"You're not defeated if you ask for help"
Rebecca was used to handling things on her own, but vision loss brought anger, frustration, and challenges she hadn't expected. Over time, she found a different way forward, making room for the hard days, accepting help, and finding people who understood.
Hadley
Rebecca: But I had to kind of go through that grief stage of, I lost my vision and it really is affecting my life and now it's a whole new chapter.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Rebecca: My name is Rebecca and I live in Chicago. I have a disorder called pseudoxanthoma elasticum.
Approximately, five years ago, I had, like, I guess you would call it a major disturbance in my vision. And I’m legally blind now. I have very large blind spots in the center of both eyes and I still have peripheral vision.
The way that I can describe it is it was almost like if you wear glasses and then you get a raindrop on the front of the glasses. That's how my vision was that there was this spot that was just weird, like a raindrop on my glasses.
I've been getting treatments which exist of injections in the eyes every five to six weeks. And I can't restore any of the vision that I've already lost, but it can prevent a hemorrhage from happening again. And the hemorrhaging is what leads to vision loss.
You know, I've always been not cavalier about this disease that I have, but it's never affected me to the level that it did.
I was very, very angry, very angry. But I had to kind of go through that grief stage of, I lost my vision and it really is affecting my life and now it's a whole new chapter. And then that's when I decided I'm like, okay, I think I better make my life go in a little bit different direction.
And I've always been kind of a person who is resistant to therapy and support groups. Nope, not anymore. Now I am very, very dedicated to talking about vision loss and seeking out other people.
Because it is one of those things that only other people with vision loss can understand certain things. No one can understand you like another person with vision loss. So that's when I realized I'm like, okay, I need to not be so resistant and judgmental of therapy and any sort of support group because it's really helped me, really helps me a lot. And I never thought I would say those words, but it's very true.
But I am very much like, no, I can do this myself. And no, I don't need your help. But the biggest turning point for me was realizing, yes, people can help you. You're not defeated if you ask for help.
I just had to reach that point. And one of my friends told me that his mom had this mindset, if you will, or she had the thing, she's like, okay, you can freak out, you can cry, you can get angry, you can do whatever you need to do. You can do that for 30 minutes. Set a timer if you have to. But then at the end of that 30 minutes.
You have to pull yourself together and get on with your day. And what I found is that was a really good practice for me because like you do, it's legitimately upsetting. It's legitimately frustrating and annoying and frightening and all the things.
And you're allowed, you have to honor those feelings, but then you have to put them away and get on with your day.
And what I found over time is that that time that I need to allow myself to freak out or feel bad or be frustrated has progressively gotten shorter and shorter. So it's just one of those things. It seems like such a basic thing like your mother would tell you, but it really helped me.
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 62
Anne's declining vision had her feeling down and sorry for herself. But two gifts—one she gave and one she received—helped turn things around for her.
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Episode 61
Glaucoma advanced to the point where Ron found it too difficult to do the volunteer work he loved in retirement. Still, he found a way to pull himself out of the hole he felt he was in and continue to give back.
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Episode 60
Diabetic retinopathy has taken more and more of Charles's vision. To cope, he is learning new approaches to life AND leaning into areas of passion that don't rely on sight.
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Episode 59
Bruce's vision had been decreasing for years. When it reached the point where he was tripping over objects and bumping into people, he felt embarrassed and kept his vision loss a secret. His wife convinced him to try something new.
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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.