You're Stuck With Me: A Love Story

By the time I was 26, in 2010, I had deemed myself a perpetual non-dater with little to no motivation of ever meeting my soulmate. The idea of falling in love with someone, anyone, was such a foreign concept to me. Growing up, I would watch the Sound of Music and aspire to be just like Maria. Becoming a nun would be the easiest way of navigating the dating pool. Then I learned about religion and abstinence and realized that becoming Mother Superior wasn’t going to be the best career choice simply to avoid dating.

And then, I met him. Him, the guy that I learned was my true love. As I re-read that sappy little sentence, I want to throw up the sugary “true love” statement, yet it is the only way to simplify our great love into words.

I’ve never been one to think that there is one perfect person for everyone. To this day, I still don’t. The idea that there’s only one soulmate that each of us must find in the endless sea of humans is a preposterous concept. There are 7.44 billion people in the world and we would each need to spend a million lifetimes just to make a small dent in the search for our “one” soulmate. Nevertheless, I do believe that soulmates can evolve from absolutely nothing.

Him, my guy, is Socrates. No, no, not the father of Western philosophy (although, that would be a riot!) My guy is Socrates, a non-Greek who is disinterested in the study of philosophy. The irony of this situation is that my name, Sophia – in case you already forgot who was writing this piece – means wisdom in Greek. So a non-Greek man named Socrates, philosopher Numero Uno, meets Sophia, a non-Greek girl whose name is the very definition of what the philosopher Socrates preached.

This non-Greek mash up of sorts began in 2010 when we met briefly through a mutual friend. At the inception of our first encounter, Socrates failed to leave me with a good first impression. Instead, it wasn’t until we met the second time - five months later - at that same mutual friend’s going away party that we connected.

After a night of friendly discourse about a classical saxophonist, we shared a cab and exchanged phone numbers. I felt compelled to tell him what my first impression of him was and texted an unfiltered, “When I first met you I thought you were hot, but an a**hole.” Within minutes he responded with a classy, “That’s funny, when I first met you I thought you were hot too, but NOT an a**hole.” It was then that I knew he was a keeper.

Over the course of the next several months we began spending time at the occasional gatherings with friends until suddenly it became more consistent and routine. From there, our love blossomed and continued to grow until the balloon that kept filling up with water hardened and metamorphosed into a rock, so it could not burst.

And while this rock-solid partnership continued to take shape, a shocking test to our relationship came our way two years into it. The year was 2012 and it was the year as I was diagnosed with Usher syndrome, the most common genetic cause of combined deafness and blindness.

The diagnosis was confirmed with a genetic test at the National Eye Institute (NEI), part of the National Institutes of Health in Bethesda, Maryland. My mutated gene, USH2A, is a double recessive genetic disorder that requires both parents to have the exact same copy of the gene. Usher syndrome has three types – types 1, 2, and 3 – each with many subtypes such as my form Usher 2A. Combined there are approximately 400,000 people worldwide who have been diagnosed with Usher syndrome, yet it is still an orphan disease and relatively unknown to the mainstream population.

What I neglected to mention earlier is that I have hearing loss. It was detected and diagnosed when I was 4 years old, much to the surprise of my parents and pediatricians as I had passed all my hearing screenings with flying colors. At that time, the erroneous explanation for my loss of hearing was due to a reaction of an antibiotic given to me during an emergency surgery.

Having moderate to severe bilateral hearing loss meant wearing hearing aids, attending speech therapy classes and walking around with an assistive FM listening system in school. Growing up with hearing loss I always felt different, but I learned to embrace and accept those differences as being original and unique. If I could be in control of my own actions and choose to step outside of my comfort zone to make friends regardless of my speech impediment and very large contraptions that protruded from my ears, then I could be whoever I wanted to be. And yet, it was the rude discovery of having progressive vision loss all those years later that was the most debilitating.

While at the retinal specialist’s office, I was told I would be blind in 10-12 years. As a safety measure it was recommended that I start training with a mobility cane immediately and to start taking 15,000 IU of Vitamin A – enough to be toxic for my liver – to possibly help slow down the progression of my retinitis pigmentosa. As the doctor visits went by, my perfect world got less perfect while I learned more and more about Usher syndrome.

There, by my side and through all the appointments and discussions with family and doctors, Socrates kept his head high and walked upright like the non-philosophical, non-Greek champ he is. My head, on the other hand, was hung low. Down like a duck desperately searching for fish beneath the surface but never coming back up with food for its belly. I was drowning in my own pool of sorrow. Mourning the loss of my sight before it happened.

It was at this point that I saw myself as disabled and unable to live life independently for the first time in my life. The sheer shock of the diagnosis was debilitating enough that the precautionary measures made by the retinal specialist fueled the fear of needing to navigate life blindly. I was imagining how much my life would be unlivable. How losing my vision at a rate to-be-determined could be so soul sucking.

My miserable state mirrored the simple action of draining myself by clenching my jaw tight and breathing through the tiny gaps between each tooth to let just enough air to fuel the brain with oxygen, but not breathing in enough O2 to fill me up with the vivacity required to roll myself out of bed in the mornings. I would lie in bed for days on end trying to process all the emotions and grieve my soon-to-be-loss.

About four days after my diagnosis, I gave Socrates an “out”. Very casually, while sobbing and wheezing, as I tried to breathe and cry at the same time, I said, “Socrates, if you feel that this diagnosis is going to be too much of a burden for you, I’m giving you a chance to walk away with no hard feelings. I will completely understand if you decide to do that.” I took this moment to stop inhaling, waiting in anticipation for what he was going to say next. As heart-wrenching as I felt, I knew that I didn’t want him to feel that he needed to stay with me now that we had a modified visual of our future together.

His immediate response to me was quick and timeless, “Babe, I’m not going anywhere. You’re stuck with me.” It took him but a nanosecond to give that response. It was as if I had simply asked, “Want pizza for dinner?” with a quick “Sure” from him. And yet it was an answer that was heartfelt, genuine and stated with zero hesitation.

It was not only reassuring to hear that our bond maintained an impenetrable grip that bound us through the thick and thin; it was humbling to know that no matter how I saw myself as ruined and impacted by the diagnosis, I was still his plus one. My self-perspective never influenced his thoughts about the woman he loves.

And while my attempt at giving him the heads up that our relationship will not be without struggles and constant adaptations, it only helped shape our mutual respect for one another. It has been years since we had that conversation and while we will always have our ups and downs, there have been more perfect moments of enjoying each other than non-perfect moments.

Recently, someone said to my husband, “Sophia is so lucky to have you. You are an incredible person for staying with her even through her diagnosis.” My first thought when I heard that was “I used to believe that too.” Then I thought, “what!?” After years of struggling with my diagnosis and relearning to love myself exactly as I am, I realized that all this time it was these little nuances and imperfections that make each of us in this world, perfect. No diagnosis or accidents or life-altering changes should ever change or make anyone feel less than whole. We all deserve our person or people that will love us exactly as we are. Despite comments like those, mostly well-intended (or not), no one will succeed again at making me feel less of a person. Robert Tew said it best: “Don’t underestimate yourself by comparing yourself with others. It’s our differences that make us unique and beautiful.”

This is where my story ends, today. It doesn't have a neat ending or a twist, reassuring the reader with a fairy-tale conclusion that I am no longer going blind. Instead, going blind is just a little speed bump on our road trip to our shared life together. It made me realize that I’m not unworthy or half of a person who is lucky that someone could even love me. Instead, Usher syndrome is just a part of who I am, but it is not my identity. Much like I am not defined by my brown eyes or how tall I am. I am a human being, who like any and everyone else, is whole and perfect. It was because of my perfect imperfections that I learned that I found my perfect guy who is not anything less than my soulmate.