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Insights Into Loss By
Elinor Waters
Some
things about having low vision are funny. Like the time I served my
husband vanilla ice cream mixed with chicken fat. (I thought it was lemon
sherbet.) For the most part, though, being visually impaired is a
frustrating experience that can transform your life. It did mine. Five
years ago I was diagnosed with age-related macular degeneration (AMD),
joining 1.6 million other Americans with a condition that is the leading
cause of low vision among older adults in this country. Since then, the
disease has progressed so that today I cannot drive, read without
electronic aids, recognize faces or shop without help. Since
the initial diagnosis, I have gone through all the stages of grief,
alternating between feeling afraid, depressed, angry and accepting.
Sometimes I feel like I am playing the children's game Chutes and Ladders.
As soon as I make it up a ladder and become more accepting of my
situation, I hit a bump and slide down a chute. For example, I was proud
when I flew to San Francisco alone to visit family, then devastated when I
could not respond to my grandson's request to read him a story. I've
received counseling from another mental health professional. But what has
helped me most has been meeting with other people who are visually
impaired. As a former gerontological counselor, I have led groups with
older adults for many years. Now I'm not just doing this for them -- I'm
doing it for me. In
the support group, sponsored by Iona Senior Services, we share feelings
and strategies for coping -- from how to cross the street safely to how to
ask for help without crying. We talk about fears of losing independence
and becoming a burden. And we laugh a lot about the difficulties and crazy
situations we encounter. One
man, a retired military officer, told us how he sometimes tries to answer
people who are talking as they walk down the street. "I think they
are talking to me, because I can't see their cell phones," he says. Another,
a retired business executive, recounts a common response when he asks for
directions. "Turn right when you see that big white house on the
corner," someone will say to him. When he explains that he can't do
that, he says, "the helpful stranger usually repeats the same
directions, but in a much louder voice." It's
a good thing we can laugh. Dry Eyes and Wet Eyes AMD
comes in two forms, "dry" and "wet." Both affect the
macula, the central part of the retina. The dry form is far more common
and progresses much more slowly -- though eventually it can steal just as
much vision. In
dry AMD, the light-sensitive cells in the macula break down, gradually
eroding vision. In wet AMD, abnormal blood vessels grow behind the retina.
These blood vessels may leak blood and fluid under the macula, causing
rapid vision loss. Although only 10 percent of people with AMD (myself
included) have the wet form, it accounts for 90 percent of the severe
vision loss associated with AMD. My
AMD first showed up after I had cataract surgery. Though the surgery was
deemed a success, my vision didn't improve, so I was referred to a retina
specialist. He used fluorescein angiography, a procedure that involves
injecting dye into a patient's arm, then taking pictures of the back of
the eye at several time intervals to detect and measure the leakage of
blood and other fluids. The doctor found significant leakage in my left
eye. A year later, more angiograms showed my right eye was affected, too. Because
my eyes were deteriorating at an unusually rapid rate, I visited two major
eye care centers, the Wilmer Eye Institute at Johns Hopkins in Baltimore
and Wills Eye Hospital in Philadelphia. Despite my desire to try anything
that might help, I was deemed ineligible for several clinical trials
because my type of wet AMD didn't fit their research protocols. l did
participate in one trial of photodynamic therapy, but later found I had
been in the placebo group. I have had many feeder vessel laser treatments,
designed to cut off the flow of blood to the larger blood vessels in the
center of the retina, but I don't know if they've slowed progression of
the disease. At
this point, most of my central vision is gone, but peripheral vision
enables me to get where I want to go by walking or riding the Metro. My
focus now is on making the best possible use of the vision I have left and
on emotionally accepting my situation. This hasn't always been easy. Losing
your vision doesn't threaten your life, but it can change your lifestyle,
damage your self-image and leave you in fear that the independence you
treasure will be stolen along with your eyesight. I've gotten a lot of
help from a low-vision specialist, a mental health professional, visits to
resource centers that demonstrate low-vision aids and technology, and
especially from other people who are coping with the loss of their vision. Tech to the Rescue For
people like me, or those who are just entering the world of limited
eyesight, a good low-vision specialist is invaluable. Suleiman Alibhai,
who practices in Virginia and Maryland, sees his job as not just assessing
eyesight, but helping people in a process of rehabilitation. He helps
introduce patients to a huge range of devices including specialized
magnifying glasses, telescopic lenses and electronic video magnifiers. I've
learned, with equal parts frustration and gratitude, to make use of this
technology. My computer has a software program, ZoomText, that magnifies
words on the screen and also talks. I have a closed-circuit television
that enlarges text, enabling me to do some reading on a monitor. Without
these two pieces of equipment, I could not have written this article. When
it comes out, I will read it -- or, more accurately, listen to it -- by
dialing the Metropolitan Washington Ear. Every day volunteers read and
record articles from newspapers and magazines, including The Post. The
readings are available by telephone or on a special radio. I
also listen to talking books, available without charge from special needs
libraries. I use "bump dots" to help me locate settings on stove
dials, safety pins to distinguish blue clothes from black ones, and rubber
bands to identify particular medications. I have a talking watch, clock
and calculator, and I call telephone information without cost. I fall,
burn and cut myself less often than when I could see well, because I am
more careful. The downside is that everything takes longer than it used
to. Amy
Gabala, director of the Low Vision Information Center in Bethesda, says
people are amazed by the hundreds of low-vision aids available -- from
talking clocks and check-writing guides to an enormous variety of
magnifiers and closed-circuit televisions. "The technology that's
available today makes it possible for nearly everyone who has low vision
to do the things they want to do, even if they have to do it in a
different way than they're used to," Gabala says. Other
experts can provide mobility training -- helping people with impaired
vision learn to use a white cane, take the Metro and buses safely, or
otherwise learn to get around without bumping into things. They can also
help people learn to modify their homes and offices to accommodate their
limited vision. Anger and Acceptance In
addition to acquiring helpful equipment and gadgets, those of us with low
vision need to attend to the emotional impact of our disease. At
one point, when I was doing a lot of crying, I realized that I needed help
in handling my depression and ups and downs. Fortunately I found a social
worker who helped me come to terms with my situation. My
support group has been another source of help. Group members encourage
each other to stay involved in activities they enjoy and to try new
ventures. Several members, who want to be useful to others, do volunteer
work. Two of them help people in the early stages of Alzheimer's disease.
A former seamstress -- who can still identify colors and fabrics but has
trouble crossing the street -- volunteers in a church thrift shop. Such
activities convey our main message, that we want to lead active,
independent and meaningful lives despite the challenges posed by our low
vision. The challenges are real, but so is our determination. When one almost totally blind member was asked how she manages to prune her rose bushes, she replied, "Same way I always did, but with a few more ouches." She now grows flowers and herbs that she can identify and enjoy by smell. Copyright
© 2002 Global Action on Aging
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