Listen in as Anne describes how a question posed to her shifted her perspective for living with vision loss.
Hadley
How Would You Help If It Wasn’t You?
Presented by Douglas Walker
Douglas: Hello, and welcome to the Insights and Sound Bites podcast, where people facing vision loss share insights about what has helped them cope and adjust.
Anne Rinard: Every time you lose some vision, it's almost like starting all over.
Douglas: My name is Douglas Walker. You know with some eye conditions; you slowly lose vision over time. And every change can feel like you’re starting all over again. Today we’ll hear from Anne. Anne shares with us some great advice on how she’s learned to take back control.
Anne Rinard: My name is Anne Rinard, and I am currently living in Southern Maine.
I was diagnosed with macular degeneration. My mom had had it at that point for a couple of years, but she really wasn't losing vision. So, I wasn't overly worried about it. And then in 2021, I noticed in April. In fact, my kids were here for Mother's Day weekend. And I noticed that I couldn't read the clock and just a few other things that were blurry.
Then when I went back to the doctor, to the retina specialist, it had gone from dry to wet, and he gave me an injection. So, for a while, I mean, for almost a year, I was going almost every other week because it was changing so much. My left eye also had a PED, which is a pigment epithelia detachment. I have peripheral vision in it but it's just a big black hole in the central.
Every time you lose some vision, it's almost like starting all over. And so, I'll adjust to the level of vision that I have, and then I'll be doing okay, and then I lose more. And I start tripping or falling, or I don't know, something. You know, I walked into a tree. Just different things like that. And it's so discouraging, and not to mention the fact that it hurts your head, but I find the emotional adjusting and readjusting to be exhausting.
I had this woman come who, said to me, "How would you help yourself if you weren't you? How would you help yourself if you weren't you?
Once you start thinking that way, it's easier to be intentional. It really helped me to approach vision loss as, how do I cognitively deal with this? How do I shift the way my brain works so that I can deal with this? It takes it out of the emotional.
It helped me change my attitude so that this was not something that was happening to me. And it opened the door for me to say, I still have choices, I still have some control. Instead of it just happening to me, it was like I became involved with it. So that was a really big difference for me.
Douglas: You never know who might need to hear your story. If you’d like to share, you can leave me a voicemail by calling, 847-512-4867. Or, you can email me a recording to [email protected]. Again, my name is Douglas Walker. Take care and I’ll see you next time.
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The book referenced in this episode is "Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight"
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.
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.