"I know I'm capable, but I find myself getting frustrated"
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.
Hadley
“I know I’m capable, but I find myself getting frustrated”
Kara: I still have my pity party, but I would like put on my big girl boots and just say I'm just going to stomp through this world like the best I can with what I have.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Kara: My name is Kara and I live in Phoenix, Arizona, and I have Stargardt Macular Dystrophy.
I didn't tell a whole lot of people that I was losing my vision, but when I got that Stargardt diagnosis, I was more willing to share what was going on with me, but it didn't seem to make a difference. I couldn't wear glasses, it didn't help. I just kind of settled in to when the changes would start to happen, I call them a punctuated loss of vision. I would wake up and there would be a notable difference in my eyesight and then I would adjust and then at some point another punctuated loss of vision and I would adjust. But now that seems to happen ... I mean, I could tell you that I've been doing that now constantly for months, which is one of the reasons that I contacted Hadley, because it is definitely progressing more quickly.
One of the challenges I think for me is like a double edge sword, because I know that I am capable of, well, pretty much anything. I may not be as good at things anymore, and that's a loss, but I find myself getting frustrated with other people for not understanding what I can and can't do, which is ridiculous because there are times that I don't even know what I can and can't do.
I had a friend who grabbed me by my arm and was pulling me around and we were in public. We were going to get a bite to eat and go to a movie and I've got this person who's like holding my hand on their arm and I'm thinking, "You were making me very anxious. I don't know when I'm walking." And this person became offended and I'm like, "Well, how would you like to be dragged around?" "Well, I don't know what you can see and what you can't see.
I tried to be loving and gracious. I believe in, even if you have to say something hard, say it in a kind way, but we all have that stubbornness and pride to a certain degree and I think it was being stubborn or prideful. It was just, I don't want to be yanked around and I don't want to hurt your feelings when I know you don't understand, but I think that the struggle for me is really accepting what I am and am not capable of.
I still have my pity party, but I would like put on my big girl boots and just say I'm just going to stomp through this world like the best I can with what I have because it could be worse. It really could be worse.
I mean, we all have our battles that we have every day, I'm not a hero because I have this attitude. That attitude is a thankfulness. It's a gratefulness. And it's just something that I do believe, even when I do have my pity parties in the midst of them, I know that it could be worse. So I think from the get go, that has always been there for me, and it is still today. So just that knowledge. And I am thankful for what I have, and I think that makes a difference in the quality of life.
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 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.
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Episode 74
Peter's sight slowly but steadily worsened over the course of several years. When he had to give up driving, his self-image took a hit. Working through his emotions has helped him cope and adjust.
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Episode 73
Sherry's vision loss has been gradual yet relentless. Asking for help to do things she used to be able to do on her own is a challenge for her, as it is for many. But she's finding some new tools and new ways to do things.