by Sandy Troiano
(Editor’s Note: Sandy facilitates a community event called “The Ins and Outs of Sight Loss Later in Life” on Tuesday afternoons at 4 p.m. Eastern.)
I am totally blind. I have no light perception and cannot tell if it is day or night. I join the blindest of the blind.
It wasn’t always this way. I lost all my sight close to 15 years ago, when I was 55. I am completely used to being blind now and, most of the time, don’t think about it, my mind focused on other things. In short, I am OK with my blindness.
I wasn’t always so sanguine about it. In fact, as I kept losing sight I felt a combination of anxiety, frustration, and loss. Let me explain some of those feelings I can still recall and, perhaps because I am at a distance from them, understand even better in retrospect. It is important for seniors losing sight or people trying to help those who are to recognize these psychological issues as they seek to progress on this journey.
A major concern of some persons who experience sight loss at an older age is the potential loss of identity. Will I no longer be viewed as myself and instead gradually be viewed as the blind person? Will my family and friends wonder how much assistance they will need to give me, whether they can continue to enjoy certain activities with me, or whether I will become their burden? As I lost sight, one of my friends began concentrating on pointing out every obstacle in my path despite my assurance my cane would find them. This killed any chance of discussing other things. Another friend mused on whether we could find any activities to do together as she focused on the visual aspects of entertainment. I know people who have avoided using a cane or paratransit precisely due to this fear, as if they could hide their vision loss as they stumble along. This is not due to vanity or a sense that blind people are less worthy, as some might assume, but rather as a consequence of the fear that one’s individual identity will be lost as one morphs into that blind person.
Another concern of the elder newly blind is the loss of privacy. Before sight loss, that person could go to a store and purchase whatever he or she needed in total privacy or anonymity. Now, unless the person chooses to ask a store employee for assistance (which can have mixed results) or to make purchases online (again with mixed results and some timing issues), he or she must rely on a family member, friend or aid to find needed items. While this may not sound like a major issue, it is a notable invasion of privacy that can be quite disconcerting. Also, the person was used to walking lost in the crowd but now, as he or she stumbles or tries using a cane, many people may offer assistance. This is, of course, generous of them and can be quite helpful or needed, but it shows clearly that one is now under observation and that sense of privacy or anonymity is gone, probably for good. This is especially hard to accept if the help giver crosses the line between providing assistance and becoming patronizing.
Finally, I would note that people losing sight at an older age want to make as few changes in their lives as possible. Obviously, they will cling to what little vision they may have, even if an audible screen reader and white cane could make their lives easier and safer. They will want to learn new methods slowly over time, grasping only what new steps they must take when the need becomes overwhelming. To push them to adapt to new techniques and technologies before they are psychologically ready to do so will likely lead to great frustration and backfire.
It will be easier for seniors facing substantial vision loss or blindness to deal with all that this entails if they interact with people who have already gone through this. Most governmental agencies and non-profit organizations that offer vision loss training do not address the foregoing issues nor assist seniors with social, cultural, recreational or entertainment activities. As I lost sight, I was fortunate to join a team of blind and visually impaired dragon boaters. While my impetus was simply to get on the water, the major benefit to me was to be with a group of blind and substantially low vision persons who did not focus on sight loss but, instead, on how fast they could propel the boat. Taking the focus off vision allowed me to release some of my anxiety about it and see that its lack does not curtail many activities. By observing how my cohorts asked for help with dignity when they needed it and proceeded on their own when they did not, I realized that I could do this, too. The training offered by the governmental agencies and non-profit organizations is definitely necessary to continue life with some independence, but the opportunity to be with people who have faced the same challenges and interact while focusing on matters other than vision loss will help relieve some of the psychological issues that accompany it.
The anxiety will lessen over time as the seniors begin to see that sight loss is a livable condition that they can manage quite well, especially if they are able to do so on their own terms. Eventually, they, too, will no longer concentrate on the blindness and let their minds focus on other things. During the vision loss transition period, however, they will have to deal with emotional issues that differ from those that people who have been blind for most or all of their lives have faced. These seniors will fare better if support can be provided for their unique psychological concerns.