"I have to go on with my life"

Hadley

I have to go on with my life

Jack: Probably the biggest challenges that I've faced over the years is being able to accept the changes in my vision. And then I'll get hit again with some loss of vision and I just repeat the process.

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

Jack: Hi, this is Jack. I'm 81 years old. I'm from Aiken, South Carolina. I've lived here for 20 years. I'm originally from Lexington, Kentucky.

I have what's called ocular histoplasmosis. It's a fungal disease that primarily happens in the Ohio Valley where I was from. I grew up in Louisville, Kentucky, which is on the Ohio River. And in 1974, I was diagnosed with ocular histoplasmosis, which in general terms is bleeding of the retina. I've had several bleeds over the years. I was declared to be legally blind in 1974 and have been treated for about 50 years, numerous injections over the years, and it was pretty much in check. But in recent year and a half, it's really accelerated my vision. I'm losing a lot more vision. I had a major bleed about a year ago, a hemorrhage. So, it's been a trial for me of up and downs and trying to deal and cope with it.

Probably the biggest challenges that I've faced over the years is being able to accept the changes in my vision. I seem to cope and adjust, and then I'll get hit again with some loss of vision and I just repeat the process, and I get down and depressed. And you try to work through that with the help of my wife because it's just constant changes and I think the constant changes are what gives me the most trouble.

I just went to my ophthalmologist on Tuesday and he's been monitoring the macula because he said from the photos they're taking; they've noticed that the atrophy is setting in the macula and destroying the tissue in my central vision. And it hit me hard because I know that it's been changing, my vision has been changing in recent weeks at an accelerated clip. And after seeing him on Tuesday, it was confirmed that this is happening where I'm having the loss of macular tissue and it's leading to these problems and there's nothing they can do. There's no treatment to handle that. So, it's a matter of coping and I'm trying to get out more and not stay in the house because it's my comfort zone is my house, but I know that that can be a problem if you isolate yourself too much. I have to go on with my life.

Probably the biggest motivation that I received was from my wife. She is my rock. She encourages me, but she knows that I have a habit of withdrawing into myself and it's not a good thing. So, she said, "We're not going to sit here in the house and just vegetate. We're going to get out and do things." So, we're going out to dinner. We have a plan where we're going out to dinner at least once a week. We have a couple that we go to dinner with.

Sometimes I say I don't want to do it, but we're already committed with the other couple, and when I go, I'm okay. And that's what I got to remember, that it's never as bad as I think it's going to be as far as socializing with friends, et cetera.

It just helps. The saying goes, and you hear it a lot, "You're not alone." And that's very true.

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].