"I listen for the hope"

Hadley

“I listen for the hope”

Susan: Sometimes the clarity is not there anymore or I'm losing color. And so, when that happens, I get scared and I worry.

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

Susan: My name is Susan and I presently live in Florida, but we spent most of my life in upstate New York, which I miss dearly.

It was about 40 years ago and all of a sudden my eyes started bleeding. And my husband was a patient of the Retina Institute up in Boston. He called them, gave them my symptoms, and they kept somebody on staff who's a retina specialist and whatever people he would need, so that when we got there, they were prepared to help.

Well, I went through feels like 30 billion tests and surgery. And the bottom line is they don't know why my eye hemorrhage.

After that I went through a period of being fearful because they did not know if that would happen to my other eye. 

And now all of a sudden my vision started going. It was getting better and I had to only read two more letters on a line and I would get my driver's license back and instead of my eyes getting better, they got worse. And now they're slowly getting bad because my veins in my eyes are very fragile, so they bleed.

So, I do something which is not very healthy, but I do it. I checked my vision. One time I would check my vision like 10 times a day just to see what the changes are.

Sometimes the clarity is not there anymore or I'm losing color. And so, when that happens, I get scared and I worry. And one not knowing what to do. I get tired of trying.

I must say at times, this journey has been difficult and scary and hard. But when I listen to other people's stories and think to myself, well, if they did it and they could make it, there's no reason why I could not.

So when I listen to the podcast about what people have overcome, it gives me a lot of hope and courage.

I now have to start trusting people at a level I never have had to do, and I find that scary at times.

Something that I'm doing is instead of having a frown on your face, put a smile on your face and you can't smile and frown at the same time.

So basically, I am grieving. And some days are worse than others and some days are good.

But I find hearing what other people say and what they're going through is very good for me.

I don't listen for their story, to be honest. I listened for the hope that they give. That this was my problem and I was able to overcome it, or this was my problem, but I'm working on overcoming it.

And that makes me feel good.

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].