Julia LiPuma
“Goodbye Drew,” I exclaimed as I did every time I left his house after an action-packed hour of play therapy. Every Wednesday when I arrived, Drew would immediately pull me into an array of activities. First of course we would, or rather I would sing our weekly playlist of Drew’s favorite songs, which include “The Wheels on the Bus,” “If You’re Happy and You Know It,” and “Happy Birthday.” Drew, a non-verbal eleven year-old boy with autism and Down Syndrome, would just clap and babble along with a grin. But this particular Wednesday afternoon was different. As I was waved goodbye, he said for the first time, “Bye Judia.” Now of course my name is Julia, not Judia, but it was close enough. His mother audibly gasped and looked from me to him as we both broke into wild applause. “That’s the first time he ever said anyone’s name!” she whispered. Leaving his house that day I understood again that I need not only be the recipient of kindness and assistance but I can also be the provider.
I have cerebral palsy and that makes my life, at times, challenging. This disability prevents me from walking independently but also from participating in situations that most children experience. Some of these include jumping on the trampoline, diving off the diving board, riding a bike, and worst of all, driving a car. (As you can imagine, I am closely following news about self-driving cars) During moments of frustration I remember a framed quote next to my bedside, which states, “Life isn’t about waiting for the storm to pass. It’s about learning how to dance in the rain.” I have looked at this quote every day before I get up in the morning and every night before I go to sleep for fourteen years, which may seem odd as I am a girl for whom dancing is an unlikely pastime, or at least dancing without my ever-present Lofstrand crutches. My mother probably put it there to inspire me to attend to my physical therapy more enthusiastically but the quote did more than that. Drew saying my name helped me again realize what “dancing in the rain” really means, to find the positives within the negatives, often with the help of one’s personal umbrellas.
But it has taken me a long time to learn about dancing in the rain, and I am still learning, because for many years the rains came long and hard and I have had to depend on a series of umbrellas to get me through. There have been instances when I would wake up with my leg muscles feeling so tight and fatigued, I was convinced I was an 81-year-old trapped in a teenager’s body. During these times it was Miss Jill, my physical therapist and most faithful umbrella, who came when I called. She would stretch my tight, tense muscles for what felt like the 10,000th time. When my walker went wild and wonky at school, and I couldn’t make it from 6th period English class to 7th period science class at the other end of the building, it was Miss Jill who came when I called, showing me how to make the proper mechanical adjustments, and off I went. When it became clear in 9th grade that hand-writing an essay about Romeo and Juliet would take me 10+ hours, it was Miss Jill who came when I called. She helped me figure out how to use a voice-to-text program. Here we are four years later, and you are reading my voice to text essay!
I have had eight surgeries. My fourth surgery, one that rotated my errant hip back into the socket where it belonged with nine titanium screws, is the one that stands out the most. I thought it would eat my whole summer with its giant mouth of pain and boredom, but more of my umbrellas showed up. My friends kept me company while I painstakingly healed in my mom’s office, my post surgical “I can not walk upstairs to my own bed” bedroom. They painted my nails and toes, and when I was feeling really grimy from not being able to access my shower, they gingerly wheeled me on to the summer-steamy deck. They hosed down my stinky, sweaty body until it glistened and shined. Laughing along with my beautiful parasols, I did get some summer after all.
A few years later, during my summer internship at the Isla Vista Youth Project, I worked in a toddler room dedicated to serving working families, many who struggle to survive on inadequate wages. I held them. I sang to them. I held a hand as chubby legs toddled over to the see-saw. One boy, David, grabbed a book and ran to me every time I walked in. A picture of him pointing into a book as I read it sits on the desk where I write. As I read stories and helped these innocent, sweet two year-olds, I thought about the social inequities they didn’t even know yet that they faced. I wondered how I could help these children reach their highest potential as people in my life have helped me to do. I wanted to become their umbrella. During my time working at Isla Vista, I devoted myself to making these kids feel loved, treasured and safe. I am not sure if I made a lasting impression on them, but they surely did on me. They reminded me of something I had first discovered through my work with Drew, the value of being an umbrella and helping others learn to dance in the rain.
This lesson keeps emerging in my life, a hospital where I work in the psychiatric department. I have to admit I was scared on my first day there as a volunteer, and did not know when to expect. They sent me to Building 11, Floor 5 and on my way to the dayroom I saw patients crying in their wheelchairs, and heard others shouting from their beds. I heard strange beeping sounds, which I later found out were patients’ chair alarms, designed to alert security personnel that someone was trying to evade safety protocols on his or her wheelchair. Then I met Sue, with whom I still work with today. Sue is unlike most of the other patients. Known as the bingo queen, she has a bubbly personality and makes everyone smile. Every time I visit Sue we play games. Over checkers, dominoes, canasta, rummy and chess, I got to know her more and learned about her own set of formidable challenges. She has bipolar disorder, many health issues and has suffered the ultimate heartbreak of a lost child. There probably isn’t an umbrella big enough for that loss but I hope that my visits provide momentary breaks in the cloud. When Sue says “Will your mom be mad if I steal you?” I think maybe they do.
Dancing in the rain will look different for different people. Drew’s dance is different than David’s dance, which is different from Sue’s dance. My dance has been about graciously receiving help while joyfully giving it. It has been about cherishing my many umbrellas even as I hold one out over others. I mean to make it my life’s work. As a psychologist, I hope to help other people learn their dances. Everyone should have opportunities to dance in the rain, whether it is a samba or a simple box-step.
—-real names not used!
