"I'm not alone"
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.
Hadley
I’m not alone
Presented by Douglas Walker
Douglas: Hello, and welcome to Hadley’s Insights and Sound Bites podcast, where people facing vision loss share insights about what has helped them cope and adjust.
Ashia: Even walking around my house would be a challenge because you think you really know your house until you lose your vision completely.
I’m Asia James in Georgia. I was diagnosed with a rare neurological disorder called Benign Essential Blepharospasm and it's where I have uncontrollable eye spasms and I have eye closures and I don't know how long they'll close. Sometimes they close for a few seconds, a few minutes, or hours at a time, maybe about 10 hours at a time. I found out about this, I think it was in September, 2022.
I started panicking because I saw that there was no cure for this, and I was hoping and praying that this was not true. I was afraid to go outside. Even walking around my house would be a challenge because you think you really know your house until you lose your vision completely and then you struggle to figure out where you are.
So, I came across American Print House and I reached out to them. She recommended Hadley and really Hadley had changed my life because I got to hear soundbites of people dealing with issues just like me. Even though our conditions are different, we seem to be going through the same thing with dealing with it, dealing with grief, the stages of grief and acceptance and finding our way out of it.
What gets me through the difficult moments is knowing that there's a community out there that is experiencing similar things. The first feeling for me was feeling that I'm in it by myself. There's no one around to help me. They don't know what I'm going through. But with Hadley, that community, we all share similar experiences, even though they may not be exactly the same, we're similar. And that gives me hope, faith and confidence.
It's said so many times and I hate it to be a cliche, but it's true. Finding out that you're not alone makes the biggest difference in the world.
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 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].
All Episodes
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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.
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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
Jayne can feel isolated living with her eye disease, spending much of her days forcing herself to focus on things that have become blurry. The stress can be overwhelming, causing her to shut down. But there's one area of life that now brings her more joy than ever before.
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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
Learning to live with vision loss wasn't always easy for Pam. But with time, her bad days are fewer.
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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.