"This can be a lonely business"

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].