Wednesday, May 12, 2010

The Human Need to Communicate

It was dark when the ambulance transporting me to the Mission Viejo Trauma Center came to a stop outside the emergency area.  The doors to the back of the ambulance swung open and I was carefully lifted out on the gurney.  As someone pushed, others walked along beside carrying the apparatus that was pumping air into my lungs. The breath tube which was hanging from the side of my mouth was dragging my lip downward and had become extremely uncomfortable and painful.  But more than that, it kept me from speaking.  I felt helpless and vulnerable laying flat on my back, unable to move or speak, only seeing ceilings and faces.   The paramedics sped me through various corridors on my way to the intensive care unit.

  ICU seemed cold and sterile with all the hospital beds lined in a row, being only divided by drawn curtains.  My ears were sensitive to all the strange noises made by various machines that seemed to echo in the dimly lit room.  Of course, the machine next to my bed, keeping rhythm with my breathing, seemed to be the loudest.  I wondered how long I would have to be attached to it?  Perhaps tomorrow or the next day this tube would be removed and I would be able to talk. Then the thought came flooding into my mind: “Would I ever breathe on my own again?  If not, surely I would die.  How does one live and not be able to breathe?    How does one live and not speak?  Would I want to live if I couldn’t talk or teach?   Oh, Lord, please let me wake up from this awful dream!”

Later the next afternoon I learned the awful truth.  I was going to surgery to have a tracheotomy so I could breathe from a machine for the rest of my life.  A little different from having your appendix or gall bladder removed, I thought. When I woke up from the procedure, it was with great relief that I realized the annoying tubes from my mouth were gone Instead, I was wearing a special neckband with velcro straps and rubber bands which held in place all the tubes and hoses that connected me to the mechanical ventilator by my bed.  Little did I comprehend at that point that all of this apparatus would become a permanent part of my existence. In and out. In and out it went.   It had a steady rhythm as I received my 12 breaths per minute. The term “pull the plug” took on new meaning for me.

 Although the implantation of the trach tube made breathing much more comfortable, the system had it drawbacks. Neither on inhalation or exhalation did it allow the airflow to pass through the vocal cords - thus preventing normal vocalization.  With the tubes from my mouth gone, I began mouthing simple words.  Trying to comfort Jo Anne, I mouthed, “I love you!” and, “I’m okay.” As needs approached, I tried to mouth other words as well and was grateful family and friends could at least read simple statements.

With the new breakthrough in communication, the family came up with some different eye signals that would allow me to answer with more options than yes or no.  Up to this point, I had just been blinking once for yes and twice for no.  It was decided that if I rolled my eyes upward to the right, that meant yes.  If I rolled them upward to the left, that meant no.  Down right meant, I don’t know, and down left meant, maybe.  I don’t know how we ever kept that straight.  I’m confused just writing about it.  Anyway, it seemed to work pretty good for those who knew about it. 

One evening our Church leader who had been helping Jo Anne with all of her needs, came to visit me and had not been told of the change of the eye code from blinking to rolling.  As he approached the hospital bed he began asking me questions such as – “You must be excited to see Mike and Jo Lene home from college?”  I replied by rolling my eyes upward to the right for yes.  He expected me to blink them once for yes and interpreted my rolling my eyes as feeling very discouraged.  He continued to ask me positive questions to which I responded yes and he took it as one usually might when someone rolls their eyes at them.  He was very relieved when he learned about the new eye code and realized I wasn’t as discouraged as he thought.

Ron Wilson, a commercial artist and good friend, finally devised a series of charts that could be shown me and through the use of my eyes I could communicate to others what my needs were.  It was so clever and useful that I could even indicate which scriptures I wanted read to me. Ron also went out and bought a little combination radio and tape player.  This way I could listen to live ball games or beautiful music.

Because of Ron’s chart, I was able to let Jo Anne know that I did not want to be left alone during the night. There were always people during the day, but at night I would become very anxious.  So a group of men from our Church worked out a schedule in which there would always be someone with me every night.  These wonderful men would sit by my side through the long hours of the night and would read to me when I was unable to sleep.  One man, sensing my uneasiness in the early morning hours, had a beautiful voice and would softly sing familiar hymns that I loved so much.

  Even though I was able to communicate a few of my feelings and needs to my family, as the days turned into a few weeks, not being given any hope that I would ever speak again, I wondered if I would be able to deal with this on a long term basis.  How could I possibly live under these circumstances?   Although I could not vocally pray as I usually did, my silent prayers were heard. Struggling with my new circumstances in those long days and nights in the ICU, the same impression came into my mind  time and time again as it on previous occasions in my life – “Be still and know that I am God.”

Although I did not know if I would ever walk or breathe again, and lead a normal life, I knew that somehow, ultimately, everything would be okay. Never the less, I experienced mixed emotions as I laid in my hospital bed, day after day, listening to the noise of the large ventilator next to my bed pumping the breath of life into my lungs,   I couldn’t believe I would have to live the rest of my life like this, yet I was grateful for it at the same time. Me and the vent were like Siamese twins—joined at the hip – or at the throat I should say.  I would never go anywhere without it for the rest of my life.

After being two weeks in the ICU Trauma Center, I was transferred to a rehabilitation hospital.  Upon my arrival, the doctor deflated a small balloon in my trachea allowing some air to go by the vocal cords. With a cuffed trach this small balloon type device is usually always inflated so no air can escape between the ventilator and the lungs making breathing easier for the patient.  Once deflated, with great difficulty I was able to speak to Jo Anne for the first time. In a very weak and hoarse voice, I told her I loved her and teasingly added to get me a bean burrito as I was tired of the feeding tube. Periodically, if I felt strong enough, the doctor would repeat this procedure allowing me to say a few words to whomever might be with me.

  As my health improved, about 6 weeks after my arrival, they traded out my cuffed trach for a cuffless trach which had no balloon device at all.  This allowed the air to pass by my vocal cords each time the vent delivered oxygen to my lungs.  So after 8 weeks of not being able to talk I was finally able to announce, “My name is Jack.  I broke my back.”  I even smiled, as did those around me, at my first attempt at speaking. As joyful as I was however, it wasn’t normal speech.  There would always be a long pause mid sentence. It made for bad joke telling as I always had to wait for the next breath to come before I could finish what I was saying. Teaching and public speaking seemed like it would be a thing of the past.

As I grew accustomed to speaking on a vent, the speech therapist introduced me to the Pass-Muir Speaking Valve. It was a miracle.  It had only been invented 5 years before I was injured by a young man with muscular dystrophy. He designed this small, round, one way valve (which is inserted into the breathing hose on the outside of the neck) so that the air on its way out of my lungs would be forced up through the vocal cords and through the mouth and nasal cavities. In a sense my head became a wind tunnel.  However, I could speak on the inhale and exhale.  “Jack is back,” I said with great hopes of at least speaking normally.  Although the speaking valve took some adjustment, it paved the way for a functional and productive life while living on a ventilator.

I know that one of the most frustrating and terrifying experience  a person can have is not being able to communicate, and because of it, to not get the help or reassurance needed to be comforted and at peace.  The Lord gives little babies the ability to cry—the only way they can communicate their needs. 

A universal life saving technique all patients on ventilators learn when unable to speak and needing help is to click their tongue in hopes some one will hear them and come to their rescue. One afternoon while I was working on the computer in my office, my hose came dislodged from my throat and landed on my chest and the machine mistook it as still working and the alarm did not go off.  I began clicking my tongue  with all my might. Jo Anne and the girls were cooking in the kitchen and did not hear me.  However, our little dog, Poco, who looked like the Taco Bell commercials, came running into my office.  He sensed my danger and ran into the kitchen barking till Jo Anne came and saw my predicament and reattached my ventilator hose in time for me to still be alive to tell the tale.

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