A Glance at a Silent Eye Disease
Floss Schumacher could see the enormous chandelier featured in “The Phantom of the Opera” when she caught the production at the Orange County Performing Arts Center last week.
And she could make out the phantom’s mask, “because I knew it was there,” she said.
“But when Christine pulled the mask off the Phantom, I couldn’t see him. His face meant nothing. If it was disfigured, I wouldn’t have known.”
Like her friend Mary Lou Hopkins Hornsby, Schumacher suffers from macular degeneration, an eye disease that can rob the aging of their central vision, leaving their peripheral vision intact.
“I can’t see a face on stage anymore,” says Schumacher, who has been an arts activist in Orange County since the ‘60s. “I can make out forms, color, hear the words, the singing. But not faces. We have had to change our seats at Segerstrom Hall to up front, where perspiration can blow in your face.”
Ed Schumacher said of his wife: “She can no longer recognize people readily. She’ll come up to someone she has known for years, and she’ll have this kind of blind look on her face. People don’t know if she’s snubbing them or mad at them because she doesn’t immediately detect who they are.
“The great concern I’ve had is that this will cause a severe depression for her . . . and that someday, after I’m gone, she will be very incapacitated. This gives me great apprehension.”
For Hornsby, whose degeneration is less severe that Schumacher’s, the worst part of the disease is the “loss of independence.”
“I don’t drive at night anymore,” said Hornsby, a charity activist who once covered society for The Times. “I don’t feel comfortable on the freeway. I have to be very careful to travel routes where there is little traffic. I’ve always been so independent that this is hell.”
Both women, who are in their 70s, are angry about the public’s ignorance of the disease. “Nobody seems to have gotten the word out,” Hornsby said. “If people knew about it, they might not be so frightened when they learn they have it.”
She still seethes when she thinks about that day. “I went to an ophthalmologist for some new contact lenses, had an exam and came out devastated,” she said.
Later, during a visit to the Doheny Institute in Los Angeles, a doctor rattled off the visual abilities she would eventually lose--"identifying people, watching TV, reading, threading a needle"--as she sat there, stunned. “Nothing had ever prepared me for this,” she said. “By the time he got to ‘threading a needle,’ I was crying. And I cried all the way home.”
Five years ago, Schumacher, now considered legally blind by the Braille Institute, noticed that her sight was failing. But she chalked it up to aging. “Of course my eyes are getting worse,” she told herself. “I’m getting older.”
But during a visit to an ophthalmologist, he screened her eyes for macular degeneration. “He gave me a grid with a dot in the center and told me to test myself, that if those little lines around the dot got wavy, to come back in. He didn’t go into detail. Macular degeneration didn’t mean a thing to me, didn’t frighten me at all.
“I didn’t do much about it--we were busy, moving to the desert at the time--until I got my desk set up and looked at the grid. I hadn’t looked at it for weeks. It was bad .
“I came back to Orange County and began to see Dr. Kuppermann at UCI. He is a wonderful man.”
Ask ophthalmologist Baruch Kuppermann, chief of retina service at UCI, about the research being done for macular degeneration, the hope of finding a cure, and he sighs.
“We are pouring huge amounts of resources into coming up with cures and treatments for macular degeneration with, quite honestly, very limited success.
“It is an incredibly frustrating disease. It’s the leading cause of visual loss in the Western world for people over the age of 55. It can be very mild or very severe.
“Here are these people who have led very productive lives, who may be enjoying retirement, and suddenly they can’t do many of the things that give life pleasure.”
The macula is a small, specialized area of the retina, the inside back lining of the eye, Kuppermann explained. Degeneration occurs when there is damage to the macula.
“We have found that the blue light in sunlight, which is made up of the colors of the rainbow, is toxic to the macula,” Kuppermann said. (Wear blue-blocking sunglasses when you’re in the sun, he suggests. They are the glasses with the lenses that are amber-brown in color.)
There is hope, someday, of “whole eye transplants,” Kuppermann said. “At this point, they are a bit of a pipe dream, but possible.
“The complexity of the optic nerve (which is connected to the macula) is about the same as the complexity of the spinal column. So, about the time we can cure paralysis, we will be able to do whole eye transplants involving the optic nerve.”
Meanwhile, Schumacher, who lives in La Quinta, continues to search out optic aids to make her life more manageable. A magnifying glass has become her constant companion. And a closed-circuit television enables her to magnify the printed page on a screen. Her watch is now audio instead of visual. “And I get a lot of help from people,” she said, smiling at Ed. “That keeps me going.”
Hornsby has joined the Luminaires, a local support group for the Doheny Eye Institute in Los Angeles (which has a satellite clinic in Orange).
“We’ve got a great benefit coming up on Sept. 25 at the Newport Beach Yacht Club that will benefit vision research,” she said. “KTLA’s Stan Chambers will tell us about his 50 years in the business.” The cost of the event, which includes dinner, is $75 per person. Call (714)-760-0407 for information.