"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 86
Doug was filled with uncertainty after realizing that the vision he lost was unlikely to be restored. His anxiety grew as the silver bullet he hoped for never materialized. But he did find things that helped him manage and continue to live his life with purpose.
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Episode 85
When Nancy's vision deteriorated to the point that it was challenging to navigate streets of a neighborhood she walked for decades, it was humbling. But a friend's comment surprised and inspired her. Her perspective started to shift.
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Episode 84
Macular degeneration was no stranger to Valerie, her mom had the condition. Early into her own diagnosis of AMD, treatments worked well and her vision remained stable. Over time, however, she noticed more significant changes, which became increasingly challenging both emotionally and physically. That's when she began to change her perspective, and that change made all the difference.
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Episode 83
Scott went to multiple specialists in search of a cure for his eye disease. He would often sit and just think about going blind. But one day a son's random comment took his mind off of everything and reconnected the family.
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Episode 82
When Elizabeth lost her vision in an auto accident, she went into survival mode. As she began to rebuild her life, she found certain connections and activities helped her focus less on her limitations and more on a renewed sense of purpose.
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Episode 81
When Eddie lost a fair amount of vision, she was scared and didn’t know how she was going to cope. But she found a source of strength and inspiration.
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Episode 80
As Kenneth lost most of his sight to glaucoma, he was feeling increasingly isolated and alone. Then he made a commitment, forcing himself to find ways to stay connected to the rest of the world.
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Episode 79
When Carol Lee was diagnosed with age-related macular degeneration, she was angry and frustrated. Over time, resentment began to fade a bit and the shock wore off. Gradually, her perspective started to shift.
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Episode 78
When Cliff unexpectedly lost a fair amount of his sight, he felt overwhelmed. But with time, he found a way forward.
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Episode 77
Thomas is experiencing many challenges of late, including vision loss. He finds inspiration and hope knowing he's not alone.
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Episode 76
Nikki has lost her vision due to a rare autoimmune disease. While she appreciates positive bits of advice and encouragement, she also stays grounded in the struggles she's facing and knows others do, too. She's feeling the loss.
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Episode 75
When a favorite hobby became more difficult for Dianne due to glaucoma, she learned to tap into something else. It turned out to be the ideal thing.