June 26, 2000

What Lee Allen began 12 years ago as a paper for a scholarly medical journal blossomed into a unique illustrated book on age-related macular degeneration.

The book, "The Hole in My Vision: An Artist's View of His Own Macular Degeneration," gives readers insight into what someone with macular degeneration actually sees something even modern technology cannot provide, says Allen.

Allen, who worked with Iowa artist Grant Wood in the 1930s, joined the University of Iowa Department of Ophthalmology as an ophthalmic illustrator in 1937. For the next 39 years until he retired in 1978, Allen combined his artistic talent with his ever-increasing knowledge of the human eye and photographic skills to provide the UI ophthalmology faculty and staff with priceless impressions.

In a highly unusual step that reflected his value and dedication to the department, the university gave Allen emeritus status upon his retirement. Emeritus is commonly granted to faculty, but rarely to staff.

Allen's book odyssey began in 1988, when he began to see spots that he recognized as the onset of macular degeneration, a leading cause of blindness in the United States.

"I got in touch with the department, but they were unable to detect anything they couldn't see what I saw," Allen says. "I continued to make notes of the changes in my sight and drew pictures of what I was seeing."

Six years later, ophthalmologists were finally able to confirm the diagnosis. Meanwhile, Allen continued to work on what he thought would become a scholarly paper for an ophthalmology publication.

"As time went on, I could see that I had too much information for a journal and began to think in terms of a monograph," Allen says. "I also conferred with neuro-opthalmologist H. Stanley Thompson, MD, because I knew he knew what those internal pictures, known as entoptic, meant."

Allen described Thompson as a computer whiz, who was able to transcribe Allen's illustrations and text on a disk. "Eventually, the disk contained what turned out to be the book."

Later, Allen says he also got encouragement and support from his laser surgeon, Dr. James C. Folk, and Dr. Thomas A. Weingeist, professor and head of the department of ophthalmology.

Originally designed primarily for ophthalmologists, especially retina experts, the book now is regarded as a tool to also inform macular degeneration patients and their families about the disease.

In the book, Allen sums up why he documented his own vision loss. "What fascinated me was that I discovered that by blinking my eye, I could see the outline of the damage that was being done to my macula. I found that I could, by sketching it, monitor the activity of the disease process. This in turn has made it possible for me to alert my doctor to new problems while there is still a chance that the laser treatments will do some good. It is my hope that this information will help others to add some years of good vision to their lives."

Now 89 and no longer able to drive, Allen struggles to maintain his freedom to live alone in his eastside Iowa City home. "I get around," he says. "I cook my own food. I don't expect to get totally handicapped for a number of years."

He explained that persons with macular degeneration can be called legally blind and still be able to see "because you only lose the central part of your vision. The blind area covers only about one-fourth of your eye you can still see out of the sides. It's kind of like a donut with the hole representing the blind spot."

Allen was an art student at UI when he was offered a job by Grant Wood. He worked with Wood on several large murals in public buildings in Iowa. He felt that when he completed his studies with Wood in the 1930s he was an accomplished artist and draftsman, skills which he applied to medical illustration. Allen's 120-page book is available in selected outlets at $50 for paperback and $100 for a limited edition hardback. The text is printed in large type. It was commissioned by the UI Department of Ophthalmology and Visual Sciences and the UI Center for Macular Degeneration in observance of the department's 75th anniversary. Proceeds from the book, published by Penfield Press, will help support the center.

© 2000 Ross M. Hagen.