Dwarf: A Memoir (15 page)

Once I’d made my way downstairs (the last time I’d have to do it like a child, sliding
down on my butt, I thought to myself during the long trip down), my mom asked me to
stand in front of the kitchen counter for pictures. I was annoyed. I didn’t understand
why she wanted them, since, to me, it didn’t matter how I looked before the surgery.
I just wanted the “after” so desperately that it angered me to see her holding up
the process, even by a matter of minutes.

I complied with her request anyway. I tried to arrange my face into a neutral expression,
but inside I was seething. My best friend in the entire world had failed to call me
when I needed him most, and on top of that, I was asked to pose like a criminal for
mug shots. I faced front, left, and then right, next to the counter. Then the phone
rang.

I smiled with relief the moment I heard his voice, even if I didn’t love the sentiment.

“This is your wake-up call . . . I think what you’re doing is dumb,” Mike said, his
voice trailing off. “Are you scared?”

“A little.”

“Here. Listen to this.” The phone rustled a bit and then I heard him begin to strum
his guitar to the tune of Bush’s “Glycerine.”

I don’t want this, remember that I’ll never forget where you’re at. Don’t let the
days go by . . .

Mom motioned for me that it was time to go and I watched the clock on the stove tick
from 3:29 to 3:30 a.m. Pre-op began at 4:00.

“Thanks,” I told Mike. “Well, it’s . . . about that time.”

He took a short, shallow breath. “I’ll say this for the last time, babes: You don’t
need this surgery. I love ya no matter which way you are.”

I loved him for saying that, but my mind was made up. And I knew that he knew it,
too.

“Have your mom call me afterward.”

“Okay,” I promised, so glad that he’d called after all. “I’ll talk to you when it’s
over.”

“Talk to you when it’s over.”

Outside, the garage door was open and the light illuminated the top of our driveway.
I stood in front of the Jeep and looked one last time at my wobbly reflection in its
cherry paint. I couldn’t reach the door handle. Dad leaned over and opened it for
me. I looked up at him and smiled, not because I was happy he did it for me, but because
I wanted him to know I was happy to get in the car and go to the hospital.

“I’ll be there a little later,” he said. He was working a half day and would meet
my mother at the hospital when his shift was over. I think he needed something to
do during the surgery or else he’d be consumed with worry.

“Okay,” I replied. And then we were off. It was that simple, that ordinary.

Mom wanted to talk, but I didn’t have much to say. I just wanted to get the operation
over with and move on to lengthening my legs. I felt impatient for the possibilities,
and even more excited and ready to go, because it was finally all within my reach.

“What are you thinking?” Mom asked as she drove. Her hands were steady and calm on
the wheel as always, despite the major surgery that was finally upon us. She occasionally
glanced over in my direction, waiting for my response.

I didn’t know how to answer her question honestly. Should I tell her what she wanted
to hear? Did I tell her that I was confident, unafraid; that I’d undoubtedly made
the right choice?

In actuality, I was thinking about those jeans again, childlike in their short length,
and how much I couldn’t wait to burn them.
I am making the decision to adapt,
I reminded myself.
The world will not.

“I can turn around,” Mom said gently, mistaking my silence for fear or regret.

“No!” I jolted out of my daydream. “Keep going. This is what I want.”

“Do you mind if I stop for a coffee?” she asked.

“I don’t mind.”

“You sure? I always hate drinking my coffee in front of you when you can’t have anything
for yourself.”

“I don’t even like coffee,” I reminded her. “Please, get some. It’s fine.”

A brief drive-through visit to purchase an extra-large coffee with three sugars and
milk and we were back on the highway, merging onto Lincoln Street and then pulling
into a parking space at UMass Memorial Medical Center.

In the pre-op room, the boxy TVs attached to the ceiling were set to the early morning
news broadcasts. A team of doctors and
nurses entered through the automatic room doors and a
swoosh
followed behind them as the doors shut tightly. The heavy scent of bleach floated
toward me.

The residents stopped at the foot of my bed. Some kept their surgical masks pulled
over their faces, while others appeared less intimidating and let their masks hang
beneath their chins. They all checked my charts, flipping through the pages. The sound
made me nervous. One nurse carried a gray plastic basket. She smiled and then walked
closer. Inside were needles of all shapes and sizes, alcohol swabs, and other items
for starting an IV. That time had come. I winced as she tied the yellow rubber band
around my extended arm.

“Just relax,” she said softly.

I hated this part.

I took a deep breath and exhaled and tried to ease my veins to the surface. If you’re
tense, I’d learned, veins dive like submarines. She tapped the top of my hand, trying
to raise them back up to the surface. Then there was a pinch and an odd rolling feeling
beneath my skin as my veins tried to move away from the blue butterfly 22-gauge needle.
After a few more seconds, she was done. She flushed the line and then was on her way
out of the pre-op room. Then my anesthesiologist finally approached.

My mom double-checked with him that the machine they used was halothane-free since
I was allergic. Then he turned to me.

“Ready?” he asked.

More than ever, I thought as I nodded.

He inserted a needle loaded with the relaxant Versed into my IV’s heparin lock and
let me push it through at my own pace. I needed that sense of control and he graciously
gave me that illusion. I turned up the volume of my headphones a bit, pushed the syringe
forward carefully, and let my body ride the high. I felt
weightless and giddy. Mom squeezed my hand and mouthed
I love you
as I got lost in the noise blaring from my headphones.

Then, casually, Errol entered.

I moved my headphones partially off my ears. The way Errol raised and then gripped
the steel rails attached to my bed seemed slow and relaxed. Then he smiled and asked
the same question as the first day I met him.

“How are you doing?”

“Errol,” I responded as the Versed thickened my tongue, “I love you. I love you and
I thank you. Thank you. I love you.”

“I love you, too, Tiff,” he replied as the fluorescent lights rolled by over my head.
He placed his hand on my shoulder and walked beside my bed as the nurses wheeled me
into the operating room. The massive, alienlike lights that hovered over the operating
table made the room extremely bright. Someone close to me said, “Count to ten, Tiffanie,”
and out of the corner of my eye I watched the thick, milky propofol push slowly through
my IV.

I made it to three.

Learning to Walk Again

Sitting on the couch with the pins and fixators attached to my legs.

I
T WAS DURING
the evening that Mom realized she’d lost track of time. The hours seemed to meld
together as she paced and made small talk with friends at the hospital while she waited
for Errol to find her. A few times, she dialed the number the operating room nurse
had given her to inquire about how I was doing. At other times, she flipped through
the channels on the waiting room television, scanning everything but watching nothing.
Mom never once left the hospital. The wait was approaching twelve hours and she grew
more worried by the minute.

Soon, she calculated that thirteen hours had passed.

Then fourteen.

Finally Errol stepped off the elevator. Soaked with sweat as if
he’d just stepped out of the shower, he hugged her and said the words she had waited
all day to hear: “Tiffanie’s done and she’s doing fine.”

It was the longest surgery I had ever endured.

“It took a while to erect everything around her legs, because her limbs are so short,”
he continued. “But she’s doing fine.” Beads of sweat continued to pour down his forehead
and over his temples.

Mom followed Errol to the Pediatrics ICU, where I would lie heavily sedated for days.
I had my own room, and Mom made herself comfortable on a reclining chair. Her fingers
gripped my limp hand. There were no stuffed animals lining my bed or under my arm
this time. The operation was over, but the process had only just begun.

I didn’t wake up from surgery until four days after the doctors completed their work.
I couldn’t figure out if it was day or night— it felt like time had stopped. Instead
of a clock ticking, I heard monitors all around me, beeping and chirping, keeping
time with their own strangely melodic tune. Other machines around my bed made a steady
humming noise, and I could almost feel that humming traveling through the wires attached
to my skin and into my body. I hummed with pain.

The air was still and I could hear muffled echoes at a distance. Then I heard them
move toward me, closer and closer, until they were hovering over my body. I was too
scared to open my eyes. I didn’t need to see in order to understand what was going
on around me. I could feel the nurses’ presence. My mind felt clouded, but my senses
worked on overdrive, trying to regain their bearings while my brain sluggishly tried
to catch up. I felt, smelled, heard, and tasted everything, all at once. And all of
it was amplified.

A nurse rustled around in his pocket and tore open a package. A syringe, I was pretty
sure, then an alcohol swab. The powerful
odor stung my sinuses. Then I felt him guide the syringe into my IV and I knew it
was full of more methadone. The drug bit at my veins as it flowed under my skin. Certain
medications produce physical sensations. Some are cold and others are hot. Some tingle
while others jolt.

Sometimes I feel like I could write the manual.

I heard him shuffle around in his pocket again, this time for the medical tape and
scissors. Gently he secured the IV wires to my hand with an extra layer of tape. I
could feel him looking at me, wondering why a teenage girl would
voluntarily
put herself through all of this.

I didn’t feel like a teenage girl. I felt like a fifteen-year-old warrior. There was
nothing innocent about my pain.

Once again, I could feel the kind nurse’s eyes take in my motionless body.

He probably felt bad for me.

Maybe he knew me. Was this nurse one of my mom’s hospital friends? Maybe I’d met him
before. I wondered if he knew how much I wanted this.

The pain in my legs felt twisted and cruel. The sensations contradicted themselves—
hot, then cold, sharp pains followed by a dull, achy numbness. The chilly hospital
room felt like it had become even colder in the minutes (or had it been hours?) since
I first woke up. I swore I could feel my drilled and severed bones shiver and my muscles
clamp around them. It was a shocking, terrifying sensation, but I couldn’t scream.
The force of the sound exiting my mouth would be too painful to bear. All I could
do was remain still, keep my eyes shut, and allow the tears to fall down my cheeks.
The nurse, still beside my bed, gently lifted them away with his fingertips. His hands
felt smooth and young. I silently wished that he’d stay.

As I listened to him sift through a drawer, I noticed that my throat was so swollen
from the long intubation that I could barely swallow. And a peculiar, thick smell
was everywhere. It was inside my mouth, coating my tongue, and filling my head. The
scents of bleach and laundry detergent that lingered on my blankets mixed with the
smells of plastic and rubbing alcohol— a sickening perfume of my surgery. Once I noticed
it, I couldn’t stop smelling it.

I felt the nurse leave. Finally, I lifted my heavy eyelids just a bit. Through the
open sliver, I noticed the light in the hallway illuminating another profile. The
rest of the room remained dark. Sitting at the end of my hospital bed with his head
in his hands was my dad. His outline glowed in the dim hallway light. When I opened
my eyes just a millimeter wider, I saw that he was crying.

Dad looked crumpled, defeated. He never talked about blaming himself for giving me
half of the diastrophic dysplasia gene that caused my dwarfism. I could only imagine
that was what he was feeling now. Despite being able to fix damn near anything placed
in front of him, he could never fix me.

My father felt a different kind of pain than I did in the ICU. He hated himself for
not having enough strength to stand up and voice his discontent about my decision
to have surgery. He damned my mother for not only also supporting my choice, but also
encouraging me to go after my independence at any cost. Mom understood what I yearned
for, but Dad never saw a need for it. In his mind, no matter how old I got, he would
simply take care of his little girl for as long as she needed. I think his pain, ultimately,
was worse than my own.