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“Um, well,” he forces a quick smile, then takes a sip of his juice, “you mentioned something last night about –”
“What’s wrong with you?” Brendan blurts. “Are you dying?”
“As I was saying,” Breckin glares at his brother, “you mentioned something, but we didn't quite–”
“It was hard to understand through all my puking and drug induced delirium?” I offer.
“Exactly.” Brendan nods before taking a large bite of his charred toast and leaning back.
I put my slice down on my plate and take a deep breath. Guess it’s best to rip the Band-Aid off fast. Get it over with. They’ve already seen me at my worst. They probably do deserve a better explanation than whatever word vomit tumbled from my mouth last night.
“I have porphyria.” I keep my tone even as I focus on the clean, white areas of my plate.Medical, technical, sterile, I can do that. “Acute Intermittent Porphyria to be exact.”
“Is that like . . .”
“It’s a rare genetic disorder . . . It’s not contagious.” I look up and meet both of their concerned gazes before staring back at my plate. “Um . . . Basically, my blood is deficient in an enzyme that helps my liver break down toxins. So, those toxins build up in my nerves. When I’m exposed to certain triggers, I have an attack.”
“That’s the stress, alcohol, and sun you were talking about last night, right?” Breckin asks.
“Yes.” I pick at the crust of my burnt toast. “Porphyria is different for every person, the triggers and symptoms are different, and it’s different for every attack which is why it’s so hard to diagnose. But for me, it’s mostly a lot of pain. Stomach pain, severe migraines, nausea, like you saw last night . . .” I keep rambling, not really sure if I’m doing a good job explaining it or not. It’s more than that. It’s not being able to think straight or focus, muscle spasms, random pains shooting through my body, a pain so severe I can’t even sit up straight let alone think about walking. But, how am I supposed to explain that to them?Hey, I look normal on the outside, but I’m in a lot of pain and my head is doing all types of even worse things.
“So this attack last night,” Brendan prompts, forgetting about the slice of toast he’s still holding, “what caused that?”
“Um . . . Mainly stress. Probably a combination of stress and the sun.”
“Asra,” Breckin reaches across the table for my hand, “if we did anything that caused –”
“You didn’t.” I squeeze his hand back, even though I’m not sure if that’s a lie or not. I shouldn’t have gone out for breakfast. I shouldn’t have stayed out that late. And I know I can’t blame my work entirely for the stress. I could barely focus on it yesterday.
“Little Girl,” Brendan strokes my chin from the other side of the table, “one thing we promise you, is that we’ll never lie to you. Please, we’re big guys, we can take it. We have to know if we did anything wrong.”
“I don’t know.” My shoulders deflate as I find a chunk of scrambled egg vastly captivating.
“Okay, so no stress?”
I nod my head.
“And what exactly do you mean by the sun?”
Shrinking into my robe as much as I can, I brace myself for the outfall. This is it, what always gets everyone. “Somehow, the sunlight acts as a catalyst to make the toxins flare up and cause attacks. If I’m in the sun for seven minutes, I start to sunburn. Fifteen minutes, my eyeballs sunburn, the white part turns yellow, and I get an instant migraine. If I’m out for more than twenty minutes unprotected, I risk getting an attack.”
“That’s why I’ve always seen you with sunglasses and a hat outside?”
“Yeah.” I take a deep breath. The Band-Aid is officially gone. “I pretty much avoid the sun whenever I can. I sleep during the day and work from home at night.”
“That –”
“Sucks,” I finish Brendan’s statement. “It really, really does. There’s no magic pill for it, no cure or easy fix . . . Other than the lifestyle changes I already implement.” Admitting it out loud is harder than I thought. It’s more real. There’s no pretending that one day things might be different.
“How can you handle that?”
I shrug. “I don’t have a choice.”
“Still, though, that seems like a lot to handle on your own.”
“It’s lonely.” I nod my head. “It is. But it’s more than that. It’s wanting to be out there,” I turn toward the window, “wishing I could be out there and feeling so horrible and guilty that I just . . . Can’t.” A tear slides down my cheek before I can stop it.
“Hey,” Brendan wipes my tear away before it drips off my chin, “you don’t have to be alone,” I start to shake my head, but he continues, “we’re here for you, even just as friends or neighbors, whatever you need.”
