Meet Taylor Field

My name is Taylor and I am 23 years old. I was born with profound bilateral hearing loss and began wearing hearing aids at 2 months old. Around the age of 14, I began to notice a decrease in my hearing. At the prompting and encouragement of my family, I began the long process to receive a cochlear implant in 2010. It changed my life – while difficult to accustom to a new platform of hearing, I was astonished to discover what I had missed my first 14 years of life. I could finally understand what the singers meant when they sang about the sound of rain, I realized why people yelled at me for dragging my feet when I walked and I could now hear the fridge humming. Mundane things, I’m sure, but to me it was a privilege to be able to be cognizant of such ordinary and common noises. As the years went on, I adjusted to the cochlear implant and its contingencies. It became my new normal and I was able to wrangle the ups and the downs like a pro. Six years later, I noticed difficulty driving at night, difficulty seeing at distances and an increased strain on my eyes when reading or operating a computer. With the support of my now-husband and my parents, I embarked on the difficult journey of tedious tests, procedures and endless appointments in Boston. After months of this, I received a life-altering phone call from my specialist. I was diagnosed with Type 1 Usher Syndrome. There were so many thoughts racing through my head that I couldn’t address a single one - how could this be? What does this mean? Are they sure? I had been lucky to have adequate vision for most of my life. Surely they meant type 3, this must have been a mistake – I meet almost none of the criteria for Type 1 Usher Syndrome. I remember the moment so clearly – I was at work and I walked outside to process everything I had just been told. My world crashed down around me, the blood rushed to my head and I truly had a catatonic, out of body moment. In the following weeks, surrounded by my husband, parents and sisters, I picked up the pieces and moved forward with my life. I told myself that I’d take a few weeks, maybe months, to process this diagnosis and establish a plan moving forward. I’ll be the first to admit that I was lying to myself and my family. I mean, let’s be real – what kind of plan could I establish? I told myself that there was no cure, no management out there that can help me… so what is the point of researching or advocating? I did my best to ignore the diagnosis and live my life unaffected, free from the weight of such a disease. My husband noticed the effect it had on me and took the initiative to do research on how to move forward. We were surprised to discover that there was an Usher Syndrome Coalition, only the next town over from us. I was apprehensive and hesitant to become involved because I knew it would require facing my own reality, however uncertain my reality may be. Now, three years later, I am finally ready to face down the unknown. I am ready to fight, advocate and advance as a member of the Usher Syndrome Coalition. After three years of dodging, ducking and cowering, I am ready.