Own the Equinox, Day 2
The First Sign: Hearing Loss
Journey through hearing and vision loss: Living with Usher syndrome
By Martha Steele
My mother tells the story of driving a car with me, about four years
old, sitting in the back seat and her friend, Jean Simon, sitting up front with her. Jean told my mother that any time she wanted to say something to me, she turned her head towards me, even while the car was in motion. Worse yet, my mother remembers me standing up in the back seat and grabbing both sides of her head to turn her head toward me. My mother and I had already been making unconscious adjustments to hearing loss by ensuring that I could see the lips of whoever was talking to me.
These are but a couple of examples of how my mother learned of my hearing loss. Calls upstairs to bedrooms or outside toward the neighbor’s house where I was playing went unnoticed and unanswered. The spring in which I turned five years old (1957) proved particularly revealing, as Mother and her close friends, Jean Simon and Ruth Page, all looked for and found signs of hearing loss. In addition, I was not speaking very well. The mounting worry led to a visit with an audiologist when my hearing loss was diagnosed.
My kindergarten year included working with the audiologist to slowly
tolerate more amplification and to learn more lip-reading skills. For example, we had a device at home where I would put on headphones and my mother would speak to me, able to increase or decrease the volume of sound that I heard through the headphones. By the spring of 1958, I was fitted with my first hearing aid, a device that sat in my pocket with a wire leading up to my ear which was fitted with an ear mold.
But it was the next step in the process of learning to talk, lip-read, and use hearing aids that quite literally changed the course of my life. Our audiologist, Vilma Faulk, told my mother that I should attend a rehabilitation program in Rutland, Vermont, 60 miles south of our home in Burlington, Vermont, for my first grade year of school in order to master the skills I would need moving forward in school and life. This would mean that I would have to stay with a foster family during the weeks, returning home on weekends and holidays for the entire school year. My parents did not want to put me or them through the pain of such a separation.
Vilma asked my mother what her expectations were of me. My mother said that she expected me to go to college and have the ability to pursue a career. Vilma then bluntly told Mother that without this specialized training at this point in my life, such an educational and career goal would be much more challenging, if not unattainable. No parent should have to face such a wrenching decision, but with the strong encouragement of Vilma Faulk, they agreed to send me to Rutland.
I would stay with the Bishop family, as Patty Bishop was a sister of one of my mother’s high school friends. I was not a little girl that tolerated well any separation from my mother, even for a couple of hours, so the initial arrival at the Bishops and departure of my parents resulted in a puddle of tears and screams. A telephone call with Mother let me know that if I did not behave, I would not even be able to go home on weekends. Believe me, that got my attention, and I soon settled in to the routine, commuting back and forth sometimes with my mother, sometimes with another mother of a child attending the school, and sometimes on a bus.
Looking back, that first grade year may well have been the most important years of my life, and the difficult decision made by my parents one of the more courageous decisions they ever made. I learned to talk better, I learned excellent lip reading skills, and I essentially caught up to my peers in mainstream schools from which I would never lose pace again. The training at the school and subsequent years with the audiologist set me on a path where my hearing loss was just part of who I was, to be contended with but not dominated by.
As I developed as a young girl, there would soon be other signs of trouble, this time with vision, that we did not understand at the time. But, coming to grips with a diagnosis of a serious, blinding eye disease was still far off. First, I had to continue my adjustment to hearing aids and move forward in our local neighborhood elementary school.
Tomorrow: So, how do you pronounce that word?
August 24, 2016: 25 days until Usher Syndrome Awareness Day
Miles Walked Today: 7 miles: Wheeler Mountain Road to Wheeler Pond,
Wilderness Way and Wood Warblers Way, all within Barton, Sutton, and
Miles Walked to Date: 14.5 miles
Martha Steele is a member of the Board of Directors of the Usher Syndrome Coalition, as well as the Board of Directors of the Carroll Center for the Blind in Newton, MA. She also serves as a National Trustee and Boston Chapter president of the Foundation Fighting Blindness.