"Doing things that scare me... because I want to live"

Hadley

Doing things that scare me…because I want to live

Leighann: The first few times I went in the workout room at the Y, I just felt so visible but invisible. You know, like a lot of people don't talk to you when you're blind.

Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.

Leighann: My name is Leighann. I'm actually from Collinsville, Illinois, which is in the Saint Louis, Missouri metropolitan area. I was diagnosed with glaucoma when I was 14. I'm now 47. And I was basically afraid of losing my vision ever since I was 14, because the only thing I knew about glaucoma is that people went blind from it.

My right eye kind of progressed more quickly than my left in terms of complications. I had a failed corneal transplant on my right eye back in 2017, and we didn't repeat it because I had a lot of optic nerve damage. The glaucoma was just a lot worse in that eye. So, my left eye was my good eye for a long time.

And I cried every day for two weeks when I realized my vision wasn't getting better and that things were pretty bleak. And what I've been afraid of for decades had finally taken place.

I was teaching indoor cycling before the vision loss. Lifting weights 3 to 5 days a week. I had lost a lot of weight and was maintaining it with exercise, and I thought all of that was over, but I ended up getting linked up with Achilles International. They provide guides for blind and visually impaired runners. I've done a 5K with them, which was an amazing experience, being able to use the tether, so not having my white cane.

I ended up learning to use voiceover on my phone and on a Mac. And basically, I do a lot of things that honestly scare me to death because I want to live.

The first few times I went in the workout room at the Y, I just felt so visible but invisible. You know, like a lot of people don't talk to you when you're blind. And, you know, now that I'm single, I get scared that I won't meet anyone because I won't know if anyone's making eye contact with me or looking at me. But basically, just trying to focus on living the best life that I can.

So, I don't know what the future holds for me, but I know that I intend to fight, and I intend to live my life. So, what I would say to anyone who is facing vision loss is that, you know, you're going to grieve and that's okay, and you're going to have good days and bad days. I still have days when I get frustrated, and I just don't want to be blind anymore. But I just trust that there are resources out there for this, and I'm willing to reach out, and I'm willing to ask for help.

I think one of the hardest things was just being seen as incapable.

I've had somebody grab the strap on the top of my backpack to lead me around. I'm having to learn to speak up and to advocate for myself. And I'm realizing that people that have been blind their whole lives, it has to be exhausting because you're constantly an advocate for yourself.

So, I guess what I would say to anyone listening to this who's not navigating vision loss, but maybe you love someone who is. Help be their ally. Help advocate for them because it's exhausting living this life and having to explain things. Advocate for yourself and prove yourself as a professional and someone who's intelligent. And you know the people that knew me before, I feel like see me is pretty capable, but the people who really didn't know me, I'm the blind lady but I'm hoping to normalize disability and normalize that. People with disabilities can take up space in the world and can exist and can live good and wonderful and full lives. So, I hope this story help someone. Thank you for listening.

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].