Confessions of a Teenage Leper

by Ashley Little

  I shook my head.

  “Keep the tip!”

  “Dean! You’re disgusting! Stop! Just get out!”

  “You laughed! I saw you laugh a little bit!”

  “Okay. Fine. Whatever. Just leave, alright?”

  His smirk faded. “Alright. I might not see you tomorrow, so I guess I’ll say goodbye now.”

  “Okay.”

  “So…goodbye.” He stood up and looked like he wanted to hug me or pat my back or something. But he couldn’t. He couldn’t bring himself to touch me. I had leprosy. I was untouchable. He folded his arms across his chest and tucked his hands into his armpits. He nodded.

  “Bye, Dean.”

  “Good luck down there.”

  “Thanks.”

  “Maybe when you get back we could take a trip into the city. I was thinking you could help me pick out some things for my new place. You know, like, house stuff that goes together and looks good. You’ve always been good with that interior design crap.”

  “Okay,” I said. “Sure.”

  “Alright then. Well. Good night.”

  “Good night.”

  He closed my door and I was alone.

  The next day, Mom and Dad drove me to the National Hansen’s Disease Clinic at the Ochsner Medical Center in Baton Rouge, Louisiana. My hands vibrated in my lap. I sweat through my T-shirt and my cardigan. I chewed off all my nails. We had to stop four times so I could pee and once so I could throw up. It was the longest seven hours of my life.

  The plan was for me to get checked in at the clinic, do all my tests, take my first round of pills and whatever else they wanted me to do there, then get on the special bus to Carville, the old leper colony, twenty miles away, where I was to stay during my treatment. With other lepers.

  “But if it’s really terrible in there, I can call, and you guys will come get me, right?”

  Mom and Dad glanced at each other.

  “Right?”

  “You have to stay until the drugs take effect, Abby,” Dad said.

  “Says who?”

  “The doctors, the specialists, the government, us.”

  Mom looked back at me.

  “But what if it’s awful and I can’t stand to be there anymore? What am I supposed to do? Run away? Jump into a waterfall so they can’t track me like Harrison Ford in The Fugitive?”

  “No,” Mom said. “You stay. Because that’s the only way you’re going to get better.”

  “But what about…what about…my life?” I stared out the window as we passed another bayou.

  “This is your life, honey,” Dad said. Then he turned up the radio and we listened to some old-timey blues. I watched out the window as swamps took over the land, and nobody said anything for about a hundred miles.

  The people at the clinic were all pretty nice. They didn’t have leprosy. Not the workers anyway. And they didn’t call it leprosy. Not once. Hansen’s disease, they called it. A lady with Harry Potter glasses checked me in and I filled out the forms she gave me. Mom and Dad sat on either side of me in the waiting room, looking awkward. Dad pretended to read email on his phone, and Mom kept asking me questions. How did I feel? Was I too hot? Was I too cold? Was I going to be sick again? Did I think I was going to be sick again? Did I have a headache? A fever? A sore neck? Did I bring my toothbrush? My homework? My bathrobe?

  “Mom,” I said.

  “Yes?”

  “Can we just not talk for a while?”

  “Sure.” She nodded, folded her hands in her lap. “Sure.”

  “Thanks.”

  A short while later, I was called in to see the doctor.

  “Do you want me to come in with you?” Mom asked.

  “Okay,” I said.

  We followed the Harry Potter lady down the hall. She opened the door of a little room for us. “Dr. Mike will be in shortly,” she said.

  Mom and I sat down on the faded pink chairs. There were a couple of old celebrity gossip magazines on a magazine rack. I reached for one, and then pulled my hand back. I didn’t want to touch them. People with leprosy had touched them. I knew I already had it, but I didn’t want to get it worse. Or get it again. Or whatever. Mom looked at me. She moved her mouth into some weird shape, which I guess was supposed to be a smile. Then there was a knock and Dr. Mike came in. He was around forty-five and had salt-and-pepper hair.

  “Abby?” he said.

  “Hi.”

  “Hello, I’m Dr. Mike.” We shook hands. His eyes were the bluest shade of blue I’d ever seen. The kind of blue that pierces right into your heart.

  “I’m Patricia, Abby’s mom.” Mom stuck out her hand to Dr. Mike.

  He shook it and smiled briefly, the edges of his eyes crinkling. Then he washed his hands in the tiny sink, dried them on a paper towel, rolled it into a ball and tossed it into the garbage can. He cleared his throat and sat down across from us. Mom thought he was a babe, I could tell. She was blushing and fiddling with her hair.

  “Abby,” Dr. Mike said, turning back to me.

  “Hi,” I said again.

  He nodded. “Hi.”

  “So…” I said.

  “So. It’s been confirmed that you have Hansen’s disease. I know this must be really difficult news to accept, but you need to know that there is a cure and that your condition has not progressed to the point of permanent disfigurement. However, most of the nerves in your hands and feet have been destroyed and we must consider this to be a permanent disability.”

  I nodded and blinked away tears. Mom reached over and squeezed my hand.

  “If you had been properly diagnosed sooner,” Dr. Mike said, “we could have prevented this much nerve damage from occurring, but there’s no turning back the clock on that.”

  “So what is the cure?” I said.

  “The treatment for Hansen’s disease is a course of MDT, multi-drug therapy. You’ll be on three different medications, starting today. In combination, they work to destroy the bacteria that causes the disease.”

  “Mycobacterium leprae,” I said.

  “Precisely.” Dr. Mike smiled and glanced at Mom.

  “How long will I have to be here?”

  “Well, after a few days of taking the medication, you won’t be contagious anymore, so you’ll be able to go about your normal activities. That’s the good news.”

  “What’s the bad news?” Mom said.

  “Well, some patients do have severe reactions during treatment, so we ask that you stay for at least four weeks so we can monitor your progress.”

  I shot Mom a look. An entire month at a leper colony? He had to be kidding. I laughed a little to show him that I had a sense of humor.

  Dr. Mike smiled at me and continued. “During that time you will be instructed in foot care and hand care, learn how to prevent injuries, and if anything should arise, we’ll be right here to help you through it.”

  He wasn’t kidding.

  “And how long will I be on the medication for?”

  “Twenty-four months.”

  “Two years?!”

  He nodded.

  “I’ll be almost twenty!”

  “That’s still very young, Abby.”

  “No it isn’t!”

  He and Mom smiled weakly at each other.

  “So, what do I…?”

  “You’ll be staying down the road at Carville, and you’ll be bussed here to the clinic five days a week. Here, you’ll work on rehabilitation. Getting strength back into your body. Practicing walking and using your hands and fingers in ways that won’t cause further damage. Dangers to look out for. We’ll get you fitted for orthotics right away.” He glanced down at my feet.

  “What about meals?” Mom asked.

  “There’s a fully staffed kitchen at Carville, so all of your meals will be provided. There are also nursing staff on-site.”

  “And I’ll be living with other…other lepers?”

  “There are two long-term residents at Carville, plus a number of other out-of-tow
n patients like yourself, staying temporarily. You will have a private room. Like a dorm room.” He smiled. Like I was supposed to be excited about that. “There’s something else you should know, Abby.” He cut his eyes at Mom. “The people here at the clinic, and at Carville where you’ll be staying, don’t take kindly to that word. And we certainly never use it here at the clinic.”

  “What word?”

  “Leper. Leprosy.”

  “Huh?” I looked at Mom. She gave me a mini-shrug.

  “Some people find it extremely offensive,” Dr. Mike said.

  “Who does?”

  “People who suffer from Hansen’s disease.”

  “You mean leprosy.”

  “It is now called Hansen’s disease, and those afflicted by it are called Hansen’s disease sufferers or Hansen’s disease patients.”

  “Lepers.”

  “No.”

  “What’s the difference what you call it? It’s still the most disgusting disease known to humankind!” I put my head in my hands, pressed my fingertips into my eyes. I could call myself whatever I wanted, it didn’t change the fact that I was a leper, and in the eyes of my (former) friends and classmates, I always would be.

  “Dr. Rodriguez will talk more about it with you tomorrow,” said Dr. Mike, gently.

  “Who’s that?”

  “She’s the clinic counselor.”

  “Oh.”

  “You’ll meet with her once a week as part of your therapy. More often, if you choose.”

  Mom nodded like this was the best idea she’d heard in ages.

  “Do you have any questions?”

  “How could I have gotten this?”

  Dr. Mike sighed. “Transmission is very difficult to pinpoint. Dr. Rodriguez will talk to you more about how, when and where you might have come into contact with the bacteria.”

  “Am I going to lose my fingers?”

  “Not so long as you’re cautious and you take very good care of them.”

  I nodded, holding back sobs. Mom squeezed my hand again.

  “You’re going to be okay, Abby,” Dr. Mike said. “That’s the good news.”

  “Thank you,” Mom said.

  He smiled without any teeth and then scribbled some stuff down on a chart. My chart. “I’ll see you soon, okay?”

  “Okay,” I whispered.

  Dr. Mike nodded at Mom, then left the room. The door closed behind him with a click.

  I stood up and so did my mom. She put her arms around me. She let me tuck my face into the crook of her neck and I let myself be held. She swayed back and forth, rocking me like I was a baby, and I cried like one.

  Nobody said much on the drive to Carville. We passed miles of brown fields, barren except for the stubble of sugarcane that had already been harvested. A heaviness hung over us, like I was going to prison or something. Even though I knew I hadn’t done anything wrong, I felt guilty. I felt bad. I felt…unwanted in the world. I hoped that Dad wouldn’t cry when they dropped me off. I could handle Mom crying, but something about seeing your dad cry just makes you crumble inside. I don’t know why.

  When we arrived at Carville, we had a guided tour of the grounds and inside some of the buildings. We learned that Carville used to be an old sugar plantation. It’s a ton of land with a bunch of old colonial buildings on it, settled on the banks of the Mississippi River. It was a leprosarium for over a hundred years. Before 1957, everyone in the United States who was discovered to have leprosy had to go there. Even if they didn’t want to. The police would actually arrest them and force them to go. Put them in chains and ship them there in a boxcar. They weren’t allowed to phone their families or have visitors or anything. And if they escaped, the police hunted them down and brought them back. They weren’t allowed to vote. Just because they had a disease. If a woman with leprosy got pregnant, she wasn’t allowed to keep her baby. The doctors back then did all sorts of experiments and research and eventually they actually discovered the cure—sulfone drugs—at Carville.

  “Cell phone drugs?” I said.

  “Sulfone,” said our guide. “With an s.”

  Our guide’s name was Irma. She was the head of public relations at Carville and a former patient. But she didn’t live there anymore. She lived in Baton Rouge with her husband and her five kids and her dog, Beezley, who sometimes came to work with her.

  I half-listened while Irma talked as she showed us around. She didn’t look deformed, except for her hand. The fingers were bent at weird angles, like a claw. But she kept it in her pocket most of the time, so I couldn’t get a real close look.

  Irma told us that in the late 1990s, Carville was a prison for a few years. With real criminals, not just the lepers, and they all lived together. Now, it’s the National Hansen’s Disease Museum and a cadets camp for at-risk youth, a.k.a., juvenile delinquents, run by the military.

  “What kind of, um, supervision will Abby have here?” Dad asked Irma.

  “The cadets are supervised twenty-four hours a day if that’s what you mean,” she said.

  Dad nodded.

  “And Abby will be able to reach me or the other staff on duty at any time, should the need arise.”

  Dad nodded again, then smiled at me awkwardly.

  Irma led us up the stairs of a two-story red brick building. It looked like an old apartment building. There was a row of white doors, and she opened the first one we came to at the top of the stairs. “This is where you’ll be staying while you’re with us, Abby,” she said, and ushered the three of us inside.

  “Wow,” Mom said. “It’s really nice, hey, Abby?”

  Irma beamed.

  “Whatever.”

  Dad cleared his throat and set my luggage down. The suite was nothing to get excited about. It wasn’t exactly what I had hoped my first apartment would be like, if you know what I mean. Since it was in a leper museum. There was a double bed on an old cast-iron frame, a small wooden table and a dresser, and a hot plate, mini-fridge and toaster oven beside a little sink. There was a tiny bathroom that had only a shower, no tub. The suite smelled like mothballs and Comet.

  “There are two other out-of-town patients staying in this building,” Irma said. “I’m sure you’ll meet them soon.”

  “Oh, that will be nice for you to have some people to talk to,” Mom said.

  I glared at her and blinked. She was acting like I was getting dropped off at summer camp, like I was here for fun.

  “Well,” Irma said, “I’ll leave you to say your goodbyes. Dinner is served at six-thirty in the mess hall, Abby. You remember how to get there?”

  “Yeah. I think so.”

  “Just give me a shout if you need anything. I’m in the building next door in the front office.”

  “Okay,” I said. “Thanks.”

  Mom and Dad thanked her and both of them shook her claw-hand, and then she left.

  “Well, Abby,” Dad said.

  “I think it would be easier if you guys left really fast now. Without dragging it out,” I said.

  “Can we at least give you a hug goodbye?” Mom said.

  “You probably shouldn’t,” I said. “You don’t want to get it.”

  “I already hugged you before anyway,” Mom said.

  “I know. But you shouldn’t have then, either.”

  “I don’t care,” she said, coming at me, arms wide. She squished me into her.

  Then Dad came and put his arms around the two of us. We stayed like that for a moment, gently swaying back and forth. Dad kissed me on the top of my head. “Love you, kid.” He barely ever said that, so it was kind of nice to hear it.

  “Me too,” I said.

  Then the hug broke apart and Mom was wiping her eyes with her sleeve. Dad was all welled up, about to spill over.

  “Okay, go on. Get out of here,” I said.

  Mom opened the door. “Love you, Abby. We’ll see you next week for visitor’s day.”

  “Sunday,” I said.

  She nodded. Then, they
were gone.

  I sat down on the bed. I had never been that alone before.

  The bedspread was white and scratchy. The wooden flooring was old and dinged up. I wondered about all the feet that had walked across that floor. Leprous feet. It gave me the heebie-jeebies to think about it. I wished that I had someone to talk to. I really wanted to text Marla and Liz. But I wouldn’t let myself. Not after that kind of betrayal. If people do something like that, they’re not your real friends anyway, so good riddance to bad rubbish.

  I still missed them like crazy though.

  I flopped back on the bed and stared at the ceiling. The ceiling tiles had tiny flecks of gold in them that sparkled when the light hit them just right. I thought about calling Dustin. I was pretty sure I had his number. I looked through the contacts in my phone.

  Yep, I had it.

  My fingers hovered over the screen. Before I could make up my mind whether to call him or not, there was a knock at the door.

  “Um, come in?” I sat up.

  A pretty young woman opened the door. Her black hair was in a cute bob and she wore a cream-colored pencil skirt. “Hey,” she said, “I’m Jane. I’m staying in the room next door.”

  “Oh, hi,” I said. “I’m Abby.”

  She moved to cross the floor and shake my hand, but I got weird about it and shoved my hands in my pockets. I don’t know why I did that. She had leprosy, so what? I had it too. She stepped back. “I just thought I’d introduce myself.” She shrugged. “But if you’re busy—”

  “No, cool. Yeah. Thanks. I mean, it’s nice to meet you.”

  She sniffed the air. “You want to go for a walk or something? Let this place air out a little?”

  I laughed. “Yeah. That’s probably a good idea.” I opened the windows and we left the room.

  Jane was from New York City. She was twenty-seven years old. She’d first been diagnosed when she was eighteen. We walked in the tall grass along the fence line.

  “I come here every year for my complete checkup,” she said. “And to get a refresher in my physio exercises and stuff. It’s been dormant for two years now, but it can come back, so I always make sure to come back to Carville.”

  “It can come back?” I said. “Like, you mean, after it’s cured?”