"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 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.
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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"