Walk Like Me- Memoir Excerpt

July, 1990

One day when I was six I asked my father if I would die.

We were walking hand in hand in the fresh embrace of early summer, down the jagged sidewalk on our Long Island street, the day before my first surgery. His hand clasping mine was like the sun itself, warm blooded, large, Italian, and perpetually tanned. The leafy green treetops bent toward one another and kissed on the horizon.

“Remember how you felt in the pool?” he asked.

“Warm and comfortable” I said.

He nodded. “So that’s just like tomorrow. Whenever you’re scared, just think of how you felt in the pool.”

I loved the pool. We had full use of our landlord’s pool in the backyard, and I’d float lightly over the water, my upper arms protected by bright orange swimmies until my dad took me out to the middle where I could no longer touch the bottom. There, he’d hold me in his arms, molded to his chest, until the pace of my breath matched his.

“Dad?” I asked.

“Yes?”

“Will I die tomorrow?” I said, deadpan, rational. If I was supposed to die the next day, if God wanted me, then that was what was supposed to happen.

He stopped and turned to me, but said nothing. Instead he shook his head, sighed with disbelief, and lifted me up to the sky in one fell swoop.

“No.” he whispered.

In his grasp I was a ragdoll, locked in. His body shook violently with labored breath as he buried his head in the small of my neck and I knew he was crying. My father’s emotions run just as large as he is, overwhelming. Like an opened floodgate, you have to just wait for it to run its’ course.

Children run through life with their arms outstretched, full speed ahead, invincible. I’ve always walked with my head down, watching for cracks in the street or inconsistencies of any kind. A traumatic birth causes inherent caution. The person I am now is not much different from the person I was when I was seven, I have the same thoughts and consider the same things, especially when it comes to navigating my physical space, but it’s like my computer got an upgrade and now has a higher connection speed. I didn’t walk until I was two years old, and even so, falling down was just a daily occurrence for me. I have permanent scars on my knees from tumbling so much. My mother even resorted to putting bright pink knee pads on me when I walked around the house.

I was born with mild cerebral palsy at 31 weeks, 8 weeks early. CP results from an insult or injury to the brain that occurs before, during, or slightly after birth. Though I’ll never know exactly what caused the CP, it is far more common in premature births. In my case, only my balance and gait were affected. In more severe cases, children are wheelchair bound and/or developmentally delayed, or unable to speak.  

We woke up so early on the morning of my first surgery that it was still dark outside. It was July 5th, in the middle of Summer, but I remember being very cold. The lights in our house were out and the light from the windows shone blue onto our white tiled floor. My mother put me in the back seat of our black and brown Cadillac El Dorado under a blanket as my father drove us into Manhattan to the Hospital for Special Surgery on East 70th St. I listened to the subtle rum bump of the tires on the highway, and buried my face into the blanket as we went through the Midtown Tunnel, the yellow lights making a pattern behind my closed eyes.

In the waiting room I saw my last name on a large dry erase board, among other names, scheduled to go in for surgery. “Quenqua, 6:30.”I was only allowed to take one parent into the operating room with me that day. There was no question in my mind that I wanted my mother. I loved my father, but my love for him was dressed up, pretty. Daddy’s little Girl in a beautiful dress, with silver stick on earrings and patent leather shoes. If I was sick, ugly, scared, raw, it was no question. I needed my mom.

A portly male nurse in scrubs with kind eyes and a blue cap came by to wheel me into the operating room. My anesthesiologist, mom explained. Mom always used the full names for things. At six I knew I had a vagina, and that I urinated. I never used euphemisms like “down there” or “pee pee.”

“What kind of anesthesia will you be using? I’d prefer the mask to the IV.” I asked.

“That’s the first time a six year old has ever asked me that.” he laughed.

“Whichever you’d prefer.”

“I don’t like needles.” I informed him.

He nodded at my request. “All right then, mask it is.” He gently moved his hand forward and  put blue cap on me and medical mask on my brown teddy bear, Gund, who I’d named that because that’s what the tag very clearly said that was affixed to his bottom.  

Dr. Root, my surgeon, came over to my hospital bed. He was in his sixties and pioneered this kind of surgery. He took me on as part of his research in pediatric orthopedics, when he wasn’t technically taking on any more clients. His face was like soft calf leather that turned effortlessly into a knowing smile. He put his hand on mine. My mother looked at him, worried. Her body vibrated.

“I hope you had your Wheaties this morning.” she said.

The nurse wheeled my hospital bed into the operating room. “Here we go” he said. My mother followed. 

The operating room was cold and sterile and I couldn’t stop shivering. My teeth chattered violently until a kind nurse wrapped me in a warm blanket. The room must have been full of about 6 doctors and nurses, all dressed in what looked like Hazmat suits. To me they looked like they belonged in ET, each with their own oxygen tanks. The room had to be kept incredibly sterile.  I laid on the table and held my mother’s hand. The anesthesia smelled like nail polish and glue, it was dizzying. In fact, if you smell rubber cement from a craft store, that’s the closest I can approximate the smell that filled the room. Two male nurses with matching black moustaches pointed to a blue latex balloon that inflated with my breath.

“It might smell a bit like nail polish now,” they warned me. The smell intensified.  Try to blow up the balloon.”  And that’s the last thing I remember.

When I woke up in recovery I couldn’t move below the waist.

“What’s on my legs?” I asked.  I’ve been told I said, “what the hell is on my legs” but it depends on who you ask.  I was in a hip spica cast, from my waist to my ankles, legs separated by a bar. No one told me about that part.

When I woke up in the recovery room I remember my mother wasn’t there. I was surprised, terrified even, it was unthinkable to me that she wouldn’t be there. She was always there, at every moment, insignificant or no, how could she not be there in this one? I was told she was out having a cigarette. I hated cigarettes. 

She revealed to me years later that she was there at first, but needed to take go outside for a minute out of shock because didn’t recognize my face. The surgery, which I loved reciting the name of at seven years old: “ a bilateral, femoral osteotomy with internal fixation” to the delight of doctors and strangers alike, took four hours to complete. It involved placing me on my stomach, cutting into my hips, breaking them, shaving them down, and putting them back affixed with metal plates. I could expect up to an 80% improvement in my gait. A year later they’d go in again and remove the hardware. Since I had been on my stomach for four hours, my face had swelled to an unrecognizable size, the image of which burned into my mother’s memory for years.  

I was no stranger to doctors. I’d been under the care of a neurologist since birth, a kind, soft woman named Dr. Borofsky. We saw her about once a month until I was seven years old. In her office I had to take off my shoes and socks and she’d measure me and take my weight. Then she’d test my reflexes by hitting my knee joint with a rubber ball instrument until it kicked forward involuntarily. I supposed this meant I’d done well. Then she’d scratch the length of the bottom of my feet with a dull point and nod. Her hands felt warm holding my feet. Then she’d stand me up on the cool linoleum floor and ask me to walk. I had lots of doctors ask me to walk the length of their hospital hallway growing up. I didn’t particularly understand why they were always asking me to walk back and forth in front of them, I knew I had CP but I didn’t think I walked any differently from anyone else. The shakiness of my gait and balance seemed normal to me.

I remember the day my parents told me I was going to have the surgery. I was in a doctor’s office and a woman with brown hair and a white coat asked me to play with a ball, then walk back and forth. I knew my dad was for the surgery and my mother was against it. This made sense to me because my dad was always pushing me physically and wanted me to do more things where my mother was happy with whatever I could do. I knew that today was D- day, that today was the day it was going to be decided, one way or the other. I was nervous but excited, too. 

“Honey,” my mother explained, kneeling to my level. 

She paused and took a breath.

“We’re going to do the surgery.”

I nodded. So that was that.

“Okay.” I said.

Her eyes were so open and fragile, she didn’t want to do this, she was in more pain than I was, I knew. I could feel it radiating off of her. She hugged me and cried, sobbing a little. Afterwards my dad lifted me up high into his steel arms.

“You’re going to walk so much better, killer.. You’ll see.”

One of the first steps in the process of having my first surgery, mom said, was going for something called a gait analysis. When I first heard her talk about it, I thought she meant “gate” analysis, but I wasn’t sure what kind of gates they were planning to analyze.

“What do you mean ‘gate analysis?” I asked her, standing in our kitchen.

“You’re going to go to the hospital and Dr. Root is going to study the way you walk.”

This sounded interesting.

“Okay, but why are they calling it a gate analysis? What gates?”

“Gait means ‘the way you walk.’”

“It does?”

I ran to get my dictionary, turned to this new word and read aloud:

“Gate. Oh. G-A-I-T. A manner of walking, stepping or running. Cool. ”

On the day of the gait analysis I was asked to wear running shorts and a tank top. I chose my black ones with the hot pink stripes down the sides. Once there, technicians affixed little plastic balls all over the outline of my body, about fifteen to twenty of them from my head to my foot.

“Marissa, it’s so cool. You walk and then it’s going to come up on that computer screen, just the outline of you walking.” Dad explained. Mom was fascinated by the computers and the entire process.

“Marissa, please walk on the straight line marked on the floor.” Dr. Root asked.

I started to walk and followed the line perfectly. I knew they were going to be watching my gait so I tried to walk as straightly as possible. I hardly stumbled or wavered from the thick white line. I finished, pleased with my performance.

He smiled.

“Great. Again please.”

By the end of a few passes, Dr. Root called us all over to view the video they’d taken, the video that would be translated to the computer so just the outline made by the white glowing balls would be visible. That way, they could see exactly how I walked and whether or not I’d be a good candidate for this type of surgical procedure.

When the video began, I was shocked. I wasn’t walking straight at all. I dipped severely to the left and right, I was completely unstable. I stepped all over the line. I watched myself, transfixed by what I saw.

“What is it honey?” my mother asked.

“Do I really walk like that?”