"I'm not as scared"
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.
Hadley
I’m not as scared
Tammy: With just a few degrees of vision left, I'm stuck on the fence between two worlds. I don't have enough vision left to say that I'm very sighted, but I also feel like I'm blind in so many ways, I don't see well enough to say that I see.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Tammy: Hi, my name is Tammy Sue Blastone from Presque Isle, Maine.
I was diagnosed with retinitis pigmentosa. I kept running into things and I had five car accidents, and I didn't know what was wrong, and so I worked at a hospital where the ophthalmologist worked and I went to see him, that's what he told me. He actually cried when he told me.
So, it took me, believe it or not, two and a half years to give up my driver's license. It was really, really hard to do.
So, career-wise, I was a registered nurse. My vision before COVID hit was down to probably about 10 to 12 degrees. For some reason, after COVID, it went down to five to six degrees.
So now reality's truly setting in. I really was hopeful when I had the 19 degrees that held on for so long. I said, "Okay, they always told me, ‘If it gets below 10 degrees, you're going to lose all your vision.’" So, as I stayed 10 to 12 degrees, I said, "Okay, okay, if I can hold it here, I'm not going to go blind, I'm not going to go blind." But then the reality really hit, okay, I really am going to lose all my vision. So, you don't know what to do with that. I didn't know what to do with that. I probably, still to this day, I don't know what to do with it, but I still have five to six degrees and I'm still struggling.
We moved into a town, we bought a home in town so that I could walk different places now, where I can't drive. I can go to the store, I can go to my chiropractor, I can walk to my doctors, I can walk to the hospital, I can walk to my eye doctors, and that's good except for I started falling.
So, I was talking to my girl-friends and we started talking about guide dogs, and they're like, "Yes, you need a guide dog. Oh, of course you need a guide dog."
And I'm like, "You don't understand." My husband has always said, "No, no dog. We will never have a dog. Never." I've been married to him for 38 years and never, he meant never.
My sister started sending me YouTube videos of Paul Castle, if anybody is familiar with him. He has retinitis pigmentosa. And at the time he had about the same amount of vision that I did. He was showing examples, and he had the guide dog, Mr. Maple, if anybody knows Mr. Maple. He did short little things about how much it helped with his independence, and he just didn't feel good using his cane. He felt like he was on display, and it just didn't make him feel good. But with a dog, everybody loves a dog, and you get independent, and everybody talks to you and they're happy to see you. “Oh, look at the dog.” You're received differently with a dog. And my husband was in the room when I listened to all those videos and all of a sudden one day my husband came to me and said, "You can have a dog."
Best day ever, because I was on a plane in a couple of months to go to Guiding Eyes for the Blind, and that's where I got Bidal. The best thing ever to happen. He is such a companion to me. I'm so independent, I can walk all these places again, I don't fall. He looks out for me. He's always got his eyes on me. I still have a little bit of fight that I have left. We always got in trouble in class for making lovey eyes at each other. He's awesome.
And let me tell you, my husband who said no dogs on the floor within 20 minutes of me getting home with that dog, and he loved this dog like child. We used to laugh at people that had dogs, the dog moms and the dog dads. We give up going into other stores just so we can go into dog stores and pick up dog toys for our dog. Enough said.
With just a few degrees of vision left, I'm stuck on the fence, or I feel like I'm stuck on the fence between two worlds. I don't have enough vision left to say that I'm very sighted. I am sighted, but I also feel like I'm blind in so many ways, I don't see well enough to say that I see. I have trouble reading. I feel like I'm a young elementary child learning to read.
Am I scared about my world going dark? Yeah. Yeah. I've been more scared. I'm not as scared. Bidal really makes me less scared.
Anybody out there with end-stage retinitis pigmentosa, I know you're not having fun. I'm not having fun in some ways, I see my vision changes moment to moment.
It's humbling. It's not fun. But I'm thankful. I'm thankful for the opportunity to share this with you, and I hope someone out there, I hope this touches someone, some small part of it. Hey, have a great day. My dog, he just walked over to me, so I think it's time for him to take a trip outdoors and it's sunshiny out. So, I'm going to go enjoy the sunshine this afternoon. Everybody else out there, you have a great day. Take care. Bye.
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 75
When a favorite hobby became more difficult for Dianne due to glaucoma, she learned to tap into something else. It turned out to be the ideal thing.
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Episode 74
Peter's sight slowly but steadily worsened over the course of several years. When he had to give up driving, his self-image took a hit. Working through his emotions has helped him cope and adjust.
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Episode 73
Sherry's vision loss has been gradual yet relentless. Asking for help to do things she used to be able to do on her own is a challenge for her, as it is for many. But she's finding some new tools and new ways to do things.
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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 69
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.
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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 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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