"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 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.
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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.