In March 1976, I was furloughed from my seasonal IRS job in Memphis.
I had been living in a duplex with a roommate and had just made a down payment on a used Monte Carlo car. I thought my future was looking great. I was making good money as a tax examiner and then the furlough came. The same night I got that, I traveled to Arkansas that night, and an earthquake occurred while standing at a roadside stand. My whole world was about to be all shook up!
The next morning I awoke with a strange coldness in my feet and my shoulders. My toes were pale and tingly, like someone had tied rubber bands around them. Also I could not lift my arms above my shoulders, as if I were lifting bricks.
The day wove itself into a brand new nightmare, like nothing I had ever seen or imagined. By the end of the day, my knees and thighs were very weak, where I could not walk without falling down. It was not safe to stay home alone, so I went to stay with a friend of my mother’s, as she was out of town.
I felt disconnected from my entire body. Previous to that morning, I had been in very good health. I was 20 years old, and I had strong legs, arms, and a healthy heart from riding my bicycle across town.
The next evening, when I tried to get out of bed to walk to the bathroom, I fell on the floor and could not get up. The lady with whom I was staying was unable to lift or help me. We had to call my brother to come and lift me off the floor. I was a scared little girl by then. I had no insurance and no income either, due to the furlough from my IRS job.
On the third day, my mother had borrowed a wheelchair for me, because I could no longer walk or stand. My brother came along and lifted me out of the car to go in the neurologist’s office. As the doctor examined me, he had a look of shock on his face. He left the room hurriedly without a word and returned shortly to tell us the diagnosis. The cause of the “paralysis” he said was called Guillain Barre Syndrome (GBS). We waited, thinking he had left out something, a simple solution or treatment, which we hoped would clear it up in a few days.
Two days later, I was in intensive care, on the way to being completely paralyzed, from my nose down. My mind was alert; it was my body that would not move. I quickly grew weary of endless days with 24 hour lights in ICU, and the lack of visitors allowed. I began to get restless and fretted over what would happen. A nurse gave me a drink of water one day and I got choked. Then I was unable to regain my breath. As I struggled to gasp for air, I thought I was as close to death as I had ever known. If there had not been a mechanical respirator to breathe for me, I perhaps would have died then.
Soon, I was put on a long term respirator, which whooshed and hissed as it pumped my every breath. At first, it was hard to allow it to breathe for me, as I still had small control of lung muscles. The machine would beep, beep repeatedly as my lungs fought with it, trying to find the correct rhythm of breathing with a machine. It was very frightening to wonder if the machine would keep going, or what if it stopped? I thought it meant I was going to die, if I had to depend on a respirator. No one would tell me anything, about when I might get better or be able to leave the hospital.
All timelines were simply unknown for this illness. There were and still are very few documented Guillain Barre Syndrome cases of this severity. There were no known treatments or cures, except to provide mechanical life support to wait and see if the body recovered on its own.
Being on the respirator, with a tube in my throat, I was unable to speak. My nurses worked out methods of clicking with my tongue, blinking my eyelids and let them know my needs or for me to answer their questions.
I was fully aware of all my surroundings most days. The doctors suggested that I be allowed a battery powered TV and radio, which were very rare in 1976. However, a TV was found and positioned at the foot of my bed. It was time for March Madness and Memphis State University’s basketball team was in final playoffs, with a good chance to win. The medical staff came by to stand around my bed when the final game was on TV and they cheered the team from ICU! It was the highlight of my ICU stay, and it kept my spirits up to know we had a winning team that year.
My 20th birthday was also spent in ICU. My sister-in-law wanted to light a candle on a birthday muffin. The match was down on the matchbook, ready to strike, with all the oxygen around us in ICU, when an observant nurse yelled “STOP!” We celebrated anyway without the candles…bigger reason to smile that day!
The doctors and nurses told me I was extremely close to death on two occasions. I was on heavy pain killers, even though there was no muscle movement, there was extreme nerve and muscle pain without explanation. There was no treatment to heal my damaged neurological system. I had several cases of pneumonia, despite regular chest poundings from respiratory therapists. There were no great miracle drugs or treatments for most symptoms caused by the paralysis.
The next incident that happened was I clearly saw an angel of death, a figure with no face, wearing a monk-style brown-hooded robe, hovering over my bed. It scared me so, that I feel like my spirit leapt from my body! Suddenly I found myself floating above my bed, looking down at my body, seeing all the tubes and my lifeless body.
Then I remember being in a dark room, with a light shining from above, and I was only able to see the knees, legs, and feet of Jesus in His white robe. (I always remember the woman from the Bible who cleaned Jesus’ feet with her hair and her tears. That was me!) I felt such greatness of unconditional love, which washed over me like a huge wave. I felt peace, too, like nothing on this earth. I have never felt that much love or peace within my spirit, before the experience, or since then.
Jesus gave me a choice, stay with Him, or return to my motion-less body, and fulfill my destiny for God. I felt I had not done a great deal for Him up to that point! I wanted to please Jesus and God more than anything!
As a preemie, in the hospital for my first ten days of life, my first taste of God was spent with Nuns and Franciscan Monks’ caring for me. They gave me protection from birth. I feel as I have had many angels over the years to comfort and encourage me!
I came back to my body, it was June 1976. The ICU nurses said I almost died a couple of times…that was all that they could provide in terms of what happened to me there. Then my minister at the time, and a faith healer from the D.o.C. Church came to pray over me. They would hold their hands over me, and I would feel all tingly and warm, after not feeling any little thing, for three months in my torso. I began to have movement a few weeks later and went on to a rehab facility.
After three months, I began to have movement in my legs and was sent to Rehabilitation, leaving ICU behind. One of the most excruciating parts of Rehab was when doctors and nurses did not believe I still had extreme pain, when other patients had no feeling, such as stroke patients. I was in a wheelchair, learning how to maneuver, for most of the three months of rehabilitation. Any movement of the body had to be learned all over again, and every part of my body was hyper-sensitive to any touch.
Eventually I learned how to talk again (off the respirator), then write again with my right hand, then stand up, and then to walk again with toes that no longer worked and ankle muscles that gave way when I tried to turn.
Even though they looked normal, my ankles, feet, and toes hurt a lot and had permanently weakened muscles with many consequences. Other portions of the lower half of my body were affected, additional muscle control and nerve conduction loss occurred in small quantities, enough to last the remainder of my life, although I was very thankful to be able to get out of the wheelchair to walk again after rehabilitation therapy.
Today, after I explain my partial disability to people, they look at me in disbelief, as if I am telling fibs about my damaged body and my need for flexibility at work and at social events. I look normal when I walk, because I learned to walk slower and make allowances to try to look normal. This is where we all struggle with the emotional and social isolation that often comes with physical loss, whether young or old.