In a couple of previous posts (February 2018), I described the time I had measles encephalitis when I was six going on seven. One of those posts includes a poem about the experience, “Hope was not a Loss”. In the other post “Measles Encephalitis”, I described the event and showed how this illness and the recovery process led me to the healing arts. I also examined how critical a role our subconscious plays in our healing. Perhaps we have a more powerful role to play in our on recovery from illness than we have been taught to believe.
In this post, I would like to go into another aspect of the illness I endured and my recovery, that of the abandonment I felt throughout the illness and my recovery. Maybe this account will guide people who are helping other people suffering from a debilitating illness.
My experience began in the summer of 1958 before my 7th birthday. Measles had hit the household, so Mom had her hands full. She sent me up to her room to get something, and my legs gave out from under me. I had to drag myself to the stairs and manage to get down the stairs to Mom, who didn’t believe me when I said I couldn’t walk. However, soon I also lost the ability to speak, stretch out my arms, eat solid food, and take care of my needs.
At that time, because I was unable function, play, and interact, the circumstances put me in a dark place of abandonment. I felt cut off. Life revolved around me. I felt so lonely and discouraged.
Because it was difficult to carry me up and down the stairs, I was left alone a great deal in the living room. Although Mom was close by, I only had myself and my thoughts. What was wrong? Was I going to die? Would I ever walk again? Why don’t people understand me?
I felt helpless, so fears built up like shadows to greet my vulnerabilities. It left me inconsolable.
I felt abandoned. However, at that time, I didn’t know the word, only the feelings of being cut off, separated, and isolated. My siblings were too young to understand. My parents were caught up in caring for the others and helping my dying grandfather. I had always been an easy child, never asking for anything. I would rock myself to sleep as a baby. People were used to my silence. In this case, silence was my only recourse at that time because it was hard to ask for anything when all I could do was grunt and mutter nonsense. These limitations caused me to feel impatient and angry. In my mind, I understood every word I intended, but no one could make out what I was saying. The inability to communicate caused me to shut down and fall into depression.
I blocked out a lot of the trauma. It was too much to process at that time. And my feelings of fear and abandonment partly stemmed from the fact that no one could help me process that time in my life. I don’t recall anyone saying, “How do you feel? Don’t be scared. We are here for you. We are in this together. You have this! This is temporary. We will get to the bottom of this. This isn’t your fault.”
I watched my siblings and friends outside as they played in the front yard. Even if they had come inside to include me, they didn’t know how to do that. They possibly didn’t know how to say, “We are sorry you are sick. We miss you!” No one taught them how to console me. Life has a way to take people’s attention from the sick.
However, because my brain was swollen, maybe they all did say comforting things, but I just didn’t process the words. My young mind couldn’t comprehend the physical suffering I had to endure. I had no way to analyze or process it. It seems I just surrendered to my malaise.
Mom fed me and tended to my physical needs, but I don’t recall being hugged or held. Perhaps the measles kept people from getting close. However, Mom built me a fort with blankets to make a steamy place to help me breathe in the hot sticky air and release phlegm from my chest. Maybe that ultimately saved my life. I have never read of such a treatment for measles encephalitis, so perhaps I also had a bad cold on top of everything else. Nonetheless, I feel deep down that her actions may have made my case of encephalitis milder, less insidious.
My dad was a busy minister who was also caring for his dad, who was dying. Dad had to travel from Montana to Michigan to help grandpa, move him back to Montana, and later return to Michigan to close up the family home there. He was not around much, and the circumstances left me feeling abandoned by my protector. The picture of all their lives and problems was too big for me to understand at that age and at that time. Life for my parents at that time was at a critical point.
When Mom accompanied him on these trips, we were left with a sitter named Mrs. Buck, an elderly woman who had a gun. The fact anyone would need a gun scared me rather than comforting me. I had no idea how I would escape an intruder in my vulnerable condition, and the front door was right there, a place of entry but no escape.
I wish I had the exact timeline for how I remained on the couch in the living room, but one night Mom and Dad raced into the house and swept me up. I recall the scared faces of my siblings and Mrs. Buck. So that I wouldn’t be scared, my parents presented me with a cute little red plastic purse, which I played with in the car. It felt good to be seated between them, and the attention was welcomed. I was a princess, and there was no sibling rivalry for their attention! I don’t recall much more in that one the hour drive to the hospital in Miles City, where my ailing grandfather was. I thought I was going there just to see him, but actually I was going into and out off a coma and was very ill.
Even though I had fallen asleep or passed into the coma on the way to the hospital, I will never forget standing next to my grandfather’s bed in the hospital once we arrived to Miles City. Maybe I was carried in, but I remember standing at one point. People were gathered around. I recall moving from the foot of the bed to be next to him. I wanted to stay with him, but the others said I had to leave. Since he was my most beloved grandfather, I wanted to be with him! Although I begged, again, I was rejected.
Looking back, I see this was a near- death experience. My grandfather was dying, and the year before, his wife had died at our home around the same time of year. If I had gone into a coma on the way to the hospital, there was no way I would have been taken to his room. I would have been quickly admitted and treated. Also, because I was paralyzed, I was unable to stand on my own much less walk around to the side of the bed. Therefore, I believe another healer was right in telling me there was probably a bargain cast to spare my life because Dad had lost his mother and now his father was passing. I was actually meeting with my grandfather and his spiritual counsel while in a coma (and my grandfather was also likely in a coma), and I was told I had to return to my hospital room despite my pleas to remain with my grandfather. Along with many of those who experience near deaths but are sent back to their bodies, I felt abandoned by God, kicked out of Heaven, cast out of my ‘home’.
My next memory was waking from the coma. I felt each needle that had been placed in my legs. I didn’t know why they were placed there, and they hurt! People were standing around me, and the doctor told me to say, “The bear went over the mountain.” When I successfully repeated the sentence, he said I was fine despite the fact I still could not walk. I was told I had been in the coma for a month, but perhaps I was just sick for a month.
It felt like an eternity in the hospital. Mom was there with me daily, but at night, I felt very much alone and scared. People were not allowed to stay the night with their loved ones in those days. My room was in a noisy wing, and strangers often came into my room just to look at the cute little girl, like I was on display. One day an impatient nurse left me on the toilet for a long time. I didn’t feel safe there. (Other staff were very loving.)
I believed the medical community abandoned me because I was told I would never walk again, nor was I provided any physical therapy. I felt left without support.
Returning home in a wheelchair, I was warmly welcomed with many toys and other gifts I had always wanted, like a tea set. People really made a fuss! Despite my celebrity status, I still felt abandoned because the attention was not meant for my old self; it was meant for this poor child with a disability. No one understood my grief for the loss of my old life, my old self. Again, I felt abandoned and dismissed. I noticed that people consoled my parents for their struggle throughout my illness along with other challenges, but not me. Although I held celebrity status for recovering from the coma, I became invisible. People towered over me, and life seemed to go on over my head. In those days, children were to be seen and not heard. I definitely realized that no one would be able to help me process the death of my old self.
Then everyone left again, all the celebrants and my parents. My parents had to return to Michigan. I think grandfather was still in the hospital, but he died in mid or late September. I was alone again by the window. School had started, so I watched my friends walk to our school, which was down the street.
I remember sitting in the wheelchair at the window weighing my options. If I stayed in the chair, I would be a princess and given many toys. I wouldn’t have to do the dishes or sweep the floor. On the other hand, I would continue to feel isolated and lonely, abandoned by many who were unable to understand my situation. I would require help meeting my needs. I also feared the bullies at school. I noticed how mean and dismissive some kids were to classmates with special needs.
So far, it seems I am expressing a lot of self-pity, having felt abandoned by so many, but as it turns out, I didn’t abandon myself. I resolved to start walking again. Possibly encephalitis resolves itself. Maybe I had a mild case. I have no idea. All I know is that I was told I would never walk again, but I was about to prove everyone wrong rather than accept living in the wheelchair.
It took several attempts to pull myself off the chair so that I could grab the furniture and use it as my crutches. I recall dragging my body from one piece of furniture to another and pulling myself up as best I could. Really I was just dragging one leg after another and one foot after another over and over around the room while I had one hand on a chair and then the couch and so on. I have no idea how long it took, but when my parents returned, I was able to run up to them, a happy little girl proclaiming her victory!
It came down to a choice for me. In my case, I was determined to walk and not to choose to follow the doctors’ prognosis, which in essence I almost accepted as a directive: “Do not ever walk again.” Sometimes a prognosis can seem like a curse.
As I look back, I realize that forgiveness is crucial. People did their best given their limited understanding and fears, and I only knew so much as a young child. I had no idea how to allay my fears until I hit the wall, realizing I had a choice to make. No one could fix this for me; I had to do it myself. I had to try at least. It was okay for me to feel angry and scared, it was okay not to follow doctor’s ‘orders’, and it was okay to be proud of my triumph. My fears had moved through me to bring me to a state of wholeness and good health.
Another insight I had is my abandonment of others throughout this experience. As odd as it sounds, I was changed and not the little girl my parents, siblings, and friends knew or could relate to. In a sense, my old self had disappeared, and my new self was a stranger. Illness can change many feelings. We all had grief and fear; we were all abandoned in one way or another. Moreover, the trauma and near-death encounter opened my third eye, and I continued to heal, evolve, and change in ways that concerned my loved ones.
And that account is another post when I am ready.
**My prayers go out to those whose illnesses are grave and difficult to resolve. My case is just one case, and I don’t intend to overgeneralize or appear to judge the healing journeys of others battling disabilities. My hope is that this post will provide some hope and help hearts open.**
©Barbara Harris Leonhard @extraordinarysunshineweaver.blog