“Yes.” That’s the tentative diagnosis I was given after all the tests I had in Chicago. Following the clusterfuck of me tripping and not seeing the car coming right at me when I was crossing the road in Rome.
“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 canvary 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 ofresearch 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.
