Twilight: Losing Your Vision Demands a Different View
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 turn your life inside out. It did mine.
Five years ago, I was diagnosed with age-related macular degeneration (AMD), joining 10 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.
Chutes and ladders
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, former director of the Low Vision 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.
Many organizations and agencies provide services for people who are visually impaired. Even if the word "blind" is in the name, they can help people who still have some sight.
Sometimes it is hard, particularly for people who are newly diagnosed with a serious vision problem, to tap into the system. But there is help out there. To start, contact the major hospital in your area and ask if they have low vision services. You may also get help from the state rehabilitation service -- office for people with visual impairments -- or your local Area Agency on Aging. Be patient and persistent; you may have to make many calls before you connect with someone who understands what you need.
The list below includes phone numbers and web sites for national organizations. If you cannot locate appropriate services in your local area, the national organization may be able to refer you to their local affiliate.
Basic reference guide: AFB Directory of Services: A directory of national and local agencies and government services for visually impaired and blind people in the US and Canada. Possibly available in local libraries. Published by the American Foundation for the Blind 800-232-5463, www.afb.org
National Membership Organizations with local affiliates:
American Council of the Blind 202-467-5081; www.acb.org
National Federation of the Blind 410-659-9314; www.nfb.org
Other national organizations that can make local referrals:
National Association of Area Agencies on Aging 202-872-0888; www.n4a.org
AARP, formerly the American Association of Retired Persons 888-687-2277; www.aarp.org
National Eye Institute 301-496-5248; www.nei.nih.gov
Interview with Amy Gabala, director of the Low Vision Information Center in Bethesda.
Interview with members of Iona Senior Services.
American Medical Association. Age-Related Macular Degeneration. Journal of the American Medical Association. Volume 295, Number 20. May 2006
National Eye Institute. Don't Lose Sight of Age-Related Macular Degeneration. May 2005.