"I wasn't living my truth"
Listen in as Sam shares how he struggled trying to hide his vision loss-and how he finally turned the corner.
Hadley
I Wasn’t Living My Truth
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.
Voice 1: You cannot do this alone. You need people who are experiencing the same thing.
Voice 2: Probably the hardest part was just navigating through the emotions of it.
Douglas: My name is Douglas Walker. It can be exhausting trying to keep up a charade. Today, we’ll hear from Sam Seavey from the Blind Life YouTube channel. Let’s hear how Sam finally realized that the stress of hiding his vision loss was no longer an option.
Sam Seavey: Hello. My name is Sam Seavey. I live in central Kentucky, where I'm an assistive technology program manager. Most people probably know me from my YouTube channel, The Blind Life, where I share my life living with vision loss and do assistive technology reviews. If you've seen my channel, then you may already be familiar with my story, my vision story, as they say.
But if not a brief history, I was diagnosed at age 11 with Stargardt disease, which is a juvenile form of macular degeneration. So, I grew up, essentially grew up low vision, going through school, getting my first jobs out of high school, dating marriage, everything has been with low vision. And you would think that because of that, I would be very well adjusted to having low vision.
And for the most part I am but something that a lot of people might be surprised about is as adjusted as I am with my vision loss. I still have my bad days. I still have a lot of bad days. I think we all do. And I tell people that that's totally fine. That's perfectly normal to still have bad days.
But what's most important is that you have more good days than bad days, obviously. But that wasn't always the case for me. Even though I was diagnosed at a very early age, I still wasn't fully accepting of my vision or my lack of vision ,until probably in my thirties, my early thirties. Up until that point, I really fought it tooth and nail. And did my best to hide it.
I didn't want people to know that I was visually impaired and especially going through school and high school and dating. I did everything I could to work around the vision impairment to hide it. And I really fully give credit to my wife for kind of breaking me out of that cycle and giving me the very tough love that I needed at the time. Basically, telling me to knock it off and that I was being ridiculous trying to do this, trying to pretend to be something that I'm not because it's exhausting trying to keep up a charade, trying to keep up this facade of I'm perfectly normal, I'm just like everybody else.
There's nothing wrong with me. What vision impaired? No, not me. It was exhausting. And I wasn't living my truth, as they say. And like I said, I give credit to my wife for being like, Knock it off. You're being ridiculous. She really helped me to realize that there wasn't anything wrong with me. There was no reason to be hiding something because hiding it means that I was ashamed of it and I'm not ashamed of it because I was comparing myself to everybody else and wrapping up my entire self-worth into a couple of faulty retinas.
Two tiny little pieces of tissue in my body that don't work the same as someone else next to me, standing next to me. In my head, that meant that I was less than them in in just about every way. And that is insane. And she helped me realized how ludicrous that was. Once I realized that and once I changed that mindset, I could finally embrace who I am.
And I was then open to letting good, positive things happen in my life. And I can honestly say in the 15 years since that acceptance, my vision impairment, my blindness has brought way more positive things to my life than negative.
Douglas: Was there something that someone said to you or something that happened along the way that made all the difference in the world in helping you adjust to living with vision loss?
We‘d love to hear from you 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]. Again, my name is Douglas Walker. Take care and I’ll see you next time.
All Episodes
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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.
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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.
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Episode 50
Learning to live with vision loss wasn't always easy for Pam. But with time, her bad days are fewer.
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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"
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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.
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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.