"The best thing I ever did"
Julia had always lived life on her own terms. So, when vision loss meant giving up her car keys, she used a white cane or her husband's arm to guide her steps, and kept going. Still, she noticed a change in how others treated her… until she made a decision she now calls, "the best thing I ever did."
Hadley
The best thing I ever did
Julia: “I'm not stupid. I'm just blind. And please talk to me.” And anybody who's blind knows that's feeling. And you have to fight your own time with doctors or anybody you walk in like they talk to the other person like you're not there.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Julia: My name is Julia Spencer. I'm originally from New Jersey and just a year ago, I moved down to Myrtle Beach to be with my daughter. But I'm still a jersey girl.
I'm 91 years old, so there's no short story that I have a long story, but I'm shorten it.
My first idea of vision loss and the fact is it's a retinitis pigmentosa, which is hereditary and my sister had it. There were nine of us and my sister was the only one that had it.
And I found out I had it by accident. I was getting a pair of glasses when I was about 45, 47 something like that. You know when you need glasses just because of getting that age and you just need a pair of glasses for distance. Well, the doctor said that he saw a tiny little bit of retinitis pigmentosa. So, I went to a hospital in New York to research, Columbia. The doctors there, they said that my vision, my RP gene was so small, so little, for a woman 50 years of age, that I would never go blind. So, I believed him.
I had no problems for years, then while in 2002, I had a problem with my eyesight with cataracts. Got them removed and all of a sudden, I couldn't see a little bit and I was very upset and my husband was worried about me driving and I just kept telling him, I'm never going blind. I'm fine. I can drive. And I kept driving and then all of a sudden, I started having a little problem at night. Couldn’t see at night so I stopped driving at night, and he kept saying you're going to stop driving during the day. Please. And I said no, I'm not. I'm independent.
And one day I was sitting in a chair in the living room and I called out to him, “Ralph.” And I thought he was in the bedroom. So, I shouted. And I heard a voice say, I'm right here in front of you.
My heart stopped. My biggest fear was to kill somebody. I said to him, “if I was driving the car, I would have killed you.” And he said, “I know.”
And that minute I gave it up. I was just so frightened of killing someone. He said, “don't worry about it, Hun. We're a team. I'll you know I'm here. I can take you wherever you want to go,” and I said, “it's not the same.” And I didn't want to give up my car, but I had to. So, I did, and that was the beginning of it.
I was walking into the election with my husband and holding his arm and using a cane. And a person passes by that my husband knew and she stopped and said, “why doesn't your wife have a guide dog?”
She was a trainer for guide dogs. “Why doesn't your wife have a guide dog?” Well, right there. I didn't like the person because I hate when someone talks to my husband or anybody about me in front of me.
And I want to say to them, I'm thinking “I'm not stupid. I'm just blind. And please talk to me.” And anybody who's blind knows that's feeling. And you have to fight your own time with doctors or anybody you walk in like they talk to the other person like you're not there.
So I said to her, “uh I'm right here please. You can talk to me.” And she said, “why don't you get a guide dog?” I said, well, “I don't really want a guide dog. But I'm not completely blind, so you can't get a guide dog. I still have sight.”
She says, “No, are you legally blind?” I said, “Yes, I'm legally blind.” So, she said, “OK, you can get a guide dog and gave me a card.”
I got a guide dog that was the best thing I ever did in my life. I'll tell you why. When you're walking down the street with a cane, and you're sweeping the sidewalk to make sure you don't fall into a hole or something or curb.
People will, if they see you and they're walking towards you. They'll cross the street 'cause they don't want to just get involved with you sweeping along. And they didn't realize I could see and they cross the street.
But when you go down the street with a guide dog, people stay right there. In fact, they cross the street to meet you and they want to talk to you. They say hello. They smile because I have sight, I could see. They smile at the dog and would be so thrilled to see a guide dog. I made more friends from just walking any place with the guide dog and with my husband even, and everybody would stop and talk to us.
It was fabulous.
Marc: You never know who might need to hear your story. If you’d like to share with us, just leave us a message on our Insights & Sound Bites voicemail. By calling, 847-512-4867. Or, you can use your smartphone or computer and email us a recording to [email protected].
All Episodes
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Episode 66
When the scenario Leighann had feared for years finally happened and glaucoma took much of her vision, it hit her hard. But her desire to keep living meant challenging herself—even when it scared her.
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Episode 65
Michael's vision loss led him down a long, uncomfortable road, discovering what he had to let go of and what he could still hold on to for his future. He continues to challenge himself to try new things.
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Episode 64
Tamisue's eyesight has diminished to the point where she feels stuck between two worlds—not enough vision to function as she once did, but not fully blind. She fears her world going completely dark. However, an addition to her life has made a tremendous difference for both her and her family.
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Episode 63
The loss Tom feels regarding his vision is complicated because it is ongoing. Acceptance has not come easy. Through the years, though, he has come to approach life a bit differently.
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Episode 62
Anne's declining vision had her feeling down and sorry for herself. But two gifts—one she gave and one she received—helped turn things around for her.
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Episode 61
Glaucoma advanced to the point where Ron found it too difficult to do the volunteer work he loved in retirement. Still, he found a way to pull himself out of the hole he felt he was in and continue to give back.
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Episode 60
Diabetic retinopathy has taken more and more of Charles's vision. To cope, he is learning new approaches to life AND leaning into areas of passion that don't rely on sight.
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Episode 59
Bruce's vision had been decreasing for years. When it reached the point where he was tripping over objects and bumping into people, he felt embarrassed and kept his vision loss a secret. His wife convinced him to try something new.
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Episode 58
Marie grieved the loss of her vision, and still does. Yet, on a sunny August morning, she came to a realization that made all the difference in the world.
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Episode 57
Terry's doctor told him, "There's nothing more we can do. You'll never drive again," and he was distraught. Then he recalled his military days as a Marine and sailor, and that got him through.
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Episode 56
When Emma lost her sight in just a few months, she struggled to cope. She felt alone, her insecurities grew, and self-esteem plummeted. With time, she came to a new understanding and that helped her tremendously.
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Episode 55
Dave calls his experience with vision loss a slow torture. In the face of this, however, he has found a sense of inspiration in explorers, history, and an activity you wouldn't typically connect with vision loss, sightseeing.