Joann McSorley: A Unique “Look” at Vision Loss

Notes: Earlier this month I reviewed a book for National Eye Care Month (http://www.menupause.info/archives/17932). The book is entitled: Smart Medicine for Your Eyes by Dr. Jeffrey Anshel. Reading this gave me the idea for today’s Profile.                                   
On Monday mornings I meet with seven or eight other women in a group called Full Circle. We are all over 60 and either retired or semi-retired and we discuss issues that concern us as we age: illness, retirement, housing, isolation, or whatever topic we pick. Joann and her guide dog Macon are members. I decided that interviewing Joann after reviewing the book would be a good way to highlight National Eye Care Month.

Joann McSorley with Macon

Background on Joann’s Vision Loss:

As a latecomer to the formation of the group Full Circle, I did not notice at my first meeting that a woman opposite me could not really see.  She had her black lab guide dog at her feet, but he wasn’t visible from where I was sitting. When I talked, she looked right at me with eyes that I thought could see. As Joann shared, in bits and pieces, the gradual loss of her vision, I became awed by her determination, her positive attitude, and her refusal to label herself as “disabled.” But I am getting ahead of myself, because I think a little background is in order.

Joann is the second oldest of 11 children. She has two younger sisters who are also sight-impaired, so I asked Joann the specifics about her vision. First, she and her sisters have a genetic element to their sight loss called STARGARDT’s disease. On about.com I learned this:

Stargardt’s disease is an inherited condition that causes loss of central vision, similar to macular degeneration. Macular degeneration is a serious eye disease that mainly affects older people….Stargardt’s disease is a type of juvenile macular degeneration that affects children and young adults. It is the most common form of inherited juvenile macular degeneration. Stargardt’s disease can lead to macular degeneration and vision loss…. Stargardt’s disease is an inherited disease. The condition is sometimes passed along to children whose parents both carry a gene associated with the disorder…..In a child with Stargardt’s disease, a dysfunctional protein is produced that is incapable of performing its transport function. This deterioration causes the cells in the macula, the specialized part of the retina that is responsible for clear, central, detailed vision, to deteriorate.

The other condition in Joann’s and her sisters’ medical eye histories is linked to Stargardt’s and is called Fundus flavimaculatus As Joann told me, she has flecks on her retina that block her vision. (On another website, these two diseases are actually listed together with a forward slash between them.)

According to about.com, the signs or symptoms of Stargardt’s often start during childhood and young adulthood, with most symptoms developing before the age of 20. However, Joann’s symptoms did not start to appear until her mid-40s. Her two younger sisters with the disease were both in their 40s as well—quite unusual.

Joann’s Current Situation

Before Joann contracted Stargardt’s disease and fundus flavimaculatus, she held positions as: auditor with the IRS in Philadelphia, audit manager for the Federal Election Commission (FEC), comptroller for two presidential campaigns in Washington, D.C., and financial manager for several non-profit organizations. Her vision was 20/20 and her career positions quite important. As her vision deteriorated and she raised a family, she worked part-time in a school library.

All that has changed since losing most of her vision, and now Joann struggles with the stereotypes that people hold about blindness. Some people don’t believe she is really legally blind, because she looks right at them when they are talking to her. Even with her sight dog, Macon, some people think she can actually see, because they think she is training Macon for a blind person. And, to her credit, because she had vision until midlife, she still looks, moves, and gestures like a person with normal eyesight.

Incidentally, Joann attended a school called Guiding Eyes for the Blind and acquired Macon before her sight deteriorated to its present condition. This school in Yorktown Heights, New York, is free to the student, including transportation to and from the school plus room and board, and the course for Joann was three weeks of working with her sight-trained dog, Macon. Graduation ceremonies are held with the puppy raisers who take puppies at six weeks of age and train them for 18 months for vision-impaired people. Thus, Macon and Joann graduated together with trainers in the audience.

In Joann’s case, her loss has been very gradual, from 99% of her vision intact at age 45, and now, at age 68, only 10% of her vision remains, with some side (peripheral) vision still available to her, as described on one of the websites I Googledthe. When I asked her if she uses Braille, she said she learned it early, when she still had sight, but found that like any other language, it works best if taught at a young age. And since her computer has a special program that talks to her (JAWS: Job Application with Speech) and she talks to her cell phone and it talks back, she doesn’t feel the need for Braille. Modern technology has done a lot for people with visual problems. As Joann said, “It’s amazing!”

What I admire most about Joann is that she does not really see herself as disabled. As a volunteer at Inglis House for wheelchair-bound people, whom she believes are truly disabled, she says: “I can do everything most other people do, I just can’t see.”  (At an end-of-day talk circle, she learned that some of the residents did not even realize she was blind!) She lives by herself with Macon in her own apartment, takes buses or walks when necessary, and generally considers herself a very capable person. (I agree!) Now that she is older, she is somewhat more fearful, because her progressively failing vision means she may fall more or bump into people or things. All of us over 65 know that falling when older is one of the biggest issues we face, with or without eyesight.

However, for now, Joann walks, talks, travels and communicates like a sighted person. I admire her positive attitude and her lack of pity for herself. If there were ever a poster for National Eye Care Month, I would vote to put Joann on it with her trusty guide dog, Macon.


Leave a Reply

Subscribe