SupportSight

Living with Low Vision

By Ron Lucey, Medical Services Specialist
Texas Commission for the Blind

This past summer I had the privilege being asked to speak to almost 300 patients and family members from Central Texas who had experienced vision loss from macular degeneration. Lea Bramnick with the Macula Vision Research Foundation and the doctors of the Austin Retina Associates organized the meeting. I myself had attended similar conferences; therefore, I was pretty sure that the leading motivation of most individuals who were attending was to hear about the next research breakthrough or therapy that will help restore some of their lost vision and "lost independence." Although I am confident that a treatment and eventual cure for macular degeneration is coming, my role that morning was to talk about living with the reality of low vision. Because I knew for a fact that it is still possible to lead an independent, productive, and satisfying life with low vision, my goal was to motivate others by relaying my own experiences.

This year is a milestone for me as I have lived exactly half of my life with 20/20 vision and half as legally blind. In 1984 while living in Plano, Texas, I began losing my vision to an uncommon eye disease called Lebers Hereditary Optic Neuropathy (LHON). The disease damaged my optic nerve (a close cousin of the retina) first in my right eye, and within a few short weeks both eyes were affected. Like macular degeneration, LHON robs people of their central vision, which is used for common daily tasks like driving and reading. I had only recently attained my "rights of independence" every teenager looks forward to by obtaining my driver's license. Needless to say, losing this new freedom to failing vision just before my senior year of high school was demoralizing. Despite this setback, however, I was still highly motivated to graduate from high school and make my way in the world as my older brothers had before me.

One year later, after graduating from high school, I attended the College Prep Program at the Criss Cole Rehabilitation Center in Austin. Upon my arrival, I met with the center's low vision specialist, who put me through a low vision evaluation. It had been months since my last eye examination, and my vision loss had only recently stabilized. The low vision specialist asked me to read the "Big E" on the eye chart from 20 feet away. With my central blind spot I could see the wall, but was unable to see the chart, let alone read it. After a brief pause, the specialist asked me to shorten the distance from the eye chart and stand 10 feet away. At this distance I was only able to read the top line and reluctantly asked for my visual acuity. The specialist quickly calculated that I had 10/500 vision, or put another way, 20/1,000 vision. Always the optimist, I paused for a moment of reflection, and proudly replied, "Yes, but that's still PERFECT 20/1,000 vision, right?"

Since that day, I have always believed that "having low vision is still a lot of vision." There are many more things I can see and experience visually than not. I'm fortunate enough to visually enjoy the scenic Hill Country, the faces of my wife and children, and movies from the second theatre row. I still use my vision to travel and find my way with visual landmarks. Similarly, most individuals affected by macular degeneration will always maintain good peripheral vision, which is still "a LOT of vision."

If I were so inclined, I could probably also list a lot of things I can no longer see, or no longer see well. However, this would be a terrible waste of time. What difference would it make? I personally have CHOSEN to believe that life remains full of opportunities, and I can use my remaining vision and the most useful low vision device available--my mind--to enjoy all that life offers. Each of us makes hundreds of small and large choices every day -- what shoes to wear, what to eat for breakfast. Seldom, however, do we take the time to choose an attitude. There are only two basic choices, negative or positive, so every day I CHOOSE to face the day's abundant challenges with the positive attitude of glorious conquest! The notion of choosing one's attitude is not new. However, I highly recommend the book "Fish!" by Stephen C. Lundin, Harry Paul and John Christensen for their ideas on shaping positive attitudes. This book is available on tape through your state's talking book library.

Too often, when faced with vision loss, a common complaint is not being able to do everything the same way it was done in the past. If you can be open and creative to new methods for doing daily tasks, you will quickly learn that there are many more things you can do independently than you first thought. I have learned that I can do just about anything in life by using alternative techniques. I don't think twice when dialing the telephone by touch, finding my house keys by feeling their shape in my pocket, typing on a computer keyboard without looking, or shaving without a mirror. Be patient. Proficiency does not happen overnight. You will need to practice new skills like dialing the phone by touch, and you may need assistance from a rehabilitation teacher or low vision professional. Once mastered, however, these simple skills will put you at a distinct advantage over others who still rely entirely on their vision to find their keys in the dark.

I often think about outcomes and goals instead of the sighted methods I may no longer use. A few examples are:

Most of us have heard the old saying, "Use the right tool for the right job." I have adopted this same truism in my own life with the few low vision devices I use on a daily basis. My most used device is a simple 20X pocket magnifier I carry for reading price tags at the store, signing a check, or reading a short agenda at a meeting. However, just as I wouldn't use a hammer to turn a screw, I have a few other devices that are more appropriate tools for other tasks. These include a CCTV for reading longer documents and paying bills, a bold 20/20 felt-tip pen for writing notes and phone numbers, and other more high-tech tools for using the computer and doing my job. Most of my low vision tools are fairly affordable (under $30) and my whole low vision toolkit was purchased for less than the cost of one or two modest car payments. Others may prefer different low vision devices, such as a telescope, stand magnifier, or bioptics. Before shopping for a low vision device, check with a low vision specialist (usually an optometrist or ophthalmologist that specializes in evaluating and prescribing low vision devices) to insure you get the right tool for the right job.

What lessons have I learned from my past 17 years living with low vision? I've learned that I (as well as every other person) have the potential to become more than I am today, despite any physical or mental limitations. This has more to do with one's attitude about life than visual acuity. Following the loss of my vision at age 17, I went to college, graduated with two degrees, made life-long friendships, traveled extensively, married, purchased a home, had three children, have a great career, and serve my community as a city commissioner.

The greatest challenge to any person with low vision is being the victim of low expectations, whether these are low self-expectations or the low expectations of family, employers or peers. Living a successful life with low vision starts with self-confidence, backed up with training, skills and the right low vision tools. Today, make a conscious choice. Choose to do all the things you like to do with an open mind to new methods and a positive attitude of glorious conquest! It works for me and it will work for you.