Dwarf: A Memoir (20 page)

I rang in 1997 with my mom and dad, nibbling on homemade chicken wings. I wasn’t having
a party or looking forward to a kiss when the ball dropped, but I was celebrating
the length I had achieved in my legs thus far: a solid three inches. I was that much
closer to whatever I wanted to reach.

But I was getting sick of my living room. I literally hadn’t seen my own bedroom upstairs
in over three months. I missed my pink lace curtains, my girly furniture, and my pile
of stuffed animals. Despite the TV, stereo, and phone in the living room, I felt stuck.
I needed a change of scenery. So Mom rented an adjustable orthopedic bed and set up
camp for me back upstairs.

We put the new bed beside my big picture window. From
there, I could see the faint tip of Mount Wachusett crest above the trees, and Marlborough
High School poke through the frozen branches across the street. I felt renewed. But
still, I couldn’t sleep soundly through the night. It was only a matter of time before
my homeschooling began to suffer.

It was sleeting when I first met Richard, my tutor. At least, I thought that was his
name. I was distracted by my clogged ears (another side effect of the pain meds) when
he introduced himself. I was also struck by his brooding look and his slick black
hair, doused in gel. He was in his twenties and seemed like he belonged in a coffee
shop with his goatee, heavy tweed winter coat, and maroon scarf around his neck. Richard
came prepared to work, but I don’t think he was prepared for me.

I sat in the blue recliner and stared blankly out the window, still somewhere between
sleep and the pain medicine lull. No matter how hard Richard worked, I could barely
concentrate. High school algebra may as well have been quantum physics as I strained
to focus on the equations he wrote out on the dry-erase board Mom had picked up from
Walmart.

Our sessions lasted no longer than twenty-five minutes.

“Is it possible you can come later than seven thirty tomorrow?” Mom asked. “Tiffanie’s
medication takes the pain away for a while, but it doesn’t make her comfortable enough
to sleep solidly, so it would help if she got up a bit later.”

“I can’t,” Richard said. “I have other appointments.”

“All right. Tomorrow will be better,” Mom assured him. “It will become easier with
time.” She hoped this would turn out to be true.

I hoped to wean myself off of the pain pills entirely but I needed relief. The skin
around the wires in my feet was tearing with every inch I gained. The tendons and
muscles in my calves
grew tighter, making my skin look shiny and lacquered. My body was struggling to keep
up. So Dad and I came up with one more MacGyver-esque fix for the skin ripping on
my feet.

“Duct tape fixes everything,” he told me, sticking pieces of tape to the tops of my
feet and pulling my skin toward the wires to counteract the tearing. “There we go,
how’s that?” He rubbed the tape into place.

It brought me back to being a little girl the first time I’d gone through a lengthening
procedure. With newly taped feet, I celebrated being well on my way to my fourth new
inch.

Every day, right on time at seven thirty a.m., Richard returned, armed with euphemisms
that drove me crazy. The poor guy didn’t know what he had gotten himself into.

“This one has some meat on it,” he said one morning, circling a difficult math equation
with a red marker. My stomach churned at the thought of carcass scraps hanging off
the edge of the whiteboard. “But this one,” he said about a problem that was easier,
“this one is
cake
.”

In the kitchen, Mom was baking again and the sugary smell grew sickeningly sweet when
it reached the living room. My stomach felt like it was turning somersaults around
my Vicodin until, inevitably, the images of frosting-covered meat chunks pushed me
over the edge.

I vomited in my chair.

With that, my lesson was done, and so was Richard.

Tom, my physical therapist, came nearly every afternoon during the week. Armed with
folders and a range of motion-measuring devices, he also arrived with plenty of skepticism,
criticism, and doubt.

“When are you going to stop lengthening?” he’d ask every day. The more my toes curled
toward the ground as I turned my pins,
the more nervous he became. “I think you’ve done enough,” he’d say. “You should stop.”

“It’s fine, Tom,” I replied every time. “They don’t hurt. The more I move around with
my walker, the more my toes will stretch in the opposite direction.” At this point,
I was slowly but surely approaching five inches. I felt excited and accomplished,
and his words gnawed at my resolve.

I dealt with his concerned warnings as best I could, but it felt like Tom was directly
challenging my future and my need for independence.

“You
can’t
go much more,” he’d say in a singsongy voice that infuriated me.

He loved to use one of the words I’d grown to hate.
Can’t.
How could he tell me I can’t do things, especially now? I had reached a big milestone!
In any other situation, with any other doctor, my pins would have been long removed.
But I was still lengthening. Tom didn’t understand what it was like to be in my (orthopedic)
shoes. He would never get the world I lived in or the hell I would suffer
without
the lengthening surgeries. How could he say he was there to help me progress if he
didn’t even try to understand me or where I was coming from?

One day, I snapped.

“They’re toes, Tom, get over it!” I shouted, making him jump. “You’re not my father;
you’re not even my friend! I will stop when I feel the need to stop. So please, just
do your job and keep your opinions to yourself.”

For a while, my little outburst had done its job, and that March, I had peace. But
then the nagging began all over again, and Tom’s fondness for the word “can’t” returned.

“This isn’t working,” I said during one of our routine transfers from one chair to
another.

“What’s not working?” he asked, confused.

“You. I’m done.”

Tom’s cheeks grew red and his jaw dropped. He went into the kitchen and brought my
mom back with him into the living room. Little did he know I’d been expressing my
frustrations to her for weeks.

“Tell her what you just said,” he ordered. I wanted to leap out of my chair and smack
him across his smug face.

“I said that I’m done with your comments, I’m done with you insisting that I stop
lengthening, and I’m done working with you,” I replied as coolly as I could. I paid
close attention to my mom as I spoke, praying she wouldn’t surprise me and take his
side.
Please, Mom,
I pleaded inside.
Please tell him that you agree with me.

She said nothing, only moving toward the door and opening it. Tom gathered his things
and left. Just like that. I mustered the remaining strength I had left, gripped my
walker tightly with my hands, and moved myself from the couch into the blue recliner.
My chest tingled from the exchange. I felt I had finally stuck up for myself and for
what I wanted out of life. It was addictive.

“I’ll call the home-therapy agency tomorrow,” Mom said.

Trying to sleep at night soon became more and more difficult, and my attitude took
a nosedive. I didn’t have the patience to deal with anything or anyone. I was becoming
less tolerant and tired of explaining myself. I had blinders on and saw nothing but
my goal. Nothing else existed. I had even become less patient with my friends.

My friends would call sporadically to talk about the latest gossip and drama that
filled the hallways of MHS. The last thing I wanted to hear about was who was having
sex with whom, who was trying pot, or who was hosting the crazy Holiday Inn parties
that I couldn’t go to, but— “It would have been fun if you were there, Tiff!”

I couldn’t relate to any of it, and I didn’t want to.

“It makes you relax,” a girlfriend told me about pot one night.

“So it’s like Valium?” I asked halfheartedly while staring at my pin sites, wondering
how bad it would be if I only cleaned them once a day instead of twice. They certainly
looked
clean.

“Like what?” my friend asked, as though I’d been speaking in a foreign language.

“Valium.”

“What’s that?”

“Never mind.” The divide between me and my friends seemed to be getting bigger all
the time. I had become an expert in pain meds. By my sixteenth birthday, I had been
on Vicodin, methadone, morphine, OxyContin, Percocet, codeine, and fentanyl, and here
was my friend, excitedly telling me how drugs helped her lose control. All I wanted
was to get back in control.

What could my friends possibly be so desperate to escape from? To me, being pain-free
for ten minutes was pure, unadulterated ecstasy, and I felt myself becoming bitter
that they didn’t appreciate the peace they had. My classmates didn’t deserve their
independence, because they took it for granted. No one in high school even deserved
his or her body, I thought wildly. They
all
took the little things for granted. The ability to reach the combination lock on
their lockers, the dollar slot in the soda machines, the sewing machine pedal in design
class, and the ability to climb the bleachers— no one appreciated any of it. My classmates
didn’t have a clue what it was like not to be able to access these everyday things.

That winter, Dad carried me downstairs one morning after
Mom went to work. Groggily, I began my pin care routine in the blue recliner. Going
through the motions, I felt a cramp below my stomach. It was a new sensation unrelated
to my legs and I assumed it simply meant I had to use the bathroom. I called my dad
for help getting to the toilet. He lifted me out of the chair.

“You’re bleeding,” he said simply. I was confused. I hadn’t knocked my pins into anything,
they weren’t infected, and I hadn’t pushed myself too hard the day before. Where was
the blood coming from? In the bathroom, Dad helped me onto the toilet. The blood was
all over my shorts and stained the inside of my thighs. Then it dawned on me: I’d
just gotten my first period . . . with my
father
looking on.

Neither of us said a word. Dad stayed focused on helping to clean me and change my
clothes. There wasn’t a single pad or tampon in the house, so he improvised. He took
a new roll of toilet paper out from under the sink and unraveled half of it, creating
a thick nest to line my underwear. If MacGyver were a father, he would have been proud.

As I adjusted my bulging, makeshift panty liner, Dad went out into the living room
to spot-clean the chair and layer it with towels. Then he came back into the bathroom,
scooped me up, and deposited me back on the recliner like nothing had happened.

“There,” he said as nonchalantly as possible. “You’ll be fine until Mom gets home.
Just don’t move.”

I nodded, flipping through the TV channels, waiting until he went outside before calling
my mom. When Mom made it home from her shift, she found me sitting in the blue recliner,
still in my toilet paper nest. With a package of maxi pads in hand, she burst out
laughing, apologized, and gave me a big hug as if to say,
It could be worse
.

Judy Blume herself could not have prepared me for the way I welcomed my Aunt Flow.

That spring also signified the start of new things for me and Mike. For him, it was
the beginning of his first serious relationship, with a girl from Westborough. The
season was the beginning of a whole new world for me, too. That spring, I discovered
the Internet.

One night, when Dad came home from work, he hoisted his massive Gateway 486 desktop
PC monitor on top of my small hospital table.

“Take a look at this,” he said happily. “It’s better than television.”

Back then, his desktop computer cost more than a thousand dollars and had only 32
megabytes of RAM. He set the clunky tower on a separate table next to my bed. All
I needed to do was lean to my right, press the power button, and I could boot up.
The machine purred, then toiled as Windows loaded. The screen glowed and the fans
whirled inside. It was alive. And for once, my room was, too.

Each night, cast in the pasty glow of the screen, I settled into my orthopedic adjustable
bed and found my own way to get out. The Internet became a place where I could communicate
with— and relate to— so many people. Without having to move from my bed, I was connected
to cyberspace. I became so consumed with my virtual travels that I discovered a much
bigger relief— giving up my pain pills.

Unix systems, Linux, telnet, DOS, chat rooms, and BBSs (bulletin board systems)— I
was into it all. Everyone online went by nicknames, or “handles.” To decide on my
own, I peered down at the monstrous contraptions attached to my legs and thought of
the five-plus inches I had gained thus far. I decided to call myself “LiveWire.”

I made new friends and though I didn’t know them the way I knew the kids at school,
I felt close to them. And I appreciated the fact that we didn’t have to talk about
drugs or alcohol. Instead, we chatted about real, interesting topics like Trojan horses,
Bill Gates vs. Steve Jobs and Steve Wozniak, and the irrelevance of certain firewall
security systems. We talked about things that distracted me from the pricking sensations
tackling my legs. We shared our ideas about the battle for free information online
and
The Hacker’s Manifesto
, written by a hacker known only as the Mentor.

And then it happened . . . a door opened to a world. . . .
Rushing through the phone line like heroin through an addict’s veins, an electronic
pulse is sent out, a refuge from the day-to-day in competencies is sought . . . a
board is found. This is it . . . this is where I belong. . . . I know everyone here . . .
even if I’ve never met them, never talked to
them, may never hear from them again . . . I know you all. . . .

I had found a place to belong.