Written by Karen Montagnese Friday, 09 October 2009 00:00
Editor’s Note: Karen Montagnese, co-president of the Long Island Chapter of the Foundation Fighting Blindnes,s has written below about her own experience losing her sight. She urges readers to consider White Cane Safety Day and Long Island VisionWalk.
It is only natural to want to feel good. This appears to be a basic human desire. After all, Sigmund Freud built an entire body of work on the Pleasure Principle. His premise being that we act in such a way so as to maintain pleasure and avoid pain. In most cases, as we grow and mature, we find a path that serves us to this end. I know that I was doing just fine, well on my way to a life that felt good. I had friends and a family. I was productive and I contributed positively to society. My ego was well fed and I felt good. Sure, there were challenges, but I adjusted and I bounced back.
Around the age of 30, the bumps and bruises came. I was running into things, real physical stumbling blocks - not just psychological ones. I was actually banging myself up countless times. As the years passed my injuries mounted and an ice pack became my new best friend. How long was I going to put up with this? It surely did not feel good. My realization that change was necessary would not come easily; it was as if I had to have it banged into my head, literally! The world before me became more risky and confusing. My confidence was shaken and my ability to power through was faced with the need for a seismic adjustment. It was more than facing a fork in the road, reassessing, and moving on. I had to embrace a new and different environment, something foreign, bewildering, scary, and unknown. I felt like I was in a different world—my own unique place—where I had to adapt to a whole new point of view. It was a paradigm shift. My vision was getting worse and by the time I was 40 I could no longer rely on my sight to direct me. It was time to develop a new skill and a new sense of perception.
Now, at 52 years old, I am wonderfully different. Although I need a white cane, what I once saw as a symbol of weakness has become my mark of strength. The white cane has freed me and has allowed me to realize my true humanity. I am different than I was before my sight diminished but I remain basically unchanged. It is as if this new found freedom unlocked the human that lurked beneath the surface, who had always been there but who couldn’t emerge without a catalyst. At first I was embarrassed to be seen using a cane and I asked my mobility instructor to take me out of town for my lessons. He was sent to me by the New York State Commission for the Blind and Visually Handicapped. He was full of experience and empathy, so he was not at all surprised by my request for privacy. As I practiced, it felt so awkward to be tapping a stick. It did not feel liberating. Furthermore, my kids were as freaked out as I was. Yet this experience became, for all of us, a life lesson in acceptance. We all grew and developed a true understanding of what it means to be unique. As much as it feels good to be like others, it feels great to be free to be yourself! During my public debut I was full of insecurities. I poked people with my cane. I made fun of my use of it. That was stupid, because I wasn’t simply mocking myself, I was inadvertently mocking all who rely on a cane for independence. I realized pretty quickly that was not what I wanted to be doing. So the cane became part of my wardrobe. I waited and waited for the day that I would feel “at one” with my cane. It took a while and I am not sure of the exact date, but I know now that it has happened. Today, I feel naked without my cane.
The blessing and the curse of retinitis pigmentosa is that it is a progressive disease. It takes hold of you gradually giving you all sorts of time for denial and denunciation. I am very proud of myself for making the transition to using the cane well before I became completely blind. I have all sorts of great success stories because of this early transition, but I still have lots of work to do. My skills can surely be sharpened. For example, I need to stay organized—this includes keeping a neat desk. Also, it is crucial that I learn to touch type. All of us with vision challenges benefit from the new technology. The help now available to us is awe- inspiring. I want to learn and install some reader/speech recognition software on to my computer. These are not small tasks, but when I finally tackle them I believe the results will be cathartic. Yet, I am still so resistant. The last bit of my vision remains. It teases me and I continue to use it, but I torture myself trying to read and type. My reliance on former tools that worked with full sight has to stop. I do not feel good giving up these skills but nor do I feel good avoiding the tasks ahead.
October, 15 is White Cane Safety Day. On this day every year since 1963, our nation celebrates the achievements of people who are blind or visually impaired. President Lyndon B. Johnson was the first to proclaim White Cane Safety Day. He said, “A white cane in our society has become one of the symbols of a blind person’s ability to come and go on his own. Its use has promoted courtesy and opportunity for mobility of the blind on our streets and highways.” On Oct. 15, 2000, President Bill Clinton reiterated this message: “With proper training, people using the white cane can enjoy greater mobility and safety by determining the location of curbs, steps, uneven pavement, and other physical obstacles in their path. The white cane has given them the freedom to travel independently to their schools and workplaces and to participate more fully in the life of their communities. It reminds us that the only barriers against people with disabilities are discriminatory attitudes and practices that our society has too often placed in their way. As we observe White Cane Safety Day, 2000, let us recall the history of the white cane, its emergence as a tool and a symbol through history; a staff of independence.”
This Oct., with many others, I will be celebrating my cane. My cane has given to me the gift of vision. It has helped me navigate both physically and emotionally. With it I have grown and expanded my awareness. I must plan a big party. I love my “staff of independence.” INDEPENDENCE…ahhhh…what a good feeling!