When I was born, my legs were up by my neck. I was two weeks old when my parents brought me to the Primary Children’s Hospital in Salt Lake City, Utah. After many hours with the doctor, doing examinations and taking x-rays, there were so many things wrong that he could give my parents no assurance of what could be done.
I had no hip-sockets. I had a short spine, turned in knees that moved sideways instead of up and down, and club feet because I lacked muscles to flex them up or down. They called it spina bifida.
My parents were asked to let me stay at the hospital so they could work with me constantly and track my progress. “But,” the doctor advised, “don’t forget her.”
If I was ever going to be able to walk, the hospital had to have me. From then on, my life became a seemingly endless cycle of surgeries, body casts, months in the hospital and lots of hard work. At three years of age, I wore leg braces and started walking on crutches.
As a child, my father sat me up at the piano with him, and I doodled on the keys. He recognized my interest in music. It was a bonding moment with my dad—and with music.
I had 13 surgeries from age nine months until about twelve years old. Gratefully, the medical services were provided at no cost to us through the Primary Children’s Hospital.
A lot of my surgeries were bone surgeries, twisting and turning bone. I don’t remember very much, except wanting to escape the discomfort.
Every several months, we went to the children’s clinic to see my progress. I had to perform for the doctor and walk for him. I wondered if he would find something wrong with me and make me stay at the hospital. That meant another surgery, body cast, pain and agony.
Looking back, I was blessed with an ability to ignore and look past things that were uncomfortable. It helped me to go on.
Self-reliance is a strong value in my family, and we never had government support. We worked through problems ourselves with a can-do attitude. Dad provided a stable influence, monetary sustenance and calm support.
Mother was amazing. She saw in me, not the disability, but the ability and the possibilities. She poured into me a transfusion of confidence in myself, that I could have a normal life and cope with whatever spilled out in front of me.
I spent my life making my physical self work, putting other people at ease and keeping up in the society in order to do what I wanted to do. I figured out ways to cope with life on crutches. I figured out how to go through a door with my hands full, and in one swish, open the door, put my crutch to hold the door and move through the door fast enough that the door didn’t slam on me.
Before I started junior high school, we moved closer to the hospital, and I had my last surgery. I was very shy and didn’t feel like I belonged anyplace. I started piano lessons, and Mom asked a good friend of hers to give me vocal lessons. She had a gorgeous voice and sang in the Mormon Tabernacle Choir, and she helped me to recognize my musical ability.
Then, my attention and creativity focused on practical matters—gaining an education, developing my talents and becoming entirely independent. I started my career in vocal music education. For many years, I taught junior high school students and sang with the Tabernacle Choir, both of which I loved.
After the choir tour to Europe in 1998, I hurt so badly from walking all over with my crutches that the doctor sent me to see a specialist in spina bifida. I was 49 years old at the time, and the physicians had never seen someone with my condition live to be such an advanced age.
In 2000, after 30 years of singing with the choir, my tenure was over. That same year, the new principal saw me struggling to get on city bus with my crutches, and she made note of it. She didn’t know me or my teaching skills. My arms were slowing down, and she saw inadequacy and non-professionalism.
My position status was changed, and I was offered a half contact at the school. It was traumatic for me. Instead, I went on long term disability and had extended sick leave for a year. At Utah Rehabilitation Services, I took a class with my crutches to maintain mobility, but it was a struggle.
I had been able to function by having people get to know me, instead of just looking at me. But after I lost my job, I felt skittish and self conscious. I had to prove myself all over again. My wonderful experience with the Tabernacle Choir was over, and I faced being out of a job. It was a very hard transition, and I became depressed.
A weeping, open sore developed on my calf, and my legs became swollen and heavy with lymphedema. Moving was difficult and painful. A massage therapist wrapped my legs up to my knees, ordered compression hose and taught me a massage technique to stimulate the lymph system.
In my independent way, I did the wraps myself, went to the clinic myself, and got in and out of the van myself, even in snowy weather. I just put my head down and got through it. I wanted to prove that I was still capable of facing another obstacle and figuring out how to manage it. Then, I had the awakening: I was receiving divine help through all of this.
By the summer of 2001, I wanted to go on with my life. The Utah State Rehabilitation helped me get my first electric scooter. The physical counselor ordered it for me, saying, “A scooter is better than a wheelchair, because your knees don’t bend.”
The scooter he ordered was bright candy red. I would have chosen a muted color, so as not to draw attention to myself. “Oh, no!” I thought. “What will people think? They will look at me and feel sorry for me.” I wanted to hide.
After a split second, my spirits revived. “Why would I let something stop me from moving ahead when it can help me?” I thought. “All my life, I haven’t let image or attitude stop me. If I’m going to worry about myself, then it will limit what I can do and reduce my ability to put people at ease.”
It was just a moment, but it was a defining moment. I decided to basically ignore my image and reinvent myself, reinvent another way to go through the door. I bought a van and equipped it for my use, including hand controls, a lift for the scooter and a ramp to get me in and out of it.
In the fall of 2001, I was hired as a choral and general music teacher in a large school district, which was a great relief. I had an affinity with the man who hired me, the principal of a junior high school.
In October, just after school started, the scooter arrived. It was a great help. For the first time in my life, I had freedom to move! I discovered easy ways to handle objects and faster ways to function.
In the classroom, I could literally buzz right up to the kids in the class and discipline or have them volunteer. When this happened once, the vice principal was sitting in the back of the class, observing me.
A kid was giving me a bad time, so I whizzed right up into his face and said, “You are the weakest link!” It was the name of a game show on TV at the time.
After a couple of seconds, the kids all laughed because of the clever reference. It diffused the tense situation and brought the class back to a comfortable atmosphere. The boy was on the spot, and it unnerved him. He realized I meant business, and he cooperated.
It was a victory moment for me, and teachers have precious few of them. What I whipped up on the spot actually worked, and I saw a smile on my administrator’s face. The scooter had become an extension of me, a part of my unique person.
At that moment, my fears subsided, and I realized that the scooter was going to be okay. I felt approval and acceptance. I never worried after that about what I looked like or if I would be fired. I trusted that he would be fair with me.
My principal hired me with my crutches in a leap of faith. He hired me because I was a good teacher. He saw that I could oversee my program with the children. The experience dispelled his concerns about my ability to be a competent teacher. I valued his confidence. All teachers have personality quirks. Mine just happens to be physical and visible.
For the Christmas project, I borrowed red robes for my students to wear. When the curtains opened on the students in their bright red robes, there was an audible “Ah!” from the parents. They performed wonderfully. It was a tremendously gratifying moment, and I was on the road again!
After retiring, I volunteered at the spina bifida clinic to help new mothers see possibilities through their heartaches. In 2010, I was accepted as a volunteer at Primary Children’s Medical Center. It is thrilling for me to pay it forward a little. When I see how much the parents care for their children—and remember how much my mother and father did for me—that’s when I feel the emotions.
In a society where image is so important, I learned to use tools of perseverance, struggle and self-reliance to turn my abnormal appearance into normalcy and accomplishment. I learned to trust and be contented. I became conscious and deeply grateful for what has gone right all along, including the gift of an electric scooter.
Everyone is allotted a certain time on this earth, a plan for life and certain assignments to do here. My time isn’t up yet, and I have things to do to be helpful because of what I have experienced. As a mentor, I can help others build character strength and have faith and courage, no matter what spills out in front of them.
NOTE: Susan Thompson, a retired music teacher, enjoys a full life of service. She is especially fond of her nieces and nephews and is compiling her personal history for them.
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