Dwarf: A Memoir (8 page)

On countless visits to my grandfather’s house, we would find him at the kitchen table,
pounding away on his typewriter, stamping out his words on thick white paper. He wrote
a sports column at the
Middlesex News
. I hoped that one day I could be a writer, too. I wanted to sit at a typewriter (a
pink one, ideally), making my own words appear on the page, pausing at the end of
each line before concluding, “That’s good,” just as Papa did.

“This is your story,” Mom told me as she rubbed glue across the backs of the photos
I had selected and pressed them down firmly on the pages. Naturally, I picked the
shots where I was wearing outfits that I deemed complete and perfect in every way,
with matching necklaces and rings.

I felt annoyed that I didn’t have a say in choosing the words. I wanted to create
my own story.

And my story would
definitely
be different from the one my mom wrote about me.

This project is dedicated to my daughter, Tiffanie, who was born with diastrophic
dysplasia.
It is through her pain and suffering that I have learned so much about this syndrome
and the rehabilitation process. Through it all, she has maintained her zest for life
and is truly my inspiration.

My understanding of diastrophic dysplasia— two words that I could barely pronounce,
let alone comprehend— grew little by little as time ticked by with the external fixators
drilled into my legs. They were quite dramatic-looking devices, with thick metal bars
attached to my shins to stabilize the pins inside my bones. I was beginning to associate
my short stature with my surgeries.

At night, the tremors in my shins grew worse. Each time they struck, they were relentless.
I tried to will them to stop and hoped they’d dull to nothing, as they eventually
did with medication. I focused on the thick, plastic blinds pulled shut across the
sliding glass doors of Mom’s bedroom that led out to our deck. For just a moment,
I had peace.

One night, when I was wondering when I’d be able to go outside next, I heard voices
downstairs growing louder and louder.

“Don’t you make
me
out to be the monster,” Mom barked. “Don’t you fucking dare!” She fired an arsenal
of four-letter words at my dad, who sounded sadder in his response.

“I didn’t know her surgery would be like this. You didn’t tell me!”

“Like what?”

“Like
this
!” His volume rose to match my mom’s.

“Painful?”

“Yes! She just had her eighth birthday party and now she’s stuck in a room and can
barely sit up.”

Without warning, the tremor grew stronger, angrier, shaking the muscles in my calves.
Pain developed in my ankles and rapidly intensified, right along with my parents’
argument.

“Life is painful, Gerry. Diastrophic dysplasia is painful! When are you going to accept
that? It’s painful for me to put her through surgery time after time to correct her
bones. It was painful for me to hear she got trapped in a bathroom for God knows how
long!”

“I fixed the school bathroom,” Dad interrupted.

“It’s not about the school, it’s about her life! I want more for her life! I don’t
ever want her to feel stuck again because we’re not around.”

“I’ll be around. I’ll take care of her!”

“Jesus Christ, Gerry. What are you going to do, follow her around until she’s an old
lady, placing locks and handles on all the doors she can’t reach?”

“Yes!”

“
No
, you
won’t
.”

“The bottom line is, you didn’t tell me it would be like this!” Dad shouted, now just
as loud as Mom.

“I did tell you. You didn’t listen. So I made the choice.”

“
You
made the choice?”

“Someone has to. I don’t want her to have to suck up to a caregiver all her life because
she can’t do something herself. Is that what you want? Do you know how many people
get abused because of their handicap?”

What’s a caregiver? I wondered. I’d heard the word “handicap” before, but I couldn’t
remember where. Did it have something to do with where we parked our car? The pain
roared back, silencing
my thoughts. It grew more explosive by the second, vibrating inside me like a threatening
volcano.

“You know it all, then. You’re the all-knowing Robin.”

“I know what it’s like to fight. I know what battles she has ahead of her. Her fight
with this condition has only begun and it will only get worse.”

Mom had been reading all about diastrophic dysplasia since she learned of my diagnosis.
It worsens with time, damaging cartilage, hampering bone development, and causing
joint deformities called contractures, which confine movement. I was destined for
a wheelchair if I didn’t consistently exercise, strengthen, and stretch.

“She’s going to hate you,” Dad shouted. “When she gets older, all the exercising you
forced her to do will make her hate you.”

“Then let her hate me.”

To Mom, the chance for me to live independently was too important to compromise— and
she would fight like hell to help me do it. For Dad, the end did not justify the means.
I just wanted the pain and the arguing to stop. I couldn’t take it anymore. From deep
inside, I let out the loudest scream I could muster.

Dad was the first to come through the door. Mom was right behind him, ready to help
quiet the pain and tremors with another scheduled dose of pain medication. My mother
reacted while my father comforted, making his way over to the edge of the bed to sit
beside me. Remnants of their dispute lingered in his eyes. If looks could kill, his
would have strangled my mom. He hated my surgeries and he hated how accepting Mom
was of them— and how accepting I had become of surgery, too. I could read it all over
his face.

I squeezed my eyes shut and swallowed two chalky pills. Gently, Dad pulled away the
sheets and placed a hand over each of my
feet, rubbing the tops of them with his coarse fingertips. That soothed everything.
The arguing, the pain, it was all gone, at least for now.

“Dad, can you make me an automatic foot-rubbing machine?”

“An automatic foot rubber?” he repeated, stifling a smile. It sounded more like “rubba”
when he said it. Dad always had a Bostonian accent, so he occasionally dropped his
r
’s.

“Maybe you can use some of the same metal they put inside me and make fingers that
move back and forth,” I suggested. “I think you can do it. You can make anything.”

“I’ll draw up some plans,” he replied, humoring me, though I felt quite sure he’d
actually get to work on it. Silently, I wished that the pills would kick in sooner.

“I could help,” I told him, my eyes still closed. “I don’t want a ring like Mom’s
anymore. I want an automatic foot rubba,” I added, imitating his accent.

“We’ll do that when you wake up. Try to go back to sleep. Okay, pumpkin pie?”

I nodded my head and took a deep breath, waiting for the medicine to work its magic
and for Mom’s bed to swallow me up in its sweet-smelling, soft embrace.

Over the course of days, then weeks, I adjusted to the idea that the metal in my legs
wasn’t going anywhere— not until I was four inches taller. My musical tastes during
this time changed, too, from my pop favorites like Cyndi and Debbie Gibson to hair
bands and hard rock.

After school, Katie would often visit me and together we’d watch Bret Michaels and
Guns N’ Roses videos on MTV. We’d giggle and quickly flip the channels back and forth,
timing it
perfectly when Mom came and left the living room. MTV was forbidden in my house and
I loved the chance to rebel, even a little bit.

I devoured every detail Katie divulged to me about school. Without her, my days consisted
of homework from my tutor, range-of-motion exercises, stretching, and cleaning and
turning my pins.

Turning the pins, despite its torturous terminology, was actually the easiest part
about the entire lengthening process. Unlike the tools I’d created from household
items when I was younger, I now used an official tool that Dr. Shapiro had given me
right out of the hospital cabinet. It was called an L-wrench and I kept it by my side
at all times, even though I only needed it to turn the pins four times a day. The
wrench had become a part of me— or maybe part of the person I was going to be. Four
times a day I’d stick the short end of the wrench into a hole of the apparatus and
crank it counterclockwise. At eight in the morning, at noon, at six in the evening,
and finally, at midnight, I’d stretch my bones for a total of one millimeter a day.
And I didn’t feel a thing.

Cleaning the pin sites was more tedious than turning them. Every night, just before
bedtime, I dipped oversize Q-tips into hydrogen peroxide and swiped them along the
sites where the pins entered my skin and went into the bone. I pressed and then dragged
the skin away from each pin to prevent it from growing upward and becoming inflamed
and infected.

But the most defining part of the whole bone-lengthening procedure was the exercising.
I had absolutely no choice but to do it— if I didn’t, my muscles would lock up and,
as Mom explained it, the surgery wouldn’t work. I wouldn’t be able to gain the full
two inches in my tibias. Everything was connected— my ligaments, my skin, my nerves—
and they all needed to be stretched together to keep up with the stretching bone.
Though I couldn’t
fully understand the medical explanation, I did understand that the more I stretched,
the less the tremors wreaked havoc inside me and the easier I could sleep.

Exercising every day broke me down and then built me back up again. I learned how
to control the pain instead of letting the pain control me. Together, Mom and I sat
on the living room floor and I reached for my toes. The muscles in my calves clamped
and the skin circling my pins pulled and burned as I reached forward. My stomach felt
tight and hard as I tried to pull my toes toward my fingertips. I was only inches
away from touching my feet, but in my world, inches felt like miles.

“Don’t let it beat you,” Mom ordered when another leg spasm crept up my leg as I stretched.
“Breathe deep, in and out!” She wanted me to learn how to regulate my breathing. I
learned another, more important lesson in those days as well: the more I controlled
my pain, the less pain my dad experienced with my mom.

Throughout my lengthening process, I learned how to identify each hurtful sensation,
and even to categorize it as being muscle, bone, nerve, or vascular pain. Muscle pain
was sharp and stung rapidly. More often than not, vascular pain followed shortly thereafter.
That was a throbbing sensation and it made my limbs feel cool or numb. Bone pain felt
cold and penetrated deeper inside. The worst was nerve pain; it was a relentless mixture
of all those sensations, and there was no rhyme or reason as to when it would strike.

Once in a while, I’d feel temporarily defeated, and, like clockwork, another argument
would develop between my parents and the four-letter words would fly. It was my job
to capture the pain and get it under control.

As I continued stretching, my eyes began to hurt from squeezing them shut and my vision
blurred. My arms felt heavy as I stretched them forward. My teeth hurt from clenching
my jaw and then my ears began to ring, but Mom kept coaching me.

“Don’t lose control. Breathe! Take deep breaths, nice and slow,” Mom shouted over
my wailing.

From down in the basement, I could hear my dad vacuuming. The grinding of the vacuum
motor was, I’m sure, his way of drowning out the crying and yelling.

This was my introduction— my training— to learning how to cope with true adult pain,
and the harsh realities of diastrophic dysplasia.

“Don’t let it win. Don’t let the pain win. Toughen up. Fight!” Mom told me. “Count
backwards from five and we’ll be done,” she promised.

“Five,” I choked out between carefully timed breaths.

“Fight for
yourself
,” Mom coached me.

“Four!”

“You’ll never get anywhere in this world unless you fight. Remember this!”

I heard her loud and clear as I considered the vast difference between the way my
mom handled problems and the way my dad ran from them.

“Three!”

“Fight to reach those doorknobs! Fight to reach Daddy’s stereo! Fight to see above
the dining table!”

“Two!” I wanted to help
set
the dining table. I wanted to see over the windowsill and reach every doorknob in
the world so I’d never get stuck again.

“Fight to live your life, Tiffie.”

I meant to shout the final number at the top of my lungs, but another word came out
instead.

“Fight!”

After a month or two of turning my pins day after day, I gradually began to notice
that the tiny difference in my legs was becoming a big one. I no longer needed pots
or cookbooks to reach the things I desired.

I could see above the dining table and help set it, too.

My shoes were no longer easy to tie, as my feet stretched farther away from my reach.
I could look down into my bedside table drawer and actually take in the mess that
it had become. I could even reach the top of my dresser, and I could see, just barely,
the top of my forehead in the mirror.