"This can be a lonely business"
As Kenneth lost most of his sight to glaucoma, he was feeling increasingly isolated and alone. Then he made a commitment, forcing himself to find ways to stay connected to the rest of the world.
Hadley
“This can be a lonely business”
Kenneth: I was very disappointed with myself if you want to know the truth. I recognize that glaucoma is not a disease that you can identify very easily. It sneaks up on you and you really don't know what's happening. And that's what happened to me.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Kenneth: I'm Ken Crooks and I'm in Atlanta, Georgia. I’m at 93 and holding.
I was a social work administrator. I worked for the National Urban League for about 30 years.
I was detected with glaucoma back in 2012, I guess it was. I had several operations done. My left eye is completely gone. My right eye, all I see is shadows. I can tell where the light bulb is, and that's about the best I can come up with. Can't see much else.
I was very disappointed with myself if you want to know the truth. I recognize that glaucoma is not a disease that you can identify very easily. It sneaks up on you and you really don't know what's happening. And that's what happened to me. I took a couple of months off from my doctors who were giving me eye drops to take, and I just kind of did not want to continue this experience. And so, I took time off, a whole summer back in 2012, two or three months.
And then of course I went back to the doctor when I realized that I couldn't see very well. And he kind of tongue lashed me a little bit. "We got to keep this thing going. We cannot take vacations from this experience. You've got to hang in and continue to put the eye drops in and obey the rules and regs," which is what I finally did. Those are the early days. Now that I've gotten myself a little bit more organized and my mental health in the right direction, then I think I can move on from wherever I am, which is very, very little sight in my right eye. Getting pretty well done.
I would start out by saying that this can be a lonely business if you let it. And my first commitment to myself was to find using my telephone or other technologies to maintain a link with the rest of the world. If you end up not doing that, then you're losing out, number one on time because time does not stop. And number two, there are so many, many people, so many, many things, so many organizations and so many practical things that you need to maintain a link with so you're not by yourself. It doesn't work.
It's also a challenge because you are tending not to want to extend, not to want to reach out, not to want to be a part of the bigger world, but you've got to force yourself to say, "Hey listen, this is not something that's going to go away. It's here and I'm going to wrap my arms around it and I'm going to make it work for me. Period. End of discussion. Now dial the phone."
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
-
Episode 58
Marie grieved the loss of her vision, and still does. Yet, on a sunny August morning, she came to a realization that made all the difference in the world.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
Episode 50
Learning to live with vision loss wasn't always easy for Pam. But with time, her bad days are fewer.
-
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"
-
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.
-
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.