Dwarf: A Memoir

by Tiffanie Didonato

  When we were all seated, Mr. Long shifted uncomfortably in his chair as he stared at the floor. He refused to raise his eyes to me as I spoke, or to make eye contact with my parents. He remained quiet and almost seemed threatened. But one of the vice principals looked right at me and asked a question that left me feeling sick to my stomach.

  “Ms. Hart has been here for a while,” she began. “Do you think it’s possible that you misunderstood her?”

  “Excuse me?” my mother barked before I could respond. “How can she misunderstand something that has never been said to her before?”

  My dad didn’t say a word at the conference table. His hands did the talking as they shook. Gritting his teeth, he picked at his cuticles and then at a paperclip, unfolding it with red, raw fingers. For a man who lives to fix things, this was the first time I could remember him really wanting to break something.

  “Maybe we should bring Ms. Hart in here, so we can understand her side,” Mr. Clemens suggested.

  “Her side?” my mom snarled. “You bring that woman in here, and I can’t promise she’ll walk out.”

  That shut everyone up, and the three administrators sat still, unsure of their next moves. But I knew mine.

  The people I was told to trust and go to when someone hurts you had pretty much turned their backs on me. They were unwilling to make the right moves to rectify the situation. The heaviness I felt in the sports medicine room began to fall around me again. I could feel it closing in. I was done with their meeting. I was done being blamed.

  “Can I go to class?”

  After a long pause, my dad spoke up.

  “You want to go to class? Go ahead.”

  The grown-ups across from me, too afraid to face the issue, forced fake smiles as I slid off my seat. Everyone waited until I was out of the room before the verbal sparring resumed. Once in the hallway, I paused and covered my mouth with my hand. I knew the tears were coming but I didn’t want anyone to hear me cry. I felt like I had been called not only a diseased dwarf but also a liar.

  I couldn’t fight for myself. And that made me feel even worse.

  I wasn’t really going to class— I just wanted to get out of that room. I walked as fast as my legs could carry me down the cinder-block hallways. I walked away from the skinny gray lockers and the class I was supposed to join. I walked until my vision became clouded with tears and I found myself alone in the girls’ bathroom.

  Again.

  No one was inside. Aside from the sound of a dripping faucet and my heavy breathing, everything was calm and quiet. I entered a stall, locked the door, and slid to the ground, my heart thudding angrily. It felt like Ms. Hart had grabbed me by the back of the neck, forced me to my knees, and pushed me to stare at myself in a fun-house mirror. She made me look at myself in a way that I had never considered.

  Did others always see me this way? Why had they kept it from me? Did the whole school know what had happened in the sports medicine room? The questions drove me mad. My stomach churned, my body felt like it was on fire, and all the blood drained out of my face as I lurched toward the toilet bowl to vomit.

  I heaved until I had nothing left in me. Then I made my way over to the sink to wash my hands. Out of habit, I used the handicapped sink. Yet another way that I was different from everyone else, I thought, marveling at the fact that this had never really made an impression on me before. I didn’t even think about it previously, just like average-size people probably don’t think about which sink they use. Just as with my pair of tongs, my bathroom habits weren’t something I thought a lot about. I glanced back at the stall marked with a handicapped sign, the toilet paper holder that was screwed to the wall lower than the rest, the lowered lock on the stall door, and even the damn soap dispenser. Everything was different, adjusted for handicapped people. Like me.

  My stomach began to burn again with anger. And in that moment by the sink, I promised myself I would never, ever be told I could not do something because of my handicap. This would be the last time I would be singled out, excluded, pushed aside, or deemed unable to participate in something I wanted to do. I was ready to adapt— clearly, the world wasn’t going to do that for me. I was ready to do what it took to get the life that I wanted. I was ready to fight and go to war against dwarfism. More surgery would be the only way.

  That night, over dinner, I told my mom what I’d decided. “I want to go through it again,” I said simply. Everyone in my house knew what “it” was. And she agreed. My dad was against it and he reacted as he did with anything that upset him to the core. He just walked away, acting like it was only a fleeting idea that would run its course. My mom and I were instantly on the same page, ready, together, to embark on the bone-lengthening path once again.

  But this time there was one major difference. I wasn’t going to settle for the conventional amount of growth. This time I was going to make the pain worth it. The problem would be finding a surgeon who would do the procedure on my terms.

  CHAPTER 7

  No Limits

  One of the “before” shots Mom insisted on taking the morning of my bone-lengthening surgery.

  “IF I ONLY wanted three inches, I’d go buy a pair of platform shoes,” I told Dr. Shapiro, my voice sounding more emotional than I’d intended. My mom and I had scheduled a meeting with him about undergoing more lengthening surgeries, and I’d been looking forward to it for weeks. But my conservative surgeon wasn’t budging.

  I sighed and looked around the room, plotting my next move. The conversation felt like a chess game. Children’s Hospital Boston was under renovation, and it hardly looked like the same place from my childhood. I had bigger plans now.

  My efforts to persuade Dr. Shapiro for more than those measly three inches were going nowhere, and I was frustrated. He had been my orthopedic surgeon for all my life. I had grown to love him and trust him, but today, he was becoming just another obstacle. Not unlike a parent concerned for his child, Dr. Shapiro was fixated on the complications that could occur. He droned on and on about nerve injuries, delay in or failure of bone regeneration, muscle contractions, and premature bone consolidation. These were real concerns, of course: the hope in bone-lengthening surgery— not the guarantee, as I was often reminded— is that after the bone is broken and stretched apart, the body will fill in the gap. But I’d heard this about a million times before. After a while, his words began to fade and run together. His mouth was still moving, but it was like Charlie Brown’s teacher talking in the cartoon, and all I could hear was unintelligible, garbled noise. I was so fixated on the liberating possibilities that I was more than willing to gamble for what I wanted.

  Back then, bone-lengthening surgery was still considered to be radical. Not many doctors knew about it in the mid-’90s, and if they did, they didn’t want to perform it since the procedure had not been perfected.

  I couldn’t care less. Dr. Shapiro agreed to perform another round of lengthening on me, but he was very clear that he would not go beyond the recommended three inches. It was that or nothing. For me, going through so much pain again for that little wasn’t worth it. He left me with no choice. Mom and I said good-bye.

  The next day, after eight hours of school and homework, she and I sat down at the kitchen table to have a snack together and discuss other doctors who might be able to perform the surgery the way I wanted it. There was Dr. Paley in Baltimore, whom we’d met with when I was little, but since he hadn’t been the right fit for the first round of lengthening, we knew we had to look further.

  “I was talking to Linda Johnson the other day during lunch,” Mom said over our string cheese and apple slices. Linda was her friend at UMass who was also a pediatric nurse. “She asked me how you were doing and if we were still going forward with lengthening.”

  “What did you say?” I asked eagerly.

  “I told her we were looking for a new doctor. She said we have a new surgeon at UMass, a Dr. Mortimer, and he does lengthening. He’s from Montreal. Want me to make
an appointment?”

  I dropped my snack and stretched my arms out toward her.

  “Yes!”

  A couple of weeks later, Mom and I hit the road in her Jeep Cherokee, taking in a pink-hued sky as the sun began its slow nightly descent. As we coasted down the Massachusetts highway, with inexplicably little traffic, toward the UMass Medical Center, I felt like it was perfect timing for a new beginning. In my mind, we were literally driving toward my future.

  The meeting with Dr. Mortimer meant so much, and it would determine even more. If it went well, I’d be that much closer to the sheer freedom of driving without leg extensions wired into my dream car. To shopping in clothing stores that weren’t geared toward little girls, to throwing away my short, frayed jeans, and to ditching that damn stool.

  “What are you thinking?” Mom asked as she drove. Her hands were steady and calm on the wheel despite the seriousness of the meeting awaiting us. She glanced over at me, waiting for my response, but I didn’t know how to answer. My heart was racing as I daydreamed about what could be my new reality.

  I glanced down at my feet, jutting out just barely beyond the edge of the seat in our Jeep. Closing my eyes, I imagined the pressure under my ankles from the edge of the car seat disappearing. I envisioned my knees stretching over the seat edge, feeling the weight of my feet as they dangled below me.

  “Nothing much,” I told her.

  By the time we were seated outside his office, the wait had become unbearable. All sorts of scenarios danced around in my head as I imagined our meeting. What if he said no like Dr. Shapiro? I couldn’t think of any other options. Then again, he could say yes. . . .

  “Nervous?” Mom asked.

  “Anxious,” I replied. I fidgeted and shifted in my chair as she perused the pamphlets on the wall. The hard plastic edge of the seat dug harder under my ankles and created a throb that matched the growing beat at my temples.

  “I just want a yes or a no, know what I mean?”

  “Don’t give him a reason to say no,” Mom replied. “Be confident and be yourself. You’ve been through it before. You know what it’s like and what’s to be expected.”

  “That wasn’t enough with Dr. Shapiro.”

  “And if it’s not enough with Dr. Mortimer, we keep looking,” Mom said and then paused. “Don’t have a defeatist attitude.”

  “What’s ‘defeatist’ mean?”

  “It means you’re defeated before you even begin. How bad do you want this?”

  My gaze wandered down the hall. A few seats away from me, a mother held her baby girl with a smile, nuzzling the baby’s rosy cheeks with her nose and kissing her tiny forehead. A large diamond ring on her left hand caught my eye as she turned to her older child, a boy of about eight who had a long cast on his leg. It was decorated from toe to thigh with friends’ signatures and funny drawings, and the boy and his mom were giggling together. I imagined he was there to get his cast removed. Maybe he broke his leg while playing sports.

  “Bad,” I whispered just loud enough for my mom to hear me. “I want this bad.”

  “Good. Remember what your Papa says: ‘All or nothing.’”

  I looked away from the family down the hall and repeated my mother’s words.

  “All or nothing.”

  Fight was in the Pryor blood. I always tried to make that family characteristic my own.

  Then he emerged. I was finally getting a look at Dr. Mortimer.

  I was instantly struck by how young he looked— far too young for all the experience my mom and I had heard about. His face was smooth— I couldn’t detect a single wrinkle— and he smiled with a slightly rebellious air about him. With his curly, reddish hair and slim frame, he looked like a Canadian Doogie Howser, I thought to myself, stifling a smile. He looked nothing like what I’d expected. It was almost as if he could hardly believe he was an acclaimed surgeon himself, because he didn’t wear the usual white coat, or even a conventional suit and tie. Instead, he wore a plain button-down shirt and insisted that I call him by his first name, Errol.

  It was going to be a good meeting.

  His office was different from the others I’d seen. There weren’t certificates and awards hung neatly on the walls. It was messy and jumbled and I was practically climbing his cluttered walls with impatience. I needed an answer to my question: would he operate on me?

  Errol began by talking about his work and his philosophy about bone-lengthening surgery. He spoke simply and didn’t intimidate me with the big words and medical jargon I had come to expect. I sat in the center of the room in a wheelchair provided by the hospital since walking the halls was too much for my small stride. I kept switching my position from upright and attentive to slouched and antsy. Errol sat on a chair in front of me and never asked me why I wanted to have surgery. He never asked me to consider my decision a bit longer and then get back in touch with him. Instead he simply asked, “How are you doing?”

  As soon as he finished his question I was off and running on a tangent of my own. When it was my turn to speak, I made my timeline clear: I wanted to get the procedure over as quickly and as effectively as possible. I wanted to graduate with my class, and I wanted to walk across the stage to get my diploma.

  When his facial expression changed from soft and congenial to stern and stiffened, I gripped my seat and feared the worst.

  “Do you understand the complications that can result from this surgery?” he asked somberly, looking me right in the eye.

  “Yes,” I answered honestly.

  He leaned back a bit in his chair, seemingly relieved. “They should be expected. The problems that we can fix, we’ll fix, without a doubt. It’s the problems that we can’t fix we want to really consider before going forward. The more we anticipate, the more of an upper hand we’ll have.”

  Errol spoke as if he were drafting some sort of battle plan, as if already he had agreed to do the surgery, at least in his mind. Then the moment of truth arrived.

  “How much length were you thinking?”

  I smiled. “How much do you want to give me?”

  Errol’s eyebrows scrunched together, and suddenly I was nervous again. Perhaps I went a little too smart-ass with my answer.

  “Well,” he said, carefully measuring his words, “the apparatus is usually set in increments, and then it locks once it reaches the limit that we place on it.”

  “What if we didn’t put a limit on it?” I asked, saying a silent prayer that he wouldn’t dismiss me from his office right then and there.

  Errol’s eyes widened a bit.

  “I want to determine my own limits,” I continued.

  “You know, gaining three or four inches is better than good; it’s wonderful.”

  “Yeah, four inches is great, but it’s not what I want.”

  “What exactly do you want?”

  I paused, trying to figure out a way to make him understand. Errol sat back patiently, his eyes still locked on me. That was what I loved about him— he let me speak, and he treated me like an adult. I knew I had to tell him what I wanted without acting like an emotional child.

  “Do you know what four inches feels like?” I asked. I wanted him to know I was a veteran and not going into all of this blindly.

  He shook his head no.

  “Four inches was more pain than I ever thought possible the first time I had surgery. Every night, I felt the muscles in my legs twitch and jolt and bang against me from the inside out. It was horrible, and while I was doing it, I swore I never wanted to feel that much pain again. But now I know that I need to do this again. I also need it to be worth all that pain.”

  There was silence. I don’t think he or my mom had expected my response. I didn’t really expect it, either.

  “All right, I’ll make you a deal,” he said.

  My attention was undivided.

  “I’m going to need your help,” he continued, shooting a glance at my mom. She nodded, inviting him to continue.

  “I won’t put
a limit on the apparatus,” he began, and my eyes immediately began to well up with tears. “But Tiffanie, I have to trust you here. You have to work with me. We have to work together on this. The more we stretch, the more pain you will experience and the more you run the risk of all those complications you hate hearing about. I need you to tell me when you can’t take it anymore. I need you to promise to be honest with yourself, with your body, and with me. Can you promise that?”

  “I promise,” I said quickly, my voice cracking with joy.

  “Even if your personal limit is only another four inches, will you still tell me you have had enough?”

  “I will.”

  “Two inches?”

  I paused. Two inches? What a horrible, cruel joke! He was crazy. Not while I’m in control, I thought. No way in hell would I accept only two inches!

  “I promise.”

  He smiled and reached for my hand. “Deal.”

  I stared at his hand for a moment. This was it? We just made the deal? I looked at Errol, who was smiling. I realized I’d been holding my breath. I exhaled and smiled, too. It was just us, and we had come to an agreement. It felt so grown-up. I shook his hand and thanked him, ecstatic to be one step closer to my goal. I cried silently, feeling the tears roll down my cheeks as my mom, who had been silent thus far, let herself cry, too, as she shook Errol’s hand.

  From there, we talked specifics of the surgery. It would be similar to the one I had undergone as a child, with the pins drilled into my broken bones. Again, I’d turn the pins a quarter millimeter, four times a day, for a total of about an inch in added height per month. Because of the amount of height I wanted this time around, Errol would use a different technique called the Ilizarov method, in which multiple wires would be strung through the bones in my feet, around my tibias and fibulas, and then connect to the metal halos that would encircle my legs. The wires would act like bobby pins, holding the small bones in place. A thick, heavy nail would also be drilled through each of my heels.