Dwarf: A Memoir

by Tiffanie Didonato

  A PLUME BOOK

  DWARF

  TIFFANIE DIDONATO graduated from the University of Massa chusetts at Dartmouth with a BFA in writing and communications. She’s now a weekly columnist for the magazine Encore (encorepub.com) and is stationed with her husband at Camp Lejeune in North Carolina. Visit facebook.com/dwarfmemoir.

  RENNIE DYBALL is an editor at People.com and a longtime writer for People magazine. She has coauthored two books, Christian Siriano’s Fierce Style, and A Famous Dog’s Life with Hollywood animal trainer Sue Chipperton. Rennie is a proud Penn State University graduate and lives with her husband in New York City. Visit renniedyball.com.

  DWARF

  A MEMOIR

  Tiffanie DiDonato

  with Rennie Dyball

  A PLUME BOOK

  PLUME

  Published by the Penguin Group

  Penguin Group (USA) Inc., 375 Hudson Street, New York, New York 10014, U.S.A. • Penguin Group (Canada), 90 Eglinton Avenue East, Suite 700, Toronto, Ontario, Canada M4P 2Y3 (a division of Pearson Penguin Canada Inc.) • Penguin Books Ltd., 80 Strand, London WC2R 0RL, England • Penguin Ireland, 25 St. Stephen’s Green, Dublin 2, Ireland (a division of Penguin Books Ltd.) • Penguin Group (Australia), 250 Camberwell Road, Camberwell, Victoria 3124, Australia (a division of Pearson Australia Group Pty. Ltd.) • Penguin Books India Pvt. Ltd., 11 Community Centre, Panchsheel Park, New Delhi – 110 017, India • Penguin Group (NZ), 67 Apollo Drive, Rosedale, Auckland 0632, New Zealand (a division of Pearson New Zealand Ltd.) • Penguin Books (South Africa) (Pty.) Ltd., 24 Sturdee Avenue, Rosebank, Johannesburg 2196, South Africa

  Penguin Books Ltd., Registered Offices: 80 Strand, London WC2R 0RL, England

  First published by Plume, a member of Penguin Group (USA) Inc.

  First Printing, December 2012

  10 9 8 7 6 5 4 3 2 1

  Copyright © Tiffanie DiDonato and Rennie Dyball, 2012

  All rights reserved

  All photos courtesy of the author.

  REGISTERED TRADEMARK—MARCA REGISTRADA

  LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA

  DiDonato, Tiffanie.

  Dwarf : a memoir / Tiffanie DiDonato with Rennie Dyball.

  p. cm.

  ISBN: 978-1-101-60346-8

  1. DiDonato, Tiffanie—Health. 2. Diastrophic dwarfism. 3. Bone lengthening (Orthopedics) 4. Dwarfs—Biography. I. Dyball, Rennie. II. Title.

  RJ135.D53 2012

  599.9’49—DC23

  [B] 2012009982

  Printed in the United States of America

  Set in Goudy Old Style Std

  Designed by Eve L. Kirch

  Without limiting the rights under copyright reserved above, no part of this publication may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form, or by any means (electronic, mechanical, photocopying, recording, or otherwise), without the prior written permission of both the copyright owner and the above publisher of this book.

  PUBLISHER’S NOTE

  This is a work of nonfiction. Some names and identifying details have been altered in order to protect the privacy of particular individuals. Everything herein is based on the author’s own memories and recollections.

  The scanning, uploading, and distribution of this book via the Internet or via any other means without the permission of the publisher is illegal and punishable by law. Please purchase only authorized electronic editions, and do not participate in or encourage electronic piracy of copyrighted materials. Your support of the author’s rights is appreciated.

  BOOKS ARE AVAILABLE AT QUANTITY DISCOUNTS WHEN USED TO PROMOTE PRODUCTS OR SERVICES. FOR INFORMATION PLEASE WRITE TO PREMIUM MARKETING DIVISION, PENGUIN GROUP (USA) INC., 375 HUDSON STREET, NEW YORK, NEW YORK 10014.

  Penguin is committed to publishing works of quality and integrity.

  In that spirit, we are proud to offer this book to our readers;

  however, the story, the experiences, and the words

  are the author’s alone.

  ALWAYS LEARNING PEARSON

  To my mom, the strongest woman I know.

  I will never stop fighting.

  CONTENTS

  Acknowledgments

  Prologue

  Chapter 1. Third-Degree Dwarfism

  Chapter 2. Move Over, MacGyver

  Chapter 3. Everyone Has Problems

  Chapter 4. Toughening Up

  Chapter 5. Too Small for Texas

  Chapter 6. You’re Obviously a Dwarf

  Chapter 7. No Limits

  Chapter 8. Learning to Walk Again

  Chapter 9. You’re Gonna Be the One That Saves Me

  Chapter 10. Duct Tape and All-Nighters

  Chapter 11. Victories

  Chapter 12. College Girl

  Chapter 13. My Knight

  Chapter 14. Homecomings

  Chapter 15. Admired

  Epilogue

  ACKNOWLEDGMENTS

  DAD, THANK YOU for always viewing me as your little pumpkin pie. See, it’s all worth it. I love you. “Please, sir or madam, will you read my book? It took me years to write, will you take a look?”

  Papa, thank you for your warm embrace, comforting smile, and tears of joy and happiness that morning by your pool. I am grateful to be a DiDonato.

  Dr. Mortimer, I hope you know that I always viewed you as more than simply my doctor. You are a part of my family. I don’t have enough space within this book to adequately thank you for all you have done for me throughout the years. Among the gifts of love, trust, understanding, and compassion, you have also given me a chance to be free. I hope I didn’t let you down.

  Dr. Shapiro, wherever you are, I have not, nor will I ever, forget you. I hope when this book debuts our paths get the chance to meet again.

  To the UMass nurses, thank you for the support to my mom not just during the entire bone-lengthening procedure, but throughout my entire life. You all are too unrecognized for the compassion you give to patients and to one another. You deserve more. I love you.

  Marlborough High School, though I left you and assumed you forgot me, my heart is elated to learn you have always considered and thought of me. For the first time, I can say I truly have Panther Pride.

  Rennie, over the course of working together you have become so much more than my coauthor. You have become my friend, my sister, my coach—my family. With your guidance, I’ve grown a little bit more in this crazy world of ours. Thank you for the great big bowls of laughter and tough love throughout it all.

  Mollie, there are absolutely no words to describe how thankful I am for your undying belief and dedication. I’ve come across so many who have doubted my capability, but you helped me prove them all wrong. You have my trust, my loyalty, and my love, always. Thank you.

  Becky, thank you for not just listening to my story, but for hearing it inside your heart. Just when I think I’ve gained all the inches I can, you give me a platform to stand on. I feel taller than ever.

  Shea Carver, you taught me to “relax and have a cocktail.” You gave me my first chance to be heard beyond the face of my PC. I’m honored to call you my friend.

  Ken Rotcop, because of your persistence, guidance and love, this is a reality.

  Phi Sigma Sigma, Theta Sigma Chapter, you are all responsible for some of the greatest moments of my life. And though I can’t jot them all down, know that without you all my growth as a woman and a sister would have surely been stunted—LITP Ladies!

  Importantly, to my husband, because of you I live a real fairy tale. You are my hero, my knight, and my everything. I’d walk through hell just to hold your hand. Always and forever, I love you.

  Last, but not least, a close
family friend of mine once said, “There is no greater return than to thank the one person who hurt you most, for making you a tougher person.” Ms. Hart, thank you.

  RENNIE DYBALL would like to thank Tiffanie for the privilege of helping you tell your story. You’ve inspired me to appreciate life in a whole new way.

  To our wonderful editor, Becky Cole, thank you for such a fun, rewarding collaboration, and to the team at Plume for all your hard work.

  Thanks to my agent, Mollie Glick, for your endless help, wisdom, and humor each step of the way. Here’s to working on many more books together.

  Mom, you’re the best uncredited editor anyone could ever hope for. Thanks for always listening, reading, and believing in me. John, thank you for supporting me in everything I do—I couldn’t ask for a better champion in my corner. And to my dad: for the killer instinct, for seeing a writer in your crazy little girl all those years ago, and so much more.

  PROLOGUE

  Call Me Tiffanie

  On vacation at York Beach in Maine, age six.

  BELIEVE IT OR not, I actually enjoyed watching Snow White and the Seven Dwarfs as a child. We never owned the video, but it wasn’t because my average-size parents wanted to protect their child with dwarfism. I just happened to love Winnie the Pooh more, so Snow White was just a renter.

  I bring this up because it’s a question I’m often asked. For the record, I never equated myself with Happy, Dopey, Sleepy, or Sneezy. I did get grumpy growing up, but I promise you there was no correlation.

  Another question I get asked a lot is: “Do you see yourself as a dwarf?”

  The answer is no.

  I do not consider myself a dwarf and I never have. The truth is, it never even occurred to me to do so until people used it to define me in high school, and then later insisted I wasn’t a dwarf because I’d changed my body and become taller, but I’ll get to that.

  I don’t like the term “dwarf,” but I do love confronting it and manipulating it to my advantage. It’s a very powerful word and I’ll never run from it. That’s why I put it on the cover of this book. This is my chance to define the word on my own terms.

  While we’re on the topic, I don’t like the word “midget,” either. Not because of the meaning of the word, but because of the way it’s used. The word itself is jagged, meant to prick. “Midget” is often used as a label or, like the word “fuck” or “shit,” to hurt rather than explain.

  So let’s be perfectly clear:

  I am not a Midget.

  I am not a Dwarf.

  Please, just call me Tiffanie.

  I have a condition called diastrophic dysplasia. I’ll save you the trip to Wikipedia: it’s a very rare type of dwarfism that results in short stature, joint deformities, and very short arms and legs. From birth to age twelve, my arms were so short that I couldn’t reach my own ears, or other parts of my body for that matter.

  As a child, I stood three feet, eight inches tall, and I wasn’t expected to grow any more. Today, I am four foot ten, thanks to a set of radical bone-lengthening surgeries I underwent to gain independence. Most people gain just two or three inches from the procedure, but I had bigger plans. It’s not like I had plastic surgery because I didn’t like the way my face looked. Undergoing bone-lengthening surgery was about becoming independent and being able to get from point A to point B in a timely manner, perhaps while carrying some belongings with me at the same time. The body I was born with wouldn’t allow me that simple exercise in freedom.

  For years, I was consumed by visions of what my life could be like after bone-lengthening surgery. I wanted to drive a car without extensions bolted to the pedals. I wanted to shop for clothes that fit my age, not just my body. I wanted to do the everyday tasks that my family and friends did effortlessly, unknowingly taking their abilities for granted. I desperately wanted to take out the trash. Of all things! I fantasized about picking up the burgeoning white bag with the tie top and walking it out to the garage. I dreamed of reaching the fourth shelf in my refrigerator, the faucet, the light switch, and the coffeemaker. I wanted independence, freedom from the tools and devices I depended on for a normal life. And I didn’t think twice about sacrificing to get it.

  When most people think of a dwarf, they might picture those with dwarfism who appear on TV. Many of those individuals, such as Amy and Zach from Little People, Big World, have a condition called achondroplasia. It’s among the most common types of dwarfism (there are actually hundreds of types) but it’s a different condition from the one I have—variations on a theme, really.

  That’s the technical part of it. But the word “dwarf” evokes many other images. I’m not a small, stocky, imaginary being who resembles a human. I don’t like to climb mountains, and I don’t mine or hunt for buried treasure. I am not fictional, or malevolent, nor do I carry an ax or have magic powers. However, there are a few people I’d like to make disappear.

  When I look at myself in the mirror, I see my brown eyes, my thick brown hair, the curve of my mouth, and the crinkle of my nose. If I were to think of myself as merely a dwarf, it would minimize the person I am. And that person is more than a little tired of all these terms people use to define me.

  According to the Little People of America (LPA), a dwarf is someone who stands four feet, ten inches or smaller. I happen to be exactly that height. So does that make me a dwarf? Am I still considered a dwarf if I wear my two-inch heels? What about when I take my shoes off and go barefoot? It’s like I’m morphing—now I’m a dwarf. Wait, now I’m not!

  Dwarf is just a word.

  I, on the other hand, am a woman with ideas, talent, and a sharp tongue. I’m a fighter, a military wife, and an opinionated writer. I’m passionate and ridiculously stubborn, and I have a hot Italian temper. I’m fiery, strong willed, and compassionate. I love to love others, and I love to be loved in return.

  In October 2008, when Good Morning America did a story about my limb-lengthening surgeries, the show’s bulletin board blew up with commentary from perfect strangers. I noticed someone from the LPA awarded me the title of E.L.P., or Extended Little Person. I could barely wrap my mind around that one. Why is it so important to slap a label on me? The whole thing gave me such a headache that I needed some E.R.H.M. (extended relief headache medicine).

  The acronym implied, yet again, that I needed to be categorized, which is ironic, considering that the purpose of the LPA is to declassify, create equal access, promote integration, and educate. After my TV segment aired, I received hate mail from little people and average-size people alike. All of them criticized me for changing my body.

  I just wanted to be able to reach the sink in a public restroom. I wanted to drive a car. I wanted to take care of myself and to do the small, everyday tasks that most people take for granted. Was that too much to ask?

  I realize that by putting my story out for everyone, I have the chance to demystify what it’s like to be a dwarf. But the truth is, there isn’t an invitation-only society or secret handshake. I also understand that, as human beings, we will inherently ask questions about our differences. Some feel the need to classify or label things they don’t understand. I’m not starting a one-woman crusade to stop that.

  Instead, I want to inspire. I’ve been through a lot, and I know that others are facing hardships, too. I’m living proof that the seemingly impossible can be overcome.

  It’s okay with me if you picked up this book because you’re curious about what it’s like to live with dwarfism. But I hope that you’ll take away much more—about freedom, finding independence, and adapting to the world when it won’t adapt to you.

  As of the writing of this memoir, I am thirty-one years old, and I am blessed with more happiness than I could have ever wished for. I am married to my dream man and living life on my terms with the independence I fought so hard to gain.

  Yes, technically, I am a dwarf. But while it might be the title of my book, it does not define me, nor does it precede my name.

  M
y name is Tiffanie. And this is my story.

  DWARF

  CHAPTER 1

  Third-Degree Dwarfism

  At age two with my father at a local amusement park.

  MOST PEOPLE DESCRIBE their earliest memory as merely a hazy recollection, like a scene from a dream that blurs around the edges with time. Mine is no different, with one minor exception— something that I remember with all the detail and clarity as if they were right in front of me, right now.

  The plaster casts on my legs.

  When I was two years old, I underwent one of the first of many surgeries to correct my ill-formed bones. My rare form of dwarfism, diastrophic dysplasia, caused my bones and joints to develop irregularly, so surgical procedures were a part of my life from the start. This procedure was to straighten my clubbed feet, making them more functional and enabling me to walk like other toddlers. I’d had casts on my feet before, beginning when I was three days old. I don’t remember the surgery or the recovery, or any pain involved, really. But I do remember those casts.

  In this recollection, I’m in my crib, holding my legs as high as I can above my Sesame Street blanket and staring at the thick white shells engulfing both of my feet. I’m amazed that no matter how hard I hit them, they won’t crack like an egg. They are heavy, cakelike, and smell like plaster and dust.

  My little room is decorated with plastic jungle animal decals stuck to each of the walls. There are lions, rhinos, giraffes, and birds, all dancing around me. But I am the one stuck in a cage. Across my room, the door is partially closed, which is upsetting to me because I can’t see out into the hallway. I have to see. I have to be out there. Raising my legs as high as they will go, I smash them down again against the bars of my pen. Nothing happens. I’m still stuck.

  I can also recall sitting down for meals in my Winnie the Pooh high chair, probably because of the song that my mom sang to me each time I was in there. It was a silly little tune, but it was a mealtime staple, just like putting on my bib or clicking into place the little plastic tray on my chair.