Introduction:

Our older of two sons, Tom, entered the hospital on May 1, 1998 with GBS (Guillain Barre Syndrome) and at that time we had not even heard of the condition and how serious it can be. On May 2nd Carolyn began a general Email of reports to keep friends and family informed about Tom's life-threatening situation, and to ask for continued prayer. Her Emails were daily for several weeks running, and on May 27, 1998 I supplied the following cumulative perspective to be sent out to the mailing list.

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 drivers 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.

2 Corinthians 4 17 For our light affliction, which is but for a moment, worketh for us a far more exceeding [and] eternal weight of glory; 18 While we look not at the things which are seen, but at the things which are not seen: for the things which are seen [are] temporal; but the things which are not seen [are] eternal.

Tom had been fighting a virus infection for several weeks, exhibiting a nagging cough whenever he was at our home. Tom had moved to an apartment, and was in the process of trying out a new vocation when the virus condition became severe. We knew he planned to seek some medical attention on April 29th. On Friday evening, May 1st, Carolyn picked me up from my office after work, and we arrived home to find a message on our phone recorder indicating that Tom was being admitted to the hospital. We telephoned the hospital to assess the situation, then ate some supper before going to the hospital to visit Tom.

When we arrived at the room, we met Dr. Dennis Sullivan, the attending neurologist, and had some discussion with him in Tom's room. He told us that Tom had a very serious condition known as Guillain Barre 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. Both of these things he had already told Tom. We visited with Tom for a little while, then saw Dr. Sullivan in the hallway again before we left. 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, believing there was no life threatening situation, only temporary extensive paralysis. I was unable to detect in the doctor's, controlled though caring voice, what Carolyn had read on his face and in his eyes. Over the next few days Carolyn read aloud much information about GBS which we obtained from internet and E-mail sources, including the fact that some persons do not survive the condition. When we visited Tom in his hospital room, his voice was hoarse and soft, and I was getting little direct input from him that could convey to me his condition. I would try to touch his hand at least once per visit, and told him that I loved him each time before we left. We were told that his room in step-down ICU was equipped with facilities for assisted breathing, if the condition made that necessary. On one of our visits I had Carolyn read Psalm 103 aloud after I told Tom I especially liked this one among ones I had just recently read on my NIV Bible on tape. Another night we prayed with Tom, and I commented to him that with so much prayer going up in his behalf, he should also pray to God. He responded that he had been praying.

Monday evening May 4, 1998, Tom seemed improved after a plasmapharesis treatment, and said he thought he would be in the hospital another week to ten days, and back to work a week or two later. Tuesday I went to the office for about five hours, planning to visit the hospital only once in the evening since Tom seemed to be improving. Before we left for the hospital that evening, our daughter Marci called to let us know that Tom had been moved to regular ICU as a precautionary step. Later that evening as we were visiting Tom, he had continued trouble in clearing his throat after taking some crushed pills in applesauce. There were five visitors in the room, and I became increasingly distressed listening to him struggling, 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. Our son Shaun, somewhat shaken by Tom's ordeal, left the hospital with friends, while Carolyn and I went to a waiting room until we could hear about a resolution to this unsettling problem.

The nursing staff kept in touch with us over the next hour plus, 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. There was no communication from Tom, so Carolyn related Tom's appearance with a badly bruised lower lip, but seeming otherwise comfortable and out of distress. We left the hospital around 12:30 A.M., then 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. The nurse assured me that we did not need to come to the hospital, but we were both unable to go back to sleep.

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, but I took time off from work through the following Monday, May 11th. 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 move 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 audibily. Sometimes the lip reader was a visitor, and sometimes a nurse. I made comments occasionally so Tom would know that I was still involved, though most of the time I was on my favorite chair near the door. 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.

1 Corinthians 1:18 For the preaching of the cross is to them that perish foolishness; but unto us which are saved it is the power of God.

Romans 1:16 For I am not ashamed of the gospel of Christ: for it is the power of God unto salvation to every one that believeth; to the Jew first, and also to the Greek.

A major aspect of how I consider my blindness is related to concepts which I have read from Scripture relating to the physical world, and the eternal life which is a gift from God. Jesus healed a man from an infirmity of 38 years which apparently left him paralyzed and unable to rise from his bed. After 38 years in such a dependent condition, was Jesus suggesting to him that a worse physical thing might happen to him? More likely, it was that as long as he kept his sin, he could not be saved from the destruction of his soul, and that is indeed a much worse thing to happen than any physical impairment.

John 5:14 Afterward Jesus findeth him in the temple, and said unto him, Behold, thou art made whole: sin no more, lest a worse thing come unto thee.

All the power and possessions of the world cannot compare with eternal life, and since God is the creator of all things, we have nothing to offer to Him to purchase eternal life.

Matthew 16:26 For what is a man profited, if he shall gain the whole world, and lose his own soul? or what shall a man give in exchange for his soul?

So I personally came to realize that I had nothing to offer to God, and that by trusting the one who is truly all powerful, I had nothing to fear more than God. But a healthy fear keeps us from coming into harm's way in the physical sense, and protects us from the second death after this brief life is over.

Luke 12:4 And I say unto you my friends, Be not afraid of them that kill the body, and after that have no more that they can do. 5 But I will forewarn you whom ye shall fear: Fear him, which after he hath killed hath power to cast into hell; yea, I say unto you, Fear him.

No matter what our physical condition as we go through the experiences of our life, we can have the comfort of God if we will receive His free gift of salvation. Several nights ago I left Tom with a fairly accurate quote of the next verse, and I have herein added the verse which follows it.

Philippians 4:19 But my God shall supply all your need according to his riches in glory by Christ Jesus. 20 Now unto God and our Father [be] glory for ever and ever. Amen.

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.

Published 4 July 2005