Dwarf: A Memoir

by Tiffanie Didonato

  I released the air I was holding in. It came out like I had a hundred flaming birthday candles in front of me. Then I pushed the walker forward a bit. I lifted myself again and swung my legs forward.

  I didn’t want to cry out in pain for my dad to hear.

  My mom had calculated that the bathroom was about fourteen steps away. The toilet, my goal, was twenty steps away. I had only done two steps, and already the sweat was gathering all over my body. I wanted to quit.

  I had eighteen more steps to go and eighteen more reasons to hate my life and regret my choice to have surgery.

  But I lifted and swung again.

  Again.

  And again.

  Then I had to sit.

  Mom hurried over with the small black desk chair where I used to do my homework. When I sat, I looked back at the couch and at the distance I had just created. Through the hot tears burning my eyes, I saw that my undertaking was nothing more than baby steps. But I also felt like I’d taken a massive leap away from weakness, and that made me smile. Suddenly, those horrible remaining fourteen steps became fourteen reasons why I needed to keep going.

  “I’m going to the toilet,” I said without hesitation.

  “All right,” my mom responded. “We’re going to the toilet.”

  I grabbed the walker once more, pulled myself up, and stood. The shock of pain returned.

  New things began to hurt. My back muscles seared. My shoulders pinched, and the palms of my hands felt raw from holding the walker so tightly. More frustrating than all the pain, though, was the tingling in my bladder.

  More tears gathered in my eyes and fell down my face. They blended with the beads of sweat sliding down my cheeks. But I never cried out loud. I pushed the walker forward. Then swung through. Over and over I did this, creating a rhythm.

  I inhaled, leaned on my hands, lifted my body, and swung forward. Then I lowered myself down onto the ground, exhaled, and pushed the walker.

  I inhaled and started all over again. All the while, my mom remained silent. There was only the sound of my struggle. Each time I placed a foot on the floor, the wires pulled at my flesh. I glanced down and saw the skin rise up the wires when I put weight on my feet, then slide back down as I lifted. It stung and burned with every inch.

  I swung, lowered myself back to the floor, and exhaled.

  My skin tore and rose in little shreds back up the wires and my bladder felt like it was filling up with rocks as my gut extended outward.

  “I really have to go!”

  “Squeeze!” Mom replied.

  I couldn’t squeeze my legs together with the metal halos in the way, so I sucked in my belly and pressed on. Somewhere between the pain and the hatred for my body, I had entered the hallway and stood in the bathroom doorway. I was almost there.

  I picked up the pace as best I could. I could feel my heart racing with anticipation and hope. Happiness, too: I could finally see the toilet! There it was, ready for me: sweet relief, a goal, and a huge accomplishment. That toilet was my proof that I could win any personal battle.

  I somehow managed to move even faster. My adrenaline kicked in as drainage leaked out of the wounds around the pins. I could feel it seeping out and spiraling down the backs of my legs. I didn’t care. I didn’t want to acknowledge anything— not even the tiny bloody footprints I was making on the tile.

  “Am I supposed to leak this much?” I asked my mom while looking straight ahead. I felt more warm fluid come down my inner thighs. A lot more.

  She didn’t respond. She just placed a hand on my shoulder, as if telling me to stop.

  Puzzled, I looked down.

  I had peed all over myself.

  My mind kept telling me I could hold it a few minutes longer, but my bladder had given up. My shins were too numb to feel it, but my heart certainly did when I looked down to see my light pink boxer shorts turning a deep shade of purple. I was so close. I could lean forward and touch the rim of the toilet seat. I could kick it if I had the strength to raise my leg. I was that damn close.

  The feeling of stones in my gut dissolved as I stood in my own urine. The puddle collected around my bare feet and in between each toe. I was almost sixteen years old and I had just gone to the bathroom all over the floor.

  “It’s sterile,” my mom said reassuringly as she rushed to grab some towels. “What goes in must come out, honey!”

  I didn’t care. I was mortified, and so angry with myself. How the hell was I unable to make it to the toilet on time? I was almost sixteen! A sixteen-year-old who wet her pants. What was wrong with me? The surgery, the pain, the pins— there was no justification for what went down. I simply should have made it.

  That was when I let myself cry. My tears fell to the floor and my grip on the walker loosened. My feet began to slide out from under me and my courage and will felt like they were slipping away, too.

  I screamed as I started to fall. The tile was so slippery and I barely had the ability to put weight on my feet to begin with. I struggled to pull my legs back under my body. My feet dragged against the tile floor, pulling my skin even farther from the wires. I looked down to see blood leaking into the mix. Little girls are supposed to be made of sugar, spice, and everything nice. That day I saw what I was made of: sweat, blood, tears, and urine. My days of innocently playing with my Barbie in her frilly white wedding gown were over. It was nothing but piss and vinegar for me now, and stained purple shorts.

  “Lift up,” Mom said. She was so calm. She helped lift me as much as she could.

  “Use your arms and lift up your body so I can get the towel under you. Just stand on it, honey; you won’t slip.”

  I closed my eyes as she used another towel to dry my legs, gently patting in between the wires. She pulled down my soaked shorts and I lifted myself up again, barely, as she slid another towel under my feet. I kept crying and tried to turn back around and head toward my bed.

  “Where are you going?” Mom asked.

  “I . . . already . . . went,” I gasped, crying harder now.

  “No. You said you were going to go to the bathroom, and you’re going to do it.”

  “I want to go lie down.”

  “Are you crying?” my mom asked me. She was on her knees wiping up the mess, but she lifted her shoulders to face me. “Are those tears?”

  “I already went!” I shouted, hysterical and uncooperative.

  “You do not cry!” Her voice deepened like those of the drill instructors we’d admired on base years before. “Get angry!”

  “What? Stop screaming at me,” I whimpered.

  “Stop your crying! You said you were going to walk to that toilet and you’re going to walk to that toilet. You have two steps left!”

  “It’s all over the floor!”

  “You have two steps left, God damn it! Take them!” She screamed louder than I did. “Take them! I know my daughter. I know you can do it!”

  I didn’t know what to say.

  “It’s only urine,” she shouted. “Do you hear me? Get angry and take those steps!”

  You can take the officer out of the military, but you can’t take the military out of my mom.

  Just then, I heard the front door close and my father walking back into the house. He’d obviously heard all the yelling.

  “What’s going on?” he shouted, and I heard him walking toward the bathroom.

  My mother reacted without missing a beat.

  “Nothing! Mind your own business!” she shouted, and she slammed the bathroom door shut. I may have been in a seriously embarrassing predicament, but I still deserved to keep my dignity, and my mother saw to it that I kept it.

  She was trying to distract me from the scene. She was trying to make me tough, to thicken my skin. She was building me up from the pit into which I wanted to fall. It worked. I cannot thank her enough for that.

  So I stopped crying. I gripped my walker again, and with every ounce of strength I had left, I took the remaining two steps to the toile
t. Then I sat down on it. I’d finally made it— more or less.

  When my mom finished cleaning up my legs and feet, I reached back my hand and flushed the toilet anyway. It was my victory siren. I flushed away the entire ordeal. I actually smiled as I let the whole experience swirl away down into the sewer. Somehow, it sucked away all the embarrassment and left me with a sense of accomplishment, pride, and total relief that it was all over with, and I could go back to my bed on the couch and relax. Until the next time I had to use the bathroom.

  “Gerry!” my mom called. “Come help her, please!” She opened the door and stuck her head out to make sure my dad was on his way.

  He’d never left the other side of the door.

  “You did enough for now, Tiffie,” Mom said.

  I happily let my father reach under my arms with one of his, tuck the other underneath my thighs, and carry me back to the couch. It never felt better.

  Everything finally became weightless.

  I napped until two thirty that afternoon and woke up to the phone ringing. It was Mike, and he could tell right away that I had been through an ordeal.

  “What’s up?” he asked in that caring, wonderful voice.

  I told him. I told him everything.

  “But you did it, right?” he asked.

  “Um, no. I went on the floor,” I replied simply.

  “Don’t care about that. You did it, right? You made it?”

  “Well, yeah, but—”

  Mike interrupted me. “So what’s the problem?”

  “I don’t think you heard me. I said I peed all over myself. I peed on the floor, Michael.” I didn’t expect him to dismiss it all so easily. But Mike just didn’t care. Part of me wanted his sympathy.

  But Mike wouldn’t be the one to give that to me. By not showering me with sympathy, he was refusing to acknowledge what made us different.

  He was just my best friend, calling to hear about my accomplishment of the day.

  CHAPTER 9

  You’re Gonna Be the One That Saves Me

  Mike in the limo at my sweet sixteen birthday celebration.

  THE DAILY ROUTINE I dreaded most during the bone-lengthening process was pin care. Not even the constant physical therapy was worse, because once I was pumped up to stretch or do range-of-motion routines, my blood scorched through my veins and empowered me to work.

  Nothing pumped me up for pin care. With more than a dozen pins protruding from my legs, I had to clean them— every single one of them— twice a day.

  It not only hurt, it was messy and irritating and tediously repetitive. The process took about forty-five minutes each time. First there was the task of gathering supplies from the linen closet: a blue absorbent pad, sterile saline, a plastic presealed cup, quarter-sized octagon-shaped sponges, sterile cotton swabs that looked like giant Q-tips, and hydrogen peroxide. Then there was the prep work.

  First I filled a cup with saline. Next my mom lifted my legs and placed the pad underneath them to catch the liquid that would inevitably roll off, and the big Q-tips went into the cup. Then we had to remove all of the little octagon-shaped sponges that were anchored around each pin from the night before. It was painstaking. Worse yet, some of the sponges dried to the pin sites, like clingy stubborn little squeegees, wrapped around the pins. There was no choice but to rip them away. Pin care was a necessary evil. There was just no way around it. Eventually, I found a way around some of the sticky scenarios. Ever a control freak and insistent on doing things myself, I poured hydrogen peroxide over each pin and let the mini sponges absorb it until they were too soaked to stick. The cold peroxide made my thigh muscles rise up and flex around the pins— which was almost as painful as a muscle spasm. This was only the beginning. Each pin took four Q-tips. I dipped each swab into the saline and wiped away any scabs, making sure also to push my skin gently down and away from the pin. Twice a day I was a living, breathing, barely walking maintenance machine. And I bitched and moaned, winced and clenched my teeth the whole time.

  Coping with pain in my house meant one of two things. If you could fix it, you did so and moved on. If you refused to fix it, you were on your own. “Suffer, then!” Mom would say— the choices were to suffer or fix it. Given those two options, I did my best to “get a straw,” as Mom was so fond of saying, and suck it up.

  While going through the tedious motions one day, a TV ad for a car— a BMW Z3— caught my gaze and wouldn’t let go. The car was beautiful, sexy, and intriguing. The driver looked carefree and limitless. It was the greatest thing I’d ever seen on television. Everything about that vehicle exemplified independence and I desperately wanted it.

  “DiDonato. Tiffanie DiDonato,” Dad teased in his best James Bond impression. “The ultimate driving machine,” he said, smiling. A car fanatic with a ’66 GTO and a Corvette of his own, Dad found it particularly amusing that his daughter, who never expressed an interest in automobiles, had somehow managed to eye one of the most expensive ones out there. I think it made him proud.

  What’s more, that little roadster opened a whole new realm of motivation for me. It blew me away. As I turned my pins, I visualized myself driving it. Day after day, I became one millimeter closer to reaching its pedals. I wanted more motivation to keep pushing through my rehabilitation. I requested free catalogs from clothing retailers like Girlfriends and dELiA*s. My parents even allowed me to order a few outfits. I hung them on the bathroom door or in our dining room entranceway. While I continued to struggle with walking to the bathroom and the sensation of my skin rolling up and down the wires, I pushed the feeling away by imagining what the material would feel like on legs longer than the ones I currently had. That November, I was approaching my first full one-inch mark— and my sixteenth birthday. Suddenly, the same clothes that compelled me to work hard became visual reminders of what I couldn’t wear.

  My body wasn’t capable of celebrating much of anything yet. But Mike disagreed. Over the course of several phone calls he began his campaign to sell me on a sweet sixteen celebration.

  At first, Mike was subtle and cute in his efforts.

  He would call me and play Oasis’s “Wonderwall” on his guitar. I always closed my eyes during the line, “’Cause maybe . . . you’re gonna be the one that saves me,” thinking about how much comfort Mike brought me by just being there. Then the birthday badgering began. “What do you have planned next week?” he’d asked casually.

  “Nothing.”

  “I think it’s someone’s birthday next week, too, but I forget who . . .”

  “Oh? Sounds like a problem you have there.” I played right into his little game, just as I always did.

  “If it was your birthday next week, what would you want to do for it?”

  “If it was my birthday, I would do nothing.”

  “Nothing?” I could tell he was gearing up to jump down my throat. “Tiff, you can’t not celebrate your sixteenth birthday!”

  “I thought you forgot whose birthday it was,” I said with the slightest giggle, holding the phone close to me.

  “And I thought you’d want to do something cool.”

  I glanced at the Girlfriends catalog on my hospital table and felt a pang of envy over the teenage model looking so carefree and happy in her brand-new outfit. She was ready to party. I was not.

  “Well, my ball gown is still at the cleaner’s. So naturally that puts a damper on my exciting plans,” I joked.

  “Do you always have to be a wiseass?”

  “It’s better than being a dumb-ass.”

  “Tiff, seriously.”

  “Mike”— I matched his serious tone— “I am serious. Last week I pissed my pants, my appetite isn’t fully back yet, and I’m stuck in plus-size men’s boxers instead of pants.”

  “Excuses, excuses,” he scolded. “You can’t just sit in that chair for your birthday.”

  As the week passed, Mike started to get more aggressive with his approach over the phone.

  “Decide what you want to do fo
r your birthday?” he asked.

  “I want to relax,” I insisted.

  “Why?”

  “How am I going to do anything else?”

  “Who cares how you do it, just do something that doesn’t involve the recliner.”

  “I don’t want to. I’ll be happy staying home.”

  “Your mom wants to go to dinner, I bet.”

  “I’m sure she does.”

  He paused before speaking again, this time as if he’d uncovered a hidden secret.

  “Oh, I get it. You’re afraid to leave the house.”

  “What?”

  “I don’t believe it. Tiffanie DiDonato is a chicken shit.”

  “I am not!”

  “And you’re selfish. Your parents probably want to take you out, and you’re saying no.”

  “Shut up. You’re being mean.”

  “Nope. I’m being honest. And I’m right. I’m right!” He was practically screaming.

  “No, you really aren’t.”

  “You won’t leave the house because you’re afraid! You don’t want people to see you! You think you’re hideous!”

  “Mike, stop!”

  “Stop being a scared little bitch!” Subtlety, with Mike, often found itself leaping out the nearest window.

  “Stop yelling at me!”

  “Accept yourself!”

  Then there was silence.

  “You’re going to let the fear of other people prevent you from doing shit. This is what started the whole surgery idea in the first place,” Mike began again.

  “You have it backwards.”

  “I thought this procedure was supposed to help you.”

  “It is!”

  “It’s keeping you in the house.”

  “I have metal pins and nails in me, Michael!” I was angry now, raising my voice in a way I never had with him before. “I can’t even lift up my legs!”

  “So?”

  “Mike, what the hell do you want me to do?” My eyes watered with frustration.

  “Prove this surgery is working.”