"Holding on to hope"
Today we hear from Ed who shares how the source of hope for him has changed with time.
Hadley
Holding On to Hope
Presented by Douglas Walker
Douglas: Hello, and welcome to the Insights and Sound Bites podcast, where people facing vision loss share insights about what has helped them cope and adjust.
Ed McDaniel: I was still kind of still searching for hope.
Douglas: My name is Douglas Walker. Today we’ll hear from Ed. Like so many of us, Ed was searching for answers and found an unexpected source of hope along the way.
Ed McDaniel: My name is Ed McDaniel. I live in the foothills of North Carolina.
I was diagnosed with retinitis pigmentosa when I was 28 years old. My older brother had already been diagnosed, so I knew it was a possibility that I would also have the eye condition. And in addition to RP, I also have hearing loss.
I was born with hearing loss. That really hasn't been so difficult for me. It was when I started losing my vision that that had a bigger impact on me, because I had normal vision at one point.
I was still searching for some hope. And one of the ways I was doing that was finding out more information about treatment research and whether that was ever going to be an option for me. And so, I came to this conference in Florida and during the day they had all these presentations about research and treatment and all of these different kinds of things. But in the evenings, they had the sessions where we could meet other people with RP. And that was really where I started to find some hope. It wasn't really in the research, which was the main topic of the conference, but it was in the evenings where I met other people and I met people who were all different ages, all different stages of vision loss.
And I was able to see that they were living very productive and full lives. So, I came away from that conference feeling a lot more hopeful, where I really had been struggling before that.
Thirty years later and there's still no treatment for RP. I'm glad there is research going on and I think there could at some point be some treatment, but if I had been focusing on that for the past 30 years, I wouldn't be where I am today by learning to live with my vision loss and not just putting all my hope into a cure for my vision loss.
Douglas: Was there something that someone said to you or something that happened along the way that made all the difference in the world in helping you adjust to living with vision loss?
We‘d love to hear from you 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]. Again, my name is Douglas Walker. Take care and I’ll see you next time.
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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.
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Episode 54
When Albert's vision decreased to the point that he could no longer read print anymore, he found it stressful. But he's found a new source of comfort that helps him quite a bit.
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Episode 53
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Episode 52
When Jeffry lost his sight, he felt a loss of control, a loss of dignity. Then, he began his long road to empowerment, one small goal at a time.
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Episode 51
Marilyn went through bouts of anxiety and depression with her vision loss and still grieves the loss several years into her journey. She also decided to do something for herself which has helped tremendously.
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Episode 50
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Episode 49
Jennifer didn't know what to do or who to go to for help as her vision was fading. Then, by chance, she found some help. She found some direction.
The book referenced in this episode is "Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight"
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Episode 48
When Carmel heard a Hadley podcast, it helped her understand what had been happening to her along with her vision loss—something she had nicknamed her "phantom vision."
Carmel mentions an episode of our sister podcast, Hadley Presents. Here's a link to that episode on Vision Loss and Charles Bonnet Syndrome.
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Episode 47
It was tough for Linda to give up driving and she was heartbroken when reading became difficult. She felt her world was shrinking. But then she asked for help.
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Episode 46
Ashia felt all alone in her vision loss. No one around her knew what she was going through. Then she found something that gave her hope.
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Episode 45
Dennis found that many aspects of life with vision loss can be a struggle. Then he found something that turned that around.