“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.
CHAPTER 4
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.
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 stret
ch 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.
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