"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 22
Listen in as Sam shares how he struggled trying to hide his vision loss-and how he finally turned the corner.
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Episode 21
Listen in as Eugenia describes how her own determination and the support of friends helped her keep moving forward.
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Episode 20
Listen in as Zenobia shares how she found the support and strength she needed.
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Episode 19
Listen in and be inspired as Saras explains how changing her perspective to, "Why NOT me?" helped her tap into her strengths.
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Episode 18
Sheri shares with us how the love for her horses helped her find purpose and peace.
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Episode 17
Kendra shares with us how a visit to a low vision center gave her more than she ever expected.
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Episode 16
Listen to Carol's story as she shares how owning her changing vision gave her the drive to discover useful resources and realize that it's important—and okay—to ask for help when she needs it.
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Episode 15
Listen in as Chuck shares how he found hope in a chance encounter.
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Episode 14
Listen in as Kara shares how she found new ways to express herself in her love of visual art, and redefining a meaningful life.
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Episode 13
Listen in as Leah shares how it finally clicked for her—the realization that she's not alone.
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Episode 12
Hear how Axel set one goal at a time and slowly took the steps to rebuild his skills, reengage in his art, and reestablish his emotional well being.
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Episode 11
Gregory shares how finding a mentor made all the difference in the world to him, and his entire family.