"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 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.
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Episode 40
Having to give up the car keys was traumatic for Eugenia. She worried about becoming isolated until she found a new way.
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Episode 39
This week, hear how rediscovering a favorite activity helped Celia find balance as she adjusts to vision loss.
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Episode 38
Denise can struggle with the slow but continuous loss of vision she's facing. But she's found a way to pick herself up on a bad day.
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Episode 37
Listen in as Vanessa shares what has helped keep her from feeling hopeless and defeated due to vision loss.
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Episode 36
Stacy shares with us how being honest about her vision loss with her friends and coworkers has made all the difference in the world.
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Episode 35
For many, having to give up the car keys due to vision loss is traumatic. Deb felt it too. Then, during a call to arrange transportation for herself, a new door opened.
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Episode 34
Listen in as Anne describes how a question posed to her shifted her perspective for living with vision loss.
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Episode 33
This week, William shares how learning to continue with his favorite hobby, even with vision loss, has been therapeutic—and uplifting. Here's the link to his website https://www.blindtruths.org/
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Episode 32
This week Angela shares how she struggled to get around due to vision loss, how she tried to hide it from others, and what helped her.