Will's journey: a rebirth: a study of the effects of chronic illness on the human spirit.
This is the story of the amazing journey of a captain in the US Army, from the battlefields of Viet Nam, through seventeen years of seizures of unknown origin, to voluntary participation in research toward possible treatment of serious brain disorders, culminating in his own surgery, to the beginning of a totally new chapter in his life. The author shares his life from being a totally disabled man to his college graduation this spring. He describes the past four years as "A Rebirth", and is now looking forward to his life as a registered nurse, caring for those with little hope, great suffering, fear and uncertainty in the face of surgery, treatments, rehabilitation and new challenges.
This paper was written by a senior nursing student as part of an independent study course which he designed. In addition to the credit he earned, the author also hopes to share his struggle from a place of total despair and utter helplessness to the ultimate victory, achieved at his recent college graduation, which earned him a BSN degree. History gives a human face to complex diagnoses, sophisticated tests and research and uncharted territory at the hands of a team of neurosurgeons. As the faculty advisor with whom he worked during this course, I encouraged him to submit his paper for publication, and helped him by serving as the editor of the paper.
Since the writing of Will's stow, he has obtained his Maine State Registered Nurse License and is working as night charge nurse on a 48 bed geriatric dementia unit. He also volunteers at a camp for families of children with life-threatening diseases. Will hopes to develop his skills and go on to a career in neurologic nursing, focusing on pediatrics.
The following autobiographical sketch covers 17 years, 1976-93, in the life of a 45 year-old retired Army captain. I lived with epilepsy for these 17 years of my adult life, that is until I met Dr. John Ebersole of the Veterans Administration Medical Center, (VAMC), West Haven, Connecticut.
In early December, 1971, while flying a helicopter on a combat support mission in the Republic of Viet Nam, I was struck on the right side of my head, and temporarily dazed, by a projectile. Upon my return to our base at Dong Ba Thin, I had a headache and sore jaw, but otherwise felt fine. A few days later, December 10, 1971, I was seen by the flight surgeon and treated for a sore right temporomandibular joint. Other than that, I experienced no short-term problems from the blow to the head. In time this was to change. Over the next five years, however, I continued to fly medical evacuation and general support missions, following my return stateside to Fort Hood, Texas.
On January 3, 1976, I was taking scuba diving lessons in the Florida Keys as part of my military training. While under 31 feet of water, I heard a thump inside my head and experienced a severe nose bleed. I was sent to the surface and fell asleep on the deck of the boat. Observers covered me with a blanket because I was "shivering." Upon our arrival at the dock, I had trouble negotiating the stairs to the pier. I was extremely weak and dizzy. Because of my otherwise excellent physical health, the dive team rationalized these to be symptoms caused by a combination of loss of blood and being seasick. A physical examination at the Fort Benning Hospital revealed no reason to believe otherwise.
On February 16, 1976, I experienced what was to be recognized as my first witnessed seizure. I had gone fishing at an early hour that morning and was extremely tired when I retired for a nap shortly after noon. Annette, my wife, heard my belt buckle rattling and entered the room to find me unconscious, pale and rigid. I was taken to the Fort Benning Hospital by ambulance. When I awoke, I was disoriented and confused. I remember the doctor asking me my birth date and to spell my name, but I could not remember either. I knew I was in trouble, but not why or how. The doctor told me that he suspected a "virus of some kind" as he could find no other reason for the episode.
In March, 1976, I was transferred to Fort Bragg, North Carolina. In May, I experienced another seizure while fishing with friends. When I awoke, I was told that I had been, "flopping around on the deck like a hooked fish." I had a terrible headache, and was extremely tired.
In November, 1976, after deer hunting, I experienced my third witnessed seizure. I went to bed early, and Annette heard me making unintelligible noises as if talking in my sleep. When I fell out of the bed she entered the room, turned on the light, and found me on my hands and knees, face distorted, blowing saliva and making guttural noises. She called Dr. Ray McGarr, my flight surgeon and neighbor, and he witnessed my postictal state.
Dr. McGarr temporarily suspended my flight status, and sent me to see the base neurologist, Dr. Roman Czerwinski, who told me that he suspected I had a seizure disorder. As a pilot, this would mean permanent grounding, so I refused to accept the diagnosis. My seizures all occurred during periods when I was tired and had consumed coffee or caffeine tablets to stay awake. Because of this, and the fact that several weeks of electroencephalograms (EEGs) and other neurologic tests were negative, a possible caffeine intolerance was suspected. I was elated! There was a chance that I could return to my flying duties if this was the case. I removed all caffeine from my diet and, under Dr. Czerwinski's supervision, discontinued my seizure medication. As a result I began to experience both generalized and partial type seizures. I had an "idiopathic seizure disorder." My neurological tests were always normal, so I was checked for possible psychological reasons for the disorder. The psychological tests also came back normal so the diagnosis remained unchanged.
I was hospitalized, placed on medication and consequently relieved of flight and airborne duties, and denied troop command almost immediately. I was told no more motorcycle riding, no scuba diving, no swimming or even bathing unsupervised. Then I lost my driver's license. What would I lose next?
That question was answered following three years of attending military schools, and filling numerous administrative positions. I was placed on disability retirement on May 23, 1980. Having been an Army dependent and serviceman all of my life, I was being forced into a foreign environment, civilian life!
In June, in response to one of my resumes, I was flown to Dallas, and hired to work for an electronic data storage company in their Boston office. They assured me that I would be able to fulfill the duties that would be assigned. I began to believe in myself for the first time in years. I accepted the position of manager of the computer tape library and input/output control division. The position was one of high stress and I started to experience seizures at home, then at work. By December, 1982, I was having 10-12 seizures a week at work, in spite of a three medication regimen.
In February, 1983, I was hospitalized in the Jamaica Plain VAMC, in Boston, for observation and to determine the reason for my idiopathic seizures. After several days of tests, including sleep deprived EEGs, X-rays and IQ tests, I was still diagnosed as having idiopathic seizures.
Later that month, I was sent to the VA Epilepsy Center at West Haven, Connecticut, for some "specialized tests." I was placed on 24-hour monitors and after eight days, had a seizure strong enough to be monitored by the EEG. I had right temporal lobe seizures ... I had epilepsy! What was I to do? I had heard of no cure for epilepsy, and the medications either did not work for me, or I had bad reactions to them and could not take them.
In July, 1983, I was released by my employer due to the fact that I had uncontrollable seizures. I was placed on 100% disability and retired to Maine, my family home. My wife and daughters would need the support of my family over the coming years. The doctors told me that due to the nature of my epilepsy, frequency of my seizures and lack of control with medications, I would never be able to work or drive again. I was devastated.
From 1983 to 1992, I held many volunteer positions in an effort to keep from going stir-crazy. I also became heavily involved with hunting and fishing with my father, who is also my best friend. In 1985, I assisted in building an addition on his house, and in 1987, we designed and built mine. Without the love, understanding and support of my family and friends the last few years would have been excruciating. Annette, my wife of 27 years, and Heather and Kristen, my daughters, have been terrified many times by my seizures but have remained at my side throughout the ordeal. They gave me the courage to hold on to the dream of a possible cure.
Dr. Bruce Trembly, my neurosurgeon at the VAMC in Togus, Maine, saw me on a monthly basis from 1983 to 1992. We tried to control the seizures with drug therapy. Nearly all known seizure medications, including cannibidiol, an experimental medication, were tested with no success. Dr. Trembly would not let me give up hope of some day being free of the seizures. We would find the right combination "someday."
In August, 1992, Dr. Trembly and I discussed the possibility of epilepsy surgery. In December, I was sent to the VA Epilepsy Center again, nearly ten years after my first trip. I met Dr. John Ebersole, the chief of neurology, who explained the four phase surgical program that I would be following in the next few months. I couldn't believe what I was hearing. There was a chance that I could have a surgical procedure that would possibly cure my epilepsy!
Phase One--December 8-23, 1992
I returned to West Haven, was placed on 24-hour EEG monitoring and started neuropsychological testing. My medications were gradually reduced, and on December 16, I experienced several observable seizures after 24 hours of sleep deprivation. The seizures were monitored and I was finally diagnosed, after 16 years, as having right temporal lobe complex-partial seizures. Due to the location of the seizures, it was determined that I was a possible candidate for epilepsy surgery. What a Christmas present!
Dr. Ebersole asked me if I would like to assist in a program to test some new magnetoencephalography equipment. He explained that I may or may not benefit from the research, but it could benefit future patients. I agreed and was told that I would find out more about the project in phase two.
Phase Two--January 18-21, 1993
I returned to West Haven for a specialized angiogram called a WADA test. The test would determine the amount of sensory loss I could expect from temporal lobe resection surgery. I was lucky; I was left hemisphere dominant. That meant that my speech and memory should not be affected by the surgery. I had passed another test toward the hoped-for surgical procedure.
Dr. Ebersole told me that the magnetoencephalography program would involve a trip to Albuquerque, New Mexico. I would be assisting in the testing of a magnetic sensory imaging (MSI) device that was designed by Biomagnetic Technologies, Inc (BTI). He explained that the device would map out my seizures and should make my phase three surgical procedure much easier for the surgeon. He also explained that the results of the test could possibly alleviate the need for invasive mapping procedures in future patients. The thought of participating in such an important project excited me. It gave me a feeling of self-worth that I had not felt since my days as a Medevac pilot.
On March 18, Annette and I flew from Portland, Maine to Albuquerque, New Mexico where we met Drs. Bill Zoeckler and Ken Squires of BTI. I underwent two days of testing, and Dr. Ebersole told me that the information obtained would be of enormous help to the neurosurgeons in my phase three. BTI treated Annette and me like royalty while in Albuquerque. Drs. Zoeckler and Squires were gracious hosts. I felt important!
Phase Three--April 8-23, 1993
This phase of the procedure involved the insertion of ten long wire probes into my brain to monitor seizure activity. On April 13, I met with Dr. Alain DeLotbiniere, Assistant Professor of Neurosurgery at Yale University. This man was going to change my life! He told me that the results of my imaging in Albuquerque were to be extremely helpful in the placing of my probes. Following the surgery, Dr. Ebersole told me that the seizure activity I had while wearing the probes were in the exact locations indicated by the MSI.
Thus, the possibility did exist that the MSI might some day replace invasive surgery in pinpointing seizure activity.
Phase Four--June 18-July 8, 1993
On June 29, 1993, I underwent a surgical procedure called a focal resection. During the operation, the damaged portion of my right temporal lobe was removed by a team led by Dr. DeLotbiniere. He told me that he also removed a small piece of shrapnel like material from the dura, the leather-like sack containing my brain. I was reborn, and finally knew for sure the cause of my epilepsy! The operation completely changed my life.
I experienced several months of postoperation depression, but that was a piece of cake compared to the seizures. Luckily, Dr. DeLotbiniere left my sense of humor intact, and that helped with the depression.
I did have another problem to deal with though. I was more terrified than I had ever been. I had been seizure-free since June 23. I had to find a job in a depressed market, with no gainful employment in the last ten years, workman's compensation fears on employers' minds and epilepsy on my record. And, on June 30, 1983, I was told that I would never be able to work or drive again. I had learned over the years to believe and accept this fact. On June 30, 1993, ten years later to the day, I awoke in the surgical intensive care unit with a new hope of freedom. This hope, fed by postoperative depression, turned to fear until November 5. That is when I met Mr. Mick Smith, a vocational rehabilitation counselor at Togus VAMC. His assurance that I would be able to find a job with VA assistance was comforting.
Things were finally looking up. On December 6, 1993, I would be tested for my Maine driver's license, and I planned to start work as a shift supervisor in a local textile mill in January, 1994. I felt like I was 45 going on 16! I couldn't wait to get my wheels!
I owe this new start in life to the forward thinking and professional knowledge of Dr. Brace Trembly, Dr. John Ebersole, Dr. Alain DeLotbiniere and his team from Yale, and to pioneers in medical technology like Drs. Bill Zoeckler and Ken Squires and Biomagnetic Technologies Incorporated. A most sincere thank you from a greatful family.
It is now early 1998 and the last five years have been a roller coaster ride for my family. The hopes for the 1994 new year were not to be realized. The job at the textile mill fell through and repeated tries to enter the job market proved fruitless. Now what would I do? Depression fired by the poor job search results, a lack of anti-epileptic medications in my system and continuing chemical imbalances from the operation answered the question. I ended up in Togus in June of 1994 for treatment for depression.
That is when my family was introduced to Pat Riker, a nurse practitioner with the Veteran's Service Center in Portland. Pat taught us the skills we would need to cope with the rapid changes taking place in our lives. Her help was invaluable, especially for Annette.
In September, 1994, I returned to Mick Smith in the VA vocational rehabilitation office for help. He suggested that I go back to school. He felt that school would give me time to decide what I wanted out of life, and give me a new start. Psychological profile tests confirmed my desires to be a nurse were a good personality match. A position as a nurse would closely match my need to feel helpful, and enable me to use the limited caregiving knowledge I gained while in the Medevac units.
Following three months of soul searching, I pushed my fears aside and applied for admission in the Bachelor of Science in Nursing program at Saint Joseph's College, Standish, Maine. My first semester, in the spring of 1995, was as an undeclared student at the suggestion of Sister Mary George O'Toole, the Associate Dean of the college. The semester gave me the opportunity to test the water to see if I had retained the ability to complete such a stringent program following my surgery. The semester was a success! Mick was right, I found something that I could believe in and turned my depression into determination.
The years at Saint Joseph's have flown. I owe a great debt of gratitude to the nursing faculty who taught me, once again, to believe in myself, and pushed me to become the best I could be. Their professional approach, constructive criticism, nurturing and patience throughout the course of study, have made the return to work an exciting proposition, instead of an impossible dream.
I am also grateful to the student body of Saint Joseph's who showed me that age poses no limits or barriers to friendship. I am waiting, along with the rest of the class of 1998, for word from the applied for jobs and schools, the long coming graduation, and the chance to prove to the world that, we can do it!
Questions or comments about this article may be directed to: Wilfred B. Watters, RN, BSN, 59 Mineral Spring Road, Windham, Maine 04062.
Edited by: Helena E. Heels RN, MS, Assistant Professor of Nursing, Saint Joseph's College, Department of Nursing, 278 Whites Bridge Road, Standish, Maine 04084-5263.
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|Publication:||Journal of Neuroscience Nursing|
|Date:||Oct 1, 1998|
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