Dwarf: A Memoir

by Tiffanie Didonato

  Typing faster and faster with each minute that ticked past, I channeled Papa, mumbling, “That’s good,” at the end of a line that I particularly liked. I could barely maintain control of my fingers. It was as if I had an imaginary coach standing over my shoulder, dictating all of the experiences I had gone through and reminding me of the emotions attached to each one.

  Write! Tell the world! I imagined him shouting as the words poured out of me. I was unstoppable, slamming down on the keys as if I were playing before a packed concert hall.

  Write! Write! Write!

  It was a rush that affected me more than any drug. I got a high off each sentence. The hairs on my arms stood tall as the paragraphs poured out on my screen. It even took away those persistent muscle spasms. Above all, it took away the painful memory of being humiliated in the sports medicine room.

  That night, for the first time, time flew by. Minutes turned into hours. Before I knew it, the sun was coming up, and my father was getting ready for work.

  Day after day, I began to find myself excited to do pin care at night, because it meant that, within the hour, it would be computer time. I forgot about taking pain pills altogether. They were out of the question, because I couldn’t type or read the text on the screen when I was on them. I would cope with the pain, even throughout the grueling therapy, without the meds, because my new coping mechanism was writing. Despite being weighed down by rods and metal, I had finally found a way to be free.

  CHAPTER 11

  Victories

  Graduating from Marlborough High.

  SIX MONTHS INTO the bone-lengthening procedure with my shins, I woke up one April Saturday around noon. I cleaned my pins and craved a bowl of Blueberry Morning cereal. My formerly feeble appetite was back with a vengeance and it made my mom smile when I asked for seconds. After breakfast, I lifted my legs and swung them over the bed as I had done so many times before, gripped my walker, and began my long journey to the bathroom. It was an average Saturday morning.

  At first.

  I fixed my gaze on my feet as I slowly passed the blue recliner Dad had brought upstairs from the living room. Eventually I made my way through the door frame and into the hallway. Noticing that I was once again looking down as I walked, Mom yelled at me.

  “Stop looking at your feet! Look in front of you!” It was just her helping me with my physical therapy now, and during times of frustration I called her “G.I. Jane.” Standing up straight was the least of my concerns, but a major one of hers for the sake of the rehabilitation process. I had to relearn proper posture, but making it to the toilet on time was a much higher priority.

  I wiggled and pushed my clunky walker through the narrow doorway. The wooden doorjamb was riddled with deep indentations from my many trips to the bathroom. As I neared the toilet, I lifted my eyes, maneuvering my body in that direction. Then I saw it. Out of the corner of my eye, I noticed something that literally stopped me in my tracks, bringing the wheels on the front of my walker screeching to a halt. In the mirror, I saw a girl— I took in her torso, then her shoulders, her neck and head. It took a moment to realize that girl was me.

  It was the very first time I saw the reflection of my upper body in the mirror.

  My shoulders looked so strong, I thought, as I stood gaping at my reflection for several moments. I had seen myself in full-length mirrors before, standing next to a friend of mine or passing by a fitting room at Macy’s, but I had never seen the reflection of anything below my neck in my own bathroom mirror. It was as if I had switched places with someone else, swapped bodies somehow with someone taller. But it was me.

  The pain I faced every day in my legs, the burning and the tight, stinging aches that crawled up and down my shins— it was worth it.

  Then the craziest idea occurred to me— what would happen if I tried to turn on the water? Anxious, I lifted my walker and pivoted toward the sink. My walker smashed into the under-sink cabinet, denting the wood. I didn’t care. I reached out and gripped the knob for hot water, then the cold, turning them on and off individually and then together.

  Giggling to myself, I traced my fingers across the deep belly of the sink. I could reach it all. Everything! The blue Rubbermaid stool sat in the corner alone— I didn’t need it anymore. The soap, the towel hanging above the rim of the sink, the plastic container stuffed with Q-tips— nothing was off-limits.

  Then Mom’s reflection appeared in the mirror behind mine. No words were exchanged. There was nothing we could say that would adequately express the joy we both felt at my discovery. It was like I had glitter pulsing through my veins, tickling my insides, and without warning it burst out of me. I laughed with such reckless abandon and glee that my mom couldn’t help but join in, laughing hysterically until we were both wiping away tears.

  I couldn’t wait to call Mike, but when he answered, he sounded distracted, like he was somewhere else. I begged him to come over.

  “You have to see this!” I shouted over the phone, gripping it tightly.

  He promised to stop by.

  My world had changed overnight, even though it had actually been six long months of turning pins, therapy, and struggle. That Saturday, I lost myself in the mania of my excitement and moved all around the house to see what else I could reach. Mike never did come over, but I hardly noticed in the excitement.

  Light switches were next, and I found that I could turn them on and off with ease. Towels were within reach, too, and I could use them in both the bathroom and in the kitchen, or even fluff and fold them, draping them over the rods. No longer did I need them as lassos to extend my reach. I could now use towels the same way everyone else did— to dry my hands after washing them in the sink. Overjoyed, I hollered to my dad for him to carry me downstairs to see what else I could do. I made my way to the coffeemaker, where I found that I could grip the handle and pour a cup, but the buttons and the filter were all still a bit too high for me to reach. This would come later, I thought, as I gained more height. I still had my thighs to lengthen.

  Before long, that time had come. In my bed one afternoon, I realized something was wrong. Each time I turned the L-wrench, it pushed back against me. It was as if my body were issuing a bold, loud warning.

  Normally, turning my pins felt like nothing at all; the quarter-millimeter turn was too small to feel. But this time I felt a strange pressure in the center of my shin and the muscles on the bone felt tighter the more I tried. It became too painful to turn.

  “Something’s not right,” I told my mom. “It’s harder to turn.”

  “Does it hurt?” Mom looked concerned and then motioned toward the pins, asking if she could turn them. I nodded.

  Slowly she pushed downward on the wrench and her eyebrows centered in the middle of her forehead. She felt it, too. She took out the wrench, set it on my lap, and looked at me.

  “What do you think?”

  “I think it’s time to stop. Can I have the phone? I need to call Dr. Mortimer.”

  I was never so happy to go to UMass for surgery. It was time for the second phase of gaining my independence.

  The battle plan: to remove the pins in my shins and, in the same operation, break, drill, and insert new fixators and stainless steel pins into my femurs.

  Before I knew it, that surgery was completed and I was waking up with new pins in my thighs. The fog of anesthesia clouded my brain and I couldn’t tell where one thought ended and another began. But I knew I was in the recovery room and I knew the recovery room nurse holding my hand was Kathy Sheridan. Her presence automatically calmed me and I felt safe from all the chemicals that took over my body. Instead of using a set of metal half-moons like the ones that had been around my shins, Dr. Mortimer had attached the same device to my thighs that Dr. Shapiro had used on my arms years before. A black bar, the thickness of a remote control, fixed along the outside of each of my thighs, anchored into the femurs.

  “I feel heavy,” I said to Kathy through dry lips. My throat felt coarse, as if I�
�d been screaming.

  “How, honey?” she asked, guiding ginger ale to my mouth and helping me sip.

  “I feel like . . . I’m stuck. Can’t move.”

  She shifted the IV and heart monitor wires around me and adjusted the blankets. I hated being caught in wires.

  “Still?” she asked.

  “Yes. I’m stuck.” I felt like my legs were being tugged deeper and deeper into something, but I didn’t know what. I knew this sensation was real and it wasn’t my imagination. I was definitely stuck.

  Kathy gently pulled my blankets down and finally saw what I’d been feeling. The tips of my pins had embedded themselves into the mattress. My legs were truly stuck in the bed. That was the first sign that this phase of my bone lengthening would be entirely different from the last. I’d have to sleep on a tough nylon air bed now. Using my walker was also different. There wasn’t enough room to move inside of it. The pins jutting out from my thighs hit the bars of the walker in all the wrong places. Crutches were the other option. This demanded a level of skill and balance that took me weeks to perfect.

  “Now that you can move easier, you need to get outside. The weather is too beautiful,” Mom insisted one sunny afternoon, afraid that I’d suffer from surgically imposed cabin fever.

  The breeze felt nice as I stepped onto our farmer’s porch. The flowers in Mom’s garden were beginning to sprout. I wondered whether I’d grow faster than the roses.

  Mom brought out some iced tea and helped me sit down and extend my legs out in front of me. Together, we watched several cars and the occasional truck enter our street and pull into a neighboring driveway. It was good to get out, even if it was only to sit in our front yard. Then I heard the garage door open and Dad pulled the Grand Prix out into the driveway for a good wash and waxing, a little ritual of his in the warmer months.

  I watched him put the car in park, then get out and feed a green hose into an orange bucket. Soapy suds crested over the rim and spilled down to the pavement.

  “I can’t wait to wash my own car,” I said between tiny sips of cold tea.

  “Soon enough,” Mom said.

  “I can’t wait to drive that car and get it dirty,” I added with a laugh.

  Mom didn’t respond right away. She swiveled toward me, practically popping out of her seat.

  “Why wait?”

  Confused, I watched her stand up, take four big steps to the end of the porch, and lean over the railing.

  “Gerry!” she shouted over the gushing water. “Gerry! Stop! Wait! Come up here for a second.”

  “Why?”

  “Just come up here for a second, would ya?”

  Reluctantly, he turned off the water and climbed the stairs up to the front door.

  “What?”

  Mom addressed us both. “Tiff, how would you like to try and reach the pedals now?”

  “Reach the pedals of what?” Dad asked.

  It was a crazy idea. But it was brilliant.

  “Oh no. No, no, no!” Dad shook his head in disapproval. “You’ve got to be kidding me.”

  Mom ignored his protests and picked up my walker, rushing it over to the car. I outstretched my arms, ready to be picked up.

  “You’ve lost your mind! You can’t get in the car, c’mon!” Dad shouted.

  Hurry up and just grab me! I thought, waving my arms at my mom.

  “Robin!” Dad shouted.

  “Gerry!” Mom mimicked.

  “She can’t get in the car— what if she breaks a leg?” He was getting more upset by the minute. But his question was pretty hilarious.

  “Hello? Have we met? Broken legs, meet my dad. Dad, meet my already broken legs,” I said with a snort. Mom let out a hearty laugh of her own.

  Dad realized this was a battle he could not win. Reluctantly, he walked by my mom and scooped me up in his arms, carrying me to the car. Mom opened the door and I took in the scent of Armor All on the faux leather interior. The gray fabric of the seats felt warm from the sun beating down on them through the windshield. It was all just spectacular. I felt as if I had never been in a car before.

  “Watch out,” Mom said and she slammed the door. I had plenty of room to sit between the door and the center console while allowing extra room for my pins. I sat staring out the windshield and gripped the steering wheel, my breath shaky with excitement.

  Mom sat down in the passenger seat and dangled her car keys in front of me. “Start it up.”

  It was more exhilarating than I ever could have imagined while watching those BMW commercials. I didn’t waste any time— I jammed that sucker in as fast as I could and turned. The sound was like excitement personified.

  “Can you reach the pedals?”

  I hesitated, scared at the thought that maybe I couldn’t reach. But I lifted my right leg anyway and hoped for the best. My foot just barely touched. “Not yet.”

  “That’s all right. It will get there.”

  Week after week, Dad carried me down the cellar stairs to the Grand Prix. No longer did I just sit on the front porch daydreaming and sipping iced tea while staring at the roses. Instead, I turned the key to the ignition and felt the hum of my future down the road.

  I measured my progress— one millimeter at a time— until the moment arrived: I could reach the pedals. The pulsating ache under my ankles was now a distant memory. I pushed a button to lower the windows and then let out a scream like none other.

  “I did it!”

  Mom rushed down the porch steps, my old Cyndi Lauper tape in hand. It was time to have fun. In the driveway I practiced three-point turns and fixing my mirrors. Then, with Cyndi blaring full bore out the windows, I took off down the driveway and down my street.

  The excitement just kept coming in the days that followed. Shortly thereafter, I took a therapeutic soak in our hot tub in the cellar after a particularly grueling exercise session. I sat in the water, allowing it to relieve the tightness in my tired muscles. My legs felt buoyant and my body warm as I enjoyed the knocking massage of the jets on my muscles. My skin was numb from stretching the nerves near the surface, but the bubbles seemed to kick those same nerve endings into gear and my legs felt alive again.

  I thought back to my driving adventure days earlier and wondered what would happen if I tried to cross my legs. It was such a simple, unconscious movement that I witnessed others do time and time again. And it was another small but significant move that I had long since accepted I would never be able to make.

  Or could I?

  As the foam churned around me, I lifted my right leg up and gently dropped it over my left. It worked. Laughing wildly, I yelled at the top of my lungs.

  “Mom!”

  She rushed into the cellar with her eyes wide, sighing dramatically when she saw that I was okay.

  “You have to stop doing this,” she said as sternly as she could through a smile. “I think there’s something wrong when you scream like that!”

  “Look!” I shouted, pointing into the water.

  Mom tapped a button for the bubbles to cease and she peered into the water as the surface settled. “Oh my God!” she screamed.

  “I know!”

  “You’re crossing your legs!”

  “I know!”

  “You couldn’t do that before!” She had tears in her eyes.

  “I know, I know!” I shouted, gesturing for the phone. “I have to call Mike! He has to know about this!”

  He sounded tired and sapped of energy from the moment he picked up.

  “Can you come over?” I asked. He told me he had just woken up.

  “It’s seven at night. Were you already sleeping?” I prodded.

  “Long night,” he replied.

  “Are you all right?” I lost track of why I had originally called. Something was wrong with him and it worried me.

  “Babes, you worry too much. I’ll be over tomorrow. Promise. And congratulations.”

  It was a full week before Mike made good on that promise. I heard his p
ickup truck in our driveway. Then I heard him cut the engine and slam the door behind him and walk across the lawn, stopping below my bedroom.

  “Babes!” he called up to my window, pelting it with mulch chips. “Open the garage!”

  “No!”

  He paused, shocked, before yelling back.

  “Why the hell not?”

  “I’m mad at you!”

  “Why?”

  “You missed some of the best moments of my life that I worked hard for!” I screamed from my bed. “And the worst thing is, you don’t even care.”

  “I told you I’d come over.”

  “That was over a week ago!”

  More mulch chips smacked against the glass. “I’m here now. I obviously care— open the garage!”

  I gave in. I needed to see him. I missed him and couldn’t deny it.

  I clicked the garage door opener and waited excitedly for him to appear in my doorway. With the garage door still rolling shut, he appeared. I had positioned myself on the edge of the bed in shorts and a T-shirt, legs dangling over the side to reveal my progress. I was planning to walk over to the blue chair at the other end of the room with my walker to further show off, but the look on Mike’s face stopped me. We’d been talking on the phone, but we hadn’t seen each other in person since my sixteenth birthday party in my full-length dress. That was eight months ago.

  The sight of me now was too much for him to handle. He’d changed a lot since my party, too: Mike had gotten his license and another new girlfriend, but he seemed to lose interest in his beloved dirt bikes and he decided he wasn’t going to college right away. There were new changes all around, but my body wasn’t a good one, as far as he was concerned.

  “Why won’t you look at me?” I asked, inching my way to the chair, lifting one heavy leg at a time and pushing my body forward.

  His gaze was fixed on the floor. He wouldn’t watch me walk.

  “Can you cover your thighs?” he asked, still not looking away.

  “Why?”