"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 48
When Carmel heard a Hadley podcast, it helped her understand what had been happening to her along with her vision loss—something she had nicknamed her "phantom vision."
Carmel mentions an episode of our sister podcast, Hadley Presents. Here's a link to that episode on Vision Loss and Charles Bonnet Syndrome.
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Episode 47
It was tough for Linda to give up driving and she was heartbroken when reading became difficult. She felt her world was shrinking. But then she asked for help.
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Episode 46
Ashia felt all alone in her vision loss. No one around her knew what she was going through. Then she found something that gave her hope.
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Episode 45
Dennis found that many aspects of life with vision loss can be a struggle. Then he found something that turned that around.
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Episode 44
Judy has lived with progressive vision loss for many years. She's found a way that helps her cope and adjust.
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Episode 43
For years Bill hid his vision loss from others. He was self-conscious about it. Then, he decided to open up.
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Episode 42
For Cynthia, every story shared helps her on her own journey with vision loss.
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Episode 41
Living with low vision meant Karen was constantly explaining to others what she can and can't see. Then she found a tool that has made a big difference.
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Episode 40
Having to give up the car keys was traumatic for Eugenia. She worried about becoming isolated until she found a new way.
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Episode 39
This week, hear how rediscovering a favorite activity helped Celia find balance as she adjusts to vision loss.
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Episode 38
Denise can struggle with the slow but continuous loss of vision she's facing. But she's found a way to pick herself up on a bad day.
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Episode 37
Listen in as Vanessa shares what has helped keep her from feeling hopeless and defeated due to vision loss.