Confessions of a Teenage Leper Read online

  “Maybe there’s more than one reason,” Jane said.

  “Can you name one?”

  “Well, I think it’s made me more compassionate toward other people, for sure. When before I’d just be, like, whatever, not my problem, now I feel like I can actually empathize with people who are sick or injured or have experienced a profound loss.”

  “Big deal,” I said. “What does compassion get you? A bleeding heart, that’s all.”

  “It’s about becoming more fully human, Abby.”

  “Look at me.” I spread my arms. “I’m already a human. I’m not going to get any more human than this.”

  “You know that’s not what I mean.”

  “Actually, I don’t. I don’t know what you mean at all.”

  “Look,” Jane said. “All I’m saying is, we got Hansen’s disease for a reason. Now it’s up to us to figure out the reason.”

  “There is no reason, Jane! It was just a freak thing. It was being in the wrong place at the wrong time and being in the five percent of the population that’s not immune to the bacteria!”

  She shook her head sadly.

  “The only reason you’re saying there has to be a reason for it is because it’s easier to think that. It’s more comforting to think that it’s all part of a greater plan that all makes sense to someone, somewhere, because it sure as shit doesn’t make any sense when you’re living it.”

  “What do you want, Abby?”

  “I want…I want to be allowed to be mad. And sad. And frigging…devastated. This is the worst thing that’s ever happened to me, okay? And it doesn’t help me feel better for you to say that it happened for a reason. That’s, like, the opposite of helping me.”

  “Okay…”

  “Okay?”

  “I won’t say it anymore if you don’t want me to.”

  “I don’t!”

  “Are you talking to Rodriguez today?”

  “I don’t know.”

  “Might be a good idea.” Jane finished the last sip of her coffee and collected her dishes. “I’ll see you later, alright?”

  I nodded as she left me alone at the table, staring into the abyss of my oatmeal.

  With a morning like that, there’s not much hope for the rest of the day. It was Saturday so there was no bus to the clinic in Baton Rouge. I was trapped inside the 336 acres that was the National Hansen’s Disease Museum, a.k.a., Carville. Which, did I mention? Was ACTUALLY a prison in the late 1990s. I was irritable and restless. I wanted OUT! I wanted to go shopping, see my friends, go to a party. But I couldn’t do anything. Because I was a leper.

  Scott wasn’t even around for me to have someone to talk to. The cadets had gone on a day trip to go feed orphans or something. I don’t know. They were all gone and the place was eerily quiet and empty without their green and khaki-ness filling it up. Dr. Rodriguez would come up to Carville to counsel us, but we had to book the appointment in advance, and I hadn’t. I was so desperate for something to do that I actually did schoolwork. I wasn’t sure if I was even going to pass my senior year or not, but I figured I might as well try. I had brought all my textbooks with me and a few assignments that had no real deadline. I was planning on taking my final exams, even if I had to do them from a hospital bed. High school is the kind of thing you only want to have to do once. Although, if Jane was right, I’d be doing it over and over again for the rest of my life.

  I got through two chapters of my math textbook, had a long nap, and then woke up and finished one assignment for English. It was dinnertime by then, but I didn’t feel like eating. I wanted to go to sleep so I could wake up to a new day and leave this one behind me.

  Sometimes I wake up in a bad mood and it just gets worse and worse as the day goes on. I don’t know why. It happened to me before I got leprosy too, obviously. But the bad moods seemed worse now that I was living with the black cloud of Hansen’s disease dumping a shit-storm on my head day in and day out. Like now when I was in a bad mood, it was really bad. I knew I was a total hag to be around. And no amount of chocolate or ice cream or America’s Next Top Model could shake me out of it. All I could do was go to bed and hope that when I woke up in the morning I would discover that it had all been a terrible dream. That I was still healthy. That I was still beautiful. That I had never heard of Hansen’s disease. Or sulfone therapy. Or Carville, Louisiana.

  But that morning never came.

  The next day was Sunday. Visitor’s day. I don’t think I’ve ever been so excited to see my parents. I cleaned my room, dressed up and did my hair in a French braid. When I opened the door to air out my room, Jane passed by. She wore a purple dress and gold sparkly sandals.

  “Hey, Abby.”

  “Hey, Jane.”

  We stared at each other in the white sunlight.

  “Look,” I said. “I’m sorry about yesterday. I was…”

  She waved my words away. “You could be right,” she said. “It is easier to believe that there’s somebody who has a plan. Somebody who knows what’s going on with everything. With everybody.”

  I nodded.

  “Because I sure as hell don’t!”

  We laughed.

  “It might be easier,” she said. “But it’s what I believe.”

  “Fair enough,” I said.

  She looked me up and down. “You going to church?” she said.

  “Me? No.”

  “How come you’re all dressed up then?”

  “My parents are coming.”

  “Aw, that’s cute.”

  I shrugged.

  “Okay. I’m going to talk to God,” Jane said. “See you later.”

  “Put in a good word for me.”

  She winked at me, gave me a little finger-wave, then clacked down the stairs, the skirt of her dress flouncing as she went. Then Barry came out of his room, which was next to Jane’s. He wore a white T-shirt with a pink stain over the left nipple and gray sweatpants.

  “Hi, Barry,” I said.

  “Good morning, Abigail,” he said.

  I snorted a bit.

  Barry looked at me.

  “No, it’s nothing,” I said, waving my hand. “It’s just that no one has called me that in a long time,” I said. “Sometimes I forget that’s even my name.”

  “I know what you mean,” he said.

  I stared at him. The sun bounced off his bald spot and his glasses were dirty.

  “Barry isn’t my given name either. It’s a short form,” he said.

  “What’s it short for?”

  He swallowed. “Bartholomew,” he said.

  I nodded. “Well, then, good morning, Bartholomew.”

  A smile flickered on his face for a moment and for a split second, I could almost see what he had looked like as a little boy. He nodded and passed by me, taking the steps slowly and deliberately, the way we’d been taught, holding onto the handrail with his mitten-hand.

  I figured that Barry was one of those people who knew there was no reason for anything, and the unbearable desperation of that knowledge had taken its toll. For some reason I got the impression that getting Hansen’s disease wasn’t the worst thing that had ever happened to Barry. He had given up hope long ago.

  I turned away from him and looked out over the field. Three people approached. I knew them by the way they walked. Mom and Dad had brought Dean with them, as a surprise, I guess. And I can tell you this for sure, I had never been so excited to see Dean before. I ran to them and hugged Dean first.

  “Um,” he said, putting his arms around me woodenly. “Hi.”

  “Dean! It’s okay! I’m not contagious anymore! I’m on the cell-phone drugs, see.”

  “Okay,” he said, half-chuckling. “Good to know.”

  I hugged Mom and Dad and thanked them for coming and told them how glad I was that they had made the trip.

  “We drove up yesterday,” Dad said. “So we could spend the whole day with you today.”

  I hugged him again, my eyes filling with tears.
r />   When you’re seventeen, your parents can annoy the living buck out of you. But, if I’m honest with myself, they really are the best. They’re the only people you can count on to stick by you when things go sideways. And even though you treat them like sub-humans 90 percent of the time, they’ll still show up early on visitor’s day.

  I don’t remember too much about what we said or did that day. We walked around a lot. It was a nice day. The sky was clear and blue. I was feeling pretty good. I showed them the hole in the fence. Dean was unusually quiet and didn’t even say anything jerky. Probably because Mom and Dad had threatened to run him over on the way out of the parking lot if he did.

  We all had lunch together in the mess hall. Mom and Dad and Dean sat at the reserved table with me, Jane, Grace, Lester and Barry. It was like my real family and my leper family all dining together. Scott looked over at us, gave me a big smile and waved. I waved back.

  Dean followed my gaze. “That your boyfriend?”

  I shrugged. “Maybe one day.”

  “Hm,” he said. “Cute.”

  I grinned. Mom looked sidelong at Dean. Dad was in conversation with Lester so I don’t think he heard.

  “What’s going on at school?” I said.

  “The usual BS,” Dean said. He took a bite of his sandwich. “Carrie Nelson’s pregnant.”

  “No!” I choked a little bit on my apple.

  “Yup.”

  “Holy crap! Is it…Jude’s?”

  “Presumably.”

  “Whoa. Is she going to keep it?”

  “I don’t know.”

  “Shiiit.”

  “Your old buddy Liz is dating that weird skater guy.”

  “Nate Russell?”

  “I guess.” Dean chewed his sandwich, talking out of the side of his mouth. “She’s gone kind of freaky too. Dyed her hair black and wears ripped-up clothes with safety pins stuck everywhere.” He took a sip of his milk. “She looks alright, though. If you like voodoo dolls.”

  “What about Marla?”

  “Same.”

  I nodded. “Has anyone asked about me?”

  “Yeah, a few people.”

  I stared at him.

  “Oh, who?”

  “Yeah…”

  “Um, let’s see. That kid who lives near us…”

  “Dustin?”

  “Yeah. Him.”

  “Who else?”

  “Uh…Coach Clayton. Let’s see. Um, Aaron asked about you.”

  “That’s it?”

  “Yeah. Well, Rihanna Pilansky was there when Coach Clayton asked, but she didn’t ask about you herself, so, I don’t think she counted.”

  “Okay.”

  I didn’t know whether to be happy that Dustin had asked about me or depressed because Marla and Liz hadn’t. I was feeling both things at the same time. “And what did you tell them?”

  “That you’re sick and you’ve gone out of state for treatment.” Dean shrugged.

  “And do they…do they know what I’m sick with?”

  He shook his head. “I haven’t told anybody.”

  “Not even Aaron.”

  “Nope.”

  “Thanks,” I said.

  “You’re welcome.”

  It was maybe the nicest thing Dean had ever done for me, not telling. I knew that it might get out eventually, but for now, no one outside my family knew, and I was comforted by that.

  Grace and Lester and Jane said their goodbyes and nice-to-meet-yous and left the table. Barry nodded and shuffled off, back to his own private hell. But the four of us stayed at the table because Mom was still eating. My mom is the slowest eater in Texas and maybe even the whole world.

  “Auntie Karen says hi,” Dad said.

  “Oh, thanks. Hi back.”

  “She wanted to send you some peanut butter brownies, but we didn’t know if they allowed outside food in.”

  “Wait. Does Auntie Karen know why I’m here?”

  Mom and Dad looked at each other.

  I groaned. “She does, doesn’t she?”

  “We had to tell her, honey,” Mom said. “She’s our family. She cares about you.”

  “Who else did you tell?”

  “That’s it,” Dad said. “The only people who know are us and Auntie Karen. And your doctors. But that’s all.”

  “Swear to me you won’t tell anyone else. Please.”

  “We won’t,” said Mom. “But you don’t need to be ashamed, Abby. It’s just a bacteria. You didn’t do anything wrong. This could happen to anyone.”

  “Yeah. It happened to me. And I don’t want to advertise it, okay?”

  Mom wrinkled her eyebrows at me.

  “Please, Mom!”

  Dad squeezed her shoulder.

  “Okay.” She sighed. “Whatever you want.”

  “No one. Not a living soul.”

  “It’s our secret, Abby. You don’t have to worry about that,” Dad said.

  “You especially.” I pointed at Dean.

  He put his hands up.

  “Swear on your life,” I said.

  “I swear on my life,” he said. “I won’t tell anyone you’re a leper.”

  “Hansen’s disease patient,” I said.

  “Same thing.”

  “No, it’s not.”

  It wasn’t the same thing, I realized. It wasn’t the same at all.

  After lunch, we played bocce with an ancient set that had probably been there since Grace and Lester’s early days. We all goofed around except for Mom, because she gets so serious about games and has to win everything.

  “I really want to come home next weekend,” I said as they walked me back to my apartment.

  “We know you do, sweetie. But you have to stay here until the four weeks are over,” Mom said.

  “Just for a visit. Not to stay.”

  “Oh,” Mom said. She looked at Dad.

  “I really miss you guys,” I said. “And there are some things I need to take care of. With school. And cheerleading.”

  “I don’t think you’ll be doing cheer anymore, honey, I’m sorry to say,” Dad said.

  I explained to them about the USC scholarship. How getting it depended on my officially being part of the team. “Even if they could make me an assistant, a water girl, a mascot, anything, I’d still have a shot at USC for the fall.”

  Mom and Dad looked at each other, wary.

  “Please,” I said. “I have to try. And I have to speak to Coach Clayton about it in person.”

  “Abby,” Dad said. “You have a very serious illness.”

  “I know that, Dad.”

  “Your health is the number one priority right now.”

  “But—”

  “Not high school graduation. Not this USC scholarship. And certainly not cheerleading.”

  “But—”

  “We have to face the fact that you may not even graduate this year, Abby,” Mom said gently.

  “But I have to try.”

  Mom and Dad looked at each other. Dean stared at his shoes, smudging the toe of one with the other foot. “She’s right,” Dean said, looking up. “You have to at least let her try.”

  Dad sighed.

  “We’ll have to get the okay from Dr. Mike first,” Mom said.

  “Of course.”

  “And you need to be home resting. Not going out with your friends all weekend.”

  “Oh, thank you, thank you, thank you!” I gave them both hugs around the neck and gave Dean a little thumbs-up. As nasty as he could be sometimes, he was there for me, my brother. When I needed him most, he had my back.

  My family left not long after that to do the long drive home. Mom had brought me more homework assignments and a Shopaholic novel she had picked out for me from the used bookstore in our neighborhood, plus a new tube of lip gloss and a little bottle of pink nail polish, which meant more to me than she’ll ever know.

  I could get used to feeling weak and I could get used to the numbness in my hands and feet, but the
thing that I hadn’t gotten used to, and maybe never would, was not feeling pretty anymore. Maybe you think that’s incredibly vain, fine. But when your total net worth, I mean all of your social currency, is wrapped up in your appearance, the things it can get you, the things it can do for you, and then you lose that, what have you got? Buck-all, that’s what. Zero, zilch, nada. You’re ugly, worthless and desperate, just like the freaks and fatties at school that you used to make fun of, only they never had it in the first place so they don’t know how much it kills to lose it. And you wonder how you could have been such an unbelievable asshole to them just because of how they looked. On top of everything else, being on the other side makes you think about who you really were before. And let’s just say, I was not a good Samaritan.

  On Monday morning when the bus arrived at the clinic, the first thing I did was book an appointment with Dr. Mike so I could get permission to go home for the weekend. When I saw him the following day he said he’d already talked to my mom and it should be fine as long as I took it easy and didn’t forget to take the pills and keep up with my exercises. I thanked him and went out into the hallway to call Mom at work. She’d already booked my Greyhound ticket. I would leave Friday afternoon at 4:00 p.m. from the bus depot in Baton Rouge and get in around midnight. The bus back to Carville left Sunday at noon. It was a lot of riding the bus for a short amount of time at home, but I didn’t care. I wanted out of Carville. Even if it was only for one day. Sometime Saturday or Sunday morning, I had to talk to Coach Clayton. I thanked my mom and told her I loved her and hung up.

  My second week at Carville went by slower than the first. There was more physio: picking up towels with my toes, rolling out my feet on a foam roller, squeezing the stress ball until I wore the mouth off the happy face.

  On Wednesday, I met with Dr. Rodriguez again. This time, she wanted to talk about the future. My future.

  “I don’t know what to tell you,” I said. “It’s all up in the air right now.”

  “Ideally,” she said. “What would you like to see happen?”

  I thought for a minute while I stared at the rocket-ship poster. “I’d like to go back in time and not eat armadillo meat,” I said.

  “We can’t go back, Abby. Only forward.”