"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
Ashia: Even walking around my house would be a challenge because you think you really know your house until you lose your vision completely.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Ashia: I’m Ashia 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.
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 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.
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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.
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Episode 44
Judy has lived with progressive vision loss for many years. She's found a way that helps her cope and adjust.
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Episode 43
For years Bill hid his vision loss from others. He was self-conscious about it. Then, he decided to open up.
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Episode 42
For Cynthia, every story shared helps her on her own journey with vision loss.
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Episode 41
Living with low vision meant Karen was constantly explaining to others what she can and can't see. Then she found a tool that has made a big difference.