Master's Prayer Network

Observations and Reflections from the Blind Father of a GBS Patient

Those along the Email trail who have been following the story of the experiences of the family of Thomas L. Justice as he has been dealing with all the facets of GBS, have been hearing updates from Carolyn, his mother, who is herself affected by the post polio syndrome, and draws attention as she comes and goes on her two crutches. Now dad (Mike) will join the sharing of the story by direct comments. This will be a recap from just prior to the onset, up to the present, with just a brief backdrop for my blindness.

My blindness is the result of the progressive condition of retinitis pigmentosa, and I have never been qualified for a driver’s license, even though I could read print until my mid twenties. I became legally blind in my late twenties, and I began to use a legal white cane after rehabilitation training in 1974. When Tom became our firstborn in 1978, I could see his features if I held him for a close view. My eyesight has continued to deteriorate, and at this time I can see more than light perception, but my level of eyesight is inconsistent and difficult to define. My LORD and Savior Jesus Christ has blessed me abundantly over the years, and I treasure my wife, our two sons, and our “adopted” daughter. Experiences during and after my rehabilitation brought me to the point of surrendering my life to Christ, and for this I will continually praise Him!

Tom had been fighting a virus infection for several weeks. On Friday evening, May 1st, Carolyn picked me up from my office after work, and we arrived home to find a message indicating that Tom was being admitted to the hospital. When we arrived at the room, Dr. Dennis Sullivan, the attending neurologist, told us that Tom had a very serious condition known as Guillain-Barré Syndrome, emphasizing that Tom had done nothing wrong to cause this, and that we needed to be prepared for the condition to get worse before it got better. Carolyn said she saw concern in the doctor’s face, and believed Tom was very seriously ill. This was something I had misread, judging only from his words and verbal expression. I was unable to detect in the doctor’s controlled though caring voice, what Carolyn had read on his face and in his eyes.

Monday evening May 4th, Tom seemed improved after a plasmapheresis treatment, and said he thought he would be in the hospital another week to ten days. Tuesday I went to the office for about five hours, planning to visit the hospital only once in the evening. Before we left for the hospital, our daughter Marci called to let us know that Tom had been moved to regular ICU as a precautionary step. Later that evening there were five visitors in the room, and I became increasingly distressed listening to Tom struggling to clear his throat, while hearing other conversation continuing in the room with no apparent concern for Tom. I finally got up from my chair and said that we needed to leave the room and let the nursing staff help him.

The nursing staff kept in touch with us over the next hour, and finally the pulmonologist Dr. Bashir came to explain the function and reasons for the ventilator being used for Tom. We then went to the room and observed Tom heavily sedated and quietly breathing with the aid of the ventilator. We received a phone call from the nurses’ station around 4:30 A.M. Tom’s right lung was beginning to collapse, and a surgeon was called to perform a pneumothoraxis procedure.

Carolyn and I had some quiet moments of independent thoughts and prayers before we began to discuss possibilities. I had been thinking of the prayer of Jesus in the garden prior to the crucifixion. My prayer to God was for spiritual and physical healing of my son, but if not … that God’s will be done in our lives. As we talked, Carolyn said she had prayed in a similar manner. We both knew that the worsening trend could continue to the point of losing Tom, but we also knew that God’s grace is truly sufficient for all our needs. Just as our LORD did not want the shame and disgrace of the cross, we did not want the sorrow of the loss of our son. But we did want to look beyond the immediate future, and trust the plans of God which are far greater and more glorious than our understanding.

Before Shaun left for school Wednesday May 6th, I called the hospital and learned that the left lung was also to have a pneumothoraxis, but that Tom’s condition was still listed as serious, not critical. Shaun went to school after some explanation and assurance. With regular visits to the hospital, usually twice per day, we and the ICU nursing staff began to become better acquainted. My usual pattern was to sit on a chair just inside the door of Tom’s room, and listen to the conversations to glean as much as I could about Tom’s condition. The equipment in the room caused a background level of sound, and the tiled concrete floor made little noise as people moved through the room, often keeping me unsure about who was in or out of the room.

With the ventilator in place through Tom’s vocal cords, he was unable to make any sound, or so I thought. One time when Carolyn was at the nurses’ station, I was in the room alone with Tom. I heard a “clucking” sort of sound and turned my head to try to determine the direction and source. When it started again, I realized it was made with the tongue in the mouth, and went to the bedside. I carefully moved my hand along the side rail past wires and tubes, up to the top of the mattress, then down to Tom’s head. When I had my hand on his head, I looked at his face and said “is that you making the sound?” He shook his head yes, and I smiled and said “That is very clever, but now we can’t do anything else!” However, we were both very satisfied with our special “son to father” exchange.

On each visit I would listen to the conversation from Tom as it was relayed by the lip reader since Tom could not speak audibly. Usually, before we would leave the room, I found my way cautiously to Tom’s bed, and would place my hand on his head so I could look directly at his face and make some parting comments. He now can reach for my hand in these recent days, and gives me a squeeze since I cannot read his lips or facial expression. He and I both still enjoy kidding with the staff, and I caught one of them off guard at the station as Carolyn and I left one evening. The nurse commented that she is not a good lip reader, and I quipped that I couldn’t read lips either!

For those of you reading this, who believe in prayer because of the one to whom we pray, we ask that your primary prayer for all of us in the Justice family be for the increase of Christ within us. Those who do not know Christ as personal Savior probably find some of our perspective hard to understand. But Scripture is the key, because we believe that we know the Living Word through reading the written Word, since the Word was made flesh and dwelt among us. God became a man to die in our place, and this seems foolish to many people.

Author’s Note: Carolyn’s last Email was June 13, 1998, when Tom had progressed to the rehab unit in the hospital for the after effects of the GBS. Tom was released from the hospital some days before his 20th birthday which was July 12, 1998.