"You're not defeated if you ask for help"

Hadley

Rebecca: But I had to kind of go through that grief stage of, I lost my vision and it really is affecting my life and now it's a whole new chapter.

Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.

Rebecca: My name is Rebecca and I live in Chicago. I have a disorder called pseudoxanthoma elasticum.

Approximately, five years ago, I had, like, I guess you would call it a major disturbance in my vision. And I’m legally blind now. I have very large blind spots in the center of both eyes and I still have peripheral vision.

The way that I can describe it is it was almost like if you wear glasses and then you get a raindrop on the front of the glasses. That's how my vision was that there was this spot that was just weird, like a raindrop on my glasses.

I've been getting treatments which exist of injections in the eyes every five to six weeks. And I can't restore any of the vision that I've already lost, but it can prevent a hemorrhage from happening again. And the hemorrhaging is what leads to vision loss.

You know, I've always been not cavalier about this disease that I have, but it's never affected me to the level that it did.

I was very, very angry, very angry. But I had to kind of go through that grief stage of, I lost my vision and it really is affecting my life and now it's a whole new chapter. And then that's when I decided I'm like, okay, I think I better make my life go in a little bit different direction.

And I've always been kind of a person who is resistant to therapy and support groups. Nope, not anymore. Now I am very, very dedicated to talking about vision loss and seeking out other people.

Because it is one of those things that only other people with vision loss can understand certain things. No one can understand you like another person with vision loss. So that's when I realized I'm like, okay, I need to not be so resistant and judgmental of therapy and any sort of support group because it's really helped me, really helps me a lot. And I never thought I would say those words, but it's very true.

But I am very much like, no, I can do this myself. And no, I don't need your help. But the biggest turning point for me was realizing, yes, people can help you. You're not defeated if you ask for help.

I just had to reach that point. And one of my friends told me that his mom had this mindset, if you will, or she had the thing, she's like, okay, you can freak out, you can cry, you can get angry, you can do whatever you need to do. You can do that for 30 minutes. Set a timer if you have to. But then at the end of that 30 minutes.

You have to pull yourself together and get on with your day. And what I found is that was a really good practice for me because like you do, it's legitimately upsetting. It's legitimately frustrating and annoying and frightening and all the things.

And you're allowed, you have to honor those feelings, but then you have to put them away and get on with your day.

And what I found over time is that that time that I need to allow myself to freak out or feel bad or be frustrated has progressively gotten shorter and shorter. So it's just one of those things. It seems like such a basic thing like your mother would tell you, but it really helped me.

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].