Tuesday, July 19, 2011

Learning to adapt as one's vision ebbs

From The NY Times:

A man wakes up one morning to find that he cannot make out the details of a picture on the wall. His wife’s face, too, has become a blur. A trip to the ophthalmologist reveals he has macular degeneration.

His story isn’t unique. More than eight million people in the United States have macular degeneration, a disease that generally affects people over the age of 60. (A related condition, Stargardt’s disease, affects children as young as 6.) Both conditions rob people of their central vision, and with it their independence and ability to function without devices to help them read and navigate.

There are two forms of macular degeneration: dry and wet. The symptoms of both are the same, and neither type can be cured — although some treatments are now available to slow the progression of the wet form.

The course of the disease varies from patient to patient. Some patients become legally blind, while others just need a few tools to get by. Below, two people living with macular degeneration or Stargardt’s disease talk about the world as they see it. The excerpts have been condensed and edited for space.

Hear more from these patients and others in an interactive feature.

Charlotte Isen, Boca Raton, Fla.

My husband and I were playing golf. On the 14th hole, I was chipping up toward the flag, and suddenly, instead of seeing one ball rolling up there, I saw two balls wobbling up toward two strange-looking flags. I became terribly upset and almost hysterical, and I said to my husband, “I have macular degeneration.”

I went from doctor to doctor seeking the magic bullet that was going to cure me. At that time, they were doing laser treatments. Unfortunately, that was bad because those laser treatments left scars in the eyes. So that What we thought was helping us was really making things worse for us.

Everyone I know that suffers from macular degeneration has a sense of loss, because so many things that one was once capable of doing, one is no more. That loss of independence is a very, very difficult thing for people to bear.

Jim Bernardin (pictured), 25, Chicago

I have’m a person with an extreme visual impairment, but I get by pretty well and people don’t realize it. Oftentimes, I’ll meet people face to face, we’ll have a great conversation, and then the next day I’ll walk right by that person, having not seen them. Then they’ll be, like, “Why didn’t he say anything?” Having Stargardt’s disease, I think it’s really important to tell people right off the bat.

I realized in college that one of my symptoms was that I wasn’t looking people in the eyes. Looking someone in the eyes is a really important social agreement we have to let other people know you’re a normal person. Well, I’ve basically taught myself how to fake eye contact. It’s something I do to convey to other people that I’m not a weirdo.

We live in a sighted world of 12-point font and smaller, and it’s tough. It’s kind of a crappy deal of the cards, but there are worse hands to be dealt.