FORT WAYNE – Her voice betrays not a quaver as she talks about the light going away. Let’s put that remarkable fact out there straight off the hop.
Let’s take you back to the moment you’re asking your questions and Brenda Niccum is answering, and then she’s saying something about orientation and mobility training, because she knows what the endgame is. She’s lived with retinal pigmentosa for more than a decade now – that’s when it was diagnosed, anyway – and it holds no surprises for her.
And so, the orientation and mobility training.
This is a progressive disease, and so I’m trying to prepare myself for what will come, says Niccum, 43. Trying to stay positive about it but accepting the inevitable.
Which is legal blindness.
Niccum’s already pretty close. Retinal pigmentosa steals your night vision first, then, progressively, your peripheral vision. Niccum says a person with normal vision has about 180 degrees of peripheral field; she’s down to about 20. The light is going away.
So why does hers still shine so brightly?
Here’s something else, see, that you need to know about Niccum: There’s no give up in her. Which is why, along with Anne Palmer, she finds herself as co-chair for the upcoming Fort Wayne VisionWalk, which goes off Saturday from Headwaters Park with the goal of raising more than $50,000 to support the Foundation Fighting Blindness, which has raised almost half a billion dollars to fund research into retinal diseases.
Locally, the VisionWalk has raised in the neighborhood of $480,000 in eight years.
They’re pretty effective as a community. Everybody comes together to help out, Niccum says. I’m really honored to be a part of this.
She got involved in October, after a checkup revealed her to be nearly legally blind. Her mom and dad were involved with the Foundation Fighting Blindness, and so Niccum began attending some chapter meetings, and, well, one thing led to another.
Now she’s a co-chair of VisionWalk and part of a team that will be doing the walk.
Walking like this isn’t so much an issue, says Niccum, who has a house full of dogs she regularly walks. Daylight is fine, I don’t really have any issue with that. I have to kind of scan my eyes back and forth and look around to kind of take everything in.
This is my second time walking. It’s always a good time.
And, of course, it’s personal for her. And has been for a while now.
As far back as childhood, she knew something was off with her sight. While the other neighborhood kids ran around in the dark playing tag, Niccum couldn’t really see them. She couldn’t see anything, in fact.
So I knew it then, but I didn’t really understand it until I was older, she says. It’s hereditary; my dad is almost totally blind. So I knew he had trouble, but usually the boys are the ones who get it, so I thought I was pretty safe.
Then, one night in her late 20s, she hit a curb driving at night. Now her peripheral vision is steadily narrowing. The disease is doing what it does.
Well. She’s doing what she can, of course. All she can.