Interview with Dan Roberts and Keith Whatley by Patti Hill, author of Seeing Things

I didn’t set out to draw attention to a disease and accompanying issues, but as I got to know people with Age-Related Macular Degeneration (AMD), my admiration at their courage (These people get shots in their eyeballs!) and good humor grew tremendously.

After reading Birdie’s story in Seeing Things, I knew my readers would want to know more about AMD and Charles Bonnet [pronounced Bo-nay] or CBS. First, let’s turn to the leading advocate and educator in the AMD world, Dan Roberts. Later, you’ll find interesting interviews with people who experience CBS regularly.

Also, I’ve included links to web sites that will expand your knowledge.

Dan Roberts is a visually-impaired educator, author, composer, theatrical director, and musician. He founded MD Support in 1995 as a result of his own need for support and information about central vision loss.

He is the author of The First Year—Age-Related Macular Degeneration (Marlowe & Co., New York, NY, 2006) and is a consultant for pharmaceutical companies, lighting manufacturers, and dealers in protective eyewear. He is a Scholar with the Roundtable Group Expert Services Firm and a member of the low vision panel of the Society of Industry Leaders (SIL) under the auspices of Standard & Poor's Vista Research. He is a member of the Low Vision Leadership Consortium and the Low Vision Rehabilitation Group.

Dan and Christina have been married since 1968. They have three children and four grandchildren.

Patti: What is Age-Related Macular Degeneration (AMD)?

Dan: Age-related macular degeneration (AMD) is a progressive disease of the retina wherein the light-sensing cells in the central area of vision (the macula) stop working and eventually die. The disease is thought to be caused by a combination of genetic and environmental factors, and it is most common in people who are age sixty and over. AMD is the leading cause of visual impairment in senior citizens. An estimated fifteen million people in the United States have it, and approximately two million new cases are diagnosed annually.

Most cases of macular degeneration are the "dry," or "atrophic", form, distinguished by yellowish deposits of debris in the retina.

About 10-15% of macular degeneration cases are the "wet" (or "exudative") form, in which newly-formed, immature blood vessels grow from the choroid ("choroidal neovascularization") and leak into the spaces above and below the photoreceptor cells. This process can damage the photoreceptor cells and cause permanent central vision loss.

Patti: How do people discover they have AMD?

Dan: The early stage of the disease is identified by:

a. cellular waste deposits, called drusen, in the retina  
b. loss of pigmentation of the retina

No obvious symptoms or vision loss are present at this stage. The intermediate stage is identified by many medium-sized drusen or one or more large, irregular-shaped drusen (called "soft" drusen). An affected person will notice blurred or blind spots ("scotomas") or distortion of images in the central field of vision. Also, more light and higher contrast may be needed for seeing.

Patti: Are there effective treatments for AMD?

Dan: There is not yet a treatment for dry AMD, but pharmaceutical treatments and some surgical procedures are showing success in the treatment of wet AMD. Cures for AMD will likely come within a decade from the fields of genetic replacement therapy and stem cell transplantation.

Patti: What are some of the greatest challenges people with AMD face?

Dan: At its worst, AMD will damage only central vision, which arises from the macular area, comprising less than 5% of the total retina, but responsible for about 20% of the visual field. This means that an affected person will find it difficult or impossible to read, drive, or recognize faces. The peripheral vision, however, is left untouched, so macular degeneration does not, by itself, lead to total blindness.

Many affected people move about with no assistance at all and lead independent, productive lives. The most successful of them have also learned to use a wide variety of visual aids such as magnifiers, closed circuit TV readers, special bioptic glasses, etc. It is highly recommended that a person with advanced macular degeneration enroll in a program of low vision rehabilitation. This program will provide evaluation of visual needs, assistance with environmental adaptations, and training in the use of appropriate low vision devices and computer software.

Patti: If one of my readers knows someone with AMD or has been diagnosed with AMD, how can they learn more about living well with their disease and get the support they need?

Dan: Macular Degeneration Support is a world-wide non-profit public service organization whose mission since 1995 has been to provide information and support for people who are affected by macular degeneration and similar retinal diseases. The organization's 850-page web site receives over 4 million hits annually. In addition, MD Support hosts an email discussion group, an Internet message board, a telephone support group, and a global network of more than 200 affiliate groups serving over 3500 otherwise "unconnected" low vision seniors.

For more information about MD Support and all facets of macular degeneration, visit www.mdsupport.org, call (816) 761-7080 or write to MD Support, 3600 Blue Ridge Blvd, Grandview, Missouri 64030.

For much more information about AMD and a place to hook up with other good folks who suffer from AMD, go here: www.mdsupport.org

Buy Dan’s extremely informative and helpful book at: http://www.amazon.com/gp/product/1569242860/ref=dp_return_1/104

I owe many thanks to Dan and the generous people of MD Support for help with Seeing Things.

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I can’t blame Dan for how my imagination played with the idea of Charles Bonnet Syndrome. I was walking my dog, Tillie the Taskmaster, and listening to a science podcast. In the interview, a man with low vision relays his experience of seeing things that aren’t really there. He’d just finished listening to the novel 1776. Afterward, as he relaxed to reflect on the story, and one of the characters came to life in his darkness.

And the character winked at him.

My author’s mind went into overdrive. What if my protagonist met a literary character? Who would it be? What sorts of trouble could the literary character cause for my protagonist? What would happen if I pushed the boundaries of typical CBS and let the character talk? What would he say? Most importantly, could God use a quirk of someone’s visual center to accomplish His good work?

Of course! I needed to learn more.

Charles Bonnet Syndrome (CBS) occurs in about 10% of once-sighted people who have experienced damage to their retinas. Quite simply, the visual cortex of the brain still wants to see things, and so, it creates visual experiences seen only in what we call the mind’s eye, but what these folks see is very, very real, not at all ghostlike and the detail is amazing.

I’ve interviewed many people with this syndrome in the course of writing Seeing Things. All of my interviewees found the visions pleasurable, yet perplexing, until they got used to seeing imaginary children playing outside their windows, or cars streaming down their driveways, or construction crews building a presidential vacation home next door. But no two people experience CBS quite the same. Sometimes the manifestations are triggered by a reoccurring incident. That’s what Keith Whatley discovered. Here’s a portion of my interview with him:

Patti: When did you first realize you were seeing things that weren’t there?

Keith: I was napping on the living room couch, very early in the morning, and while half awake [and/or] asleep, I opened my eyes and saw a medium sized black dog floating in the air, in a standing position, facing me about four feet away, hovering about a foot over the coffee table. He wasn't moving, wasn't making any noise. [He] was just there. That was the first time I had experienced that phenomenon, and it was—coincidently?—a couple of months after I had started getting intra-ocular injections of Lucentis® for Age Related Macular Degeneration. I've now seen images under similar circumstances subsequent to that.

Patti: How did you react to your first encounter with CBS?

Keith: I found it very interesting, for several reasons. The lack of motion in what appeared to be an almost life-sized live animal indicated it was a fabrication of my brain, in some way, and not real. I thought that was exciting, mainly because of the great detail I could see, and it was in color. In a few minutes the image faded out and finally disappeared.

Patti: What do you see? Have the manifestations changed over time?

Keith: The dog [I] described, plus since then I've seen mostly inanimate objects, like intricately crocheted doilies, other cloth items like home-made placemats and such. All are in color and finely detailed. Recently I [saw] a knitted or crocheted cubical shape, about ten-inches on the side, and it was very clear and far too detailed to describe, but had it lasted long enough, I could have dictated all the details of the object. [It was] very interesting, nothing indistinct or fuzzy at all! I have seen no humans…just non-living objects, floating about four feet away from my face.

Patti: Are the manifestations pleasant for you?

Keith: Oh yes. Every image I've ever seen is not animated and never presents a threat in any way. The only way images I see…float and move…so it's never anything to be concerned about. The crocheted cube…moved toward my face, and I did wonder when it would stop. However, by the time it got to within two to three feet, it started fading out, as they all do.

Patti: Has CBS ever caused problems for you?

Keith: None whatsoever. These images never occur in the daylight, only at night, in a dimly lighted room, when I'm half awake. I now know that it is CBS, and the images are always benign, always colorful, and I find them quite interesting, just like a fun dream would be. I always knew this was a construct of my mind/brain, months before I knew the instances of appearing images had a name.

Ed Machonis of Fishkill, New York emailed me about his experience:

I have CBS. It nearly always manifests as three male characters, 25 to 35, walking toward me in Wal-Mart or a supermarket. They are all wearing hats and are dressed with topcoats. The colors of their clothes are gray and beige They are always walking toward me but we never meet. I believe that when they never caught up with me, I realized they were CBS.

I have had AMD (Age-Related Macular Degeneration) for about 4 years. I have no vision in my right eye due to a detached retina caused by coordinal bleeding. My left eye is 200/20. Both eyes have wet AMD. I am 88 years old.

 I consider [seeing the men] a pleasant experience. I look forward to seeing them and consider them old friends.

For more information about Charles Bonnet Syndrome, go to: http://www.rnib.org.uk/xpedio/groups/public/documents/PublicWebsite/public_rnib003641.hcsp

Seeing Things is by no means a medical story. It is a story of familial reconciliation with an element of what’s called magical realism. Something highly illogical, like Huck Finn coming to call, happens within the context of fictional reality, a story that reflects a world you and I would be comfortable in.

Charles Bonnet Syndrome provided the jumping off place. As long as Huck doesn’t talk, he fits quite nicely into what most would accept as CBS. But when he finally responds to Birdie verbally, well, things get interesting. The reader must choose to decide if Huck’s interactions are “real,” a bout of psychosis, or something else entirely. Let me know what you decide.