Confessions of a Teenage Leper Read online

  “Okay, well, get some rest. I’ll see you in the morning.”

  “What time does the bus take us to the clinic again?”

  “Nine a.m. sharp.”

  “Early.”

  “Breakfast is at seven-thirty.”

  “Ugh. I might just grab something to go.”

  “Well, I always say there are two kinds of people,” Jane said.

  “Yeah, you said—”

  “Morning people and night people.”

  “Oh.”

  “I guess we know which category you’re in.”

  “What about afternoon people?”

  “Afternoon people don’t stand a chance.”

  “Huh?”

  “Think about it,” Jane said. “Everything of consequence happens either in the morning or at night. Nothing important ever happens in the afternoon. People take naps in the afternoon.”

  “The afternoon is Austin,” I said.

  “Exactly.”

  “Okay, well, I guess I’ll see you in the morning,” I said.

  “Good night, hon.”

  “Night, Jane.”

  Even though I was super tired, I didn’t think I’d be able to sleep. The bed was like a cement platform and the blanket was like a burlap sack. I tossed and turned for what felt like hours. I couldn’t get comfortable. I realized that I might never be comfortable again. There are those Buddhist sayings, “All life is pain. Life is suffering.” I’d never paid much attention to them before. But what if they were actually right? People say life is short. But what if they’re wrong? What if the truth is, life is really, really long? Excruciatingly long. Then what?

  When I stepped out of my apartment the next morning, I was met by a yellow wall of fur. This scrawny yellow Lab swarmed my legs, jumping up to lick my face and barking in a friendly, needy way.

  “Hey, buddy,” I said, kneeling down to pet him. He went crazy, panting and pawing my thighs and trying to lick my face. I laughed, pushing his head away.

  “I’m sorry! I’m so sorry!” Irma ran out of her office, waving her arms, yelling. “Beezley, get down here! You git! You no-good, filthy animal!”

  “It’s okay,” I called to her. Beezley nuzzled my neck. “It’s actually kind of nice,” I said quietly. I petted Beezley some more and then stood up and started to climb down the steps. Beezley followed me every step of the way until we were down on the ground, and then Irma grabbed his collar.

  “I’m so sorry. I don’t know what’s gotten into him. He isn’t usually like this.”

  “It’s alright,” I said.

  She scolded him and he wagged his tail, panting and grinning.

  “Did you sleep okay?” Irma asked.

  “Yeah,” I lied. “Pretty good.”

  “Anything you need?”

  A new face. A new body, I thought. A dog who will love me when humans no longer can. “No,” I said. “I’m okay.”

  “Okay, well, just let us know if you think of anything,” Irma said.

  “Thanks,” I said. “Will do.”

  Beezley’s tail slapped against her leg as she dragged him back toward her office.

  I gazed after them for a moment, then made my way toward the mess hall for breakfast.

  My first day of therapy at the clinic went pretty much as you’d expect. I got fitted for orthotics and was told by Charlotte, the physiotherapist, that I should wear them all the time inside the special support shoes they gave me. The shoes were brown and shaped like livers and literally the ugliest footwear in existence.

  “So, you’re saying I have to wear these all the time?”

  “All the time.”

  “What about at the beach?”

  “Definitely at the beach.”

  “What about when I want to wear heels?”

  “You shouldn’t ever be wearing heels, Abby.”

  “But…I’m…I have to.”

  “Why do you have to?”

  “Because. I’m seventeen.”

  “Look. This is what happens to people with nerve damage in their feet and ankles like you have. They step off a curb the wrong way and break their ankle, but because there’s no sensation, they don’t feel it. They don’t know they’re injured. And so they keep walking on the joint, doing more and more damage to it. In some cases, it gets so bad that the foot needs to be amputated.”

  “Ugh!”

  “That’s right. See, that’s what most people don’t realize about the effects of Hansen’s disease. It’s not the disease itself that causes people to lose digits and limbs, it’s the absence of sensation that’s the most dangerous.”

  “Pain,” I said.

  “Yes! Pain! Pain is a great gift. Healthy bodies experience pain. Pain keeps us safe.”

  “I have pain.”

  “I know you do, Abby,” she said gently.

  “Just not in my feet and hands.”

  She nodded. “That’s why you have to be so careful to protect them and keep them out of harm’s way. These shoes are one way of doing that.”

  I knew I would still wear my flip-flops at the beach. I knew I would still wear heels to dress up. But I just nodded and said okay because I knew that Charlotte was trying to help me, and that’s what she wanted to hear. We talked about ways to protect my hands and fingers. Like don’t stick them into boiling water (duh!); be extra-vigilant when using scissors, knives, and sharp tools; wear mittens and gloves in the fall, winter, and early spring, even if you don’t think it’s cold, even if you think you don’t need to. Frostbite is the number one reason people with the disease lose fingers.

  She gave me a stress ball with a yellow happy face on it and had me squeeze it twenty-five times with each hand. I was supposed to do that four times a day. Then Charlotte wrapped both my feet and hands in hot, white towels and gave them all a little massage. It was no Pink Orchid Day Spa, but it felt pretty nice.

  “Thanks,” I said when she was finished.

  “You’re welcome. I’ll just let you rest here for a few minutes.”

  “Okay,” I said.

  She dimmed the lights as she left the room and I dozed off. I don’t know how long I was out for. The next thing I knew, a short, round woman was knocking on the wall beside my head.

  “What? Oh. Sorry. I—”

  “Abby?”

  “Yes?”

  “I’m Dr. Gabriella Rodriguez.” She extended her hand and I unwrapped the towel from mine and we shook. Her nails were painted green and she wore chunky silver and turquoise rings on each of her fingers.

  “Hi,” I said.

  “I’ll be your counselor while you’re here.”

  “Okay.”

  “Would you like to step into my office?” It was one of those questions that’s not really a question at all. Adults are always pulling stunts like that. Pretending you have a choice when you actually don’t. Giving you a false sense of power so you’re not crushed by the reality of your situation.

  “Uh, sure,” I said. I unwrapped the rest of the towels and followed her down the narrow hallway into a tiny office. It seemed more like a storage closet than an office. There were no windows. Just a bunch of those cheesy motivational posters that all the school counselors have. A poster of a guy climbing a mountain that said, “Go for the Summit!” A poster of a runner breaking through a finish-line ribbon that said, “Success Is Never Giving Up!” I thought these posters were cruel and totally inappropriate for Dr. Rodriguez to have in her office, considering that people with leprosy would probably never run a marathon or climb a mountain or do any of the other junk in the pictures, like fly in a rocket ship (“Reach for the Stars!”) or become a professional figure skater (“Live Your Dreams!”). I positioned myself in the chair so I wouldn’t have to look at them.

  “Would you like a glass of water or anything?” she asked.

  “A double shot of your best bourbon.”

  She raised an eyebrow, unimpressed.

  “Hehe. Just kidding,” I said.

  “
Umhm.”

  I crossed and uncrossed my legs.

  “So, Abby,” Dr. Rodriguez said. “How are you feeling?”

  “How am I feeling? Really?”

  She spread her arms as if to say, bring it on.

  “I’m a teenage leper. I mean, does it get any worse than that?”

  “Hansen’s disease patient,” she corrected.

  “You know, I really don’t see what difference it makes what you call it. Changing the name of it doesn’t make it any easier. It doesn’t make it go away.”

  Dr. Rodriguez sighed. “The word leper has a long, awful history, Abby. Think about that word; it’s a noun.”

  What was this, English class?

  “Yeah…?”

  “So it objectifies people. It labels them as their disease instead of a person suffering from a disease. They become identified as nothing more than the disease. Think about it. We don’t call people who have chicken pox ‘chicken poxers.’ We don’t call people living with HIV ‘HIVers.’ They’re people first. The word leper robs Hansen’s disease sufferers of their identity. Someone might be a mother, a wife, a knitter, a golfer, an astronaut, a dog-lover, but if we call her a leper, we reduce her to just that one thing.”

  “Exactly,” I said. “It takes over. It trumps all the other things.”

  “Not necessarily.”

  “You know what? I have the disease, okay. You don’t. I think that gives me the right to call it whatever I want. If I want to call myself a leper, that’s my business.”

  “Fine.” She folded her hands together. “But please know that the L-word is not used here in the clinic or at Carville. And if you do use it, people will be deeply, deeply offended and hurt.”

  “Okay. I get it.”

  “Alright. So, Abby.” She reached for a pen and piece of paper and slid them across her desk to me. “I’d like you to make me a list.”

  “Uh. What kind of list?”

  “A list of all the emotions you’ve experienced since you were first diagnosed with Hansen’s disease.”

  “Oh boy.”

  She slid across the entire stack of paper. “Use as much as you want,” she said. “I’m just going to refill my coffee, and I’ll be back in a few minutes. Don’t worry if you’re not finished by then. Take as much time as you need.”

  “Okay,” I said.

  “Good.” She moved toward the door.

  “Dr. Rodriguez?”

  “Yes, Abby?”

  “Would you bring me a coffee too, please?”

  “How do you take it?”

  “Lots of cream, lots of sugar.”

  “You got it.”

  Then she was gone, and I was left staring at the blank sheet of paper in front of me.

  I sat for a minute, not writing anything. I reached across the desk and took a red Sharpie out of Dr. Rodriguez’s pencil cup. I clicked the lid on and off for a while. Then I started writing.

  This is what my list looked like:

  My Emotions after Diagnosis

  - shock - grief - GROSS

  - anger - depression - hopeless

  - RAGE - helplessness - failure at life

  - why me? - mad - rejected

  - unfairness injustice - UNCLEAN! - heartbroken

  - SCARED! - wanting to die - WHY???!!!

  - fear - HORROR - afraid

  - hate everyone - sadness - disgust

  When Dr. Rodriguez returned, I was staring at the poster of the rocket ship, wishing I was on it, going to another planet, living a different life, any other life but mine. I wouldn’t even mind having another disease. Gonorrhea, maybe. Or some form of non-fatal cancer, even. Just not leprosy. Anything but leprosy.

  She placed my coffee in front of me.

  “Thanks,” I said. Steam rose from the mug. The mug had a rainbow on it and said “Where there’s rain, there are rainbows.” I wanted to throw it against the wall and see it shatter into Skittles.

  “May I?” Dr. Rodriguez reached for my list.

  I nodded.

  She peeled it off the desk and sat down heavily in her chair. I watched her face as she read through it. She was half-smiling, which I didn’t think was very respectful since none of it was funny. She placed the sheet of paper between us and looked up at me. “I want to tell you that all of these emotions are completely normal and valid.”

  “Okay.”

  “Would you like to talk about any of them?”

  “Not really.”

  “What would you like to talk about?”

  “I don’t know.”

  “Anything at all. Doesn’t have to relate to Hansen’s disease.”

  “Why did this happen to me?” I burst out crying.

  I guess making a list of intense emotions somehow unlocks them. Tricky, Rodriguez. Real tricky.

  She pushed a box of Kleenex across the desk and I grabbed a handful. I wiped my face and blew my nose. Dr. Rodriguez cleared her throat. “Have you ever come into contact with a nine-banded armadillo?”

  “What? That’s a joke, right?”

  “I’m afraid not.”

  She explained that about a third of new cases of Hansen’s disease in the United States, the cases where people hadn’t contracted it from somewhere abroad, occur in Texas, Florida and Louisiana. They think because those states have a high population of armadillos. And, like I told you before, armadillos can transmit the disease to humans (and vice versa).

  I sifted through all of my memories. I’d seen them dead on the side of the road lots of times, but I couldn’t remember ever touching one. I knew kids at school made fun of people who ate them. Rednecks ate them. Had I ever eaten armadillo meat?

  My heart seized, remembering the church barbecue. “Oh, God!”

  Dr. Rodriguez nodded slowly.

  “I might have eaten one. But that was ages ago! I was only nine or ten.”

  She nodded. “Hansen’s disease has a very long incubation period. Typically, five to twenty years.”

  I stared at her. She blinked, meeting my gaze. This was all real and no one was joking. That was the unbelievable part.

  “FML,” I said.

  “Pardon me?”

  “I want to see a lawyer,” I said.

  “Why is that?”

  “I want to sue the church for damages.”

  “That’s an understandable response, Abby. However, I have to say, there would be no way to prove that you did indeed contract the disease that day.”

  “It had to be that day. I’ve had no other contact with an armadillo. I’ve never met another person with lep—, uh, Hansen’s disease.”

  “You could have met someone with an active case and not have known it.”

  “But—”

  “Abby. The important thing now is for you to focus on your rehabilitation and recovery.”

  “But—”

  “While it’s a perfectly legitimate response for you to be angry and want to seek retribution, I don’t think getting involved in a legal battle against the church is going to do us any good at this point.”

  “Us?” Why was she saying us? It was me who had leprosy. Not us.

  “I’m part of your recovery team, Abby. Everyone on staff here is. You’re not alone in this, okay?”

  “Whatever.”

  She sighed. “You’re not going to believe me right now, and I don’t blame you, but you are going to be alright. You’re going to survive this and you’re going to be stronger for it.”

  “Yeah? Well, what if I don’t want to be stronger? What if I want to go back to being a little weakling? A little weakling who didn’t have leprosy.”

  “Unfortunately, that’s not really an option, is it?”

  “No mulligans,” I mumbled.

  Dr. Rodriguez brightened. “Are you a golfer? There’s a beautiful course at Carville.”

  I folded my arms and put my head down on her desk and cried. Fucking armadillos.

  At dinner I sat at the reserved table again with Jane, Grace, L
ester and the other temporary resident, Barry, who was a fat, balding man with orange plastic glasses that made his eyes look like enormous beetles. He was one of those men who could be twenty-five or forty-five, but it was difficult to tell. Life hadn’t been easy on him, that much was clear. I mean, obviously. He was here. He kept his hands in his pockets most of the time, but I saw them when he ate, and they were mitten-hands: normal thumbs with stubby fingers. Lester tried to engage him in conversation, but he only grunted and shoveled forkfuls of food into his mouth. You’d think he had gone weeks without eating, the way he pounded it. It was spaghetti Bolognese and watching the red sauce dribble down Barry’s double chin was making me lose my appetite. Sure, he couldn’t help having leprosy, I could forgive him that, but couldn’t he at least have table manners? His BO wafted across the table. I put my head down and wished to be anywhere but here.

  Jane elbowed me in the ribs and I looked up. My cadet was walking by. He looked right at me and smiled. I smiled back and he smiled bigger. Maybe there was some of the old me left after all. The girl who could turn heads, the girl who could capably flirt, before she turned into a social pariah, a horror show.

  Then his buddies at another table called to him. That’s how I learned his name: Scott. He nodded to his friends and went to join them. Jane whistled low through her teeth. “Somebody’s got it bad,” she said.

  I didn’t say anything. I concentrated on trying not to blush.

  “You have to find a way to talk to him,” Jane said.

  “No.” I shook my head.

  “Yes.” She nodded.

  “Why would he want to talk to me? I mean, bad acne is one thing, but this?” I pointed to my puffy, bumpy pizza face. “This is on a whole new level.”

  “Yeah, but maybe he also knows that you’re going to recover and that you’re probably not contagious anymore. Maybe he’s forward thinking.”

  “I thought I was still contagious for another week,” I said.

  “You’re missing my point.”

  “What is your point?”

  “My point is that you have to talk to that hottie!” She slapped my arm playfully.

  “There’s no point.” I turned back to my spaghetti. “He’s probably just taking the piss.”

  “Huh?”

  “You know, making fun. Pretending to flirt with me to make his friends laugh. Besides, he’s a criminal. Isn’t that the reason these guys are here? To keep them out of juvie?”