"I know I'm capable, but I find myself getting frustrated"

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].