Dwarf: A Memoir (2 page)

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.

P
ROLOGUE

Call Me Tiffanie

On vacation at York Beach in Maine, age six.

B
ELIEVE 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.

My name is Tiffanie. And this is my story.

DWARF

Third-Degree Dwarfism

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

M
OST 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.