Although I feel that my life has been affected by many events, even small ones, one specific event had a major effect on the direction my life took at the time. This event occurred when I came down with measles encephalitis at the age of six. I’ll never forget that time in my life and the things I learned about myself and my ability to heal my own tiny body despite what the doctors believed. Self-healing became my choice and my mission.
The onset of the illness happened suddenly. I turned from an active six-year-old to a helpless baby overnight. It was the summer of 1958. We were living in Lewistown, Montana, where my dad was a Presbyterian minister. Mom was at home with four children, one a newborn. That summer, measles was going around. These were the days before the vaccine, so several kids fell ill. One day that summer, Mom asked me to run upstairs and fetch something off her dresser. I pranced up the stairs, and once I arrived in the master bedroom, my legs gave out from under me. I couldn’t stand or walk no matter how hard I tried. I managed to drag myself to the stairs and descend to my bottom. Mom thought I was teasing, but then it became clear. I couldn’t walk.
The next thing I recall is being carried around up and down the stairs for bed, baths, or the bathroom. I can’t remember the complete timeline, but I soon lost my ability to reach my arms out to the full extent. I couldn’t feed myself or swallow well, so I was fed baby food. I lost my ability to speak. It must have been hard to keep carrying me, so I was left on the living room couch. The living room became my bedroom, my dining room, and my playroom, except I couldn’t play with anyone. All I could do was sleep or daydream while the family went on with their lives around me. There was no television, either. It felt like an eternity laying there and trying to ask for things, but my words were just slurred utterances, like baby babble. Because no one could understand me, I felt abandoned on the couch and at everyone’s mercy.
My siblings were young (I was the middle child), so I’m not sure if they understood what was happening. They were sick with measles too but lucky enough to be able to walk, talk, and eat. Mom was a doctor’s daughter, 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. At the time, I just complied because I had no strength to protest. I was helpless and had to spit up phlegm into a bucket inside a makeshift tent of blankets, a 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 the end of my days.
Finally, after a few days, my parents came rushing home and took me to the hospital in Miles City, where my paternal grandfather was dying. My dad had been busy, I think, picking his dad up in Michigan and driving him to a hospital closer to us. That is why he wasn’t around when I fell ill. In any case, when I couldn’t walk and was losing more and more motor and speech functions, they had to get me to a hospital. They received the diagnosis of measles encephalitis. The measles virus had infected my brain, causing my problems. As a gift so that I wouldn’t be scared, they presented me with a cute little plastic red purse.
That night, once we arrived at the hospital in Miles City, I got to see my grandpa. These were precious moments since he was so important to me. After visiting with my grandfather, the next thing I remember is waking up from a coma (I was told it lasted 30 days) 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 OK!” he said.
But I wasn’t one hundred percent ok. I still couldn’t walk. My legs felt like lead extensions. Mom stayed with me as much as she could while I was in the hospital, but Dad, an only child, was still tending to his father. I was able to ask for things and eat, thankfully. Still, I felt helpless and vulnerable. Strangers would come into my room uninvited and discuss how cute I looked. I felt scared of being left alone in a room for strangers to find me and stare at me. The hospital was also very noisy at night and felt cold. The nurses were nice, except for one, who was having a bad day and plopped me on the toilet angrily. She left me there a long time. Mom was furious when she found out.
Finally, I was able to return home but in a wheelchair. The doctors said I would never walk again, and there was nothing like physical therapy back then. I felt mixed emotions. Being in a 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 wanted for a while. Though I loved the toys, these huge, tall people loomed over me as they fussed over my sweet helpless 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 been lavished with attention at church. Another benefit I 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 again became my prison, where I sat alone since all my siblings and friends had legs and could play outside. Again, I watched life go on around me outside the picture window in the living room. Also, I didn’t feel safe. Mom and Dad had to drive to Michigan, close to Dad’s family home. While they were gone there was news of a child molester trying to kidnap kids. As a result, Mrs. Bunker, our babysitter, kept a gun. I thought about how I couldn’t run from anything because I was anchored to that wheelchair. The entire experience left me feeling anxious. 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 anymore. School was in session, and other kids had lives.
Life was boring and lonely. I knew that I just had to regain my independence regardless of the doctor’s prognosis. 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 the couch, where I would strain to pull myself up. Although it was difficult at first, I 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 I was walking more smoothly. When Mom and Dad arrived home from a depressing trip, their little girl was able to run up to them!
The greatest realization was that I could change my destiny. I had every reason to remain in the wheelchair because of the attention, sympathy, and love that not only I received but my parents, who had that poor little “crippled” girl. The attention could not offset the loneliness, the feelings of being diminutive and helpless, and the boredom. These feelings precipitated my decision to try to walk again. I thought a lot about my choice. Let’s face it, it is easy to think fatalistically and accept an outcome without debating it. The doctor told me I was destined to use that chair for the rest of my life. However, in all the time I had to think, it seemed unfair for me to have to live that way. People tried to convince me with the toys, dolls, and tea sets, that this condition had amenities. I was so delighted to be the princess! And yet, my heart was crying out to be whole. That is why I made a different choice and threw myself off that chair. I have often contemplated that major life event.
According to Encephalitis International, 1 in 3 in 1,000 children with measles will develop encephalitis, only 85 to 90 percent of those children will survive, and 25 percent will suffer permanent neurological damage. I learned how bad my life could have been several years later when we were living in Sault Ste. Marie, Michigan. Mom and I helped give physical therapy to a young boy who didn’t recover from measles encephalitis as well as I did. He was left with permanent neurological damage and paralysis and loss of speech. We would move his arms and legs back and forth, a method his mom called “pattern practice.” He would never regain full function due to the extensive neurological damage.
While I was volunteering to help this boy, I suffered survivor’s guilt, not understanding why I was able to recover, and he wasn’t. Maybe I had a milder case. I was spared because Dad was facing so much loss. His mother had died exactly one year earlier, and he was losing his father. I will never know the answers. However, I do know that I saw my situation involved a choice. I could have chosen to remain in the wheelchair.
No one expected that to change, not the doctor, not my parents, not society. My thinking, my belief, was that I could walk, and so I set out to do that. Thank you for listening to my story.
Barbara is also the author of a new book, Three-Penny Memories: A Poetic Memoir.
Three-Penny Memories tells a daughter’s story about her care for her mother, who is navigating Alzheimer’s. An uncle’s question, “Do you love your mother?” forces the daughter to consider if she is helping her mother out of love or out of obligation. The poems review the arc of their two lives sometimes in a dance and sometimes in flight. The poems speak of grief, abandonment, loss, and fear; of their “mother wounds”; of their connections and disconnections across the span of their lives together. Can a daughter question her love for her mother, who is suffering from Alzheimer’s? Can she learn to love the stranger her mother is becoming?
Available from Amazon