"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 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.
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Episode 46
Ashia felt all alone in her vision loss. No one around her knew what she was going through. Then she found something that gave her hope.
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Episode 45
Dennis found that many aspects of life with vision loss can be a struggle. Then he found something that turned that around.
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Episode 44
Judy has lived with progressive vision loss for many years. She's found a way that helps her cope and adjust.
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Episode 43
For years Bill hid his vision loss from others. He was self-conscious about it. Then, he decided to open up.
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Episode 42
For Cynthia, every story shared helps her on her own journey with vision loss.
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Episode 41
Living with low vision meant Karen was constantly explaining to others what she can and can't see. Then she found a tool that has made a big difference.
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Episode 40
Having to give up the car keys was traumatic for Eugenia. She worried about becoming isolated until she found a new way.
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Episode 39
This week, hear how rediscovering a favorite activity helped Celia find balance as she adjusts to vision loss.
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Episode 38
Denise can struggle with the slow but continuous loss of vision she's facing. But she's found a way to pick herself up on a bad day.
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Episode 37
Listen in as Vanessa shares what has helped keep her from feeling hopeless and defeated due to vision loss.
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Episode 36
Stacy shares with us how being honest about her vision loss with her friends and coworkers has made all the difference in the world.
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Episode 35
For many, having to give up the car keys due to vision loss is traumatic. Deb felt it too. Then, during a call to arrange transportation for herself, a new door opened.
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Episode 34
Listen in as Anne describes how a question posed to her shifted her perspective for living with vision loss.
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Episode 33
This week, William shares how learning to continue with his favorite hobby, even with vision loss, has been therapeutic—and uplifting. Here's the link to his website https://www.blindtruths.org/
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Episode 32
This week Angela shares how she struggled to get around due to vision loss, how she tried to hide it from others, and what helped her.
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Episode 31
This week we hear from Appreciate. She found that a Facebook group, The International Blind Cafe, gave her a source of comfort and encouragement.
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Episode 30
Marian's inner voice had her living in fear. Listen in as she shares how she redirected that voice to be more helpful for her.
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Episode 29
This week Dorrie shares how technology has made all the difference for her in living with vision loss.
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Episode 28
Today we hear from Ed who shares how the source of hope for him has changed with time.
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Episode 27
Listen in as Cindy shares how advice from her son helped her adjust to her new normal.
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Episode 26
Listen in as Tim recalls a conversation with a store clerk and how it helped him adjust to life with vision loss.
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Episode 25
Listen in as Alice shares a boyfriend's advice from many years ago. Words that give her hope, even today.
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Episode 24
Listen in as Bill shares how a chance encounter changed his perspective on vision loss.
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Episode 23
Listen in as Ruth shares how her frustration and impatience turned around with just one phone call.
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Episode 21
Listen in as Eugenia describes how her own determination and the support of friends helped her keep moving forward.
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Episode 20
Listen in as Zenobia shares how she found the support and strength she needed.
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Episode 19
Listen in and be inspired as Saras explains how changing her perspective to, "Why NOT me?" helped her tap into her strengths.
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Episode 18
Sheri shares with us how the love for her horses helped her find purpose and peace.
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Episode 17
Kendra shares with us how a visit to a low vision center gave her more than she ever expected.
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Episode 16
Listen to Carol's story as she shares how owning her changing vision gave her the drive to discover useful resources and realize that it's important—and okay—to ask for help when she needs it.
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Episode 15
Listen in as Chuck shares how he found hope in a chance encounter.
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Episode 14
Listen in as Kara shares how she found new ways to express herself in her love of visual art, and redefining a meaningful life.
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Episode 13
Listen in as Leah shares how it finally clicked for her—the realization that she's not alone.
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Episode 12
Hear how Axel set one goal at a time and slowly took the steps to rebuild his skills, reengage in his art, and reestablish his emotional well being.
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Episode 11
Gregory shares how finding a mentor made all the difference in the world to him, and his entire family.
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Episode 10
Listen in as we hear from Sarah. For her, hearing a blind architect's story changed her perspective on what was possible.
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Episode 9
Listen in as Tom shares how leaning on his faith helps him adjust to vision loss.
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Episode 8
Pat shares with us the choices she made when faced with a visual impairment.
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Episode 7
Darryl shares with us how a referral to a low vision specialist was where his life with vision loss began to turn around.
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Episode 6
Annie shares with us the steps she took to work through her depression by seeking help from a mental health professional.
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Episode 5
Sharon shares with us how she worked through the isolation and found people just like her to get the support she needed.
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Episode 4
Hannah shares with us how she had to give herself permission to grieve her vision loss in order to reach acceptance.
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Episode 3
Randy's search for help led him into a whole new way of thinking.
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Episode 2
Ruth shares how her mother's advice, "Knock the T Off Can't," helped her.
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Episode 1
Larry shares how he found strength in his core beliefs to get him through the shock of his initial diagnosis.