"I have to go on with my life"
Jack's vision has been declining for years. The hardest part for him is that it just keeps changing, so he needs to keep adapting. A routine Jack's wife put in place for the couple has helped him cope and adjust.
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].
All Episodes
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Episode 100
As Patricia's vision changed, doing things on her own became harder, and at times she felt like no one really understood. Connecting with others going through many of the same things helped her feel less alone and more like herself again.
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Episode 99
Rebecca was used to handling things on her own, but vision loss brought anger, frustration, and challenges she hadn't expected. Over time, she found a different way forward, making room for the hard days, accepting help, and finding people who understood.
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Episode 98
As her vision changed, Martha worried her world might start getting smaller. But a trip reminded her that she didn't have to give up the things she loved. Turns out, asking for a little help can take you a long way.
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Episode 97
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.
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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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