By Barbara Leonhard | Featured Contributor
In this article, I would like to share my story of how an illness I suffered as a child affected me. Particularly with the climate of today, I hope this will help inform people of the consequences that can develop in young children who are at risk of getting certain illnesses.
It was the summer of 1958, and it seemed to have happened all at once, where I turned from an active six-year-old girl to a helpless baby overnight. At that time, my family was living in Lewistown, Montana, where my dad was a Presbyterian minister. Mom was at home with three children, aged seven to four. That summer, all three of us contracted measles. But while my siblings’ illnesses took a more benign course, I developed a life-threatening complication: measles encephalitis—a serious and potentially fatal inflammation of the brain that can occur either during the rash phase of measles or following the illness itself.
I have often contemplated my own battle with measles encephalitis…because it did indeed nearly kill me.
In the Blink of an Eye
The onset of my symptoms had been sudden. One day, Mom asked me to run upstairs and fetch something off her dresser. I pranced up the stairs, but once I arrived in the master bedroom, my legs gave out from under me. No matter how hard I tried, I could neither stand nor walk. I managed to drag myself to the stairs and descend on my bottom. Mom thought I was teasing, but then it became clear: I was unable to walk.
My next memory is being carried up and down the stairs for bed or baths. I can’t remember the complete timeline, but I soon lost my ability to fully extend my arms out. I couldn’t feed myself or swallow well, so I was fed baby food. I lost my ability to speak. It was very frustrating to hear in my mind exactly what I wanted to say, but when I opened my mouth, all that came out was muttered gibberish.
It must have been arduous to keep carrying me, so I remained on the living room couch. The living room became my bedroom, my dining room, and my playroom—except I was unable to interact with anyone. All I could do was sleep or daydream while the family went on with their lives around me. It felt like an eternity lying there and trying to ask for things, but my words—as I said—were just slurred utterances, like baby babble. Because no one could understand me, I felt abandoned on the couch and at everyone’s mercy.
Mom’s father was a doctor, so maybe he told her to do this. She made a tent of blankets and put me inside with a steamer. The steam helped break up the mucous enough for me to spit it out. Maybe this saved my life. At the time, I just complied because I had no strength to protest being helpless and having to spit up phlegm into a bucket inside a make-shift tent of blankets…my lonely cell.
Throughout this dark period in my young life, I felt frustrated, vulnerable, scared, and lonely. No one knew what was wrong at this point, and I wondered if this was my end of days.
A Trip to the Hospital
Finally, after some period of time, my parents came rushing home on day and swept me up to take me to the hospital in Miles City, Montana, where my paternal grandfather was dying (I learned later that I was going in and out of a coma at that time). That night, once we arrived to the hospital, I thought I was being taken to see my grandpa. It would be the last time I would see him, because he was dying. These were precious moments, since he was so important to me. However, if I were in a coma, why would my parents be taking me to his room instead of the ER? More on this later…
The next thing I remember is waking up from my coma (I was told it lasted 30 days but maybe that was the complete time frame for the illness) surrounded by doctors and nurses. I felt what I thought were a thousand needles sticking into my legs.
A doctor said, “Say ‘The bear went over the mountain.’”
I must have looked confused, so he repeated. “Say ‘The bear went over the mountain.’”
I said, “The bear went over the mountain.”
There were loud cheers.
“She’ll be okay!” he said.
But I wasn’t totally okay. I still couldn’t walk. My legs felt like lead extensions. Again, I felt helpless and anxious. Mom stayed with me as much as she could while I was in the hospital. Although I was able to ask for things and eat, I felt frightened being left alone in a hospital room for strangers who would enter my room uninvited and fuss over me. The nurses were nice, except for one, who was impatient and angrily plopped me on the toilet one day. She left me sitting there a long time. My hospital stay taught me how vulnerable people with disabilities are.
Finally, I was able to return home but was still in a wheelchair. The doctors said I would never walk again, and there was no physical therapy back in 1958. If so, I would have been taken to a clinic for rehab. No one doubted the words of the doctors.
I felt mixed emotions. Being in the wheelchair gave me a lot of attention in the hospital, and once I arrived home, there were friends of my parents there with many gifts. I even received a darling tea set, something I had always wanted. Though I loved the toys, it was uncomfortable to have these huge, tall people loom over me as they fussed over my sweet, helpless, now 7-year-old self. I felt diminished—ready to be stepped on or tripped over at any time.
Their sympathy mixed with my feeling of helplessness made a dark emotional stew for me. I could have easily gotten spoiled. As a minister’s daughter, I would have even been lavished with attention at church. But I felt very lonely.
Another benefit, I soon realized, was that I was off the hook for doing chores. I no longer was expected to help clean and do dishes. On the other hand, once the attention calmed down, the living room once again became my prison, where I sat alone (since all my siblings and friends had legs and could play outside). Once more, I watched life go on around me outside the picture window in the living room.
I also felt unsafe. At that time, Mom and Dad had to drive from Montana to Michigan to close up Dad’s family home. While they were gone, there were news of a pedophile trying to abduct kids. As a result, Mrs. Bunker, our elderly babysitter, started to keep a gun. I thought about how unable I was to run from danger because I was anchored to that wheelchair, where I felt anxious and defenseless.
A Decision Made
No matter how much attention and gifts I received, I came to realize that being paralyzed in a wheelchair was not the life for me. No one came to play. Soon school was back in session, and other kids continued on with their lives. Life became boring and lonely. I knew that I had to regain my independence—regardless of the doctor’s prognosis that I would remain disabled in a wheelchair my entire life.
So I vowed to change my thinking and my fate. No one was going to tell me to stay in this wheelchair. This change in thought eventually changed my reality, my health…and my entire life.
I’m not sure how long it took—maybe a few days while my parents were away—but I taught myself how to walk again. I used my arms to push myself up so that I could slide off the wheelchair and drag my little body to a chair or a couch, where I would then strain to pull myself up. Although it was difficult at first, I soon became stronger. I learned how to crawl and eventually stand. Once I could stand, I was able to walk like a miniature Frankenstein from one piece of furniture to another until eventually I was walking more smoothly.
When Mom and Dad finally arrived home from their trip, they couldn’t believe their eyes; their little girl was now able to run up to them once again.
Barbara Leonhard is a writer, poet, and blogger at Extraordinary Sunshine Weaver. Her podcast Poetry: The Memoir of the Soul explores universal themes such as Grief, Kindness, and Presence. She taught writing for many years at the University of Missouri and is the author of Discoveries in Academic Writing. She is also a regular contributor to Free Verse Revolution and Go Dog Go Café.
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