Dwarf: A Memoir

by Tiffanie Didonato

  I almost called off the surgery right then and there, I was so freaked out by the way Errol described it. But because I didn’t want to place a limit on how far I could lengthen, he said it was necessary to use this new method. It would be like an internal cast, keeping my bones immobile as my shins grew longer, minimizing the chance for complications by allowing him to make tiny adjustments to keep my bones in proper alignment.

  The nails in the heels sounded the worst to me. With them, I wouldn’t be able to flex my feet or point my toes while enduring the lengthening. I could wiggle my toes, but the internal wires and nails would keep my feet flat. Somehow I was able to convince myself that it was just another part of the process, and though I hadn’t experienced it before, I’d get through it just fine.

  I’d simply come too far to turn back now.

  October 15, 1996, was my last day at Marlborough High School. It was just like any other day. There was no big fuss signifying my farewell, no announcements, no homemade cupcakes to send me off. It was a little disappointing but not surprising: I didn’t exactly make it public knowledge that I was undergoing major surgery to be followed by months of grueling recovery. Even if I had tried to explain it, I’m not sure my classmates would have fully grasped the concept.

  When the bell rang at the end of my last day of school, the halls flooded with all sorts of bodies— thin cheerleaders, stocky athletes, scrawny sophomores, and heavy seniors (all of them tall, though), and they were all equally anxious to get the hell out for the day. Not me. I stood in the center of the atrium and I looked up at the bright orange railing lining the main stairway and the walkways to the left and right. Someday, I imagined, I would walk up those stairs, purposefully forgoing the handicapped elevator that I had relied on each day before. Taking the stairs with everyone else was a luxury I never got to experience. Someday, I promised myself as I gazed at the seniors upstairs, digging into their purses for car keys, I would drive my car to the school for a visit, and then effortlessly pull into a parking space of my own. One day, I would push open the front doors with ease, just like everyone else who passed by me on their way home.

  I knew my mom was waiting outside in the parking lot, but I wanted to take my time saying good-bye. Other than Mike, I didn’t tell anyone the extent of what was going to happen to me. The surgery would speak for itself. A few friends gathered around me and wished me good luck. Some said they’d write; others promised to visit. I smiled and nodded, encouraging their efforts but knowing that I wouldn’t have any social life to speak of over the next several months.

  But at least I’d have Mike.

  I spent the majority of that evening compiling a mix tape for my Walkman. Bush, Republica, White Zombie, and random songs from the Mortal Kombat sound track made up what I would label “Surgery Mix.” Mike had called me four times. The first two phone calls were extremely brief.

  “Hey, what’s up?” he began, as always.

  “Making a mix tape,” I said.

  He didn’t give me enough time to tell him I was including his favorite, Nirvana, before he got angry and hung up on me. I’d told Mike months earlier that I’d be undergoing more lengthening surgery, but he was dismissive of the idea from the start, saying I was fine just the way I was.

  A half hour later he called back. He asked the same question and I responded the same way. He hung up. The third phone call lasted a bit longer.

  “You’re doing this all because of a teacher,” he said.

  “No, I’m not,” I corrected him. “I’m doing this for me.”

  He hung up once more. Later that evening, he called to say good night.

  “It’s not too late to change your mind. No one is pushing you.”

  He was right, it wasn’t one person pushing me, it was everything. My own life pushed me. I could tell he wasn’t happy with my choice. Like my dad, Mike never understood how differently I saw myself. He could never comprehend just how hard it was for me to reach the milk off the top shelf in the refrigerator. To be eye to eye with Bruiser and to come up only to my friends’ hips— I hated it all.

  “I’m doing it.”

  “Fine.”

  “Call me in the morning to wake me up?”

  “What time?” he asked with a dramatic sigh.

  “Three a.m.”

  “Maybe.”

  And that was that.

  The night before the operation was pretty unremarkable. We didn’t have a big dinner. Despite the constant reminders from my mom to “eat what you want now, because at midnight, that’s it,” I wasn’t very hungry.

  I didn’t even have any packing to do. What would I need? I wouldn’t be able to wear socks or underwear. I didn’t even need a toothbrush— the hospital provided one. I just needed my Walkman. Mom had the most to put together, because she would be staying the night with me. We watched television while she packed, and when it finally came time to turn out the lights, we said good night the same way we always did.

  At three a.m. my phone didn’t ring. I didn’t sleep much and really didn’t need a wake-up call, but I wanted to feel like Mike was there for me. My heart ached. I didn’t want him to hate my decision, but I wasn’t about to do anything to change it.

  My dad was the first one up, making coffee. Mom took a brief shower and then carefully arranged my hair into a French braid— the best style for hair that would be pressed against a pillow, untouched for days. No one spoke much. It felt like we were all too busy going through our individual what-ifs. I pulled on my gray sweatpants and sweatshirt, gathered my headphones, and popped in my mix tape.

  Once I’d made my way downstairs (the last time I’d have to do it like a child, sliding down on my butt, I thought to myself during the long trip down), my mom asked me to stand in front of the kitchen counter for pictures. I was annoyed. I didn’t understand why she wanted them, since, to me, it didn’t matter how I looked before the surgery. I just wanted the “after” so desperately that it angered me to see her holding up the process, even by a matter of minutes.

  I complied with her request anyway. I tried to arrange my face into a neutral expression, but inside I was seething. My best friend in the entire world had failed to call me when I needed him most, and on top of that, I was asked to pose like a criminal for mug shots. I faced front, left, and then right, next to the counter. Then the phone rang.

  I smiled with relief the moment I heard his voice, even if I didn’t love the sentiment.

  “This is your wake-up call . . . I think what you’re doing is dumb,” Mike said, his voice trailing off. “Are you scared?”

  “A little.”

  “Here. Listen to this.” The phone rustled a bit and then I heard him begin to strum his guitar to the tune of Bush’s “Glycerine.”

  I don’t want this, remember that I’ll never forget where you’re at. Don’t let the days go by . . .

  Mom motioned for me that it was time to go and I watched the clock on the stove tick from 3:29 to 3:30 a.m. Pre-op began at 4:00.

  “Thanks,” I told Mike. “Well, it’s . . . about that time.”

  He took a short, shallow breath. “I’ll say this for the last time, babes: You don’t need this surgery. I love ya no matter which way you are.”

  I loved him for saying that, but my mind was made up. And I knew that he knew it, too.

  “Have your mom call me afterward.”

  “Okay,” I promised, so glad that he’d called after all. “I’ll talk to you when it’s over.”

  “Talk to you when it’s over.”

  Outside, the garage door was open and the light illuminated the top of our driveway. I stood in front of the Jeep and looked one last time at my wobbly reflection in its cherry paint. I couldn’t reach the door handle. Dad leaned over and opened it for me. I looked up at him and smiled, not because I was happy he did it for me, but because I wanted him to know I was happy to get in the car and go to the hospital.

  “I’ll be there a little later,” he said. He was working a h
alf day and would meet my mother at the hospital when his shift was over. I think he needed something to do during the surgery or else he’d be consumed with worry.

  “Okay,” I replied. And then we were off. It was that simple, that ordinary.

  Mom wanted to talk, but I didn’t have much to say. I just wanted to get the operation over with and move on to lengthening my legs. I felt impatient for the possibilities, and even more excited and ready to go, because it was finally all within my reach.

  “What are you thinking?” Mom asked as she drove. Her hands were steady and calm on the wheel as always, despite the major surgery that was finally upon us. She occasionally glanced over in my direction, waiting for my response.

  I didn’t know how to answer her question honestly. Should I tell her what she wanted to hear? Did I tell her that I was confident, unafraid; that I’d undoubtedly made the right choice?

  In actuality, I was thinking about those jeans again, childlike in their short length, and how much I couldn’t wait to burn them. I am making the decision to adapt, I reminded myself. The world will not.

  “I can turn around,” Mom said gently, mistaking my silence for fear or regret.

  “No!” I jolted out of my daydream. “Keep going. This is what I want.”

  “Do you mind if I stop for a coffee?” she asked.

  “I don’t mind.”

  “You sure? I always hate drinking my coffee in front of you when you can’t have anything for yourself.”

  “I don’t even like coffee,” I reminded her. “Please, get some. It’s fine.”

  A brief drive-through visit to purchase an extra-large coffee with three sugars and milk and we were back on the highway, merging onto Lincoln Street and then pulling into a parking space at UMass Memorial Medical Center.

  In the pre-op room, the boxy TVs attached to the ceiling were set to the early morning news broadcasts. A team of doctors and nurses entered through the automatic room doors and a swoosh followed behind them as the doors shut tightly. The heavy scent of bleach floated toward me.

  The residents stopped at the foot of my bed. Some kept their surgical masks pulled over their faces, while others appeared less intimidating and let their masks hang beneath their chins. They all checked my charts, flipping through the pages. The sound made me nervous. One nurse carried a gray plastic basket. She smiled and then walked closer. Inside were needles of all shapes and sizes, alcohol swabs, and other items for starting an IV. That time had come. I winced as she tied the yellow rubber band around my extended arm.

  “Just relax,” she said softly.

  I hated this part.

  I took a deep breath and exhaled and tried to ease my veins to the surface. If you’re tense, I’d learned, veins dive like submarines. She tapped the top of my hand, trying to raise them back up to the surface. Then there was a pinch and an odd rolling feeling beneath my skin as my veins tried to move away from the blue butterfly 22-gauge needle. After a few more seconds, she was done. She flushed the line and then was on her way out of the pre-op room. Then my anesthesiologist finally approached.

  My mom double-checked with him that the machine they used was halothane-free since I was allergic. Then he turned to me.

  “Ready?” he asked.

  More than ever, I thought as I nodded.

  He inserted a needle loaded with the relaxant Versed into my IV’s heparin lock and let me push it through at my own pace. I needed that sense of control and he graciously gave me that illusion. I turned up the volume of my headphones a bit, pushed the syringe forward carefully, and let my body ride the high. I felt weightless and giddy. Mom squeezed my hand and mouthed I love you as I got lost in the noise blaring from my headphones.

  Then, casually, Errol entered.

  I moved my headphones partially off my ears. The way Errol raised and then gripped the steel rails attached to my bed seemed slow and relaxed. Then he smiled and asked the same question as the first day I met him.

  “How are you doing?”

  “Errol,” I responded as the Versed thickened my tongue, “I love you. I love you and I thank you. Thank you. I love you.”

  “I love you, too, Tiff,” he replied as the fluorescent lights rolled by over my head. He placed his hand on my shoulder and walked beside my bed as the nurses wheeled me into the operating room. The massive, alienlike lights that hovered over the operating table made the room extremely bright. Someone close to me said, “Count to ten, Tiffanie,” and out of the corner of my eye I watched the thick, milky propofol push slowly through my IV.

  I made it to three.

  CHAPTER 8

  Learning to Walk Again

  Sitting on the couch with the pins and fixators attached to my legs.

  IT WAS DURING the evening that Mom realized she’d lost track of time. The hours seemed to meld together as she paced and made small talk with friends at the hospital while she waited for Errol to find her. A few times, she dialed the number the operating room nurse had given her to inquire about how I was doing. At other times, she flipped through the channels on the waiting room television, scanning everything but watching nothing. Mom never once left the hospital. The wait was approaching twelve hours and she grew more worried by the minute.

  Soon, she calculated that thirteen hours had passed.

  Then fourteen.

  Finally Errol stepped off the elevator. Soaked with sweat as if he’d just stepped out of the shower, he hugged her and said the words she had waited all day to hear: “Tiffanie’s done and she’s doing fine.”

  It was the longest surgery I had ever endured.

  “It took a while to erect everything around her legs, because her limbs are so short,” he continued. “But she’s doing fine.” Beads of sweat continued to pour down his forehead and over his temples.

  Mom followed Errol to the Pediatrics ICU, where I would lie heavily sedated for days. I had my own room, and Mom made herself comfortable on a reclining chair. Her fingers gripped my limp hand. There were no stuffed animals lining my bed or under my arm this time. The operation was over, but the process had only just begun.

  I didn’t wake up from surgery until four days after the doctors completed their work. I couldn’t figure out if it was day or night— it felt like time had stopped. Instead of a clock ticking, I heard monitors all around me, beeping and chirping, keeping time with their own strangely melodic tune. Other machines around my bed made a steady humming noise, and I could almost feel that humming traveling through the wires attached to my skin and into my body. I hummed with pain.

  The air was still and I could hear muffled echoes at a distance. Then I heard them move toward me, closer and closer, until they were hovering over my body. I was too scared to open my eyes. I didn’t need to see in order to understand what was going on around me. I could feel the nurses’ presence. My mind felt clouded, but my senses worked on overdrive, trying to regain their bearings while my brain sluggishly tried to catch up. I felt, smelled, heard, and tasted everything, all at once. And all of it was amplified.

  A nurse rustled around in his pocket and tore open a package. A syringe, I was pretty sure, then an alcohol swab. The powerful odor stung my sinuses. Then I felt him guide the syringe into my IV and I knew it was full of more methadone. The drug bit at my veins as it flowed under my skin. Certain medications produce physical sensations. Some are cold and others are hot. Some tingle while others jolt.

  Sometimes I feel like I could write the manual.

  I heard him shuffle around in his pocket again, this time for the medical tape and scissors. Gently he secured the IV wires to my hand with an extra layer of tape. I could feel him looking at me, wondering why a teenage girl would voluntarily put herself through all of this.

  I didn’t feel like a teenage girl. I felt like a fifteen-year-old warrior. There was nothing innocent about my pain.

  Once again, I could feel the kind nurse’s eyes take in my motionless body.

  He probably felt bad for me.

&nbs
p; Maybe he knew me. Was this nurse one of my mom’s hospital friends? Maybe I’d met him before. I wondered if he knew how much I wanted this.

  The pain in my legs felt twisted and cruel. The sensations contradicted themselves— hot, then cold, sharp pains followed by a dull, achy numbness. The chilly hospital room felt like it had become even colder in the minutes (or had it been hours?) since I first woke up. I swore I could feel my drilled and severed bones shiver and my muscles clamp around them. It was a shocking, terrifying sensation, but I couldn’t scream. The force of the sound exiting my mouth would be too painful to bear. All I could do was remain still, keep my eyes shut, and allow the tears to fall down my cheeks. The nurse, still beside my bed, gently lifted them away with his fingertips. His hands felt smooth and young. I silently wished that he’d stay.

  As I listened to him sift through a drawer, I noticed that my throat was so swollen from the long intubation that I could barely swallow. And a peculiar, thick smell was everywhere. It was inside my mouth, coating my tongue, and filling my head. The scents of bleach and laundry detergent that lingered on my blankets mixed with the smells of plastic and rubbing alcohol— a sickening perfume of my surgery. Once I noticed it, I couldn’t stop smelling it.

  I felt the nurse leave. Finally, I lifted my heavy eyelids just a bit. Through the open sliver, I noticed the light in the hallway illuminating another profile. The rest of the room remained dark. Sitting at the end of my hospital bed with his head in his hands was my dad. His outline glowed in the dim hallway light. When I opened my eyes just a millimeter wider, I saw that he was crying.

  Dad looked crumpled, defeated. He never talked about blaming himself for giving me half of the diastrophic dysplasia gene that caused my dwarfism. I could only imagine that was what he was feeling now. Despite being able to fix damn near anything placed in front of him, he could never fix me.