Vision Rehabilitation
Living Fully With Vision Loss

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By Lylas G. Mogk, MD
Visual Rehabilitation & Research Center
Henry Ford Health System

"Life," said Helen Keller, "Is either a daring adventure or nothing at all."

Living with new vision loss is indeed a daring adventure which vision rehabilitation aims to make safer, more predictable and more manageable. But, as many of you know better than I, living this daring adventure with comfort and joy requires more than the usual purview of vision rehabilitation: the tools, training strategies, practical adaptations and working through the maze of local and national services. Making the daring adventure work for you requires understanding your experience of seeing, communicating that experience to others, dealing with the practicalities of the world, dealing with the mentality of the world, and dealing with the internal demons that contribute to making vision loss so fearful to people who are used to depending on sight. I will talk about these challenges.

So, what is the experience of seeing with central vision loss? First, it can be unpredictable and surprising. If you have central vision loss, you and those close to you, might wonder why you see some things and not others. You may see a little black fly on a white wall but not recognize your friend's face. You might see a little white rabbit sitting on the grass but not see an 11,000 lb African elephant standing in front of a large gray rock. You might be frustrated when you spill coffee pouring it into your friend's navy blue cup when you just poured it into your white cup without a problem. You might wonder why you can read your mail but not read a newspaper that has the same size print, or a restaurant menu that has even larger print.

These apparent discrepancies are confusing to others, too, because your central vision loss is invisible to everyone else. Your eyes look perfect, like they always did, you make eye contact, you get up from your chair, head out the door and find your way around, so there are no outward signs of what's happening with your vision.

The reason for these apparent discrepancies is that vision and vision loss are more complicated than the way we usually think of them and even the way we measure them. We usually measure vision exclusively in terms of visual acuity - which is the degree of detail you see, on the 20/20 scale: 20/50 or 20/100, for example. The higher the second number the less detailed the vision. And then we assume that visual acuity number gives us complete and reliable information about an individual's functional vision. But this doesn't work with central vision loss because vision is not one-dimensional. It is made up of many elements that come together to give us the experience that we call "full sight" and those other elements have great impact on functional vision that is not reflected in visual acuity numbers. These important other elements beyond acuity include contrast sensitivity, glare, and the pattern of the central vision loss and significant losses in these, particularly in contrast sensitivity, can develop even before acuity declines.

First, contrast sensitivity. Loss of contrast sensitivity makes it very difficult to see anything that isn't set against a background of contrasting color. Human faces are the best example. Any individual human face is pretty much all one color, so it is very difficult to distinguish an individual's features. My younger daughter used to say to my father who had very advanced AMD, "Grandpa, I think you're fooling me. How come you could see that little button on the floor but not know who I am?"

This is why it is easier to see the fly on a white wall than your friend's face and it's easier to see the small white rabbit on the grass than the elephant in front of a big gray rock. And this is why you can spot your black leather gloves if you left them on your white kitchen counter but not if you left them on your mahogany coffee table. And it's why you can see that mahogany coffee table on a light rug, but a glass table the same size disappears into the rug. It doesn't matter how big the object is if it's the same color as its background. This seems counterintuitive if we are thinking only in terms of visual acuity, of how much detail you can see. So, to manage contrast loss, it is important to assess and maximize the contrast conditions at home and at work.

The second element is glare. When you lose contrast sensitivity you need much more light to see whatever it is you're trying to see. But at the same time, loss of contrast sensitivity brings tremendous sensitivity to glare, making glare both indoors and outdoors intolerable. So the same individual who needs more light to see may keep his or her drapes closed to block out the light during the day, and that can also be confusing to their family and friends.

That means assessing and optimizing lighting and controlling glare in home and work environments are central strategies for maximizing function, in addition to managing glare outdoors and in public places, and in the transition from outdoors to indoors.

And the third element I want to talk about is the pattern of the central vision loss. But first let's get oriented with the model of the eyeball on the screen, which I will describe. The eyeball is at a slight angle with front of the eyeball on the left and the back on the right of the picture. The side of the eyeball on the right is cut away so we can see the inside back of the eyeball. The entire inside lining of the eyeball, on the slide, everything that's colored orange, is the retina. The retina in our eye is like the film in a camera. The difference is that in our eye only one small area of this retina sees details, and that's the macula.

The macula is at the very center of the retina at the very back of our eyeball. Every time we want to see something in as much detail as possible, we look right at it, and when we look right at something, we are using our macula to see it. Conditions that affect central vision affect the macula, creating a blind spot in all or part of the macula. The formal name for the blind spot is "scotoma".

But not all scotomas are created equal. The pattern of the scotoma - its size, shape and specific position, is unique to the individual so to maximize that individual's function, it's important to understand his or her scotoma pattern. For example, the scotoma, or blind spot, can be in the shape of a ring or a doughnut with a small island of vision in the middle and the visual acuity in that little central area may be pretty good.

This slide shows a page of print with a doughnut-shaped scotoma, called a ring scotoma, superimposed on it, that blocks out the print in the area of the scotoma.

There is a little ring hole or doughnut hole in the scotoma so small that through it you can see only one letter at a time. If your scotoma pattern is like this, what happens is that you read one letter at a time on the ophthalmologist's chart very well, so your visual acuity number is good. But when you actually try to read a whole word or a whole sentence, it doesn't work because you are just seeing one or two letters at a time.

Then when you tell your doctor or your family that you can't read, they suggest you buy a magnifier and this becomes really confusing because the magnifier makes it even worse. It makes the letters bigger so even fewer of them fit into that spot.

Scotomas or blind spots that are in the very center of the macula and cause decreased visual acuity also vary in size, in shape. This slide shows a central scotoma superimposed on a street scene so the traffic light is completely blocked out. If you have a blind spot right in the center of the macula, your brain picks another spot to use to see the most detail it can, a sort of next-best spot. It could be above the blind spot or below it; it could be to the left of it or to the right of it.

Location of the next best spot - Two important things about this next best spot are first, that even though the brain has picked a spot, the individual may not be aware of where it is so training and practice is usually needed to find it quickly and consistently and use it efficiently. And second, the strategies that will work in using that next best spot depend on where that spot is in relation to the blind spot - whether it's above it or below it, for example, or to the left or right.

At our centers we have a wonderful piece of technology that allows us to map the scotoma and the next best spot very accurately, but our occupational therapists also use another method to demonstrate this to patients which can be used to map the scotoma and identify the next best spot as well. It is a flash card method that's described in the book.

All of these things - contrast, glare and scotoma patterns are important in rehabilitation and if they are not understood can be a source of confusion and frustration for the individual with central vision loss and for their family and friends.

And the misunderstanding escalates if you are among the 20% of people with vision loss who see things that aren't really there - flowers or animals or people, for example, that are superimposed on the real world. This is called Charles Bonnet Syndrome and it's analogous to the phantom pain that someone might feel in an amputated finger. When the macula isn't sending clear messages to your brain, your visual system just makes some up and even though you know they're not there, they look perfectly real.

We asked our patients to describe what they see to an artist or draw it themselves, and I will show you a few of these drawings. Here are pink flowers our patient sees on trees in the middle of winter in Michigan, which certainly are not there, and she knows they're not there.

Another sees this red brick apartment building with green windows appearing on the expressway and then when she looked up, it appeared in the sky as well.

Another sees babies' faces in a repeated wallpaper-type pattern on her plain living room wall.

And another sees little girls in white dresses playing in her back yard. This is a woman who cannot see her own grandchildren playing in her yard but these images are crystal clear. She said, "I know they're not real, but I quite enjoy them."

One of my favorites is a full-dress Canadian Mountie standing in her living room every now and then. When we asked, even though she knew he wasn't real, whether she was ever frightened to see a man standing in her house, this 82 year old grandma grinned and said, "Heck no, he's handsome."

People with Charles Bonnet Syndrome know the images are not real, that it is just their eyes playing tricks on them, but they're not sure what others will think, so they tend to keep it a secret.

Communicating Vision: Between Sight and Blindness - And that brings us to the second topic of describing and communicating the experience of vision loss to others. Part of the communication problem with vision loss is that we don't even have words in common usage to describe it. Our usual vocabulary gives us two choices: sight and blindness. So first of all, if you're losing central vision, you are acutely aware of it, while the people around you, given a choice between sight and blindness, see that you are not blind and figure there's no problem. Second, if you are gradually losing central vision and the choices are sight and blindness, it feels like you must be heading for total blindness, which is not the case as most causes of central vision loss spare the peripheral vision. And finally, when we use the word "blindness", we think we are all talking about the same thing, but actually we aren't.

In 1893 the British Parliament said blindness means "too blind to read the ordinary school books used by children." Forty years later, the U.S. government said, "Blindness means vision insufficient for the ordinary activities of life for which sight is required," and they declared that legal blindness - at that time called economic blindness - means best visual acuity of 20/200 which is the largest or second largest letter on most standard eye charts, or a visual field diameter of 20 degrees.

And these are still the parameters of "legal blindness" in the U. S. This slide shows two people and an eye chart blurred to the degree they would be with visual acuity of 20/200. Defining a line of 20/200 separating sight on one side and blindness on the other has caused continuous controversy ever since the term legal blindness was developed, and it prompted Lloyd Greenwood's famous comment in the '50s, that, "More people are blinded by definition than by any other cause." But nevertheless, to many who describe themselves as blind, blindness means legal blindness, which is actually visual acuity of 20/200 or less. But those who grew up with sight usually understand the word blindness as meaning no vision at all.

If you have central vision loss you have much more than no vision at all, but certainly not full sight, namely low vision. So the dichotomy of sight and blindness does not reflect the lived reality that visual acuity is actually a continuum between perfect visual acuity and total blindness. It includes mild visual impairment, moderate impairment, severe impairment, profound impairment and near-total impairment. On this continuum there is no clear cut-off that reflects function or not.

As we've just talked, contrast sensitivity, glare and scotoma pattern play important roles irrespective of acuity. Someone with acuity of 20/70, for example, but very poor contrast may have more difficulty using their vision to do a task than someone with half that much acuity but twice as much contrast sensitivity.

But the other important fact is that functionally, the bottom line is whether or not you can do the task with whatever vision you have. If you cannot do it, for example cannot read the newspaper, it doesn't matter if you almost can. It doesn't matter if you miss it by an inch or a mile. For that task, whether your visual acuity is 20/70 or 20/200, the impact is the same. So legal blindness does not define the point at which functional problems are present and intervention is necessary, and with gradual central vision loss, that point occurs way before legal blindness.

This then creates one of the challenges that individuals with gradual progressive vision loss face in dealing with the rehabilitation system because in many places the state rehabilitation systems and many private agencies required legal blindness to qualify for services. The result is that people often have to live in this limbo of supposedly good vision but poor function for years without rehabilitation until their vision slips to the point of legal blindness.

This situation is what brought ophthalmologists into the field of rehabilitation for the visually impaired and inspired us to gain Medicare coverage for rehabilitation for individuals with any level of vision loss, including those whose acuities are better than legal blindness. The first formal, written Medicare policy for covering vision rehabilitation was right here in Michigan in 1997. By 2002 we had gained coverage in 28 states and in May of 2002 Medicare adopted a national policy to offer vision rehabilitation to Medicare beneficiaries. Because Medicare is medical insurance, however, rehabilitation training can be done only by occupational therapists, since they are recognized medical providers of rehabilitation services of all kinds.

A demonstration project is ongoing in six areas of the country to assess the impact of adding non-medical blind rehab and vision rehab professionals as Medicare providers. These include Certified Low Vision Therapists who are not also occupational therapists, Certified Vision Rehabilitation Therapists, who used to be called Rehabilitation Teachers for the Blind and Visually Impaired Orientation and Mobility Specialists who train individuals usually who have limited or no peripheral vision to walk safely in all environments.

Since our program is a medical rehabilitation program, our rehabilitation staff includes seven occupational therapists who are all also Certified Low Vision Therapists, and one of our OTs is in addition a Specialist in Orientation and Mobility for the Blind and Visually Impaired. Occupational therapists like ours who master the skills of vision rehabilitation, are exceptionally good, as they are able to address the full spectrum of function of the individual, which is particularly important when working with seniors, who make up the majority of our patient population.

Medicare has recognized that vision rehabilitation is excellent preventive medicine, helping avoid falls, medication mix-ups, poor nutrition and suspension of exercise and depression. But the catch for individuals younger than Medicare age is that not many other insurers have followed Medicare's lead, including many HMOs. So I would urge you to advocate with your insurer to offer this benefit, just as most insurers offer occupational therapy training for other physical impairments.

On the other hand, the good news is that most states have vocational rehabilitation programs for younger employed individuals and for these legal blindness is not necessarily required. States also offer independent living programs for older individuals, the VA has excellent programs for veterans, and the NFB offers training programs in several areas of the country as well. These programs may have tenuous funding, however, especially in the current economy, so there are many cracks in the system for younger individuals who have gradual loss of central vision that begins after school age. And one of these cracks is often right in the ophthalmologist's office.

For most of the 20th century the population who were blind or visually impaired were young people with diseases or injuries that made them legally blind immediately or at a young enough age that they were identified by pediatricians or in schools and offered services through state and school programs. The ophthalmologist's responsibility at that time was to diagnose the condition, treat it if possible, and confirm that the visual impairment was permanent. They did not have to provide rehabilitation services, refer patients to services, or even know about such services.

Low vision optometrists had the responsibility of prescribing visual aids to the children and young adults who were brought to them but they did not have to know about the rehabilitation part - the whole spectrum of strategies and environmental adaptations beyond devices - and they also were not responsible for providing those services, or referring patients to them.

But individuals who develop visual impairments as adults are not in schools where they would be identified as needing help. They are in ophthalmologists offices, so it is now the ophthalmologist who is in a position to provide this information.

The American Academy of Ophthalmology has recognized this new responsibility and has launched an initiative to change this, to make ophthalmologists aware of patients' needs for information. This is called the SmartSight Initiative and the first part of it is to have ophthalmologists copy and give to patients a handout that includes information on patterns of vision loss, coping with vision loss and resources, including an 800 number through which to locate services in their area. A copy of the Academy handout can be found at the end of this article.

It is also important for vision rehabilitation professionals who are used to working with clients who have limited peripheral vision to recognize that different strategies are necessary for those who have lost central vision but retain peripheral vision. Individuals who are used to depending on vision will use the vision they have, and rehabilitation strategies need to be shaped with this in mind and with attention to things like lighting, contrast, glare and patterns of central loss.

We live in a sighted culture - The goal of vision rehabilitation is to help sighted individuals in a sighted culture make the transition to living fully as visually impaired individuals in that same sighted culture. And indeed we live in a sighted culture. We have built our buildings and crosswalks, designed our appliances and furnished our offices and homes with the assumption that everyone has full vision. Our love affair with the automobile has produced urban geographies in most parts of the country that require everyone to drive or to walk long distances. As you know better than I, fully sighted people routinely assume or expect full sight in others and practice a myriad of social behaviors that are sight-based, such as giving directions by pointing, responding to comments with facial expressions, or seeing certain body postures, pedestrian movements, or ways of doing things - like reading - as "normal" and others as not.

If we had tried to build a society and a culture that would condition us to be totally dependent on our vision and to experience it as central to our lives in every respect - physically, socially and emotionally - we could not have done a better job. As a result, those of us who are sighted are strikingly ill-adapted to vision loss. The loss of central vision to almost any degree in a fully sighted adult compromises functioning more globally than any other single impairment. It affects almost every aspect of living, not only in daily personal and professional function, but also in gender roles, living arrangements, communication patterns and relationships.

Losing vision also means risking and perhaps confronting the prejudices, assumptions and expectations of sighted people. So it is not surprising that sighted Americans on the one hand can acknowledge that a person who is blind can achieve many things that sighted people routinely do not - like running companies, climbing Mount Everest, publishing literary works and so forth - yet at the same time sighted people fear vision loss more than almost any other impairment, except the loss of mental capacity. This fear is in part fear of the unknown, of not knowing how one can possibly do desired activities without full vision. But there's even more to it than that. Adults who lose vision were, until that point, sighted people themselves, and they often carry with them many of the prejudices, assumptions and expectations of sighted people as they experience visual impairment. Without even realizing it, they turn these prejudices against themselves. And as a result, people who do not fear death may fear being disabled, being "other", being "less than", being "not normal".

These are powerful words - disabled, normal and not normal - and they're being re-examined in medical humanities and particularly in the emerging field of disability studies in the humanities. These disciplines are offering us the opportunity to rethink our assumptions about what "normal" really is, and along with it to reexamine our concept of disability itself.

My comments here are largely taken from Lennard Davis's book Enforcing Normalcy and from the work of my daughter, Dr. Marja Mogk, including her PhD Dissertation titled Narrating Vision: Disability, Aging, and Autobiography and her presentation at the 2005 Women in Ophthalmology conference in Wyoming.

Marja is a professor of English with a specialty in disability studies at California Lutheran University and co-authored Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight, (Ballantine, 2003).

So, if you asked Mr. or Ms. Middle America what disability is, as Marja did, what would they say? Their answer would be something like this: "Disability refers to a physical injury or an abnormality that causes someone not to function as normal people do." This understanding of disability puts the problem in the individual's body and labels the body's function normal or not.

This is known as "the Medical Model of disability" and it is so widespread in the general public and among professionals in medicine and rehabilitation that it seems to be a natural, a common-sense perception. But notice that this Medical Model doesn't include any reference to community or physical environment and notice that it is very culturally specific to us, both medically and socially. And finally, notice that the medical model is a definition of disability that the non-disabled came up with. It doesn't reflect the lived experience of what it is like to have an impairment.

I want to do a quick exercise to illustrate how the Medical Model of disability excludes consideration of the role of the culture and environment.

If I tell you there's a 16 year old boy with severe dyslexia, would you say he has a disability? Most people say "yes." But what if I tell you that he lives in a preliterate Amazonian culture where reading has nothing to do with life? Then he is not disabled at all.

What about a 5 year old female with uncontrollable epilepsy? Is she disabled? Most people would say "yes" to her, too. She has a disability. But what if I tell you that she's Hmong. As the wonderful book The Spirit Catches You and You Fall Down, describes, among the Hmong people epilepsy is a sign of spiritual privilege. To eliminate this child's epilepsy would take away her special relationship to the divine and her special status as gifted within her family and her community. In her Hmong community it is this child's epilepsy that gives her a favored place. In that society, she is actually not disabled but empowered.

What about a 20 year old female with untreatable infertility. Most of us would say "no." It is perhaps an unfortunate impairment, but we would say it's not really a "disability" because it doesn't affect her ability to do any activities of daily living: to care for herself or to do work. But what if I tell you that she is from a culture where the failure to have biological children means that a woman never becomes an adult, but instead remains in a state of limbo, a child-woman who cannot establish her own home, be recognized as a full community member or achieve spiritual development. When she dies, special burial rituals must be completed so that she can be reborn as a whole, fertile, fully-formed person. So in this society, an infertile woman is considered disabled.

So, what these examples show is that the Medical Model of disability is insufficient and limiting. It doesn't allow us to recognize that disability arises from the convergence of several factors:
1. The impairment itself - whether it is visible and how it affects function
2. The individual's own characteristics - his or her gender, age and response to the impairment
3. The cultural context - community beliefs about the impairment, about visual appearance, and about independent function, the structure of the economy and the type of work the person is expected to do and the historical and cultural setting
4. The physical environment - the terrain, the lighting, the infrastructure of buildings, the transportation systems, the information systems and so forth.
5. And last, but not least, other people - their actions, their attitudes, their decisions.

Disability, in other words, is a relationship - a fluid relationship - between a person, his or her body, and the entire environment, including other people. This understanding of disability is known as the "Social Model" and it arose out of the disability rights movement. It reflects, much more than the Medical Model, the actual experience of what it is like to live with an impairment - how one experiences one's body, one's abilities, and the environment.

The Social Model of disability makes accessibility possible because it recognizes that the "problem" of disability is not simply in a person, but is constructed by the environment as well. The medical model on the other hand depends on everyone accepting a standard of normal and being able to define exactly what is normal and what is not.

So what is "normal"? It came as a surprise to me to learn that "Normal" is a relatively new concept in the English language and to learn how it got its meaning. Until around 1840 the word "normal" was a carpentry term meaning "perpendicular." At that time, Sir Robert Galton, the father of modern statistics, adopted it and redefined it for use in the bell curve, which he developed, and in other tools of the new science of statistics to measure and rank the qualities of individuals and populations.

Sir Robert Galton was a cousin of Charles Darwin. In developing statistics, he was seeking to apply Darwin's principles of natural selection to humans for the betterment of the society. He coined a new term for this progressive strategy, which could be adopted by governments: eugenics. At the heart of eugenics was this notion of normal vs. abnormal. Once we divided the groups and labeled them, action could be taken to eliminate one group for the benefit of those who remain.

We have forgotten that there was great enthusiasm for the cleansing potential of eugenics among the highest levels of academia, medicine and political leadership, progressives and conservatives alike. Many famous people of the era belonged to eugenics organizations or supported eugenics efforts financially.

Eugenics was so mainstream that it was a part of American popular culture in the first half of the 20th century. The Kansas State Fair in 1920 featured the Fitter Family Contest.

Contestant families had to submit medical records, IQ tests, and prove that they had no abnormal, impaired or defective relatives. It was a celebration of genetic selection rivaled only by the livestock competition, which it was supposed to supersede. And in 1920 in Kansas, it didn't get bigger than that.

Eugenics promised progress. As the President of the University of Wisconsin said at the close of WWI: "We know enough about eugenics so that if the knowledge were applied, the defective classes would disappear within a generation." The "defective classes" at the time included a large and surprising gamish of people including those with congenital conditions like deafness, those with diseases like diabetes and epilepsy and even infectious diseases like TB and syphilis, those with addictions like alcoholism, and those with socioeconomic problems, like poverty. To a great degree, Hitler's thinking was shaped by Anglo-American eugenics and it ultimately took Hitler to give eugenics a bad name and knock it out of us.

But it's not all gone. We can see the legacy of "normal" in the way we talk about people with disabilities - people who are blind or deaf, for example. Henry Grunwald, the former chairman of Time, Inc., developed AMD and wrote a memoir of his experience titled Twilight. In this passage he recounts presenting achievement awards in Boston to two women - one a deaf lawyer and legal scholar, the other a blind championship skier and cyclist - for overcoming their disabilities: "The spirit they displayed in surmounting their disabilities was deeply moving and caused me to think... about the 'handicapped.' I had always considered them a group apart. It was not easy for me to accept that I was one of them..."

Our personal demon: "Us" and "Them" thinking turned on ourselves - Henry Grunwald's ideology of disability leads him to thinking of "us" and "them", a world of the "normal" and "abnormal." And that was his personal demon, that kept him from living fully and joyfully as a visually impaired person.

The concept of "normal" is like your own well-trained attack dog sitting in your living room. If you stay normal, he'll stay nice. And we are the ones who signal him to turn him on ourselves. This is important for all of us, if we keep in mind that we are all only temporarily abled.

But how about those individuals that Henry Grunwald referred to, who were getting awards. Cara Dunne, the blind champion skier and cyclist, said upon accepting her award: "If you offered me sight right now, I would tell you to give it to someone who felt it was something they could not live without... I don't think the things I need to be able to do are things that can't be done without sight." This is not a woman who experiences blindness as "abnormal." She's just being herself and that includes being blind. Why isn't that normal, too? As Georgina Kleege puts it in her memoir of blindness, Sight Unseen: "The most valuable insight I can offer is this: blindness is normal to me."

Now, clearly, vision loss is not initially experienced as "normal" for people who are used to having sight and then lose it. But hopefully Cara Dunne and Georgina Kleege will help us keep in mind that we define ourselves, we define our reality. And hopefully examining the background of the dangerous word "normal" will help us recognize where some of the fear of visual impairment lies and overcome it.

And that we must do, because fear is paralyzing. Anger, on the other hand, can be motivating, if we don't hang onto it too long. Many sighted people react to new vision loss with anger, especially if it is announced abruptly and dismissively. Grace was told by her ophthalmologist that her vision couldn't be improved and that she should just stop driving and come back in three months.

This dignified grandmother said in a group discussion later, "I used to dream of running my doctor over with my new gray Lincoln. I never would have imagined that I'd say something like that, but for a long time macular degeneration took the graciousness out of me." Grace was a Thomas Jefferson sort of person. He advised counting to 10 when you're angry and counting to 100 when you're very angry. Zelda on the other hand preferred Mark Twain, who said "When you're angry count to 4 and when you're very angry, swear."

Here's Zelda, from Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight, by Mogk and Mogk, N.Y: Ballantine, 2003, p. 176:

"The day my doctor told me that I had low vision from macular degeneration, I came home and smashed every dish in the house. All twelve place settings, two platters and a cake plate. They were white china with little blue flowers that looked like little squiggly bugs to me. At the time, I was crying and screaming and smashing. There were chips everywhere; the kitchen floor was a mess."

"When I was done, all I had left were a half-dozen navy blue plastic bowls and a few coffee mugs, but I saved my life. If I hadn't smashed those dishes I'd be an angry woman with a pretty dining room setting that I couldn't really see anyway. I was angry for a long time as it was, and I sometimes still am, but smashing those dishes was a turning point, a declaration. I am going to live, and worrying about little blue flower bugs on my plates is not part of living anymore."

We don't recommend our patients go home and smash all their dishes, but I do want them to recognize that Zelda's experience helped her in two important ways; it allowed her to express how she felt, work through the anger, recognize that she is still the very same person she always was, with all the talents and skills and humor and love and energy. And this is critical because Zelda's initial anger freed her to seek help to learn new ways of doing the things she wanted to do, interacting with this difficult society, staying engaged, which is essential to your physical health and emotional health. Staying engaged feeds your spirit and helps you avoid the depression of long term anger turned inward, depression that is all too common among sighted adults who experience vision loss.

But a word about depression. Be sure you're clear that it is not anger or disgust, it's not a bad attitude, and it's not a weakness of character, of fortitude or of effort.

Depression is not sadness. It is emptiness, as if someone pulled the plug and everything inside you - all the joy and all the sorrow and all the life - just drained right out. And depression happens to healthy, strong people dealing in private with great loss and it is the enemy because it saps your energy and incentive. You can learn to live well with vision loss, but you cannot live well with depression.

Combating depression may include vision rehabilitation, resources, a support group, counseling, and sometimes medication, and absolutely includes staying active and engaged so that vision loss can take its place as part of your life, but not its single defining feature.

So to those of you with vision loss, and to your families and friends: keep up hope for a medical miracle, but don't wait for it. Commit to doing as much as you can now with the vision you have and join with enthusiasm the wonderful community of people who share this experience with you, as those of you here today are doing. Don't stop doing things at home. Instead use the tools you need to do them. Don't stop going places and seeing friends. Instead, tell them what you need in order to participate. Think of alternative ways to participate and alternative ways to get there.

One of my patients felt sad and embarrassed because she couldn't recognize anyone at church, so instead of not going she volunteered as a church greeter. "It's perfect," she says. "I stand at the door and everyone shakes my hand on the way in and tells me who they are, so I get to say hello to everyone." And she of course is an inspiration to them exactly because she is eliminating the threatening dichotomy between normal and abnormal, between abled and disabled, for her and for them.

Staying active as an adult who is used to vision but has lost some or all central vision means taking some risks. We recognize physical risks as risks, but social risks are a big concern for people with vision loss, and no one avoids them. My father, who had advanced wet ARMD, asked mannequins for directions, took the wrong bus, hugged some strangers and passed old friends on the street without greeting them, but these mistakes did not cost him his friends or his dignity.

Francie Klein, who is a marvelous cook, made a cherry pie for dinner guests, but when she served it, it turned out to be made out of kidney beans, because she had mixed up the cans. Her friends didn't love her any less for it, in fact they probably loved her more. "We all had a good laugh about that," she said, "I'm lucky because my father taught me how to live with macular degeneration. He had it, too. He once took a bite out of a cork coaster, mistaking it for an almond cookie. "Dad!" I said, "That's a coaster!" "Well, thank goodness," he said, "I thought your cookie baking was going to pot."

Are you my wife? - And here's what our friend said, who was a lawyer in Michigan with advanced macular degeneration, in Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight, 2003, p 180-181.

"Low vision has challenged me to be less earnest. I'm an overachiever, and that's gotten me far in life. But sometimes I forget to have a good time. So I've really tried to strengthen my sense of humor, and not take it all too seriously. Rachel keeps me on my toes. We went to a big party last week. Rachel wore a pair of distinctive black and white patent-leather shoes. She disappeared into the crowd, so I went looking for her shoes. When I thought I'd found them, I leaned over, puckered up and whispered, 'Are you my wife?' This woman jumped six inches, and huffed, 'I certainly hope not!' 'Too bad,' I said, 'You don't know what you're missing!'"

"At the same party, I ate dry cat food. It was sitting in a bowl on the kitchen counter looking just like mixed nuts and pretzels. Rachel said, 'Sam, what am I going to do with you?' And we laughed so hard we had tears in our eyes."

If you, too, can learn to laugh with friends and family at your own mistakes and worries, it will make living much lighter. As Sam and Francie, and my Dad, knew, you are not your eyes. You are much more than your eyes. Your family and friends don't love you because of your eyesight. Your value to yourself, your family and your community does not disappear because of imperfect vision.

The Little Prince was right when he said, in the beloved childrens' book: "What is essential is invisible to the human eye." And that is true for our spirits and our souls.