Dwarf: A Memoir

by Tiffanie Didonato

  We put the new bed beside my big picture window. From there, I could see the faint tip of Mount Wachusett crest above the trees, and Marlborough High School poke through the frozen branches across the street. I felt renewed. But still, I couldn’t sleep soundly through the night. It was only a matter of time before my homeschooling began to suffer.

  It was sleeting when I first met Richard, my tutor. At least, I thought that was his name. I was distracted by my clogged ears (another side effect of the pain meds) when he introduced himself. I was also struck by his brooding look and his slick black hair, doused in gel. He was in his twenties and seemed like he belonged in a coffee shop with his goatee, heavy tweed winter coat, and maroon scarf around his neck. Richard came prepared to work, but I don’t think he was prepared for me.

  I sat in the blue recliner and stared blankly out the window, still somewhere between sleep and the pain medicine lull. No matter how hard Richard worked, I could barely concentrate. High school algebra may as well have been quantum physics as I strained to focus on the equations he wrote out on the dry-erase board Mom had picked up from Walmart.

  Our sessions lasted no longer than twenty-five minutes.

  “Is it possible you can come later than seven thirty tomorrow?” Mom asked. “Tiffanie’s medication takes the pain away for a while, but it doesn’t make her comfortable enough to sleep solidly, so it would help if she got up a bit later.”

  “I can’t,” Richard said. “I have other appointments.”

  “All right. Tomorrow will be better,” Mom assured him. “It will become easier with time.” She hoped this would turn out to be true.

  I hoped to wean myself off of the pain pills entirely but I needed relief. The skin around the wires in my feet was tearing with every inch I gained. The tendons and muscles in my calves grew tighter, making my skin look shiny and lacquered. My body was struggling to keep up. So Dad and I came up with one more MacGyver-esque fix for the skin ripping on my feet.

  “Duct tape fixes everything,” he told me, sticking pieces of tape to the tops of my feet and pulling my skin toward the wires to counteract the tearing. “There we go, how’s that?” He rubbed the tape into place.

  It brought me back to being a little girl the first time I’d gone through a lengthening procedure. With newly taped feet, I celebrated being well on my way to my fourth new inch.

  Every day, right on time at seven thirty a.m., Richard returned, armed with euphemisms that drove me crazy. The poor guy didn’t know what he had gotten himself into.

  “This one has some meat on it,” he said one morning, circling a difficult math equation with a red marker. My stomach churned at the thought of carcass scraps hanging off the edge of the whiteboard. “But this one,” he said about a problem that was easier, “this one is cake.”

  In the kitchen, Mom was baking again and the sugary smell grew sickeningly sweet when it reached the living room. My stomach felt like it was turning somersaults around my Vicodin until, inevitably, the images of frosting-covered meat chunks pushed me over the edge.

  I vomited in my chair.

  With that, my lesson was done, and so was Richard.

  Tom, my physical therapist, came nearly every afternoon during the week. Armed with folders and a range of motion-measuring devices, he also arrived with plenty of skepticism, criticism, and doubt.

  “When are you going to stop lengthening?” he’d ask every day. The more my toes curled toward the ground as I turned my pins, the more nervous he became. “I think you’ve done enough,” he’d say. “You should stop.”

  “It’s fine, Tom,” I replied every time. “They don’t hurt. The more I move around with my walker, the more my toes will stretch in the opposite direction.” At this point, I was slowly but surely approaching five inches. I felt excited and accomplished, and his words gnawed at my resolve.

  I dealt with his concerned warnings as best I could, but it felt like Tom was directly challenging my future and my need for independence.

  “You can’t go much more,” he’d say in a singsongy voice that infuriated me.

  He loved to use one of the words I’d grown to hate. Can’t. How could he tell me I can’t do things, especially now? I had reached a big milestone! In any other situation, with any other doctor, my pins would have been long removed. But I was still lengthening. Tom didn’t understand what it was like to be in my (orthopedic) shoes. He would never get the world I lived in or the hell I would suffer without the lengthening surgeries. How could he say he was there to help me progress if he didn’t even try to understand me or where I was coming from?

  One day, I snapped.

  “They’re toes, Tom, get over it!” I shouted, making him jump. “You’re not my father; you’re not even my friend! I will stop when I feel the need to stop. So please, just do your job and keep your opinions to yourself.”

  For a while, my little outburst had done its job, and that March, I had peace. But then the nagging began all over again, and Tom’s fondness for the word “can’t” returned.

  “This isn’t working,” I said during one of our routine transfers from one chair to another.

  “What’s not working?” he asked, confused.

  “You. I’m done.”

  Tom’s cheeks grew red and his jaw dropped. He went into the kitchen and brought my mom back with him into the living room. Little did he know I’d been expressing my frustrations to her for weeks.

  “Tell her what you just said,” he ordered. I wanted to leap out of my chair and smack him across his smug face.

  “I said that I’m done with your comments, I’m done with you insisting that I stop lengthening, and I’m done working with you,” I replied as coolly as I could. I paid close attention to my mom as I spoke, praying she wouldn’t surprise me and take his side. Please, Mom, I pleaded inside. Please tell him that you agree with me.

  She said nothing, only moving toward the door and opening it. Tom gathered his things and left. Just like that. I mustered the remaining strength I had left, gripped my walker tightly with my hands, and moved myself from the couch into the blue recliner. My chest tingled from the exchange. I felt I had finally stuck up for myself and for what I wanted out of life. It was addictive.

  “I’ll call the home-therapy agency tomorrow,” Mom said.

  Trying to sleep at night soon became more and more difficult, and my attitude took a nosedive. I didn’t have the patience to deal with anything or anyone. I was becoming less tolerant and tired of explaining myself. I had blinders on and saw nothing but my goal. Nothing else existed. I had even become less patient with my friends.

  My friends would call sporadically to talk about the latest gossip and drama that filled the hallways of MHS. The last thing I wanted to hear about was who was having sex with whom, who was trying pot, or who was hosting the crazy Holiday Inn parties that I couldn’t go to, but— “It would have been fun if you were there, Tiff!”

  I couldn’t relate to any of it, and I didn’t want to.

  “It makes you relax,” a girlfriend told me about pot one night.

  “So it’s like Valium?” I asked halfheartedly while staring at my pin sites, wondering how bad it would be if I only cleaned them once a day instead of twice. They certainly looked clean.

  “Like what?” my friend asked, as though I’d been speaking in a foreign language.

  “Valium.”

  “What’s that?”

  “Never mind.” The divide between me and my friends seemed to be getting bigger all the time. I had become an expert in pain meds. By my sixteenth birthday, I had been on Vicodin, methadone, morphine, OxyContin, Percocet, codeine, and fentanyl, and here was my friend, excitedly telling me how drugs helped her lose control. All I wanted was to get back in control.

  What could my friends possibly be so desperate to escape from? To me, being pain-free for ten minutes was pure, unadulterated ecstasy, and I felt myself becoming bitter that they didn’t appreciate the peace they had. My classmates didn�
��t deserve their independence, because they took it for granted. No one in high school even deserved his or her body, I thought wildly. They all took the little things for granted. The ability to reach the combination lock on their lockers, the dollar slot in the soda machines, the sewing machine pedal in design class, and the ability to climb the bleachers— no one appreciated any of it. My classmates didn’t have a clue what it was like not to be able to access these everyday things.

  That winter, Dad carried me downstairs one morning after Mom went to work. Groggily, I began my pin care routine in the blue recliner. Going through the motions, I felt a cramp below my stomach. It was a new sensation unrelated to my legs and I assumed it simply meant I had to use the bathroom. I called my dad for help getting to the toilet. He lifted me out of the chair.

  “You’re bleeding,” he said simply. I was confused. I hadn’t knocked my pins into anything, they weren’t infected, and I hadn’t pushed myself too hard the day before. Where was the blood coming from? In the bathroom, Dad helped me onto the toilet. The blood was all over my shorts and stained the inside of my thighs. Then it dawned on me: I’d just gotten my first period . . . with my father looking on.

  Neither of us said a word. Dad stayed focused on helping to clean me and change my clothes. There wasn’t a single pad or tampon in the house, so he improvised. He took a new roll of toilet paper out from under the sink and unraveled half of it, creating a thick nest to line my underwear. If MacGyver were a father, he would have been proud.

  As I adjusted my bulging, makeshift panty liner, Dad went out into the living room to spot-clean the chair and layer it with towels. Then he came back into the bathroom, scooped me up, and deposited me back on the recliner like nothing had happened.

  “There,” he said as nonchalantly as possible. “You’ll be fine until Mom gets home. Just don’t move.”

  I nodded, flipping through the TV channels, waiting until he went outside before calling my mom. When Mom made it home from her shift, she found me sitting in the blue recliner, still in my toilet paper nest. With a package of maxi pads in hand, she burst out laughing, apologized, and gave me a big hug as if to say, It could be worse.

  Judy Blume herself could not have prepared me for the way I welcomed my Aunt Flow.

  That spring also signified the start of new things for me and Mike. For him, it was the beginning of his first serious relationship, with a girl from Westborough. The season was the beginning of a whole new world for me, too. That spring, I discovered the Internet.

  One night, when Dad came home from work, he hoisted his massive Gateway 486 desktop PC monitor on top of my small hospital table.

  “Take a look at this,” he said happily. “It’s better than television.”

  Back then, his desktop computer cost more than a thousand dollars and had only 32 megabytes of RAM. He set the clunky tower on a separate table next to my bed. All I needed to do was lean to my right, press the power button, and I could boot up. The machine purred, then toiled as Windows loaded. The screen glowed and the fans whirled inside. It was alive. And for once, my room was, too.

  Each night, cast in the pasty glow of the screen, I settled into my orthopedic adjustable bed and found my own way to get out. The Internet became a place where I could communicate with— and relate to— so many people. Without having to move from my bed, I was connected to cyberspace. I became so consumed with my virtual travels that I discovered a much bigger relief— giving up my pain pills.

  Unix systems, Linux, telnet, DOS, chat rooms, and BBSs (bulletin board systems)— I was into it all. Everyone online went by nicknames, or “handles.” To decide on my own, I peered down at the monstrous contraptions attached to my legs and thought of the five-plus inches I had gained thus far. I decided to call myself “LiveWire.”

  I made new friends and though I didn’t know them the way I knew the kids at school, I felt close to them. And I appreciated the fact that we didn’t have to talk about drugs or alcohol. Instead, we chatted about real, interesting topics like Trojan horses, Bill Gates vs. Steve Jobs and Steve Wozniak, and the irrelevance of certain firewall security systems. We talked about things that distracted me from the pricking sensations tackling my legs. We shared our ideas about the battle for free information online and The Hacker’s Manifesto, written by a hacker known only as the Mentor.

  And then it happened . . . a door opened to a world. . . . Rushing through the phone line like heroin through an addict’s veins, an electronic pulse is sent out, a refuge from the day-to-day in competencies is sought . . . a board is found. This is it . . . this is where I belong. . . . I know everyone here . . . even if I’ve never met them, never talked to them, may never hear from them again . . . I know you all. . . .

  I had found a place to belong.

  It wasn’t long before I decided that I wanted revenge on the one person who had told me I didn’t belong: Ms. Hart. And I was going to recruit for it. I posted a battle cry on the boards, and the response was nothing short of awesome. Many joined in with their take on what would be funny and “equally as mortifying” to do to her. Before I knew it, I had assembled a miniature army. Our battle plan included something we’d seen in the movie Hackers: listing her office phone number on shady sex sites (it was a little scary how easy it was to do that) and constructing advertisements that would humiliate her. Of course, there were ways around paying for these advertisements, too. In cyberspace, there were ways around everything.

  One of my online friends spent time creating a program that would infect her office computer and cause the printer to go crazy. Pages upon pages would be printed that read: “Ms. Hart is a diseased cow.” I laughed at the image and fell asleep fantasizing about how embarrassed she’d be— even more than I had been.

  None of this came together overnight, of course. First I needed her phone number, I needed to figure out what type of network MHS was running, and I needed a physical body to upload the virus into the system. This would require the help of someone at school. To my surprise, I found a good friend who agreed to do it— one who hated her computer class— and anything to get out of doing actual work sounded great to her. I had finally found a way to bridge the gap between my high school and me.

  One of my online friends also suggested going beyond the boards and seeking out an elite hacking group. During one midnight conversation, I was directed to a Boston hacker organization. Excited and motivated, I wrote them an e-mail and told them my story. It was a while before I received a response, but when I did, two words jumped out at me right away.

  Sounds fun.

  But in the end, I found my hacker in Florida. In the mail, I received a square red disc with a message written on it in black marker. It read: “LiveWire, here is your disease.” I had made a risky move, giving my home address to people I had never met, but I didn’t care. Oblivious, Dad handed me the package, but Mom had grown very suspicious about what I was doing on the computer late at night and demanded to know what the disc was for. I refused to show her, fearful that if I put the disc into my dad’s computer it would become infected. I couldn’t think of a decent lie, either, so the truth came out.

  Dad stood in the doorway with his evening rum and Coke during my admission. Tilting his glass and stifling a smile, he looked at me with what I could only interpret as an expression of approval.

  “I like my martini shaken, not stirred,” he said with a wink before leaving my room. Mom immediately threw out the disc and issued a singular warning.

  “If you abuse the computer, you won’t have a computer anymore.”

  I was stuck, and whether I liked it or not, she had the upper hand. I could not get to the computer on my own if she decided to take it away. I removed the programs that locked my dad out of his own PC and gave her my programming, operating system, and online security books that I’d picked up at the bookstore when we went to the mall. I even forfeited my personal notebook filled with IP numbers.

  The game was officially over.

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sp; I never found out whether anyone actually made phone calls to Ms. Hart’s office. It was frustrating to be left without answers, so I fantasized about what may have happened, hoping that Ms. Hart was embarrassed in the sports medicine room the way she embarrassed me. I wished my mom hadn’t caught me, but I wasn’t ashamed of what I’d done.

  I turned my attention to catching up on sleep, exercising, and cleaning and turning my pins by day. I even found motivation to stay awake long enough to sit through an entire tutoring session with my new homeschool teacher, Sandy. I was hell-bent on graduating with my class.

  “Do you have a fascination with meat or cake?” I asked her when she settled onto the couch with a stack of books and notepads during our first session.

  “Um, no.” Sandy stared at me, perplexed. Young and enthusiastic, she had a pleasant, casual way of speaking and reminded me of an older sister.

  “Are you in pain right now?” she asked.

  “No, I’m good. Now, what about the meat and cake?”

  “I’m not sure what that has to do with your graduating on time,” she said. Then it was Sandy’s turn to question me. “If you’re in pain, will you tell me so we can take a break? That’s all I ask, that you’re honest with me about how you’re feeling.” She smiled, studying my face. Sandy seemed to be unmoved by the sight of my pins. At least, she didn’t let it disrupt our time together. I felt like she understood me.

  By night, if I couldn’t devise plans to embarrass Ms. Hart anymore, I decided I would write stories on the computer about humiliating her. There was so much I wanted to say to her but never did. Suddenly, I no longer felt confined. I had my own private world, free of the pain, prejudice, and ignorance I had come to know in reality. This was a wound that would not heal. I no longer cared to keep silent. My writing was my vengeance. So I stayed up late at night, writing a murder mystery involving the untimely passing of a high school teacher whose body was found in an ice machine, pounding away at my keyboard like the piano I never had.