The Most Real State – Micah Bobiak
It took me most of my life to own my identity. I spent so much time ignoring the gravity of my reality — that I am hearing impaired. I am a patient for life.
I was born with Usher’s syndrome Type 2A. I am going blind from retinitis pigmentosa and have worn hearing aids since before my cognitive memory. My mother and father taught my little hands to close a battery door. Quite honestly, it took me 20 years to stand up straight to my condition, look it in the eyes, and call it my own. It is my hope that this story will be but a breath of pause in the swirl of change going on in the hearing care industry, and act as a reminder of the cause hearing health care strives for.
Sensory deprivation demands empathy from every single person I meet, and most importantly from the health care providers in my life. The medical nature of my condition is that I am losing my sight and hearing. My relationships with medical professionals — and anyone, for that matter — hinge on three essential elements: connection, consciousness, and confidence. I liken the breadth of life with impairment to two simple lines penned by musician Hayden Calnin:
“The most real state is the state of nothing. For it takes nothing to know something.”
To greet a patient, or me, with the time to listen and an open heart to care is a soft skill that is unparalleled in the industry. Simply asking the question “How does that make you feel?” is the first step to building an empathic relationship beyond pleasantries. Building a strong connection is always the first step to a lasting relationship. My most real state is the state of nothing; I’m like a boy living inside an aquarium, watching the world fade out through the glass. Once upon a time, two beautiful, newly wed parents brought their two young children to an audiologist. I wish with all my heart that I could travel back in time to be there — to tell them it would be all right, that a dual diagnosis of son and daughter would only bring us closer. The straightforward truth is that I am rarely asked what life with impairment is like.
“I was always the kid with hearing aids.”
As I grew, I came to know the difference between the other kids and me when they pushed me down, imitated my slurred speech, and laughed. The idea that my impairment signified me as “wrong” rang out in the silence of everything else. But where I know silence, I also know a symphony. I know the sounds of a loving family. I know the love of my mother, reading me to sleep at night before gently lifting my hearing aids from my ears. I know the love of my grandmother singing with her hands on the keys of a piano. I know the love of my sister, shouting down bullies and holding me when I cried. And I know the love of my father, pulling me close and telling me he’s proud of me.
“Me and my incredible family.”
Where there is nothingness, and nothingness to come, I know the sounds of waves, whispering trees, and sunsets over the ocean. I grew up with sound. And though I may be losing it, it remains the greatest gift of my life.
I know a world of sound because of an audiologist and her team who were devoted to and caring toward my sister and me for over 20 years — the team that fit us, gave us batteries, reminded us of appointments, cleaned our hearing aids, sent them off for repairs, and knew us as individuals. They have given me courage, confidence, and success. I owe them more than the world.
“I’ve been gifted the opportunity to be a musician.”
Patient-focused care demands consciousness. Empathy, awareness, and curiosity for the daily struggles of the individual with you in the room will differentiate you in the medical community. A provider with confidence and care provides more than just solutions to the problem; they offer a picture of what is possible for a patient based on their lifestyle and interests.
Growing up empowered to become who I wanted to be, and to experience the world as it should be, had requirements that far exceeded the “cheapest available option.” Amplification alone is not medical treatment. As my situation worsens, I will place my trust in those with the genuine interest in my situation and well-being, and the confidence to rise to the challenge. The multidimensional nature of any sensory loss can isolate a patient.
“I am empowered to meet my conditions head on – that means jumping in.”
The development and growth of any relationship, especially between provider and patient, is commanded by three key items: connection, consciousness, and confidence.
The reality of everything that I have been gifted, in life and loss, has driven me to give all that I can back to the industry that cares for me. Today I am an operations manager at Audigy, working hand in hand with private-practice providers around the country to deliver the utmost to each and every patient.
(Me and My Audigy Teammates)
Where hearing aids have become commoditized, the hearts of providers have not. Over-the-counter service wouldn’t have provided the care and understanding that I need, and I am so enormously grateful to all those who have given their lives, businesses, and hearts to this industry of care. It is my hope that together we can lead all those with impairment out of the nothingness that I know too well.
Thank you for everything you do. You’re changing lives.
– Micah Bobiak