"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 57
Terry's doctor told him, "There's nothing more we can do. You'll never drive again," and he was distraught. Then he recalled his military days as a Marine and sailor, and that got him through.
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Episode 56
When Emma lost her sight in just a few months, she struggled to cope. She felt alone, her insecurities grew, and self-esteem plummeted. With time, she came to a new understanding and that helped her tremendously.
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Episode 55
Dave calls his experience with vision loss a slow torture. In the face of this, however, he has found a sense of inspiration in explorers, history, and an activity you wouldn't typically connect with vision loss, sightseeing.
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Episode 54
When Albert's vision decreased to the point that he could no longer read print anymore, he found it stressful. But he's found a new source of comfort that helps him quite a bit.
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Episode 53
Jayne can feel isolated living with her eye disease, spending much of her days forcing herself to focus on things that have become blurry. The stress can be overwhelming, causing her to shut down. But there's one area of life that now brings her more joy than ever before.
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Episode 52
When Jeffry lost his sight, he felt a loss of control, a loss of dignity. Then, he began his long road to empowerment, one small goal at a time.
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Episode 51
Marilyn went through bouts of anxiety and depression with her vision loss and still grieves the loss several years into her journey. She also decided to do something for herself which has helped tremendously.
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Episode 50
Learning to live with vision loss wasn't always easy for Pam. But with time, her bad days are fewer.
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Episode 49
Jennifer didn't know what to do or who to go to for help as her vision was fading. Then, by chance, she found some help. She found some direction.
The book referenced in this episode is "Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight"
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Episode 48
When Carmel heard a Hadley podcast, it helped her understand what had been happening to her along with her vision loss—something she had nicknamed her "phantom vision."
Carmel mentions an episode of our sister podcast, Hadley Presents. Here's a link to that episode on Vision Loss and Charles Bonnet Syndrome.
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Episode 47
It was tough for Linda to give up driving and she was heartbroken when reading became difficult. She felt her world was shrinking. But then she asked for help.
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Episode 46
Ashia felt all alone in her vision loss. No one around her knew what she was going through. Then she found something that gave her hope.