Posted By: Tom Perski

March 12, 2010

On a daily basis, as I work with people with low vision, I observe the entire range of coping mechanisms that people use, both positive and negative. Today, I want to highlight some inspirational stories. Two of these are about individuals with Stargardt disease, a juvenile form of macular degeneration, while the third is about a 94 year old woman, diagnosed with Age Related Macular Degeneration (AMD).

Obviously, macular degeneration as a child or teenager is much different than living your entire life and then losing your central vision at the age of 75. It is only natural that older people who lose such a precious sense can go through the stages of denial, anger and even depression to a great degree. They are grieving the loss of not only their eyesight, but their independence, mobility, and for a time, a drop in their quality of life.

I was diagnosed with Stargardt disease at 19 years old. It was certainly a shock to me and my family. It progressed slowly over the next five years, to where I had to stop driving a car and dropped out of college. It was not until I found the Closed Circuit TV (CCTV) reading machines that I began to work hard at a set of new goals. Once I identified these goals, no one could stop me. I worked hard at reading every day, signed up to return to college, finished my undergraduate and went on to get a Master’s degree.

Some people see the preceding as an inspirational story. Looking back, it was a difficult time, but the persistence and hard work helped me realize that I can accomplish many feats throughout my life. Adjusting, adapting, conquering; these traits are crucial to overcoming adversity. However, the process is grueling and relative to the individual.  Some may overcome quickly while others may take a bit longer.  What remains constant is that after 1, 5, 10, 15, or 20 years, a person will finish adjusting and coping.  Once that process is complete, one may begin applying him/herself in an entirely new manner, perhaps to an entirely new set of goals.

The inspirational stories below, brought to mind many of my own struggles and tribulations. They also highlight that, over time, the human spirit can accomplish just about anything! Many older people who develop macular degeneration do not have this advantage. While young, a person’s life is still malleable as compared to the rigid structures and set processes formed over more years on this planet. The elderly have lived their entire lives conducting their day-to-day activities in certain ways.  Adapting becomes harder after a long life of well established routines and less time is available to those who are older to entirely rearrange their lives and set new goals as a young person would.

The lesson from these points is that vision loss is difficult at any age. A diagnosis forces people to reexamine, refocus, rebuild, relearn, and remain active in working towards success and happiness in their future.  Let us remember that we are all trying to do the best we can with what we have. Adaptation need not be a lonely process; support, listen, help one another, and use these inspirational stories to spur us on!

A young woman with Stargardt disease-20/800 - A beautiful Quilter!

A young man with Stargardt disease – An Olympian!

The Art of Aging Gracefully – A 94 year old woman with macular degeneration.