Esther and Gwen: A Mother and Daughter Story Video

Esther, age 81, discusses her initial shock at hearing she has macular degeneration and learning from her doctor that "nothing more can be done." Her adult daughter Gwen discusses the family's reactions to Esther's vision loss, including denial, embarrassment, and stress.



Transcript of Video

Esther Smith, Age 81, Macular Degeneration


The Initial Shock

ESTHER: The early part of 1995, I sought the advice of an ophthalmologist. He told me I had macular degeneration. That was 11 years ago. After about six or eight months with him, I was told that I had nothing... there wasn't anything I could do. I went into the ladies restroom and shed buckets of tears. I was devastated.

Esther's Daughter, Gwen: How Mom Reacted

NARRATOR: An auburn-haired woman in a beige suit.

GWEN: She would not go out with her friends unless it was somebody who already knew that she had macular degeneration. She didn't want to tell anybody that she had it. She was afraid of making a mistake. She was afraid that she would embarrass herself.

The Effect on the Family

GWEN: For us, it was a time of denial, a time of saying, well, they'll fix it by the time we have it. It was a time of being angry, because they call us the sandwich generation, that we still have to be available to our kids and we need to be available to our parents. I had no idea how much of my own life I would be asked to give up to take care of things that mother might need.

ESTHER: The new Esther I don't think existed for quite a while, because, um... I was hiding the fact that I had macular degeneration. All I could see after about four months or so is that this wasn't the way I wanted to live my life. And, um... I think I wanted more control over my life.

GWEN: She has gained enough confidence and is willing to try things, so we can offer something and she can try it and say, no, that didn't work, or, yes, that's worked, let's try that a little bit further. I think mother got really good at trying things and re-inventing herself to allow herself to be open to things that she would not have done otherwise.

How Technology Helped Esther

ESTHER: I call it my play toys. And I wouldn't be without them. The biggest thing that helps me right now is my CCTV, and it was the first toy that I got at the time, and that was ten years ago, and it's the same one, and it works beautifully. I've gotten scanners. There is a scanner that's about the size of an 11x14 pad of paper. I put a printed piece of material in it, it scans it, and it talks back to me. It tells me what it reads. It does not read cursive, however, but that's where my CCTV comes in. I have another scanner that is in the form of a camera device. It's called a QuickLook. That is about four inches tall and about seven inches wide. I carry it in my purse. I go to restaurants, I'm independent if I have this thing in front of me. I scan the menu.

Feeling Empowered

NARRATOR: Pictures of Esther travelling with friends.

ESTHER: I travel by myself in the United States. When I'm with somebody, I will travel abroad. As long as I have a tongue in my head, I'll never get lost. You know, you can always ask questions. Leave time enough at an airport, for instance, for mistakes.

Look Ahead, Not Behind

ESTHER: We can't do anything about yesterday. We can do something about today, and certainly about tomorrow.

NARRATOR: Pictures of Esther and friends in a convertible and golf cart.

ESTHER: So why not go for it? Why should you be unhappy the rest of your life? Because you haven't put the effort forth to find an answer or a solution to a problem.

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