Standing Out by Trying to Fit In
March 2014 Issue
THE FIRST DAY OF SUMMER VACATION
"Accept what you can't change and change what you can't accept," as the saying goes. When that change happens to a six-year-old girl, you accept it with the naivety that only comes with the innocence of childhood. My story begins on May 28, 1975, in the small town of New Ulm, Minnesota. Although I was born nearly seven years to the day earlier, that is the day I say my life began.
It was the first day of summer vacation after first grade. All of the neighborhood kids were outside playing at each other's houses and running through each home as if it were our own. I was at my best friend Marnie's house, and after a few hours of playing with our Barbie dolls, I decided to go home to get more toys. I remember looking down the driveway and then looking both ways before crossing the street. But I never made it home that day; I was struck and run over by a dump truck hauling gravel.
What happened after that I've been able to gather from others who were there, since I, fortunately, do not remember anything that happened after I left the driveway until well after the accident.
Within moments, my friend's dad ran to me in the street and covered my legs with a blue doll blanket. My brother, who had been playing down the street, rode his bike to our house, ran inside, and screamed, "Some dumb truck just ran over Leslie." My mom, who was hosting a fundraiser planning committee, ran barefoot down the street after hearing my brother's shout.
Within minutes, she was at my side. Finding me surrounded by our friends and neighbors, she sat next to me encouraging me to sing "Jesus Loves Me" while trying to keep me awake.
The first responders were two police officers, one of whom placed a tourniquet around my left leg. I was taken with my mother by ambulance to the local hospital only to be turned away because it was not a trauma center. We were driven to the hospital at the next biggest town, nearly 30 miles away, and were turned away for the same reason. The driver was instructed to take me to Rochester or to Minneapolis, but was advised that I would not survive if he chose the latter. My mom kept me singing the entire way.
Within moments of arriving, I was prepped for surgery and had my left leg amputated above the knee.
THE JOURNEY BEGINS
My first memory after the accident is waking up in the intensive care unit surrounded by my mom, dad, grandma, and grandpa. My grandpa handed me a stuffed animal puppy resembling their dog. My mom told me about the accident and that my leg was amputated, that it would never come back. And as much as possible from the psychological perspective of a soon-to-be sevenyear- old girl, I understood.
Within days, I was transferred into an isolation room because of a staphylococcal infection that had developed secondary to the wounds. This meant that people could come in, but I could not leave unless it was to go to surgery for revisions or dressing changes.
I recall what could have been some of the worst days of my life as being some of the best. Every day felt like Christmas. My delight in receiving the cards, gifts, and flowers that filled my room outweighed the pain I was going through. When the nurses snuck in a small cake to celebrate my seventh birthday, I thought I was the luckiest little girl in the world.
It was during that time when a fair-haired man walked into my room and introduced himself as Steve. Little did I know that this man-Steve Amundson, CP-would be my superhero. He is the person to whom I give utmost gratitude for holding my hand while guiding me in my new life with limb loss and instilling a firm foundation for self-advocacy.
Once transferred out of isolation, I learned how to walk again. Although 38 years have passed since taking those first steps, I remember them as though it were yesterday. With the residual limb of my left leg in what I now know as an immediate postoperative prosthesis and my right one in a full-leg plaster cast, I took my first steps. A prosthetic foot was attached to the end of the pylon extending from the distal end of my casted left leg. With that rudimentary prosthesis, I stood up from the wooden wheelchair, looked down at my feet, and proclaimed that I had a Barbie foot. I was delighted.
Immediately, I saw that I had gained something seemingly spectacular from such a catastrophic loss. I was also determined that gaining a prosthetic leg was not going to stop me from starting second grade.
Being an inpatient at the Mayo Clinic, St. Marys Campus, Rochester, Minnesota, had its advantages. Not only was I immersed in one of the best healthcare systems in the world, but I also graduated from the Mayo Clinic's Physical Therapy Department, which shaped my success in learning to use my prosthesis. Physical therapy was hard. It was painful. It was frustrating. But it made me a lifelong advocate of the discipline and the positive outcomes it produces. Alongside my prosthetist, the staff recognized that I had a goal to reach, diligently guided me along the way, and kept me on a timeline. I was discharged home before Labor Day.
SECOND GRADE WITH A NEW LEG
Equipped with my first prosthesis and a small cane, I was excited to start the first day of second grade like any other child would be. I was excited to be back with my friends and back to the normalcy that I had once known. I hadn't changed, except for spending the summer in the hospital and learning to walk with a prosthetic leg. The positive reinforcement I received from my friends, teachers, and others assured me that I was still the same little girl I had always been. My steadfastly strong parents also recognized that they needed to let me soar and got me back into activities I had done before my accident, such as participating in Brownies and tap dancing.
ALWAYS TEACHING OTHERS
While I recall my childhood with fond memories, it was not always easy. There were a lot of tears, a lot of frustration, and a lot of confusion as to why people stared at me. To me, I was Leslie. I was no different.
I developed what, in retrospect, was probably a defense mechanism in being grateful that the only thing "wrong" with me was my leg, while thinking that people who stared had something "wrong" with their heads. It was hard for my younger self to understand what I know as an adult: People are curious.
I have made it my practice to talk about my leg when someone asks about it. Without knowing I was doing it, I did not want to be defined by my left leg being different from my right. But I also did not want people to think that I was ashamed by not talking about it. So I talked.
I still talk. In doing this, I have seen how much it teaches other people. It teaches people a little about life with limb loss. It teaches people about accepting differences, and it teaches people about an experience different from theirs. It teaches people about empathy.
LIFE COMES FULL CIRCLE
Although I have lived with limb loss since May 1975, it was not until last year when I realized and appreciated the "why:" Why my accident happened and why I feel I am supposed to use my experience to help others with similar experiences. Although I have been honored to do countless peer visits throughout my adult years, the visit I had last April with a seven-year-old girl who had recently lost her leg forever changed my life.
After meeting her and her parents, I told them about my leg and showed it to them. Recalling my seven-year-old self, I knew what they wanted to know. So I told the girl things that I wish I would have heard and that I wish my parents would have heard. I told her that life would treat her kindly and that she would be the shining star she already is. When she asked if she would ever dance again, I told her that she would.
Within moments, she reached out to my prosthesis and started asking about it and the various bumps and things under the foam cover. She told me about her prosthesis. She whispered to her dad, who left the room and returned with her prosthesis so that she could don it and show me how she puts on her shoes, fastens the Silesian belt, and deals with her phantom-limb pain.
IT'S ABOUT GRATITUDE
I returned to the hotel after meeting the little girl and realized that I would repeat the last 38 years of my life just to experience that same moment again. I realized that the gift I gave to her was incomparable to what she gave to me. It confirmed my conviction that we all have things we must survive and that we must attach gratitude to those things.
Maybe it's the loss of a loved one, the loss of a dream, the loss of a fortune. For me, it was the loss of my leg. The only thing I lost on May 28, 1975, was my leg. That's all. I have gained opportunities that I would never have had otherwise. It has allowed me to stand out by trying to fit in.
Maybe it's the perception from which I first accepted my life with limb loss, but for all of us, life is about using that which could limit us to make our lives limitless.
Leslie Pitt Schneider, JD, RN, CCRC (ACRP), HT (ASCP), has 22 years of regulatory compliance, legal, and healthcare experience. She is currently the clinical and regulatory affairs manager for Ottobock Healthcare, Minneapolis, Minnesota. You can read her reflections on limb loss, fashion, travel, and fitness at www.onelifeonelimb.com