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Were they yellow enough to warrant indoor sunglasses?
Passable. If only I could get rid of this nausea and the sensation of ice slowly freezing my body from the inside out.
Since my diagnosis with a rare orphan disease of the bile ducts and liver with the tongue-twisting name of primary sclerosing cholangitis (PSC for short), I lived every day knowing that all my plans and dreams could be snatched away in a heartbeat. PSC had no treatment and no cure. The only way to prevent it from killing me was a liver transplant.
there was nothing like medical problems as a litmus test for friendship.
was diagnosed six months after that trip. Our memories, and these photos, remained precious in my heart as the last blast of that carefree time when I didn’t know I was living with a super rare terminal disease slowly percolating in my body. I thanked my lucky stars for every day of that blissful ignorance.
“This vibe is hella weird,”
Would I get one? Would I die before? Would I die during? Would I die afterward, or would I survive? All these were possibilities, and the uncertainty made the air around me feel denser, pressing against me until I felt paper thin.
unlikely match.
“No. And I’m not going to dance around it—I’m worried. Like I’ve told you before, with PSC and other biliary liver diseases, you can be deathly ill with sepsis and cholangitis like you are now but still not have a high enough MELD to qualify for a deceased organ.”
cholangitis
You think this isn’t fun for you? Let me assure you it’s even less fun for me.
“Did you ever see him again?” Tom shook his head, still gazing at his lap. “No. I’ve been trying to track him down—that was the phone call I got just before we met. Another dead end.”
His lips touched mine.
“We had sex.” Amusement lit up Alan’s blue eyes. “No shit, Jules.”
“Just thought I’d drop by and say hello,”
“I thought this was an original idea for a second date.”
“Terrified, but I figured you must have been frightened all this time. It never stopped you. If you could be this brave, I could get some needles. So what if I faint?” “You fainted?” “Twice.”
“Ever since that first time in the lab, your hand feels right in mine.”
“I’m nauseous all the time and have a tube jammed up my penis. I’m not exactly pleased with that state of affairs, let me tell you. I have my own morphine pump, though.”
“It’s not your gratitude I want.” The hurt and ferocity in his eyes made me flinch. “It never was.”
“Because there’s this spark inside you that’s special. Where do you think your nickname came from, anyway? It’s annoyed me, it’s aggravated me, it’s captivated me, but one thing was certain—I could not stand by and watch it be extinguished. Not when I could do something.”
can’t believe it. I ate everything.”
“That makes me happy.”
“You know what they say, life doesn’t have to be perfect to be wonderful.”
Life has no guarantees for anyone, sick or not, when it comes down to it. The problem is the majority of people out there in the world live like their future is guaranteed.”
“I guess that’s the ironic thing about facing death—there’s no better crash course in learning how to live.”

