Excerpt from Never Seen the Stars by Kate Korsh
Invisible Disability
Read an excerpt from the novel, Never Seen the Stars, where Hattie reflects on living with retinitis pigmentosa, navigating family dynamics, and finding hope in her choices.
—from Never Seen the Stars, by Kate Korsh
The heat hasn’t even kicked on yet when I head down to the kitchen on Saturday morning to get some protein in me before this 5K. I’m surprised to find my mom sitting at the island, holding her coffee mug in both hands, letting the steam rise into her face. This is highly unusual. My mom is not a morning person.
“You’re up early,” I say. “Everything okay?”
She sighs and smiles at the same time. “I couldn’t sleep. Couldn’t stop my wheels from turning.”
I open the fridge and grab a string cheese, pulling the plastic back like I’m peeling a banana. I’m feeling more charitable toward my mom than usual. It’s nice to have another person awake when it’s this early. “Listen,” I say. “I know that Nate seems like a hopeless case now, but you really don’t need to lie awake worrying about him. Research shows that people can grow out of the ‘extreme doofus’ phase with the proper correction.” This is a joke because she and I both know that Nate is the one person in this house she doesn’t seem to worry about.
“Hey now, not fair teasing your brother when he’s not here to defend himself,” she says automatically. Then she focuses in on my face, pained, and I immediately know what she’s thinking.
Escaping her look, I open the pantry door. I tear open a packet of chai powder and shake it into a mug, fill the kettle, and put it on a burner. Then I turn back to her. “Seriously, Mom, I know you’re stressed that I’m going to end up like Dad, but honestly? He’s got a pretty good life, if you think about it. Good job, good wife, good son, gorgeous daughter.” I wink at her, trying to lighten her mood. “He could do a lot worse.”
“Mm, I don’t know if you noticed, but he’s also pretty depressed.”
That’s true. Can’t argue with that. But does she want us all to be depressed with him? I go and get a spoon out of the drawer and stand next to the kettle, willing it to whistle through the silence. It resists, punishing me for watching it.
She seems to read my mind in return. “Forget I said anything,” she says, running her hands through her hair, “I don’t want you to worry about him. It’s not a child’s job to worry about their parents.”
Why do parents always say shit like this? Stuff that puts them on one side and kids on the other? It’s so binary, so black and white and . . . totally unrealistic.
“Look, the fact is I do worry about Dad sometimes, Mom, and I don’t think that’s so terrible. He’s a person, and I’m a person, and people worry about each other. But I’m not worried about him right now. You know why? Because I think this depression is temporary. Like maybe even now he’s starting to come out of it.”
“I hope that’s true.” She pauses. “It’s one of those hard things in life—loving someone who’s struggling, and you can’t really help. All you can do is just keep on loving them. You know how much I love your dad, right?”
“Of course I know, Mom.” Not the worst thing in the world to hear her say it every once in a while, though.
“And what about you?” she says, and I can hear the exhaustion. “How are you going to handle the progression? You always take things so hard, Hattie. You’re so sensitive. I worry about you heading down the same path.”
The kettle finally comes to my rescue. I pour the hot water in and stir. When I speak again, new thoughts are taking hold. “The RP is not a choice. I’m stuck with it. But what I do while having RP is a choice. A choice that is one hundred percent mine.” Ever since I got my diagnosis, everything has felt like it was happening to me, like I was out of options. But that’s not true, really. I mean . . . “Yes, some things are out of my control. I can’t drive no matter how much I want to. But I still have options.” How I move through the world in general will have limitations. But there’s still an infinite number of decision points, as many as there were stars in the sky last night. The thought of all that possibility fills my lungs. I take a sip of the chai and smile. Do I want to be an actor? Maybe I won’t be able to navigate backstage in a theater, but I could do Shakespeare in the Park in the bright summer sun. Or I could do commercials. Or movies! And if I go totally blind? I put my mug down and spread my fingers out on the cold granite countertop. I can’t remember the last time I saw a blind character in a play or a movie. So where is the choice there? I know right away what Mason would say to that. “Well, Murph, maybe you’ll just have to fucking write the play yourself.” Write the play myself. That last thought causes a thrill to shiver through me.
My mom is listening, waiting for me to say something else. Is she getting it? She’s really not that different from Mrs. Leary. Even though I’m alive and breathing and standing right in front of her, she’s holding all this weight, taking all the responsibility for everything that’s ever happened to me in the past and will happen to me in the future.
I sit kitty-corner to her and almost chuckle. Here she is labeling me as sensitive when she takes everything at least as hard as I do. “Mom, I know it’s tough for you whenever you feel like I’m on my own or being independent or whatever. But I also know you know that it’s good for me deep down.”
“Of course. I know you need to individuate. I’ve read the books!” She laughs. “It’s so important,” she says more softly.
“Yeah, except what I think you don’t think about is that it’s good for you, too.”
“Well, you’ll always be my baby,” she says, like it’s a reflex.
“That’s not what I mean. I mean, you don’t have to be scared for me. I’m going to be okay. I really am. And if I’m not okay sometimes, well, that will be okay, too. It’ll be good.” Her hands are folded on the table and I put my hands on top of them, feeling calm in how sure I am about what I just said.
She takes one hand out from under mine and sandwiches my hands in hers. “How did I get such a smart, mature daughter?”
I stand up and toss my hair behind my shoulders, playful. “Who knows?” I tease. “But keep working at it and maybe one day you’ll deserve it.”
She raises an eyebrow. “You’re going to mock me and in the next breath—what?—ask me for a ride?”
I laugh and kiss the top of her head. “Exactly.”
Read on in Korsh’s novel, Never Seen the Stars, to follow Hattie as she finds strength in herself, support from her loved ones, and hope for the future. Also available as an audiobook on Audible.