MARY LOUISE KELLY, HOST:
Gina Velasquez always wanted to be a mother, but when she was 27, she was diagnosed with HIV and AIDS. This was the '90s, and doctors told her she had just a few years to live. Gina survived though, and as treatments improved, her health did too. When she was stable, she decided to pursue the dream she had put on hold - having a child. That is when doctors gave her another warning. Her baby would be healthy, but pregnancy would accelerate the loss of her vision, which was already damaged by the virus. Gina decided to move forward. Her vision continued to decline after having her son.
Today, producer Vivien Schutz brings us Gina's story for our regular segment of short-form audio documentaries. We'll hear how Gina holds on to memories and creates new ones with her son, Aidan Healey (ph), before going completely blind.
(SOUNDBITE OF MUSIC)
GINA VELASQUEZ: It's like a drip, drip, drip, drip - like a faucet that just drips until it just slowly drowns you into that abyss, in nothingness. It's happening, and you're - you can't stop it. You can't stop that drip. That's the process of going blind. That's how it feels to me.
(SOUNDBITE OF MUSIC)
AUTOMATED VOICE: Manhattan - 2019.
ODRIDGE: Hello.
VELASQUEZ: Oh, hi.
ODRIDGE: Can I join the fun?
VELASQUEZ: Yes, please. Hi, Dr. Odridge (ph).
ODRIDGE: And how are you?
VELASQUEZ: I'm fine.
ODRIDGE: So what's been going on?
VELASQUEZ: Nothing's changed. It's still, you know, almost nothing. I do see light, which is good.
ODRIDGE: Here we go. So big, wide. You're going to do your pressure. Looking. Hold it.
(SOUNDBITE OF MUSIC)
VELASQUEZ: Especially when my son was little, and I knew that at some point I was going to lose vision, I would love getting close to his face and just looking at him, especially when he slept. I would pull his little hair to the side and just really study his features. I would touch his nose and his forehead, just to get a sense of the shape of everything. I had, like, mapped out in my head what he looks like.
(SOUNDBITE OF WATER RUNNING)
VELASQUEZ: He was maybe 3 to 4, and I would wash his hair and he would get angry. He'd say, Mommy, you got it in my eyes, and he would cry. And I would say, oh, I'm so sorry, baby, and I would flush it out and rinse out his face. And so, over time, he wouldn't want me to. He would get angry in the bathtub. And I would feel so bad. And I would say to him, oh, you understand Mommy can't see very well, baby. I would just think, we're going to get through.
(SOUNDBITE OF MUSIC)
AIDAN HEALEY: Can you see in your dreams? Like, when you dream, do you see?
VELASQUEZ: Yeah, I do. And I think there's a memory component in dreams because even if they're supposedly taking place in the present, it's images from the past - my memory of them. When I dream of you, I see the little boy that I remember, even if it's you now.
HEALEY: I used to get sad by that thought - thinking that you wouldn't know what I would look like when I was older.
AUTOMATED VOICE: Home.
VELASQUEZ: (Speaking Spanish).
AUTOMATED VOICE: Long Island City.
VELASQUEZ: Aidan, where are you going to sit for the graduation?
AUTOMATED VOICE: 2020.
(SOUNDBITE OF MUSIC)
GINA VELASQUEZ AND AIDAN HEALEY: (Singing) Words are flowing out like endless rain into a paper cup. They slither as they pass. They slip away across the universe. Pools of sorrow, waves of joy are drifting through my opened mind, accepting (ph) and inviting me. Jai Guru Deva, Om. Nothing's going to change my world. Nothing's going to change my world.
HEALEY: What do you think I look like?
VELASQUEZ: OK, I don't know why - and I know you don't - but I think of you as a young George Harrison. The long, flowing curly locks, chocolatey eyes.
HEALEY: Well, I do - yeah, I do have brown eyes, and...
VELASQUEZ: Tall, thin. Dry sense of humor.
HEALEY: I guess I could be, like, a police, like, sketch of George Harrison.
VELASQUEZ: (Laughter) Right. Yeah. And your ears - I think your ears are like mine, right? Can I feel them?
HEALEY: Sure.
VELASQUEZ: Oh, no, they're attached. Mine are unattached here. So - right?
HEALEY: If you want, you can feel my nose.
VELASQUEZ: I forgot that your ears were attached. Oh, I remember this little nose. See how it goes in here and then comes out and up?
HEALEY: Yeah.
VELASQUEZ: Oh, my God.
Did you ever feel like you had to take care of me?
HEALEY: No.
VELASQUEZ: Never?
HEALEY: No.
VELASQUEZ: 'Cause, I mean, that's the thing - I've never wanted you to feel any responsibility or duty.
HEALEY: I don't know. I guess as a child, if - you know, even if your circumstances are unordinary, as long as it doesn't, I guess, affect, you know, your happiness as a child, you don't - or I know I didn't really question it.
VELASQUEZ: Yeah. Sounds like I did OK there (laughter). Yeah.
(SOUNDBITE OF MUSIC)
VELASQUEZ: Saturday, February 17, 2024.
So just a little while ago, I turned the lights off and then I turned them back on, and I looked in the direction where the light should be and I realized I almost see none of it. It hit me suddenly that I've lost more vision. I'm almost completely in the black. It's weird because I'm not devastated. I think it's - I've gotten used to vision loss at this point 'cause I've been going through it for so long. This isn't as terrible as I thought it would be.
(SOUNDBITE OF MUSIC)
VELASQUEZ: Alexa, play "Recovery" by Olivia Newton-John.
(SOUNDBITE OF SONG, "RECOVERY")
OLIVIA NEWTON-JOHN: (Singing) I live on an island far away, all by myself. There's no one else.
VELASQUEZ: It's such a confirmation of who you are, what you are, where you are in space, to have a visual of people and things.
(SOUNDBITE OF SONG, "RECOVERY")
NEWTON-JOHN: (Singing) Of hurting me, deserting...
VELASQUEZ: When you lose something like vision, then reality does begin to feel like a concept.
(SOUNDBITE OF SONG, "RECOVERY")
NEWTON-JOHN: (Singing) Lover, don't worry about my recovery.
VELASQUEZ: Human beings are very adaptable. And you find a way to connect and enjoy - appreciate what you do have. That's what I've had to do.
(SOUNDBITE OF SONG, "RECOVERY")
NEWTON-JOHN: (Singing) Lover, don't you worry...
KELLY: This story was produced by Vivien Schutz, and you can find a longer version at transom.org.
(SOUNDBITE OF SONG, "RECOVERY")
NEWTON-JOHN: (Singing) You won't recover... Transcript provided by NPR, Copyright NPR.
NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.
