"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 81
When Eddie lost a fair amount of vision, she was scared and didn’t know how she was going to cope. But she found a source of strength and inspiration.
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Episode 80
As Kenneth lost most of his sight to glaucoma, he was feeling increasingly isolated and alone. Then he made a commitment, forcing himself to find ways to stay connected to the rest of the world.
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Episode 79
When Carol Lee was diagnosed with age-related macular degeneration, she was angry and frustrated. Over time, resentment began to fade a bit and the shock wore off. Gradually, her perspective started to shift.
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Episode 78
When Cliff unexpectedly lost a fair amount of his sight, he felt overwhelmed. But with time, he found a way forward.
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Episode 77
Thomas is experiencing many challenges of late, including vision loss. He finds inspiration and hope knowing he's not alone.
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Episode 76
Nikki has lost her vision due to a rare autoimmune disease. While she appreciates positive bits of advice and encouragement, she also stays grounded in the struggles she's facing and knows others do, too. She's feeling the loss.
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Episode 75
When a favorite hobby became more difficult for Dianne due to glaucoma, she learned to tap into something else. It turned out to be the ideal thing.
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Episode 74
Peter's sight slowly but steadily worsened over the course of several years. When he had to give up driving, his self-image took a hit. Working through his emotions has helped him cope and adjust.
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Episode 73
Sherry's vision loss has been gradual yet relentless. Asking for help to do things she used to be able to do on her own is a challenge for her, as it is for many. But she's finding some new tools and new ways to do things.
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Episode 72
Carolyn lost much of her vision after several glaucoma surgeries, leaving her feeling angry and discouraged. But a familiar childhood story inspired her to keep trying, even when tasks seemed impossible.
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Episode 71
Learning he would never see again was heartbreaking for Shannon. Embracing what challenged him, Shannon discovered strength in the unfamiliar.
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Episode 70
The week Jessica was diagnosed with an eye disease that would progressively impair her vision, she also found out she had cancer. A few things have helped her continue to feel strong and less isolated.