Author’s Note: In 1973, my older sister Annie had brain cancer at the age of two and was given six months to a year to live. She survived the surgery, experimental radiation and chemotherapy but the treatments left her severely brain damaged. She was a vibrant and active child but with year after year of seizures, strokes and falls, her mental and physical health deteriorated. With each major episode, doctors would say they didn’t know how much time she had left. My mom, dad and I lived under this canopy of impending death until she passed away at the age of 35. The following is a story about one of her scariest episodes when she was twenty.
After my parents’ divorce, I was getting used to driving to Los Angeles to see Mom and Annie in their Downtown industrial space converted into artists’ lofts. Mom knew she wouldn’t be able to make it as an artist if she stayed in Rialto—it was a desert in more ways than one. One night I babysat while Mom was at an opening.
“Annie, are you still hungry? You didn’t eat much.” I asked when I put her almost untouched plate of food in the sink. She shook her head no.
“Want to watch TV before you get ready for bed?” She nodded her head. I pushed her wheelchair in front of the TV and before I turned it on, we heard a crash. “What was that?” I asked.
Annie shrugged. The windows were open so I couldn’t tell if the noise came from outside or in. I jumped up onto the window ledge and looked at the dark parking lot and alley but saw nothing, then checked the kitchen area to see if a dish had slipped in the sink. Finding nothing, I went back to sit with Annie.
“Dwydyethone,” she said with an impish look.
“What?”
“Dwydyethone.”
“I don’t understand what you’re saying.” The muscles between my shoulder blades bunched up and I could feel myself losing patience.
“Dwy-dye-thone!” she said slowly, just as agitated as me. Even though speech had somewhat returned from the stroke last year, her voice sounded like her tongue had grown too big for her mouth. If we hadn’t already learned or created a sign for what she wanted or needed, it felt like we were trying to communicate under water.
“Dee do dee do,” she spoke/sang. I vaguely recognized the tune and thought for a minute. I snapped my fingers.
“Twilight Zone?” She nodded quickly and let out a squeal.
I gave her a high five. “Good one, Annie.” Then I tiptoed back and forth like I was looking for clues. We both laughed in our own way, for our own reasons—Annie at her well timed joke, me from relief. She wiped her watery eyes with the back of her left hand that was beginning to curl in on itself. “Diddoo?” she asked.
That word I knew, so I grabbed her a tissue and helped wipe her eyes. We held hands as we watched Who’s The Boss. I got her ready for bed and tucked her in.
I spent a lot of time in L.A. that summer, even though I was still living with Dad in Redlands. Mom needed help with Annie—but I would have gone anyway. The guts of my broken family were torn out and spread across the 10 freeway so I drove and drove trying to repair what I could. Every time I said goodbye to my sister, the tenuous stitches ripped right open.
By Halloween night of that same year—my first quarter of college—instead of partying, I drove to Children’s Hospital of Los Angeles to see my sister. Storms in Annie’s brain were raging and damage was escalating. She had stopped eating altogether and hadn’t spoken in weeks.
I fought my own thoughts as I fought traffic. Was this the stroke that would knock her down once and for all? Was there something I could have done if I’d stayed with her? Was she not getting enough attention and stimulation? Why didn’t I wear a costume? I snaked my car up the dim parking lot. Screeching tires made the hairs on my neck and arms stand up at every turn.
In the lobby, fluorescent lights reflected off the glittering orange and black Jack-o’-lanterns, green witches and gauzy spider webs.
“I’m here for Annie Kunstler. I mean Oma.” Annie’s legal name is Oma but she changed it on her seventeenth birthday due to her love of the musical.
“Oh hi, I remember you,” the kind hospital volunteer said. “How’s she doing?”
“We’re not really sure.”
“Well, she’ll be happy to see you. Happy Halloween!”
She handed me a visitor’s badge. I rubbed the bright orange sticker gently onto my chest, holding my palm on it longer than necessary, trying to soothe myself. This was Annie’s longest hospital stay since she was diagnosed with brain cancer eighteen years ago. Her case was so unusual, doctors couldn’t figure out a diagnosis and weren’t coming up with viable treatment options. One of the choices they gave was to let her starve to death.
On the elevator, I watched the floors light up one by one, breathed deeply and repeated the meditation mantra I learned when I was seven. For a moment, the rhythm of the lights steadied my breathing until, like a defibrillator, the ding and opening door snapped my heart back to racing. Readjusting my backpack and face, I stepped out with a smile. Everyone in a children’s hospital needs a smile.
Annie didn’t see me when I first got to her room. Her bald head and calm face rested in the pillows like an egg in a nest as she looked up at the television. Annie’s lungs and heart were working hard on their own to support her life, but she had wires coming from her chest and fingers, monitoring heart and oxygen levels. She also had an IV on her right hand, even though that was the one that still worked. Attached to those wires and machines she looked like a mad scientist’s experiment which, in a way, she was.
Her big belly, a snowy slope of sheets, reminded me of the Stevenson poem our mom used to read to us when we were sick in bed. It was about the magical worlds we could make on a simple counterpane.
When I was sick and lay a-bed,
I had two pillows at my head,
And all my toys beside me lay
To keep me happy all the day.
I wish I had brought dolls or animal figurines so I could make them ski jump off the slopes onto the cold hospital floor. That would crack her up.
It was just past dinner time. There was a salmon-colored plastic cloche on the wheeled table next to her bed. I opened it to find untouched mashed potatoes and Jell-O, the hospital’s valiant attempt to try and get her to eat.
“Happy Halloween Annie!” I yelled and her eyes darted to the side like she was having a seizure, but she quickly turned her head and smiled at me.
“I notice you didn’t eat your dinner again.”
She shook her head, made a thumbs down, and pointed up, to It’s The Great Pumpkin Charlie Brown. Linus’ raspy and innocent voice came from the little plastic speaker resting at her side.
“I got here just in time!” I wheeled the table with the ignored room service out of my way and helped her scoot over so I could lay next to her. I put my head on hers and we watched Linus stay up all night in the pumpkin patch with sincerity and trust until his sister Lucy brought his shivering body to bed. Even though he never showed up, and Charlie Brown ended up with a bag of rocks. I said my own little prayer to the Great Pumpkin as I shut off the TV.
My stomach started to growl; I’d forgotten to eat. Annie heard my stomach and pointed towards her uneaten food. I shook my head. Then she held up her arm IV.
“Ha-ha. Good one, Annie.” Without speaking a word, she was quick with the jokes. “I brought you some presents.” Her face lit up and she made a grabbing motion with her fingers. “Okay, okay. I’m getting them,” I said as I dug into my backpack. Just then her IV beeped and I got up to check.
The nurse came in right away, so I stood aside as she tapped on the tubing just like I was about to do. “Hi Oma, I mean Annie,” she said as she fluffed the pillows and checked to see if any food had been eaten. “Hi Kerby. Do you know if she’s eaten anything?”
“I don’t think so. It looks untouched. Did anyone try to feed her?”
“I’m not sure. I just got here. I’ll take this tray out of your way but I’ll leave the Jell-O, in case you can get her to have some.”
“I’ll try.”
Before she went out the door she turned around and said, “Have you ever thought about being a nurse? You’d be wonderful. You’re always so gentle and patient.”
“Not really. I just know what my sister needs.”
“Well, you’re young still. Give it some thought.”
“For sure.”
“I’ll let you know when visiting hours are over. Have fun, you two!”
It’s true I had a sixth sense when it came to my sister. One summer, when Annie was staying at our house in Redlands for the weekend, our Dad, his girlfriend and her two sons were splashing in the jacuzzi. Annie was in her wheelchair on the side of the pool nearest to them, and I was swimming laps. When I stopped to catch my breath at the deep end, I saw Annie’s eyes turn and her body lurch forward. I’m not a strong swimmer but at that moment, I became a gold medal athlete. Once I got to her side, I hoisted myself across the hot cement just as the weight of her teetering body tipped over her wheelchair, throwing her into my arms, instead of into the pool. The blood from my skinned wrists and stomach blended with the water like tie dye onto the side of the pool as I held her on top of me until her seizure subsided. Dad and the others stared at us in amazement.
Once the nurse left, I asked if Annie wanted any Jell-O. She turned her head to the side and closed her eyes.
“Come on, don’t you want some?” I cajoled but she wouldn’t have any of it.
“Back to presents then?” She nodded her head. I pulled out a few packs of Halloween stickers. She gave me a thumbs up.
“We can put these around your room if you want.” Another thumbs up.
Then I handed her a stuffed black cat and nestled it in her neck while I made a purring sound. Lastly, I gave her the card. I gently opened the seal and put her clawed fingers on her left hand into the lip of the envelope so we could rip it apart together. On the front was a drawing of the California Raisins dressed in pumpkin suits. In a silly deep voice, my best impression of the Raisins, I read, “How did we know it’s Halloween?” She shrugged. I waited a dramatic beat, opened the card and read, “We heard it through the pumpkin vine!”
She closed her eyes. Everything went silent except her beeping machines. What just happened? Did she not like the card? Did she fall asleep? I put my cheek near her mouth to make sure she was breathing. Then she sucked in the loudest squeal of a laugh I had ever heard from her. Sweet relief flooded my chest like a pillowcase full of candy. Annie pointed to the tissues and I buried my face in one. She put her hand on my back until my shoulders stopped shaking.
The nurse came in with a fresh blanket. “Visiting hours are almost over. Time to say goodnight.”
“Well, Great Pumpkin,” I said to my sister. “I better get going. I love you.”
Annie put her fingers up in the sign of a “K” which looks like a thumb holding up a peace sign, her sign for Kerby. Then she put her hand to her lips and extended it out towards me, the sign for “thank you.”
“You’re welcome, sis.” I wrapped my arms around her, kissed all over her face and said goodnight. The nurse helped tuck her in, wrote in her chart and walked me out.
“Your sister is going to be okay.”
“I know,” I lied.
In the crowded elevator down, I kept my eye on the descending numbers, not wanting to look at any of the passengers for fear I’d break down. I thought about being a nurse someday but knew I couldn’t be this way for anyone else but Annie.
Before I got back on the freeway, I went to a drive-thru and ordered my usual: bean and cheese burrito with no onions, medium Dr Pepper with extra ice. Balancing the drink and burrito between my knees, I added a glob of hot sauce and turned towards the exit. I slammed on the brakes just missing a skeleton, dead bride and zombie laughing and drinking from extra-large plastic cups as they crossed the driveway without looking.
Zombie yelled, “Watch where you’re going!”
Dead bride gave me the finger and Skeleton raised his ulna and radius up like he was going to smash my windshield. A car honked at me from behind. Hot beans and thick red sauce burned my chest and cold, sticky soda seeped into my Converse. I pulled back around into the parking lot, opened my door, kicked the cup onto the concrete, mopped up the mess and ate what was left of the burrito. I threw the trash away, then got back into my car, put my head on the steering wheel and cried, waiting for my fear to subside. It never did, but I put the car in gear anyway and drove back into the dark.