Chapter 14 #2
“The good news is, you’re at the beginning stage,” he says as he scrolls down on his laptop screen.
We’re in his office at the university. It’s one of the best retinal research laboratories in the country, which is why my doctor in Chicago referred me here.
And one of the main reasons I decided to stay on Liberty.
“Your field of vision results are pretty good considering your age.” His gaze flickers up to me.
“At this stage, we’re looking at mild intermittent vision loss.
How often are you experiencing the white arcs you mentioned? ”
“A few times a month, I guess.”
He nods, typing something on his keyboard.
“And have you experienced night blindness?”
“Yeah.” It was dusk the first time in Rome. “Not all the time though. Sometimes I’m fine.” Oh, and the woman I can’t stop thinking about wants me to chase her in the dark.
So let’s hope it’s intermittent.
“That’s to be expected,” he tells me. “Symptoms can vary considerably. But the one thing we know is that they’re progressive.”
My mouth feels dry. I know this. Google told me as much after I began testing for RP in Chicago. And I know I should feel lucky that I made it to my mid-thirties before I experienced any symptoms. Kids are diagnosed as young as ten and nearly blind by their thirties.
But it’s still a kick in the teeth to learn I’m going to lose my sight at some point in the future and can’t do a damn thing about it. Because there’s no cure for Retinitis Pigmentosa. No effective treatment to stop it in its tracks.
And the biggest kicker? It’s genetic. Which is why I had an appointment at the lab before I came to see Dr. Rogan. To try to isolate the gene that’s causing it.
And then see if any of my family are carrying it too.
My stomach lurches at the thought of that.
“The plan will be to monitor you on a bi-annual basis,” Dr. Rogan says. “We’re constantly learning more about RP with our research. And you’ve agreed to be part of our clinical trials?”
“Yeah.” I nod. Because I’m happy to help with that. Especially if it can help the younger Fitzgerald generation.
“Great. So once we have your genetic results back, each month we’ll send you a questionnaire.
About symptoms, both the ones you’re experiencing now, and the ones you’ll experience in the future.
We’ll set a minimum of twice annual appointments for testing, but if the questionnaires flag anything we need to investigate further, we will call you in sooner.
” He smiles. “And of course, you can call us any time you have concerns.”
“What kind of tests will I have?”
He smiles. “Obviously we’ll mostly be monitoring your field of vision. But as I said, we’re running a lot of research programs right now. If we make any breakthrough there, we’ll discuss any options we might have with you.”
“Okay.” I nod. Fuck, this is depressing. “Thank you.” I take a breath. “How quickly do you think I’ll lose my sight?”
He closes the laptop, and looks closely at me. “It sounds completely vague, I know, but it’s almost impossible to say. I’ve seen people diagnosed at your age who still have good direct vision at sixty.”
“Are they still driving?” I ask. Because that’s one of my biggest fears. To be banned from driving.
“A lot of my patients are, yes. And you’re nowhere near having to stop.
You could easily be fine for another twenty years.
” He gives me that sympathetic smile again.
“The biggest issue is that as humans we learn to adapt quickly to the loss of sight. We’re clever enough to use our other senses, which makes us think our vision is better than it is.
Which is why the questionnaires and exams are so important. ”
I nod. I read that, too.
He lifts his laptop again. “It says there’s no history of this in your family. Is that right?” he asks.
“Yeah. Nobody’s had it. My parents both had twenty-twenty vision.”
“And you don’t have any children?”
“No. And I won’t be having kids,” I say. Because the chances of passing it on are way too high. And I can’t do that to a child. I just can’t.
“But you have siblings? Any symptoms there?”
“No. One of my brothers wears glasses. The others have good vision. My sisters too.”
“We’ll still want to genetically test them,” Dr. Rogan says.
My throat tightens further. “Of course,” I say. “But I still need to find a way to break it to them.”
“They don’t know?”
“Only one brother does right now.” Wyatt. And he’s so laid back he hasn’t asked many questions.
“Well, I’d advise you to let them know as soon as possible. Once we have your genetic results back, we can test them to see if they’re carriers too.”
I send up a prayer to the god of retinas that they aren’t.
He passes me a glossy leaflet with a QR code on it. “You can use this to access information about your condition, and about our research,” he says. “And of course any time you have a worry, feel free to call my office.”
“Thank you.”
“Do you have any questions I can answer for you now?” he asks me.
I let out a breath. Way too many. And none of them I’m sure I can bear to hear the answers to. I go with, “So I just keep doing what I’m doing?”
“Yes. For as long as you can. People live long and fulfilling lives with RP. I have no doubt you will, too.”
Yeah, but most of them don’t travel for a living. Or seek out beautiful pieces of art for clients.
“Thank you.” I stand, because I need to get out of here. I need to forget about this for a while.
Dr. Rogan stands too, offering me his hand. I shake it firmly.
“Take care, Zach,” he says softly. “I know there’s a lot to take in, but you are not your condition. Keep living life. Enjoying it.”
That’s what sinks in. And he’s right. At this moment, it’s a diagnosis but it’s not my living fact. I can still drive, I can still look at paintings.
I can still run after a pretty woman. Even in the dark. For now.
As I walk outside the research building, toward my car parked in the lot, my phone buzzes in my pocket.
Answer to question two. I want you to choose the location. I can handle surprises. – Sadie
It’s strange, but seeing her words on the screen makes me relax.
My mouth curves before I can stop it. If we’re going to do this at night – and we are going to do this at night – I know the best location.
It has trees but I know the place like the back of my hand.
Which means I could find her with my eyes closed.
Maybe I should be worried about how much space she’s taking up in my head. But the messages, the planning, they’re taking up a space that needs to be filled.
Right now, I need to feel in control of something, because this shit is just so out of my scope it’s not funny.
I’ve barely fired up the engine when the car Bluetooth pings. Hudson’s name flashes on the screen.
I try not to sigh. My brother always did have perfect timing.
Hitting accept, I lean back in the seat. “Hey,” I say, glancing out of the windshield at the research center. Sun reflects back from the windows, making my eyes squint.
“Hey, I just saw Jesse. He said you took the ferry to the mainland. You never mentioned going over there.” Hudson sounds curious.
Of course Jesse told him. “Yeah,” I say, letting out a sigh, because this was supposed to be under the radar. “I had an errand to run.”
“What kind of errand?” Hudson asks.
God, I should have known better than to answer his call. He’s a nosy bastard. And I’m not telling him the truth. Not yet.
“Just some stuff with the gallery. I had to get something notarized.”
“You could have done it on the island. Samara is a notary.”
Oh great, so there goes that excuse in the future. “I didn’t think about that,” I murmur. “Anyway, it’s a nice day. I wanted to get some fresh air.”
“Isn’t there enough air on Liberty?” Hudson’s voice softens, but it carries that edge only an older brother can manage. “You sure you’re okay?”
I stare through the windshield at the line of cars, their outlines blurred in the afternoon light. “Of course I am. Why wouldn’t I be?”
“I don’t know,” he says. “I just worry about you. All of you.”
“You don’t need to,” I tell him. “Not anymore.” Because I’m more worried about him. Not to mention his kids.
“Well I can’t help that.” He pauses for a minute. “When will you be home?”
I realize he’s talking about the island. And now I understand the call. He’s afraid I’ve left without saying goodbye.
Jesus, I’m not that much of a dick, am I?
“Heading back in a bit,” I say. “Should be there by evening. Don’t worry, Dad. I won’t miss my curfew.”
He laughs softly. “Asshole.”
“Thanks for checking in on me, but everything’s fine.”
“No problem. Take it easy.”
“You too.” I hang up and stare out of the windshield again, feeling guilty. And then I look down at my phone and see she’s replied to another question and my lips curl.
Roughness scale – 6 I think. I want you to be powerful. But I also need to feel like I have power too. – Sadie
God, I love how honest she is. How she’s throwing herself into this. How she’s completely unaware that she holds all the power.
Planning our night, picturing her breathless, running through the dark is the best distraction. Simple. No expectations. No family waiting for me to fall apart.
I’m not looking for a relationship right now. That’s what I told her. And it’s the truth. I can’t put anybody else through this. And of all the people I know, she deserves better than me.
But that’s okay. This thing between us is only about the game, about her pleasure, helping her push her boundaries in a safe way. It’s nothing about the way her messages make me feel steady for the first time all day.
Because that would be too close to admitting she makes me feel alive. And I’m not sure I want to feel anything real right now.