A Leaf in the Wind

Karen around five yearsLife is like a falling leaf floating in the wind one day and tossing around ravaged by a storm the next. Nothing stays the same and things can change in the blink of an eye. Our conscious choices produce results if destiny leaves us alone long enough; but, many times, fate loves to play Russian roulette with our lives just to see how we might respond. Since we are all extremely fragile, the mere action of living exposes us to vulnerabilities that can change our lives forever, no matter what we do.

I learned that the hard way when I was young and impressionable at the age of nine years old. There were two sisters in my family before Karen was born and I was the oldest. My sister, Theresa, was four years my junior and she received all the family attention until our youngest sister came along. Karen was born a blue baby on September 26, 1951, but she survived and thrived until that fateful summer of 1954.

She was the third of three daughters in the family – a beautiful child with blue eyes and platinum hair who was also quite smart. I proudly took her under my wing and taught her the A-B-C’s and the 1-2-3’s when she was two years old. She was good-natured, curious, perceptive and happy, doing her patty cakes and peek-a-boo’s for people with joy. At the time, she was the baby of the family and received much loving attention from everyone.

Early in the summer of 1954, my father, who worked for the U.S. Immigration and Naturalization Service in Chicago, had to attend a customs training seminar down in Brownsville, Texas for a few months. While he was gone, my mother decided to leave the confines of our house in Park Forest on the South Side after school was out and take us up to my father’s sister’s place in southern Minnesota.

My aunt and uncle ran a restaurant and bar in Brownsdale, which was maybe twenty miles from Austin, Minnesota, and they lived with my two cousins in the apartment above the bar on the second floor. We had been visiting them for a short period of time when Karen got ill. She had not been feeling well for a couple of days and, being lethargic and slightly feverish, my mother thought it was a mild cold, so gave her plenty of fluids and let her nap through the day in the hopes that she would fight off the germs and get better.

One afternoon, I was sitting in the sun on the balcony overlooking the main street in Brownsdale reading my cousin’s comic books voraciously because I had no comic books at home. My mother lay Karen down on a blanket beside me where my sister could rest and asked me to look after her. Karen lay sleeping while I sat next to her reading one comic book after another and thinking I might want to be a cartoonist when I grew up. I remember that fateful day in detail and still get chills when I recall what happened next.

Without any warning, my baby sister threw her head back and began to convulse, one wave after another. All and all, she must have convulsed a dozen times and her skin had turned blue because she was swallowing her tongue. Not knowing what was happening, it truly scared me to death and I screamed out for my mother who came running on to the balcony with my grandmother. Grandma Paulson had been a rural midwife in her life, so she knew what to do and, disappearing briefly, she came back with a spoon which she inserted in my sister’s mouth to hold her tongue down, so Karen wouldn’t swallow it.
Finally my sister stopped convulsing and her skin became pale pink again.

My mother wrapped her in the blanket and lifted her up into her arms to take her to the hospital in Austin. Grandma had to go to hold the baby while my mother drove the car, so Mom ordered me to stay behind to baby sit my younger sister, Theresa, who was taking a nap in one of the bedrooms. To this day, I don’t know if Theresa woke up and saw all of this activity or not. If she had seen anything, she would have been traumatized for life because she had barely turned five and would not have had a clue as to what was happening – only that her baby sister did not look right and her mother was terrified. She has never said anything.

Hearing the side door slam shut, I leaned over the balcony to watch as they descended the side stairs and hurried to the car parked behind the café. They drove away and I shivered with dread before deciding to take the comic books back inside. Sitting down on the sofa, I started reading a Superman comic book; but my heart was not in it anymore.

I was still shaking a half hour later because I had never seen someone go into convulsions and turn that blue before and I knew something terrible had happened to my baby sister. When they returned a couple of hours later, my mother told me that the emergency room doctor took her temperature which by that time was 106 F, diagnosed her with the flu, and gave her a shot of penicillin before sending her home. We didn’t know at the time that their diagnosis had been wrong and the damage had been done.

The closer you are to a deteriorating situation, the less likely you are to see the reality of it and especially if it is a family member – in this case, a child. I saw changes in Karen’s behavior in the two years after her illness, but my parents didn’t seem to acknowledge the differences as results from her illness.

They seemed too quick to excuse the effects as phases of child development that she would ‘grow out of.’ I could see they were very frustrated that Karen would not follow their parental orders, so I tried in my grade school way to manipulate her into acting the way they wanted her to act for fear she would be punished if she didn’t. I became her protector, both inside the house and out.

Because I was around her quite a bit, I noticed that she slowly developed fears of odd things – the toilet and her beloved tricycle which she used to love. She also forgot her A-B-C’s and her 1-2-3’s. Her ability to communicate seemed to suffer and she fell into a frustrated silence.

I was the sister who accompanied her when she played on the lawn and watched over her in an attempt to protect her from the cruel comments on the part of naïve neighbor kids. She also started swaying back and forth when she was sitting down as well as flipping her hands like she had energy that didn’t know where to go. These habits attracted attention wherever we went and fueled the insensitive comments and stares.

I must admit that it got to the point where I was painfully aware of ‘The Look’ in other people’s eyes that indicated they thought Karen was retarded when we walked into a restaurant or wandered around a park. They would stare at her and then check out me and my younger sister, Theresa, as if looking for the same odd behavior. It was like they expected my sister, Theresa, and me –and later my younger sisters, Carole and Jill – to be brain damaged as well. I loved my baby sister, but these experiences mortified me.

Karen used to love her tricycle which my parents had given her for Christmas that year, but now she would scream in abject fear if I lifted her on to the seat, so she could ride it. Taking her to a public bathroom was a nightmare because she would start screaming in fear of the toilet when my mother encouraged her to sit down on the lid. I could see the emotional reaction on the faces of women using the bathroom as well. It was one of shock and scorn as if my mother was beating and abusing my sister behind that stall door.

My parents persisted in thinking her behavior was a matter of choice on her part and the spankings became habitual. I felt helpless to do anything about it because I assumed my parents knew more than I did. The situation came to a head when Mom and Dad registered her in kindergarten at the age of five. After a few weeks of attending school, the kindergarten teacher called my mother up and told her she thought Karen was mentally retarded and unable to function in class.

She said she did not think Karen could continue with school studies and referred my parents to the University of Chicago to have my sister tested for disabilities. After discussing and arguing about it, Mom and Dad did follow through by making an appointment for my sister to be evaluated at the University Research Center. I think the results may have taken a few weeks and they had to go back a second time to hear the conclusions from the medical researchers. That’s when the truth of the matter came out in the open and was validated.

If my memory serves me well, I remember Mom and Dad being depressed and argumentative for a few days after they found out the test results while they processed this new information and before taking me aside to explain the results of the tests. They said the x-rays had showed calcifications in various areas of my sister’s brain which had formed around certain nerve endings on one side of the brain only. According to the medical researchers, these calcifications prevented the nerve signals from getting to the appropriate areas of the brain for a correct behavioral response to stimuli.

When we moved to British Columbia, Canada, in 1961, my parents also had her tested At Vancouver General Hosital and it showed that the original calcifications had dissolved; but there were new ones that had formed on the opposite side of her brain. In essence, her mentally disabled condition was an ever-changing one and posed new problems with each opassing year.

The medical researchers at the University of Chicago also concluded that she had had encephalitis brought about by the bite of an infected Minnesota mosquito. It was the luck of the draw – the fickle finger of fate – that she was the one who got bit because all three of us were outside playing in the thick humid Minnesota summer air. My sister, Theresa, or I could have been bitten instead; but the mosquito seemed to prefer Karen and the rest is history.

The medical personnel also tested her mental acuity and said she had an IQ of around 82 at the age of five years. She could learn, but under certain conditions and only certain things. She could dress and feed herself as well as comb her hair and brush her teeth, but she would never be able to fend for herself out in the real world and would never be able to support herself or pay bills and function independently. She could also communicate simple things when she wanted to and, by this time, she was losing her fear of the toilet, so she could manage the toilet and taking a bath pretty well.

In the ensuing three or four years after Karen’s diagnosis at the University of Chicago, my parents fought between themselves constantly and played the blame game as to whose fault it had been that Karen got sick. Dad had been gone at the Texas seminar and he turned his angst at being absent into blaming my mother for not being responsible in knowing what to tell the doctors what to do. She would have had to have a doctorate degree to understand the symptoms and diagnose the problem correctly.

That guilt changed my mother for the rest of her life. From that point forward, she took it upon herself to learn as much about medical issues and medicines as she could because I figured she never, ever wanted to be blamed for harm to one of her children again. Sitting in the living room, I would shudder when I heard them argue in their bedroom and try to shift the responsibility back and forth because I knew, even at my young age, that what happened to my sister was an accident … or part of God’s cruel plan. It wasn’t anyone’s fault.

Life at home during those ensuing years turned into a living hell and I tried to protect my sister, Karen, as much as I could from the frustrations and anger of my parents who still expected certain behaviors from her and didn’t seem to want to accept it was now out of their control. Both of my parents were what I call ‘control dependents’ who believed there was nothing that happened on Earth that wasn’t the direct result of a person’s bad or good choices. As a result, they believed that someone was always to blame.

I had always been puzzled by that stance because they were both very religious and their dependency on human control seemed to cut God out of it entirely. The whole family became embroiled in one big oxymoron of grief and anger. At the age of twelve, I would literally watch my parents arguing and think to myself that they had both gone crazy, but I had not lost a child then.

I have since lost a daughter in an accident and am painfully aware that my parents lost a daughter that day on the balcony, but they didn’t really lose her – only the essence of what she was born to be. I can now understand the emotional agony and the angst over it all. and especially since Karen would need constant care the rest of her life. It had not been Karen’s fault nor had it been my mother’s fault … and there was a time that I thought it could have been my fault as babysitter on the balcony that day.

It was actually the fault of a malevolent Minnesota mosquito that happened to be carrying the encephalitis virus that had happened to bite my baby sister. The ramifications of that minute would change her life forever because it robbed her of her health, her mind, her talents, her personality, her happiness, and indeed her future. As they say these days, shit happens. The dice were rolled and my parents were as much victims of chance as Karen was.

My younger sisters, Carole and Jill, suffered in a different way because they were born long after the fact; but the whole experience affected our family to the core for the rest of our lives. I was so severely traumatized by the frightening experience of seeing my baby sister convulse and turn blue that I had to carry around anticonvulsant medication to use with my son when he was a baby just in case he would start convulsing. It had scared me that much. Thank god I had a compassionate doctor who understood well enough to write the prescription for me and thank god I never had to use the medicine.

We found out later that, if the hospital in Austin had taken a spinal tap, they would have seen the dead brain cells in the spinal fluid and would have known she had encephalitis. In retrospection, I am not sure if the medical field had any anecdotal treatments for encephalitis back then. The penicillin they gave her didn’t even phase it. I doubt sulfa would have either and, to my knowledge, that’s all they had back in 1954. The hospital was remiss in not drawing spinal fluid for testing, but they were not responsible for the collateral damage of the encephalitis.

As I said before, shit happens- right down to there being nothing to reverse the course of the disease at that time in history. It was pure chance that played roulette with Karen’s life back then. I still think that people who live their lives believing they have 100% control are just as nuts as my parents werebefore they finally had to realize they were not in control. It took them about four years to accept the randomness of what had happened without needing to place blame and our lives returned to a semblance of normal again. It was a new normal though.

I was just very concerned about my little baby sister who was really not my sister anymore. I wanted her to be safe from the cruel teasing and ignorance of others. She didn’t deserve it because she didn’t cause it. These things were very difficult realizations for a grade school girl to make and I have to admit I was pretty depressed all through my childhood and into my adulthood because I almost waited for the tragic shoe to drop by accident again – to anyone and anywhere.

I realized when young how very fragile life is and all of us are vulnerable when the dice is rolled. The leaves of life are carried by gentle summer breezes until the dark clouds of change bring strong winds that toss them around and down until they crash into the ground, leaving blackened, charred earth where green grasses once grew and blue violets bloomed. That is what happened to my beautiful baby sister, Karen, back in 1954 and life was never the same as before.