"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 98
As her vision changed, Martha worried her world might start getting smaller. But a trip reminded her that she didn't have to give up the things she loved. Turns out, asking for a little help can take you a long way.
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Episode 97
Vision loss doesn't always happen all at once. For Kara, it keeps changing, which means she's constantly figuring out what she can and can't do. Hear how she's learning to adjust, deal with the frustrations, and take each day as it comes.
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Episode 96
For Carolyn, connecting with people has always come naturally. When vision loss made it harder to recognize faces, she worried about missing those everyday connections. Hear how speaking up about her vision helped others understand what she needed.
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Episode 95
A close call on a walk changed the way Lance thinks about living with vision loss. It reminded him to stay open, keep learning, and keep moving forward.
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Episode 94
For Dottie, losing her vision meant giving up many things, and there was one farewell that hit especially hard. But after making a difficult choice to let go of something she loved, Dottie found a new perspective on what she had lost—and gained.
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Episode 93
Linda always imagined retirement would mean doing the volunteer work she loved, but after losing her eyesight, she thought that chapter of her life was over. Then one memorable hospital visit reminded her she still had exactly what people needed.
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Episode 92
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.
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Episode 91
When Susan began losing vision, she grew fearful about the future. But she found a source of hope and courage.
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Episode 90
Early in her journey with vision loss, Char was bitter and angry at the world. But one day, a heartfelt conversation helped her turn a corner and, as she put it, "look at vision loss through different eyes."
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Episode 89
The impact vision loss had on Todd's life was profound. Through cycles of anger and depression, he often took it out on those who cared most about him. Then he started channeling those emotions into a new activity, and that made all the difference for him and his family.
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Episode 88
When Pat was diagnosed with an inherited retinal disease, her doctor told her she wouldn't go completely blind, but her life would change forever. And while it's been a hard road, she's found some things along the way that help.
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Episode 87
Debbie has found a place near her that helps unleash her creative streak and her desire to give back to the community, a place where how much she can see doesn't matter.