Dwarf: A Memoir (7 page)

The surgery coming up was more than the typical osteotomy to correct the irregular
joints of my legs— a procedure I was used to and didn’t even really mind. I actually
enjoyed the hard casts woven around my legs when I woke up. I could draw on them as
much as I wanted. Mom made sure I never ran out of markers, stencils, and stickers
for decorating the white plaster.

Months earlier, my mother had watched a series on the news about a radical new procedure
called bone lengthening. It was used to correct uneven limbs, and one doctor was performing
the surgery as a way to lengthen the limbs of children with dwarfism.

The procedure promised the potential for great results, but it was— it is— a grueling,
painful process. In order to lengthen a bone, surgeons first cut the bone in half.
Then they drill a thick stainless steel pin into each side of the broken bone and
attach an external fixator. A week after surgery, the patient begins turning the pins
four times a day (one-quarter millimeter each time) to achieve one millimeter in length
between the broken bones daily. The hope is that, as the bone is stretched apart,
the body will fill in the gap with new bone, thus adding length. When the patient
wakes up from the surgery, the pins protrude from the limb, which is encased in a
metal halo to keep it stable. The sight of
a patient undergoing bone lengthening is a hard one to bear, even for a mother as
tough as mine.

Curious and inspired by the procedure and passionate about helping me live as normal
a life as possible, Mom called Dr. Fred E. Shapiro. He was a little man who wore rimless
oval glasses, a navy blue blazer, and a tie. It was a big deal to my mom that he taught
at Harvard Medical School, and an even bigger deal that she trusted him. He was sweet,
soft-spoken, and brilliant. Occasionally, he even made a joke. He had been my orthopedic
surgeon since I was a baby, and I grew to love him as an important adult in my life.

But in this conversation between my mom and Dr. Shapiro, there was almost nothing
I could relate to— nor could I understand much of what they said. No one smiled. Everything
was serious as they studied X-rays of my legs. Dr. Shapiro moved his pen vertically
and then horizontally against the images of my bones. He was explaining something
I couldn’t comprehend and he used words that I had never heard before, like “pin care”
and “consolidation” and “angulation.” But I could make out that this surgery would
take longer, be more painful, and generally be a bigger deal.

While Mom was digesting the information, I began to get bored.

“My birthday is coming up,” I interjected as they spoke, searching Dr. Shapiro’s face
for that comforting smile. “We’re going to have pizza!”

Dr. Shapiro glanced in my direction, nodded, and lifted a finger to indicate that
he’d speak to me in just a minute.

“There’s a window of opportunity,” he told my mother. “You can have it done twice,
if you decide to do so, between the ages of eight and twenty.”

“So if she wanted to do it a second time she’d be in her teens.” Mom paused, then
looked at me with a small smile. “She could decide for herself then if it’s worth
it.”

Dr. Shapiro nodded.

I loved it when I heard my mom say things like, “She can decide for herself.” I loved
having any chance to make my mom proud.

“We would strive for two inches in her tibias first, then two inches in her femurs
for a total of four inches. It’s the recommended amount,” Dr. Shapiro concluded.

One night not long after my appointment, I heard Mom explaining the surgery to my
dad as I played with my Barbies.

“No, no, no,” I heard Dad say. “More surgery? It’s never ending.”

Mom kept speaking over him, using some of the big words I’d heard in Dr. Shapiro’s
office.

Then Dad left and went downstairs to see Bruiser. I heard the cellar door shut, then
Mom appeared quietly in my doorway. I brushed the knotted hair of my doll and dressed
her in a sequined outfit.

“Tiffie,” she began, “would you like to do more things on your own without the help
of Mommy or Daddy?”

“I already do things on my own.”

“You do things with books and tools,” she said, sitting down next to me. “Would you
like to do things without those?”

I nodded my head, thinking about all the books I had to slide across the floor to
reach the Pioneer system. It was pretty tiring.

“I don’t like my chair at school,” I replied. “It’s ugly.”

“I know. I know you’d like to sit in a chair like your friends and like Mom and Dad.
What about the doorknobs? Would you like to reach those, too?”

“You and Daddy do that.”

“But we won’t always be around to help you. You should want to do it yourself.”

That worried me. Where were they going? I smiled anyway and nodded.

It was decided. I would undergo the bone-lengthening surgery.

The morning of my operation, Dad woke me up. As my eyes adjusted to the light coming
in through my window, I noticed something fluffy and white on my bed.

It was a new stuffed animal, bigger than all the others from my previous surgeries
combined.

“I’ll see you when you wake up,” Dad said softly, patting the giant white polar bear
with brown eyes and happy grin. “Until then, he’ll be by your side.”

“Can I name him Frosty?” I asked.

“Frosty is a snowman.”

“This Frosty is better. He won’t melt.”

“All right. Call him Frosty.”

“Daddy, are you okay?” I asked, sitting up to look at him.

“Oh, sure,” he said. “I’m fine.” I could tell he wasn’t. “Mom just makes too many
decisions without me. But you don’t think about that. You think about presents after
surgery.”

“Mom says I won’t need so much help after this one,” I told him. “She says I won’t
need so many tools.”

“She’s right,” he said, nodding. “She’s right.” He repeated it as though he were trying
to convince himself that this surgery was worth it.

“I’d like to reach more stuff,” I continued. “If I can reach the stereo without my
tools, will you let me play Cyndi whenever I want?”

“Maybe we’ll even get you your own stereo,” he said with a smile.

“A pink one! A boom box like Barbie’s!” I yelled.

“All right. We’ll see what the Fair has for boom boxes.”

“I think Mom made a good decision then, Dad. Don’t worry.”

The truth was, Dad always worried. So did Mom, but she was better at hiding her emotions.

In our rush out the door to get to the hospital, we forgot my Cyndi tape. The drive
went by fast but it was hardly the party it had been on previous drives. Frosty sat
in the back with Mom’s bag, which she’d packed with pajamas and other necessities.
She never left my side during any surgery. I carried Chester the cat, one of my favorite
animals, under my arm, and I studied Mom’s expression as she drove and saw not an
ounce of weakness or regret. Her confidence gave me comfort.

Moments before we pulled into the Children’s parking lot, Mom explained to me again,
in the simplest manner, that this surgery was part of a bigger picture. The bone-lengthening
operation was part of my ongoing fight to do things on my own, she said. I was still
confused. I told her I felt like I was already doing things on my own.

“Without tools, honey bunny. You will be able to do so much more without using your
tools. Mommy and Daddy won’t always be around to help you,” she said.

Now I was even more scared. Why was she saying this again? Where were they going that
I couldn’t go, too? I didn’t want to be away from them. I wanted to have them forever
and I wondered if having surgery to be more independent would make them go away somehow.
The thought frightened me so much that from that point on, I promised myself to never
watch
Bambi
or any other Disney movie where the mom dies.

When we arrived at pre-op, a familiar place, a man in blue scrubs and a Disney net
hat lowered my hospital bed. Already in a gown, I pulled the warm white blankets over
me. They felt like they were fresh out of the dryer.

Mom squeezed my hand and I watched a nurse wheel a massive machine toward me with
a rubber mask and a long tube attached.

“Take a few deep breaths,” a doctor told me. He assured me that the mask would smell
like juicy citrus.

It smelled of rotting oranges.

“Wait, wait, wait,” I pleaded. The sense of losing control made me panic. I had to
submit and I hated it. I couldn’t stand the mask, but I had endured it before because
the needle and IV were far worse. The mask gave me a way to be put under and then
wake up with an IV in my hand instead of the other way around. I had to pick my poison,
but I wished there were a third option. The surgery itself never fazed me. It was
the fall down the rabbit hole I feared.

“C’mon, Tiffie,” Mom said. “You know you have to have it. There’s no time to wait.”

“Can I hold the mask?” I begged. I needed the sense, even if it was a false one, to
be in control of what was happening.

Mom asked the anesthesiologist to give me the mask. His eyebrows drew together. He
wasn’t accustomed to granting such a request, but he complied.

I took the mask in my hand— it looked like a misshapen mushroom. Then I took a deep
breath. Everything around me slowed down, and all the people and machines seemed to
be floating around the room. Faces became blotchy like the painting in Dr. Shapiro’s
office. Voices started to echo and slur. Out of the corner of my eye, I saw Mom take
Frosty out of my bed.

I thought of the movie
Alice in Wonderland
. It was like I was taking one of her pills, the red one, and it would make me taller.
But I knew this wouldn’t be nearly as painless as what Alice went through.

I inhaled again. The hallway tunneled and went dark around the edges. I felt like
I was falling. Nurses and doctors began to wheel my bed toward the operating room.
I heard Mom somewhere in the background tell me she loved me. With my free hand I
motioned for my cat with the cute white belly. I wasn’t prepared to let him go yet.
He had a crooked smile, which I loved, and his black whiskers curled like a second
grin around his big, round cheeks. I traced the outline of his whiskers, finally feeling
like it would all be okay.

Toughening Up

An elementary school portrait.

A
WEEK AFTER SURGERY
, I was home, but everything felt different. Sleeping was difficult. I was constantly
jolted awake by tremors in my shins. A sliver of daylight was shining through my mom’s
bedroom window and directly into my eyes. All I wanted to do was stay in bed— specifically
my mom’s. Her bedroom was always so peaceful and comforting to me that it became my
recovery room when I came home. Maybe it was the lilac wallpaper or the flowery scent
of her White Shoulders perfume, but something about her room just felt safe. Dad came
over every day, but rarely stayed the night. Still mending his relationship with my
mom after the divorce, he would continue living in his Webster apartment for the next
several years.

That first afternoon home, Mom made cinnamon buns, but my pain medication smothered
my appetite. I’d slept through
breakfast, and lunch was approaching. The whole house smelled of sugar, and my sensory
memory of rotting citrus drifted away.

I was eight years old and the height of a toddler. But that was about to change.

As I snuggled underneath the fluffy comforter with stacks of pillows tucked between
my body and the solid oak headboard, Mom entered with a smile and two plates, each
with a giant cinnamon bun. She pushed Frosty and Chester aside (someone had tucked
them in next to me while I slept) and sat beside me on her bed.

“Try to pick at it, honey bunny,” she said.

As I toyed with the frosting and forced a few bites down, Mom reached over to her
bedside table and grabbed a handful of papers, a glue stick, and photos— mostly of
me— and set them down in her lap. With the glue stick between her fingers, she thumbed
through the pages, reading what she had previously jotted down in the margins. I recognized
the thick black lettering stamped on each sheet— they came from my Papa’s big green
typewriter.