arduous task that requires you work at it for years; likely for me, the rest of my life. But again, I am the only person with the ability to improve and adjust to my outlook on life, even when it seems too difficult.
Marissa and fellow Rb survivors, families and professionals visit the Jefferson Memorial during their Family Day tour of Washington D.C. part of the 2017 One Retinoblastoma World meeting, which Marissa planned.
As I began to adapt to my new normal, I returned to my volunteer work with World Eye Cancer Hope USA. In some ways it was harder than ever due to the tremendous task of learning adaptive technology, and in some ways it was comforting to know I was working on behalf of a community with many members who were blind or had low vision. Over time, this chapter in my life made it even more important that I continue to advocate for early detection of retinoblastoma, and help others in the Retinoblastoma and low vision community.
Life post-pandemic has returned to a jam-packed calendar between work, WE C Hope and my social life. My mother and I have returned to collecting stamps in our passports, and life seems busier than ever.
To celebrate 30 years being cancer free, I organized a fundraiser for World Eye Cancer Hope USA, with proceeds benefitting retinoblastoma family events around the United States. Our first family weekend was a wonderful success in the Chicago area, with 24 attendees. Next up is an afternoon of fun in the Southern California sun on November 5, followed by a Texas family weekend, December 2-4. In March 2023, WE C Hope will head to the Washington D.C. area for a Mid-Atlantic weekend. We plan to host future family gatherings in other parts of the country in 2023 and beyond.
I have so many projects to focus on and keep me busy! My hopes for the near future are to continue to advance my computer skills, travel to new and exotic locations, and have a generally optimistic outlook on life. It is not always easy, but with some effort, I think it is possible.
Living with vision loss is a tremendous test, however I am incredibly fortunate to have a huge network of friends and family who are always by my side through the good times and the bad. And for that, I count my blessings.
Please donate to my 30th Cancerversary Fundraiser to support retinoblastoma events for our family and survivor community.
Marissa and her mother pose in front of the tallest building in the world, the Burj Khalifa in Dubai, UAE.
About the Author
Marissa Gonzalez resides in Southern California and is an event director. She is a founding board member, and current President of World Eye Cancer Hope USA, and was Event Chair for the One Retinoblastoma World Conference in 2017. In her downtime, Marissa enjoys travelling and going to Disneyland.