Reflections
Own the Equinox Day 24 | Journey Through Hearing and Vision Loss: Living with Usher Syndrome
By Martha Steele
With Usher Syndrome Awareness Day just two days away, this seemed an appropriate time to reflect back on our journey together. Living with Usher syndrome involves a constant series of adjustments to the repercussions of both varying degrees of hearing loss and progressively worsening vision. Successfully coping with the challenges presented by dual sensory loss requires resilience, determination, and acceptance of what you cannot control while addressing what you can. It also requires support, awareness, and cooperation from those in your web of personal and professional relationships that span across a lifetime.
For others to support me and to undergo their own adjustments to my constant changes in a decades-long process, it has been important for me to show my determination to live an active life, to graciously and gratefully accept help when I need it, and to forge ahead independently when I can. Fundamentally I am confident that I can cross any bridge that I come to, but I generally don’t worry about crossing it until I get there.
The most challenging time of this journey so far has been the past decade, with its inexorable march of worsening central vision. Hearing loss has been part of my reality since birth, and hence, I have never known a time where I was not dealing with hearing loss. It has just been part of who I am and I often paid little attention to what seemed to me as a youngster growing up to be mostly an inconvenience. But to go through more than fifty years of good central vision and then to see that decline over several years leaving me with very little useable vision now at age 64, well, that has been challenging.
It is one thing to know what may lie ahead but it is quite another to actually experience the worsening vision. As much as I think I might have been prepared for where I am now, it is jarring to visit familiar places and realize that what you once saw clearly, you can no longer see. Even in my own living room, I can no longer see who or what is there. I no longer turn lights on most of the time because I navigate just as well if not better via touch and memory of where things are. I would not be truthful if I didn’t admit to being despondent from time to time about the declining vision. But at some point, you have to accept what you cannot change and just move on, and that is what I have tried to do over and over again. Bob likes to say that one of my favorite phrases is, “It is what it is,” and indeed, I try to focus on what I can do and not what I cannot do.
But as I noted in a previous post, there is no room for self-pity here. I am an extremely fortunate woman and have benefited from wonderful family and friends that ground me in reality, provide me with honest feedback and direction, and surround me with support and love. I have had innumerable opportunities to enhance skills designed to address hearing and vision loss that I have been able to take advantage of since early childhood. I have enjoyed a long and successful professional career leading to a comfortable retirement. My expectations and the expectations others have had for me have always been high and why not?
It is the way that you respond to your challenges that help others best respond to you. If you are positive and proactive, then others will view you far more favorably than it you retreat and isolate yourself. If you work to better yourself or your skills, others will come alongside you to help and support you. If you take responsibility for doing everything you can to address your challenges, others will come to respect you as a person who happens to have a disability rather than a person defeated by a disability. It is our responsibility to empower ourselves in the face of challenges, to seek services that will help us be part of our community, to be worthy of the support that others give to us, and to engage rather than disengage.
I feel comfortable in my own skin and feel no particular need for any special treatment just because I happen to have Usher syndrome. The emphasis here is on the person, not the condition or disease, and the bottom line is we will all be remembered by the way we conduct our lives and how we treat each other rather than by physical characteristics that we happen to possess.
Tomorrow: Reflections (cont.)
September 15, 2016: 2 Days Until Usher Syndrome Awareness Day
Miles Walked Today: 8 miles, Arlington, Somerville, Cambridge and Boston
Miles Walked to Date: 147 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 is also a National Trustee and Boston Chapter President of the Foundation Fighting Blindness
