The Way I SEE IT: Robyn Rachel

Gasping for air, my lungs immediately shifted into hyperventilation while tears involuntarily streamed down my face.  That moment in time felt exactly like it is portrayed in the movies, when the lead character receives devastating medical news, and the room pans in slow motion.  Unfortunately, this wasn’t a glamorous Hollywood film set with an actor playing pretend; this was my real world and with a few cruel words, it turned upside down.

I was chasing my dream, fighting for every inch of success, building a premium luxury wedding photography business in the city of Chicago.  The white walls of my studio were lined with clippings from magazine covers and articles featuring the images I captured, and the stories I told.  They proudly hung, like trophies in a case, to remind me of how far I had come over the past five years.

 “Retinitis Pigmentosa is a genetic eye disease that causes most people to go legally blind” the doctor told me. “But don’t do research online, it will worry you too much, also don’t give up on life and crawl into a hole”. This was literally the advice that I had been given, just seconds after I was told I was losing my eyesight at the age of 31.  My body was frozen, but my brain was moving at lighting speed. “How did this happen and why now? I am going to lose my photography career and my independence!  I just married my husband, and this isn’t fair to him, he didn’t sign up for this!  This can’t possibly be something that I am willing to pass onto a child!”  In my mind, in that very moment, everything I truly cared about was unfairly ripped away from me.

 Although Retinitis Pigmentosa is initially kind to your central sight, it slowly, but greedily attacks your peripheral and night vision until there is nothing left except darkness and perhaps a straw’s worth of light for the lucky ones.

 I remember the morning following my diagnosis, I woke up with immense gratitude.  I saw vivid textures in the nature I mundanely passed every day, the sky displayed a deeper blue than I had ever remembered seeing.  All of a sudden, I saw extraordinary in the ordinary and vowed to see the world through this new lens moving forward.

 Even though I knew the light in my life would start diminishing, I was able to do what I so greatly loved that very day on a wedding day, a gift many are not fortunate to ever receive.  I was able to continue working for a handful of years at the same high-level capacity.  Eventually the soft lighting that once felt romantic, the packed dance floors that used to feel exhilarating and the chaos that used to give me a high, all peaked my anxiety and showed the truth of my loss. 

 Embarrassment shamed me when I missed the outreach of a common handshake, or bumped into little flower girls, or humiliatingly tripped over something that was outside my visual field range.  I could not bear the possibility of knocking over a wedding cake or bountiful floral arrangement, breaking another vendor’s equipment, or worse, hurting someone.

 I had to make the most difficult decision of my life and unscrew the nails that held up my prized images, pack up my beloved photography studio and for the final time lock the doors in 2019.   I wanted to feel proud with how I said goodbye, knowing that the quality I promised was not compromised, and the integrity that I lived by stayed intact.

Knowing that one of your senses (arguably the most important sense) was fleeting, gave me a sense of urgency.  I needed to start living fully, learning new hobbies, crossing off bucket list items and I had to do it NOW!  Traveling the world topped that list, and since 2020 my husband TJ, and five-year-old daughter Eloise, and I have visited over 20 countries.  Our time was filled with endless memories, journeys and lifetime adventures I will cherish forever.

Creativity and storytelling are at the heart of who I am, and I had to reinvent the way in which I approached it.  I quickly fell in love with drone aerials, both still and cinematic, the perfect way to document our travels.   Droning was the antithesis to a wedding day, where I was expected to be in a million places at once and see all that was going on.   Instead, my feet stay planted, without the anxieties of the real world, free to visit heights where my visions were endless, and my disease did not have to dictate the outcome.

I could soar to a mountain top while seeing every break in the snowcapped peaks along the way.  From a bird’s eye view I could appreciate the bubbly foam that forms when the waves break on a black sand beach creating infinite textures. I could see the cheerful candy-coated pops of color from beach umbrellas that are only overshadowed by the textured shapes of the coral in the crystal sea waters. Launching from a rowboat in the Dolomites, put into perspective how small we were, in the large glacier lake surrounded by prickly pine trees.

As my vision continues to narrow, and darkness inevitably creeps in, being able to drone gives me the ultimate escape. Despite my confining physical limitations, it offers me limitless creativity, the gift of hope and a new perspective in how I find light in my darkening world.