"It's finding people that do understand"
As Mary's vision worsened, the life she'd always known began slipping out of reach. She wasn't sure where to turn or what might help. But a chance meeting changed things for her in ways she now hopes to pass on.
Hadley
“It’s finding people that do understand”
Mary: I would be very emotional when I tried to do something, especially in public that I thought I could do and I couldn't. You've been doing these things all your life and suddenly you can't.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Mary: My name is Mary. I'm from Tinley Park, that's a town south of Chicago. I've had some macular degeneration since 2017, but it really got bad about a year ago. When I went to the retinologist, he just said, ‘oh, I'm terribly sorry. There's nothing we can do.’
I didn't know where to go from there, what I could do or it was beginning to interfere with reading. I hadn't been reading a lot, you know, less and less and now it really was real hard to read. Then it was starting to be kind of questionable whether driving was safe or not. And so, my world was cut back to really having a very hard time reading anything even with magnifiers and the loss of driving.
I happened to see a woman that I knew and directed me to a low vision support group in this area. I went there and they were talking about other things, about Lighthouse for the Blind, about Hadley, about different magnifying glasses that would help and other devices out there that would might help. So, from that point on, I am getting some direction.
I would be very emotional when I tried to do something, especially in public that I thought I could do and I couldn't. The tears would just come. And I found that was very common, that you've been doing these things all your life and suddenly you can't.
Someone described it as a death and you go through the stages of death. But it is a death, a death of what I could do and what I can do now.
It's just trying to adjust to a different way of life for the rest of my life. But it's hard after I'm 80, so after 80 years of independence now I have to become dependent in a lot of ways.
I find the most support from people in similar situations. And then you find that there are some people that have a lot more trouble, but yet they're coping with things. But I am trying to make myself a priority to find out what I can do. I think part of it is time, but part of it is finding people that do understand that even though you are walking around and you're looking like you're doing perfectly fine, it's not perfect and none of it's going to be the way it was.
My family doctor said something about who helped you find these things? And I'm thinking mostly it was me just asking everybody or anything that would help that I thought would help me. And I do feel like better. And maybe part of it probably is just time.
At first, I was a little angry with my retinologist. I told him about the support group. He said, oh yeah, we tell our people about that. I'm thinking you didn't tell me.
So yeah, I am really on feel like I'm on a want to be on a mission to help other people that were in my situation and never found real direction. You know, where to go and how to deal with things.
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 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.
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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.
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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.