By Jule Ann Lieberman, CLVT, Vision Loss Team
Over the past few editions of The PCB Advocate, the Vision Loss Resource Team has discussed eye conditions that most frequently result in progressive vision loss. We have also discussed new ways to manage and use prescription medications in a safe manner. PCB has developed a relationship with Dr. Andre Watson for emotional counseling for our peers. As peers we support each other in many ways. In this issue, I want to begin the discussion with our readers about when it might be time to make changes or add tools because of decreases in functional vision. It is my hope that, by sharing both my personal and professional experience, peers with progressive loss will recognize themselves and begin the process of rehabilitation once again.
According to Dictionary.com the meaning of the word rehabilitation is as follows, “the action of restoring someone to health or normal life through training and therapy after imprisonment, addiction, or illness.” We can relate this definition to vision loss as there comes a time when we may need to take action to restore to “normal” life by learning new techniques or alternative strategies.
As a peer, I have lived with what seems a never-ending process of rehabilitation. Some techniques and tools have come from vision professionals and many more from peers with vision loss. Let me start by sharing my personal story. For some of our peers this story may be difficult to relate to in visual terms as they themselves never had vision from birth. I am hoping that you bear with me and perhaps can relate to this story as you may have dealt with a functional change in your own experience.
One of the distinctions as peers with progressive vision loss is that we have a memory of vision. I can remember a time in childhood when I could see the stars at night and being filled with wonder at the beauty and vast nature of the sky. By the age of 9, I could no longer see stars but could make out the phases of the moon. This, too, disappeared by the time I was in high school. I was the kid who always had a book in her hand or pencil drawings of cartoons or faces of loved ones. By college, this disappeared. The faces of those I loved, both family and friends, were no longer visible to me. This meant I could no longer read their emotions or confirm their attention. Now in my later years, unless they make noise or speak to me, I have no idea they are nearby. This illustration is not to elicit sympathy, but rather, it is a description of a progression toward lessening visual function.
As a peer and low vision therapist, I have witnessed others “hanging onto” techniques or tools that are no longer productive or safe. Take for example a person who struggles to see the face and hands of their wristwatch whether designed for low vision or the standard face, turning and twisting their wrist an inch away from their “good eye” and taking great effort to read the time. A talking or braille watch might be a much better use of their energy and more effective in reading the time.
I have also fallen into the trap of “trying to pass as sighted” with my reluctance to begin using a white cane for safe mobility. A very patient peer noticed me tracing the edge of a step with my foot. She remarked politely, “my O&M instructor says if you need to find the edge with your foot, it is time to use a white cane.” I then had to examine why I was so resistant. Was I afraid of being recognized as blind? Was I afraid of learning a new way to travel? The answers were probably “yes” to both questions. I needed to learn a new safe way to travel and sought professional support shortly after that experience.
In my 50s, I felt that I needed to return to graduate school to continue in a career helping others with vision loss. The academic world certainly had changed dramatically in the 30 years since my bachelor’s degree. I needed to become proficient in using alternative access to coursework and completing my assignments. I never had the opportunity to receive formal instruction in braille, so this limited me to access through computers with text to speech and some narrated textbooks. The Master of Science degree in Low Vision Therapy provided me with a broader knowledge of various vision conditions and options for therapy and tools to restore function. Do I consider myself an expert? Not exactly, as I recognize that peers are individuals and have over time developed techniques or have used tools different from what might be considered rehabilitation techniques. My personal philosophy is that techniques or strategies that are safe and effective for each person are the correct techniques and strategies for that person.
I recall an early childhood experience when my grandfather was trying to teach me how to tie my shoelaces. After several attempts to teach me “his way,” I managed to tie my shoelaces “my way.” He reported back to my grandmother, “I have no idea how she is doing it, but she is getting it done, and that is all that matters.”
Peers, I encourage you to share your techniques with each other and try to respect different approaches.
Thank you for reading my story and thank you for the many ways you all have shared your experience to aid in my continued rehabilitation process.