For My Mom and for Myself: A Path to Peer Mentoring of The Hearing Impaired
Sometimes even now, when I watch two people speaking to each other - whether in rapidfire banter, or in clipped argument, or in the animated sharing of ingredients for a great recipe, or the bawdy telling of a good joke - I am in awe of the miracle of human language. What a marvel it is that our species has the capacity to create complex strings of sound – encoded with phonologic and syntactic and semantic information – so that a fellow traveler in this life is able to take in a collection of ideas simply by hearing them. Spoken language is so powerful and ubiquitous the medium for connecting two human beings that, when the ability to use it has been permanently disrupted, the connection to life itself is threatened and remains imperiled unless an extraordinary set of resources happens to be waiting in the wings.
From the time that I was ten years old until the day she died, I watched my mother, a person with severe sensorineural hearing loss, become increasingly locked in her own world, physically present and yet struggling to remain present at all. Her connection to even the most mundane verbal exchanges slowly and unrelentingly became entirely dependent on her relationship to my Dad. He loved her so much, and he wanted to help her, so he selflessly and steadfastly became her conduit to the universe outside herself. Eventually, near the end of her life, her need for his immediate physical presence heightened; this, I knew, was the outcome of her reliance on him as her only tool for survival. Watching my mother fade away in this way from her characteristic posture of poise and beauty was an incomprehensible loss to me, one that oddly enough set me determinedly in a direction that has opened new possibilities, ways of solving problems, and attitudes towards difference and my own integrity.
My passion for learning about hearing loss and the many skills and technological tools available for its effective management had its roots in witnessing the landscape of my mother’s story. It is likely, however, that I would have put the residue of painful feelings and loss squarely behind me if I had been able to dodge the genetic bullet of hearing loss and maintain the ability to hear well. When I was diagnosed with a mild loss by my audiology professor and department head at my college in 1968, however, I began my personal struggle to face the reality of life with a hearing impairment. I don’t think that I was very different from most people whose ability to hear begins to fail: I didn’t want other people to know, and I went out of my way to hide the disability from others and from myself as well.
To my great fortune, a mix of experiences in my history directed the course of my story with a kind of fortuitous alchemy, slowing down my determination to somehow skip over the fact that as a participant in the human language game, I was becoming only a shadow of myself. While initially I had only the sketchiest of maps for forging a path through my worry about my hearing loss, the years of my early adulthood were filled with messages that encouraged young women to actively build their lives with intention and purpose. I believe these same early influences that motivated me to pursue a high level of education and to building a meaningful work life were key factors years later as I struggled to adjust to my changing ability to participate in conversation. This serendipity was as much at play as the fact that in 1981 and again in 1984, I was blessed with two daughters and was determined to model for them the qualities of resilience and resourcefulness that I wanted for myself. Moreover, I have been blessed with an army of loved ones and friends who model for me lives lived with pluckiness and honesty, and these alliances encourage me to examine the challenges that face me and to adapt with as much courage and creativity as I can muster.
Thus, over time I have become an active self advocate. Through my membership in the Hearing Loss Association of America (HLAA), I have discovered a universe of resources and advisors. When I made my way to my first HLAA convention in 2003, my discovery of a seminar on the emotional and logistical complexities of disclosure and guidelines for deciding when and how to tell people about one’s hearing loss was a profound turning point in my journey; that first seminar on disclosure helped me to begin to build an internal library of strategies for making choices to help me relate with friends and loved ones with authenticity.
I believe that, like my mother before me and like every hearing impaired person I have ever met, avoidance of the acknowledgement of hearing loss was driven by my fear of what hearing loss would mean in my life. For true, the interruption in my ability to hear easily has presented a range of emotional and psychological challenges that will be with me for the rest of my life. Because I have been blessed with resources and levels of support which my mom and dad, her stalwart and loving ally, could not have begun to imagine, fear will not be one of my challenges. My life has been enriched beyond measure by the groundbreaking and profoundly important work of HLAA and for the brilliant models for effective aural rehabilitation generated by Matthew Bakke, PhD and his colleagues at Gallaudet University in Washington, D.C. It is with great gratitude and in my mother’s cherished memory that I begin my training as a peer mentor for people with hearing loss.