For some people with significant vision impairments, especially those who were born legally or totally blind, their limited sight may not feel like a disability. Instead, they may simply view it as just another physical trait – one that is naturally addressed in their daily development growing up along with race, gender, body stature, and other characteristics. However, for others such as myself who lost sight as an adult, the lack of eyesight oftentimes represents a traumatic divergence in one’s entire way of life.
In my case, I was diagnosed with retinitis pigmentosa (RP) at 30 years old. I spent the next couple of years viewing my degenerating visual clarity and inevitable blindness as a looming dark shadow on my future aspirations. As the rods and cones in my eyes eroded, so did my
hopes and dreams for a normal, happy life in my career and with my family. Even simple mundane activities such as watching TV became frustratingly impossible to attempt without extreme anxiety. Would I be able to clearly follow along? Would I catch on to the comedic sight gags? Would my family notice if I didn’t? Would anyone be annoyed if I asked them yet again to put something on for me? These were the kind of questions I constantly thought about each time I wanted to tune in to any show.
The TV series “Fringe” started airing in September 2008. I vividly remember this not only because of the show’s innovative storylines and concepts, but also because it was at the beginning of my medical mystery. I was diagnosed with RP earlier that year. So while
scientific phenomena were being explored in this intriguing new fascination of
mine, I was starting my own journey down a path of scientific wonderment. With the advice of my doctors, I decided to try a variety of regiments with several different medications in attempt to slow down, or possibly even stop, the degeneration of my eyesight. Just as the “Fringe” scientists and agents, such as the main character Peter Bishop, were on a mission to save the world, I was on a mission to save my vision.
Unfortunately, none of the injections, pills, or examinations I subjected myself to resulted in any Peter Bishop-esque miracle. In fact, the only thing the experiments seemed to effectively do was leave me with a sense of brokenness and distract me from my potential rehabilitation. As the rods and cones in my eyes deteriorated, weakening my eyesight, it became more and more difficult for me to watch and enjoy “Fringe.” Without being able to see some of its complicated action sequences and unspoken surprise reveals, I was unable to fully comprehend what was happening as the story developed. “Fringe” went from being my go-to choice for personal chill time to an immediate trigger for tears and anguish. It bothered me that I couldn’t watch it on my own, and it became the ultimate reminder of my emotional spiral toward dependence in virtually all aspects of my life. I hated not having control over my own entertainment desires, but after completing only two of the five seasons, I stopped watching. Still, shame and heartache lingered in my subconscious.
So why am I writing about this now, especially when the show itself ended after its fifth season in 2013? Three years after my initial diagnosis, I finally discovered disability services and vocational rehabilitation. This time, my program’s focus was not on fixing me, but accepting my life in the world of blindness. In a sense, this became my alternate universe, just as Peter Bishop had to come to terms with his existence. I set out on a mission to reevaluate who I was and how I fit into my surroundings. Eventually I found my home not far from where I started, but with a new perspective.
I spent several years learning adaptive forms and methods of tackling daily and professional tasks. I worked hard every day on improving my technical efficiency, embracing my voice for self-advocacy, and building my confidence in comfortably expressing my true interests or goals. Basically, I rediscovered me.
Empowered by my newfound knowledge, skills, and technology, in 2016 I realized I was at last ready to go back and finish the show that for years had plagued my mind as a symbolic marker of the beginning of my lost pleasures. In the course of my training, I was introduced to the amazing concept of audio description as well as text-to-speech screen reader software
programs. Fully equipped with the proper equipment and means of accessing the audio-described version of the “Fringe” series, I was finally able to finish this TV show favorite and completely enjoy it.
I always had the ability to do whatever I set my mind to do; I just needed the right combination of services, tools, and support to help me tap into my own potential. Independently using my computer, navigating the necessary steps to access the form of entertainment I choose, and confidently deciding to relax after fulfilling all my other work and personal responsibilities represents a culmination of all my previous years’ labors merging to create one individual living the life she wants. It demonstrates my rekindled flame of self-determination.
Choosing to watch “Fringe” shows how my refueled and bottomless tank of endurance allows me to face dark fears and bitter challenges. It tells of my resilience, strength, work ethic, and
ableness. In short, watching “Fringe” signifies I am a success!
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