"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 72
Carolyn lost much of her vision after several glaucoma surgeries, leaving her feeling angry and discouraged. But a familiar childhood story inspired her to keep trying, even when tasks seemed impossible.
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Episode 71
Learning he would never see again was heartbreaking for Shannon. Embracing what challenged him, Shannon discovered strength in the unfamiliar.
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Episode 70
The week Jessica was diagnosed with an eye disease that would progressively impair her vision, she also found out she had cancer. A few things have helped her continue to feel strong and less isolated.
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Episode 68
Losing a fair amount of her vision brought with it a series of other losses for Dia. She began to feel depressed and very fearful. However, she gradually started giving herself pep talks and reconnecting with the things that bring her joy.
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Episode 67
Julia had always lived life on her own terms. So, when vision loss meant giving up her car keys, she used a white cane or her husband's arm to guide her steps, and kept going. Still, she noticed a change in how others treated her… until she made a decision she now calls, "the best thing I ever did."
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Episode 66
When the scenario Leighann had feared for years finally happened and glaucoma took much of her vision, it hit her hard. But her desire to keep living meant challenging herself—even when it scared her.
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Episode 65
Michael's vision loss led him down a long, uncomfortable road, discovering what he had to let go of and what he could still hold on to for his future. He continues to challenge himself to try new things.
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Episode 64
Tamisue's eyesight has diminished to the point where she feels stuck between two worlds—not enough vision to function as she once did, but not fully blind. She fears her world going completely dark. However, an addition to her life has made a tremendous difference for both her and her family.
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Episode 63
The loss Tom feels regarding his vision is complicated because it is ongoing. Acceptance has not come easy. Through the years, though, he has come to approach life a bit differently.
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Episode 62
Anne's declining vision had her feeling down and sorry for herself. But two gifts—one she gave and one she received—helped turn things around for her.
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Episode 61
Glaucoma advanced to the point where Ron found it too difficult to do the volunteer work he loved in retirement. Still, he found a way to pull himself out of the hole he felt he was in and continue to give back.
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Episode 60
Diabetic retinopathy has taken more and more of Charles's vision. To cope, he is learning new approaches to life AND leaning into areas of passion that don't rely on sight.