Confessions of a Teenage Leper

by Ashley Little

  Dr. Rodriguez gave me a small smile. She suggested that I start writing. I could write anything I wanted, my life story, whatever. “Many patients find it very therapeutic to write about their experience with Hansen’s disease,” she said. “Some of them have even gone on to publish their books.”

  “Really?”

  “Yes, their books are all in the library here. You can check them out.”

  “Do I need a card or…?”

  “No. We just ask that you return the books once you’ve finished with them.”

  “Cool.”

  “And don’t read in the bathtub.”

  I laughed. “That shouldn’t be a problem since I don’t have a bathtub.”

  “Don’t read in the lake either.”

  “Do people actually swim in that lake?”

  “Some do, yes.”

  “What about alligators?”

  “They’ve been known to swim in there also.”

  “Isn’t that, like…super dangerous?”

  “Yes.”

  “I guess people gotta get their kicks somehow.”

  “Indeed.” She opened her desk drawer and pulled out a red spiral notebook. “I’ll give you this to get started,” she said, handing it to me.

  “Thanks.”

  She smiled.

  I gazed down at the shiny new notebook. “Maybe I’ll write a book, and it’ll get published, and someone will want to turn it into a movie, and they’ll ask me to play myself in the movie.”

  “Maybe,” Dr. Rodriguez said.

  “That would be awesome.”

  “It certainly would be,” she said.

  I started writing my book that day and it felt really good to get it all out in words, to see them all there on the lined pages in front of me, so I kept working on it. Even though what had happened to me didn’t make any sense, and I knew there was no real reason for any of it, at least I could put it into sentences and paragraphs that made sense on the page. It was something I could do. Something I had control over. When I filled up the first notebook, I asked Dr. Rodriguez for another one. She pulled her desk drawer open and handed me a new notebook. Same as the last. She didn’t say anything, just smiled at me as if to say, See? I told you so.

  Scott and I were spending a lot of time together, neither one of us talking about the fact that he was leaving at the end of the week. Mostly we hung out by the lake because it was cooler down there and no one was around to bother us. He would read and I’d write in my notebook. One day he asked me to read him what I’d written.

  “No,” I said. “I can’t.”

  “Why not?”

  “I don’t know why,” I said. “I just can’t.”

  “I won’t laugh.”

  I looked down at my notebook. The pages fluttered in the breeze.

  “Unless it’s funny,” he said. “Then I might laugh.”

  “It’s not funny,” I said. “It’s tragic.”

  “Perfect,” he said. “I love tragedies.”

  “I don’t know,” I said.

  “Come on!” He tossed his book aside.

  “I don’t know, Scott. What if—”

  “What do I have to do? Get down on my knees and beg?”

  I looked up. There was a magnolia tree above us, bursting with pink and white flowers. It was so pretty. It smelled like almonds and vanilla. I looked back at Scott.

  He was down on one knee, his hands clasped together. “Please?!”

  “Okay. Fine.” I laughed.

  “Yes! Finally!”

  “From the beginning?”

  “Wherever you want.”

  I flipped back to the first page of my notebook and began to read to him: “They think I got it from an armadillo.”

  He lay back in the grass, folded his hands behind his head and gazed up at the sky. Magnolia petals drifted down around us as I read. At one point, Scott reached up and gently plucked out a petal that had landed in my hair. I looked down at him and smiled. He smiled back.

  “Keep going,” he said. “Don’t stop.”

  I read to him until the dinner bell rang. Then we walked to the mess hall together holding hands.

  “That was really good, Abby. You’re a good writer.”

  “You’re just saying that,” I said.

  “No way. I wouldn’t just say that.”

  “Okay. Well, thanks, I guess.”

  “Maybe if the acting thing doesn’t work out, you could be a writer.”

  “You think?”

  “You could probably get that published, what you’re writing now. It’s a really interesting story.”

  “It’s not a story,” I said. “It’s my life. It’s what happened.”

  He grinned. “Even better.”

  Eventually the day came, Scott’s last day of the Youth Challenge Program. I woke up with a lead weight inside my chest, knowing he was leaving before sunrise the next morning. He had a lot of cadet crap to do that day, closing ceremonies and packing and whatever, so I didn’t see him for more than fifteen minutes all day. It sucked. At dinner he came up behind me in line.

  “Hey,” he said, touching my shoulder.

  I turned around. “Oh. Hey.”

  He leaned toward me. “Leave your door unlocked tonight,” he said in a half-whisper.

  “Okay,” I said, feeling a hot blush rise into my face.

  “Okay.” He smiled. “I have to go now. But I’ll see you later.”

  I nodded.

  That night, Scott snuck out of his barracks and came to my apartment. That’s what I loved most about Scott; he wasn’t afraid of anything.

  “Hey.” He stood just inside my door, silhouetted in the low light.

  “Hey,” I said. I rubbed my eyes, looked at my phone. It was after one in the morning. I lifted the bedcovers and shifted over to make room for him. He slid down his jeans and pulled off his shirt and got into bed beside me. He rolled on his side to face me.

  “Hey,” he said. His eyes shone in the dark.

  “Hey.”

  “Hey,” he said, softly, looking at my lips.

  “Hey,” I whispered.

  We kissed. Then we kissed some more. No one had ever kissed me like that before. I can’t say exactly how it was different. There was…feeling behind it. It was more than just kissing. It was…communicating. At the risk of sounding super cheesy, it was…magical.

  He ran his hands down the length of my body. I liked it, but I was still sore, and I guess he could tell I was uncomfortable. He pulled his face away from mine. “Are you okay?”

  “Yeah. It’s not you…it’s me.”

  He laughed.

  “No, but for real though.”

  “What’s the matter?”

  I moaned and flopped on my back. “I still feel so gross.”

  “You’re not gross, Abby. I promise you. You’re not.” He kissed me on the cheek.

  “Thanks,” I whispered. I could feel tears collecting at the corners of my eyes.

  “Can I just hold you?”

  I nodded.

  “Roll over.”

  So I did. He slipped his arms around me and held me close. I could feel his warmth envelop me. It was the nicest thing I’ve felt.

  “Is this okay?” he said.

  “Yes,” I said. “This is very okay.”

  He closed his hand around mine. “Good.”

  We stayed like that for a while until I was almost asleep. Then Scott said, “Okay, my turn.” And he flipped onto his other side so that I could spoon him.

  I curled my body around his and put my hand on his chest. I could feel his heart beating. It was strong and steady and sounded reassuring. I let out a sigh.

  “What is it?” he said.

  “Nothing. It’s just…”

  “What?”

  “I was just hoping that this isn’t the last time we’ll get to do this.”

  “It won’t be,” he said.

  I could hear him smile in the dark.

  When I op
ened my eyes to the bright light of day, he was gone. His dog-eared copy of Jonathan Livingston Seagull lay on the pillow beside me.

  I turned toward the wall, fighting the wave of misery that threatened to crash over me. I reached for the book. He had written his phone number inside the front cover, an x and his name below. I pressed the book to my chest and stared up at the ceiling, wondering if it was too soon to call him.

  I had to stay at Carville for another month to get my body calmed down from the reaction and make sure everything was back on track. Since Jane and Scott were gone, I ended up writing a lot. I filled three more red notebooks and still had more to say about what it felt like to be a real, live leper. I spent a lot of time in the library. I learned a ton about the other people who had lived (and died) at Carville. Their stories were so, so sad, but reading them made me feel less alone. I was like them; they were like me. I was just lucky to be born when I was, when there was a drug treatment that killed the bacteria. I wouldn’t have to have any limbs amputated, I wouldn’t die as a result of the disease and my family wouldn’t tell people that I had died because they were so ashamed of me. Reading their stories made me feel like I was part of something, and it was something that had been going on for a long, long time. They were brave, all of them. And maybe I was too.

  One of the autobiographies I read was by a man named Stanley Stein. He was a pharmacist who started a newspaper from Carville and advocated for the rights of the patients. He was the person who started the movement to change the name of the disease to Hansen’s disease and to stop using the word leper. There was this one quote in his book that I copied out and taped to my mirror so that I would see it every day. It said:

  It is not what we have lost that matters most, but what we choose to do with what we have left.

  It made sense to me, and I decided to believe in it. Like, instead of getting depressed that I couldn’t cheer anymore and wouldn’t get the scholarship and wouldn’t be able to go to USC for acting, I could get serious about my writing and try to keep getting better at that, and maybe someday someone would want to publish something I had written. It was about not wallowing in the past, but getting on with it and having hope for the future. It wasn’t a religion or anything, but I think Jane would have approved.

  Scott didn’t talk on the phone too much, like he said, but we texted a lot. Pretty much every day. When my eyes got tired and I couldn’t read or write anymore, I played checkers or pool with Barry. He always beat me at checkers and I always beat him at pool. I felt bad about the things I’d thought about Barry when I first got to Carville, because he was actually a real sweetheart. Socially awkward as hell, but sweet. He knew a lot about space and stars and planets and asteroids, that type of stuff. He would always let me know what was going to happen that night in the sky. He called them “celestial events.” It made me feel like I was invited to a fancy party. One day when we were playing pool, I told Barry about the book I was working on, my story.

  “Sounds interesting,” he said.

  “I don’t know if anyone would ever want to read it, or if I could get it published or whatever, but…I think I’d like to try.” I took my shot. The six ball bounced off the corner. Nothing went down.

  Barry looked at me, waiting for more.

  “I found something I actually really like to do. And I think…I mean, I hope, I might even be good at it. Or at least not totally suck at it.”

  “Writing?”

  I nodded.

  “Like, books?”

  “Yeah, I mean, I know I’ll have to work on it for a few years, and it’s not like I know the first thing about how to become a professional writer or what to do when I actually finish it, but, that’s the cool thing, I want to work on it. Even if nothing happens. I mean, if it never gets published or whatever. That’s, like, not the point. The writing itself is the point.”

  Barry nodded slowly.

  “Does that make sense?”

  “Yes,” Barry said. He gazed out the window. “I have a cousin,” Barry said. He took the square of chalk from the edge of the table and ground it into the tip of his cue. He studied me without looking at me. His bug eyes flicking around my hair, my jeans.

  “Yeah…?”

  “Yeah.” Barry set down the chalk and lined up his shot. The ball went in. He lined up for the next shot. He held his tongue between his teeth, concentrating.

  I waited.

  He missed.

  I lined up and sunk the six in the side pocket. “So what about your cousin?” I said.

  “Oh, yeah, well.” He pushed his glasses up on his nose. “She teaches in the creative writing department at Columbia. Maybe she could give you some tips. Point you in the right direction.”

  “Columbia. That’s in New York, right?”

  “Yes.”

  I thought of Jane’s theory about the two kinds of people. Maybe I was a New York person after all.

  “If you want, I could ask her to take a look at your book. Once you’ve finished it and everything.”

  “Seriously? You’d do that for me?”

  “Sure.” He shrugged. “Why not?”

  I took my shot. The seven rocketed into the corner pocket. “That would be awesome,” I said. I smiled at him and shot my next ball. The five went into the side pocket with a clatter.

  “I, for one, can’t wait to read it,” he said.

  “Thanks, Barry.” I gently tapped the eight ball into the side pocket and won the game.

  “Here, I’ll give you my email. And I’ll get in touch with my cousin and let her know you’ll be contacting her.” He took a pencil and a scrap of paper out of his breast pocket and wrote his email address out. He handed me the paper.

  And just like that, I had a plan B. I looked up at Barry, blinking in the light. He smiled sheepishly, scratched the stubble on his chin. I knew that once I left Carville, I wouldn’t be able to judge people based on their looks anymore. I’d learned too much.

  I worked hard at my physical therapy and made sure I was getting lots of rest and good nutrition; I kept writing in my red notebooks, going for walks around the lake, reading, doing schoolwork. I hung out with Barry quite a bit and had tea and cookies with Grace and Lester every Saturday, and then one day, it was my last day at Carville and I was allowed to go home—for good.

  The week I got home, I got a letter from my school that pretty much said that if I wrote my final exams, I was going to pass twelfth grade and I was in good shape to be on the honor roll. Even though I had missed so much school, I had still, inexplicably, done very well. Maybe even better than I would have if I had actually been attending school, since I didn’t get distracted by all the high school drama. I mean, the letter didn’t say that last part, but that’s what I figured. I put the letter down on the table and breathed a sigh of relief. I would tell Mom and Dad when they got home from work and they would be so happy. The sunlight blasted through the kitchen windows and our house was quiet and bright. In a few weeks, I would be walking across the stage to accept a diploma at my graduation ceremony, and, if I wanted to, going to prom.

  My heart fluttered. I didn’t want to think about it for too long because I didn’t want to chicken out. I fired off a text to Scott: Will you go to my prom with me?

  I held my phone and my breath, watching the ellipses appear as he typed his reply.

  As long as I don’t have to wear a baby-blue tux.

  I laughed. Typed: You can wear whatever you want.

  In the weeks leading up to my prom, Scott and I devised an elaborate plan. He would buy (not steal—buy) a car, or maybe a van, with the money he had saved up from his job working construction. Then he would drive down to Texas, come with me to prom, and we would leave the next day to visit Dean and Kyle in San Francisco. We’d take a few days to do the drive, take in the sights, camp along the way, or maybe sleep in the car, depending on what kind of car he got. I was so excited I could barely sleep at night. I studied maps and roadside diners on the Internet and va
guely wondered if I would lose my (born-again) virginity somewhere along the side of the road in California.

  Mom took me shopping for my prom dress and I chose a coral cut-out dress that came to just above the ankle. Coral because, let’s face it, everyone looks good in coral, especially blondes. Cut-out because Jane had said that style would look good on me and, turns out, she was right. It was really elegant; it showed off my neckline and collarbones so I had to find the perfect jewelry to go with it.

  With Dean gone, the house was eerily quiet, and it seemed to stay clean and tidy all on its own. I went in to school to write my final exams but didn’t go back for classes. I didn’t really see the point. I worked on my book instead.

  Although Mom and Dad would never admit it, I think they really missed Dean. And I would never tell him this in a million years, but so did I.

  Dad didn’t seem to know what to do with himself. He was spending a lot of time in the garage. Fiddling with things and fixing things that didn’t necessarily need to be fixed. One night I went out to the garage to visit him. I clutched the gold armadillo coin in my fist.

  “Hey, Dad. How’s it going out here?”

  “Oh, hi, Abby.” He looked up from his workbench where he was gluing a broken picture frame together. “What’s up?”

  “I was wondering if you would be able to make a hole in this.” I held out the coin.

  He took it from me and turned it over and over in the palm of his hand. “This is pretty neat, hey?”

  “Yeah.”

  “Did you get this from…?”

  I nodded.

  “Yeah, I should be able to drill a hole through it, no problem.”

  “Cool. How long do you think it will take?”

  He stood up. “I can do it right now.”

  I watched as he put the coin in his vise and clamped it, then got out his drill and turned it on. The metal shrieked as he drilled into it, but then it was done, it was over. He took the coin out and blew on it, then handed it back to me, smiling. “There you go, sweetie.”