"Not butterflies and rainbows. This is hard stuff."
Nikki has lost her vision due to a rare autoimmune disease. While she appreciates positive bits of advice and encouragement, she also stays grounded in the struggles she's facing and knows others do, too. She's feeling the loss.
Hadley
“Not butterflies and rainbows. This is hard stuff”
Nikki: And I try to get a positive part of it, but it's hard. This is hard stuff. There's grief involved. There's things you're going to have to let go of.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Nikki: My name is Nikki Leathers and I'm from Auburn, ME, way up north.
I have a rare autoimmune disease called Behcet's, and it's even rarer for women in the United States to have panuveitis eye involvement with Behcet's, but I'm the one that gets struck by lightning a couple of times.
So, I was diagnosed in 2014. It is a journey of vision loss because I've experienced sudden vision loss where I woke up and had no vision at all.
I've had at least 20 eye surgeries. I've been on multiple biological medications. It was almost a relief in May of ‘23 when I had a retinal vein occlusion and there was no more treatment. And so, then it was a journey of finding technologies and what I could do and not do.
I like Insights and Sound Bites, but sometimes it feels like everybody has butterflies and rainbows. And I try to get a positive part of it, but it's hard. This is hard stuff. There's grief involved. There's things you're going to have to let go of. I can't drive.
You know, I can’t see my children's face or their drawings and it's hard. But I do believe we need to look at any of the small wins we have, any of the positives that we can. But that's with everything. It's not just vision loss.
There is this moment that I've had to face several times and it's been really hard because of having lost my sight, gotten some of it back, and then lost more of it.
I had this hobby called letterboxing where I went out and found stamps in the woods and I would carve stamps and hide them for others. Carving stamps was my thing. And I have had to say goodbye to that and that is hard.
I found ways around it. I got a digital microscope and I could see a millimeter at a time of a line so that I could carve a stamp, and I did.
Part of me still isn't quite given up at all. I might be able to do something with puffy paint or tape, wishing I could still carve.
But when I've had to face that, I just can't do it. Every time that I put the carvers away and the carving material, it's like a death in the family. You know, it's like this love and this passion that I had. I love to, you know, make people smile with it. It was hard.
I mean, it's like it compels you. You can't really help it. But there's also something with letterboxing. I have a friend that I sent hundreds of stamps to that I've carved and she hid them all over the United States. So it does my heart good. It keeps me, you know, keep it on.
Sometimes that support can lead to a problem with dependency. I think that there's just this need to be aware of yourself to do self-reflection and really to know when it's going too far. When you got to say “This is challenging for me, but I still need to do it.”
Because sometimes we want to just hide and let somebody else do everything. But I don't think that has to do with sight loss. I think that's all of us.
Sometimes things are hard and we don't want to do it. And if somebody else is going to jump in and do everything for us, but I don't think it's good for us and I've been there and getting back out of that, it is a difficult climb. And you know, step by step, saying like, I know this is hard for me. I thank you for offering the help, but I need to do this.
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 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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Episode 62
Anne's declining vision had her feeling down and sorry for herself. But two gifts—one she gave and one she received—helped turn things around for her.
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Episode 61
Glaucoma advanced to the point where Ron found it too difficult to do the volunteer work he loved in retirement. Still, he found a way to pull himself out of the hole he felt he was in and continue to give back.
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Episode 60
Diabetic retinopathy has taken more and more of Charles's vision. To cope, he is learning new approaches to life AND leaning into areas of passion that don't rely on sight.
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Episode 59
Bruce's vision had been decreasing for years. When it reached the point where he was tripping over objects and bumping into people, he felt embarrassed and kept his vision loss a secret. His wife convinced him to try something new.
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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.
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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.