Dwarf: A Memoir Read online

  You may be little, you may be short, but I love you, because you’re mine, Mom always sang.

  I was five pounds, four ounces when I made my easy entrance into the world on November 12, 1980. “You were two poops and a push,” Mom says of my birth. I’ve never asked her to elaborate because it sounds really gross, but I’m assuming she means she had an easy delivery and wasn’t in labor for that long. Time and time again, my mother has told me that my arrival was the happiest moment of her life. I was the happiest moment of her life. Even as a small child, I understood that to be true.

  As my mom held me and squeezed my tiny wrinkly hands, my dad left the room and called everyone he knew.

  “You curled your legs up and settled into a little ball on my chest,” Mom tells me. It was such a joyful time that no one noticed that anything was wrong. Yet.

  Once the doctors recorded my stats and gave me a more thorough examination, they noticed my arms were shorter than normal. Then they realized my legs were unusually short as well. That’s when you could say the two poops hit the fan.

  As my mom watched my dad perch proudly on the windowsill after making his rounds on the phone, the on-call pediatrician came into the room.

  “Your daughter has third-degree dwarfism,” she said.

  Then, as quickly as the doctor had entered the room, she turned and exited, leaving panic in her wake.

  “If your father could have fallen out of that window he would have, but lucky for him, it was closed,” Mom says every time she reflects on that day.

  My parents were silent, contemplating many questions that neither one of them could answer. What was dwarfism? How severe was third-degree dwarfism? Was that like third-degree burns? Would the condition get worse?

  No one knew.

  No further explanation was provided.

  The next day, the doctor’s confusing diagnosis still loomed over my dad, intensifying his new fears about having a disabled child. He relayed the news to his parents. In a conversation filled with fear, ignorance, and panic, a suggestion was made behind closed doors.

  Give the baby up for adoption or get a divorce.

  Turns out, there is actually no such thing as “third-degree dwarfism.” That was just a generic way to refer to the fact that I was born with a disorder that caused short stature and unusual bone structure. The diagnosis of diastrophic dysplasia would come much later.

  But the damage was done.

  And with the two options presented to her from my dad’s conversation, Mom made her decision without a moment’s hesitation. Divorce.

  Over the course of about six months, she moved us out of my dad’s apartment in Webster, Massachusetts, and into a place of our own. Together, just the two of us, Mom and I settled into the tiny, two-bedroom apartment she’d rented in a Cape-style house. She describes it as bright, sunny, and painted yellow— despite the sadness of the divorce, it was a happy little home. Mom made sure that it was. At the time, she was working for a big computer company in the same town. She went to the office from seven a.m. to three p.m. while I went to KinderCare. At dinnertime each night, she sang me her little tune.

  You may be little, you may be short, but I love you, because you’re mine!

  Such was our life early on. My mother didn’t think about being a single parent to a child with dwarfism; it was just Mom and Tiffie. But before long, the phone calls began.

  Dad called her over and over, describing the nightmares of a life without us that haunted him. He said that he saw my eyes every time he went to sleep. Life without his little girl was too much to bear. This story always reminds me of Scrooge and the three ghosts— I picture my dad alone in bed, being visited by the ghosts of his Past, Present, and Future.

  First, I imagine him traveling back in time to the night he met my mom at the Driftwood, a popular club in Northborough, Massachusetts, in the ’70s. Mom went to the Driftwood with her friend Debbie every Friday night when she got off work. In the beginning, she didn’t even like my dad. She thought he was rude and annoying. But as the Friday nights went by, she warmed up to his odd sense of humor and his classic ’70s mustache. Before long, they were riding his Harley up Mount Wachusett together and planning their future.

  Next, I picture my father dropped back into the sadness of the present situation shortly after my birth. He’s all alone and left to think about life without the family he helped create. Finally, I see the third ghost hovering over him with images of the future cutting through the darkness of his lonely apartment.

  Dad needed us back in his life, he told Mom, and he asked her for the most difficult gift anyone can give: forgiveness. For that, I’ve always thought of him as the bravest man I know. In turn, Mom found her own hidden virtue, and she forgave him. But she would never forget.

  I may have been little. I may have been short. But I was loved, because I was theirs.

  When the April showers of 1981 had passed, May’s flowers sprang up all around a little three-bedroom ranch in Douglas, Massachusetts. It was short on curb appeal, but the property held just enough beauty to pique my mom’s interest. The house had a happy, bright feel, and it was painted yellow like the color she loved so much in our old apartment. It had no porch— just three drab concrete steps to the front door— and a steep driveway, but to Mom it had all the makings of our first real home.

  We moved in right away, even though there was no refrigerator, washing machine, stove, or dryer in the new house. Mom had only a tiny cooler for my milk and juice and a countertop toaster oven where she prepared meals. My parents’ relationship gradually fell back into place, as did the necessities. Dad was still living in Webster at the time, but he saved every quarter, dime, nickel, and penny in his Folgers coffee cans until he had enough to buy my mom her first refrigerator. The washer, dryer, and stove came later, along with the jungle animal decals that decorated the walls of my room. Everything my dad did back in those days was penance for what had happened shortly after I was born.

  As the weeks went by, Dad remained devoted to taking care of me and to making our lives easier. And that did more than just ease the incredible guilt he lived with (and still does today)— it allowed Mom to pursue her dream of becoming a nurse. Shortly after reconciling with my dad, Mom enrolled in nursing school at the hospital where it all began.

  I had been far too young to remember my parents’ nearly failed marriage, and while I was aware that I never saw one of my grandmothers, my parents never made a big deal out of it. But when I was five, something shifted, and gifts began arriving at my house.

  At first I didn’t realize they were for me. I thought they kept coming to the wrong house, since they always got sent back. But, oh, was I jealous of the kid who got to keep them!

  Every week there was something new. I’d wake up in the morning and shuffle out of my bedroom, peeking around the corner to see what new doll, stuffed animal, or toy had arrived. I walked with an unusual gait as a child, just as I had as a toddler, and was a lot slower than other kids my age. I noticed this, but my parents never said anything about it to me, so I didn’t regard it as a problem.

  Just as quickly as the gifts arrived, my mom would insist that my dad take them away. I always wondered where he was going with them. Was there a secret store? Was he bringing the toys to someone else’s house? I wanted to go, too. I always hoped I’d be allowed to get in the car with my dad and see the home of this very lucky little girl.

  Mom tried to shield me from the presents. But I often saw them before they were sent away. And even though I didn’t actually get to play with the stuffed animals and toys, I loved them just the same.

  One day, I noticed that two Cabbage Patch dolls had arrived in the dining room. They were twin boys, and the sight of them in their yellow overalls with their curly, yarn-loop hair was almost too much for me to bear. As I pined over the dolls, taking in their sweet features from a safe distance, my parents were locked in an argument in the kitchen. Dad was pleading with Mom to let me keep the gifts. />
  “She’s trying to show she’s sorry! She’s admitting she was wrong,” Dad said. “I don’t understand. Why won’t you won’t let Tiffie have the gifts?”

  “I cannot be bought,” my mother responded in a growl. It scared me to hear her use that voice. It reminded me of a monster. “Your daughter cannot be bought!”

  Mom demanded that Dad send back this latest round of gifts, just as she always did. But this time, I couldn’t allow him to do it. I loved them too much. The Cabbage Patch twins were different from the other presents— they were wearing overalls, just like I did, and they had bibs with tiny pockets. I pictured myself taking care of the twins and, when they were good, buying them tiny trinkets from the toy store, like my dad did for me, and tucking the treasures inside those small pockets for safekeeping. I simply had to have those dolls.

  So I dashed out from the doorway and headed straight toward the twins, screaming with happiness.

  “They’re for me!” I cried out. “Please don’t take them! Please!”

  No one said anything.

  Wildly, I looked from one parent to the other. “Who are they from?” I asked.

  My mom looked like she’d been slapped in the face.

  “Do you understand why now, Gerry?”

  My dad nodded. Finally, he answered me. “They’re from me, pumpkin pie,” he lied.

  These were the last gifts ever to arrive. And the only ones I was allowed to keep from my grandmother Pauline.

  CHAPTER 2

  Move Over, MacGyver

  Striking a pose at my aunt Jean’s pool, age six.

  ISPENT A SIGNIFICANT PART of my childhood molding myself into the epitome of self-sufficiency: I turned into a mini MacGyver. At age five, I trained my eye to spot random household items that could serve beyond their original, singular functions to help me live my life. I would have made MacGyver proud, too, since the tools I used were no more complicated than a pair of salad tongs.

  For a while, I hardly knew there was a difference between me and the other children. None of my friends could reach the bathroom sink or successfully navigate their way through heavy doors, so there was nothing outstanding about me there. But as my friends got older, they also grew taller and started reaching things I couldn’t, like light switches and door handles.

  Still, I never felt disabled. I never felt held back by my body, merely challenged. Every obstacle became a game, and I always wanted to win. With each daily challenge my mind expanded. Though my stature didn’t change, I grew more creative. Maneuvering through my days, I manipulated chairs into ladders and used them to reach clothes in my closet, to see out the window, and to reach the dials on my dad’s stereo system and the Disney videos on the middle shelf of the entertainment center.

  The most important piece of weaponry in my early battles with dwarfism was a pair of seriously versatile salad tongs. With them, I could reach, grab, and squeeze. I could push off my socks and tug my underwear away from my ankles and up my thighs. I could hook and pull just about anything. I could also do what many would never consider to be a problem. With tongs, I could accomplish what average-size people understandably take for granted.

  I could grip toilet paper and wipe myself.

  I had no idea what others struggled with in the bathroom, and no one in my family pointed out that using tongs to wipe was something out of the ordinary. I simply did as many others with dwarfism must do. Since my short arms would not allow me to reach my private areas with my hand, I adapted. I could wait for someone to clean me (as my mom did for the first several years of my life), find a creative way to do it myself, or worst of all, skip wiping entirely. The choice was a no-brainer.

  We all do things that we aren’t proud of in war.

  An average pencil served as my lance to hit various light switches around my home. Turning them off, however, was more difficult and required a separate device. A spatula worked fine. If that wasn’t available, I just left them on.

  A towel, if my dad was lazy enough to leave one on the bathroom floor, served as a net. With a swing or a slap, I could trap just about anything and drag it toward me.

  My mom’s cookbooks rarely stayed on the lower bookshelf in the living room where she housed them. Instead, I stacked them in front of the sink so I could wash my hands. Each How to Cook hardcover, Chicken Made Simple bible, and Julia Child masterpiece could be pushed across the tile floor with ease. They piled nicely against the bottom kitchen cabinets, forming makeshift stairs.

  Countertops became platforms on which I stood to reach bowls, cups, and plates. My favorite one, a white porcelain soup bowl with an oversized flattened handle, was always stacked on the second shelf in the upper cabinet. Like an acrobat, I perfected the art of balancing and bending and, with careful manipulation, I could grab that soup bowl like any other. I felt like a treasure hunter.

  “Jesus Christ!” my mom once screamed when she found me atop the counter during the hunt. “You’ll break your neck! What are you doing?”

  “I want cereal,” I replied simply.

  “Why didn’t you ask me to get it?”

  “Because I can do it,” I said, almost offended that she felt the need to ask. She knew me better than that.

  It was during times like these that she was thinking about her father, my “Papa,” who had very strong beliefs about the way I should be raised.

  Papa— Robert Pryor— always reminded me of Popeye the Sailor, but with ice blue eyes like his favorite singer, Frank Sinatra. Papa did not have a single tattoo, nor did he smoke from a pipe, but he was a navy Seabee who was strong, full of pride, and honest (sometimes too honest)— when he spoke, his voice commanded the room. My mom followed in his footsteps. Other people’s opinions simply didn’t matter to my mom and Papa.

  Whenever he would visit, Papa always told my mother how important it was for me to do things myself. He wanted me to be independent and to be treated like any other kid. This, he believed, was the key for me to live my life to the fullest. Inspirational articles about overcoming adversity arrived in the mail from him every week. My mom remembers with particular fondness one about a baseball pitcher who had one arm. Don’t treat her like she’s different, Papa would write on little notes with the articles.

  “Well,” Mom continued, watching me stand atop the counter, “we’re out of cereal, and some other stuff, too. Let’s go to the grocery store.”

  I hopped down with a big smile, because going to the grocery store meant doing what none of my other friends could: riding my bike up and down the aisles. It was an activity that made me feel very, very privileged.

  My mother didn’t treat the bike like any sort of treat. It was simply a functional choice, like many of the decisions she made so matter-of-factly for me. I couldn’t walk long distances, so I rode.

  Our local grocery store, Phillip’s Market, wasn’t nearly as big as the Harris Teeters of today. We had the same shopping route through the small grocery store each time. I’d pedal my pink bike past the Kool-Aid, the Coke, and the little plastic barrels of rainbow-colored drinks, eagerly reaching for them. “They’re nothing but sugar water,” Mom would say, guiding me away. I always hoped that she’d change her mind on our next shopping trip.

  Occasionally, as I casually steered my way through the store, I’d get an awkward look from another shopper. I figured they were jealous of my little white basket and colorful streamers when they had to use rusted gray metal carts. I had a legitimate mission ahead of me: to seek out and knock all the cookies I could reach into my basket.

  “Don’t go too far,” Mom ordered as I slowly pedaled away from her side. She was busy in the boring vegetable aisle, stuffing broccoli and carrots into clear plastic bags.

  “I won’t. I want to go just over there,” I told her as I bounced on my bike seat and pointed to the next aisle over. Mom nodded and gave me the okay sign with her fingers.

  I pressed firmly on the orange wood blocks that my dad had cut and secured tightly atop the pedals wi
th black thick rubber bands. My legs were too short to pedal otherwise.

  Perusing the aisle, I made a mental checklist of everything I liked before narrowing down the list to Oreos, chewy oatmeal, double chocolate chunk, and ladyfingers. They all tasted great with the milk my mom left for me on the bottom shelf of the refrigerator in a cup with a special plastic lid. The cookies also served as delicious decorations on the little carousel in the kitchen that Mom called a lazy Susan. Just as I was ready to start filling up my basket, I ran into some opposition.

  An older woman, an unfriendly schoolmarm type with tightly wound gray curls and an equally stiff and curled upper lip, stood beside me. She narrowed her eyes and grumbled something that I couldn’t make out. But I got the gist of her gripe— her tone spoke volumes.

  “Awful. Just awful,” she then said, peering down at me. I shrank away and felt scared, worried that I might get kicked out of the store altogether. As quickly as I could, I whipped my bike around. My training wheels wobbled back and forth off the ground as I made the sharp turn to leave the aisle. I didn’t say a word. Instead I fell in line by my mom’s side.

  “Where are your cookies?” she asked.

  “I can’t get them,” I said. I used that word. The word I was told by Papa never to say, but I said it anyway: can’t.

  “All right,” Mom said, skeptically studying my face. I avoided her eyes.

  She kissed my forehead and twirled my ponytail with her fingers. “We’ll get some when it’s time to pass by there again.” I could tell she didn’t believe me, but I kept a straight face and pedaled on.

  Somewhere between the milk and juice aisles, Mom and I crossed paths with the woman. I made every excuse I could not to go forward, but my mom cornered me.

  “All right, what’s the problem? Why don’t you want to go down this aisle?”