The beginning was innocent. It was a warm day in July, and I had gone for my usual 10- to 12-mile Saturday run along the river. When I returned, I went for a swim and then began doing small chores around the pool. One of those involved replacing the axle on a chaise longue. The hole in the frame needed to be enlarged, so I brought an electric drill from the workshop and plugged it into an outlet at the edge of the patio. Using my left hand, I began to drill the opening larger.
Suddenly, the drill twisted, trapping my hand when the electric cord pulled tight. That same pull stripped the wires inside the aluminum casing of the drill, exposing the wires to the drill's frame and shorting through me to the ground.
My left arm and leg immediately went into a spasm, and I called out to my son, who was standing on the other side of the pool. Seeing what happened, he ran over and jerked the cord from the outlet, and I slumped to the ground. My first sensation was of light-headedness. I'm sure I had a brief fainting spell but did not totally lose consciousness. My left arm hung limp at my side and felt numb and heavy.
My immediate emotional reaction was relief that the shock had not caused cardiac arrest and been fatal. That was quickly followed by embarrassment that this had happened. I later discovered that the ground wire in the outlet was faulty. I went about the rest of the day using predominantly my right arm. The soreness gradually lessened in my left arm, but I did notice some numbness and what I interpreted as changes in the blood vessels of the arm and hand. Within a week, I thought I had recovered and felt fortunate to be alive.
I am an eye specialist who takes pleasure in performing microsurgery. Throughout my life, I have always enjoyed good health. In high school, I played various musical instruments and worked with my hands as a garage mechanic. I enjoy hard work and could match any of my peers in physical endurance and strength.
Curiosity and my interest in helping others led me to medical school, where I let my physical condition slide and vowed on completion of my internship that I would return to the fitness of my teen years. On active duty with the U.S. Navy, I took up competitive swimming for the first time and achieved significant success. After my tour in the Navy, I went to Boston for a residency in ophthalmology -- and my fitness again declined.
As I entered the final months of the residency, I turned to running for the first time in my life. Four months later, I was in good enough shape to complete my first Boston Marathon. I competed for the next 19 consecutive years. In 1974, while on the faculty at the University of Florida, I had my best time in the Boston Marathon -- 2 hours, 34 minutes. That same year, I became the chairman at the University of California in San Diego and continued my active involvement in running, mountaineering and scuba diving along with an active medical research program.
In 1980, I was attracted to an administrative position in Washington with the Veterans Administration. I commuted daily on foot along the Tow Path of the C&O Canal beside the Potomac River. In the fall of that year, I completed a 50-mile run in Chicago in a time of 5 hours, 46 minutes.
By the summer of 1985, I had clinical appointments at three local universities and operated on VA patients every Friday with the residents from Johns Hopkins University. I was running 80 to 100 miles a week, regularly traveling and teaching, and had an active research laboratory. Many opportunities in administrative and academic medicine were coming my way. My wife and I were celebrating our 27th wedding anniversary and our five children were maturing and accomplishing their own goals.
But that innocent accident with the electric drill heralded a permanent change in my life. It propelled me from one side of diagnosis to the other -- from being a physician to being a patient. I moved inside the diagnosis. ::
Electrical injury of the type I received is often fatal. Electrical injuries can cause damage to blood vessels, nerves and the spinal cord. Peripheral nerves and the spinal cord are particularly vulnerable because they are such good conductors of electrical impulses. The consequences of such an injury can have a latent period with changes occurring up to years later.
Within two weeks of the accident, I was aware that something was wrong. My secretary noted that my left hand was blue compared to the right, and I complained of numbness. I had the sensation of a "beehive" in my left shoulder blade. As the weeks passed, I recognized these "beehive" sensations were involuntary muscular twitchings, which began to spread into the left upper arm, forearm and, later, the hand. These involuntary muscular twitchings were an old friend. I had experienced them for years following exercise or on exposure to the cold. But these twitchings were different. They seemed to be present most of the time and were more massive, affecting my whole left arm. While I didn't deny their presence, I kept thinking my condition would stabilize.
I read about electrical injury and was reassured to find that while it mimicks many things, it can often reverse itself after a period of time and improvement can occur. Therefore, I was patient.
In the meantime, I replaced the electrical outlets near grounding sources with ground-fault interrupted (GFI) outlets. These can be purchased at an electrical or hardware store. A GFI outlet will detect a ground fault and interrupt the circuit in a fraction of a second. Theoretically, such a circuit could have prevented my injury. I discarded the old drill and replaced it with a double-insulated model.
By November 1985, there was no improvement. Progressive weakness and loss of function in my left arm prompted me to get a thorough examination at a nearby university neurology department. During my admission to the hospital, an MRI (magnetic resonance image), myelogram, CT-scan, numerous blood tests, plus electromyographic, nerve conduction and nerve velocity studies were performed.
The conclusion reached by the consulting physician was a great relief. He found that the damage appeared isolated to the left upper arm with some damage to the spinal cord that extended down the left leg. I had scattered areas of numbness, particularly in the left hand.
A curious thing was that my fingernails stopped growing on the left hand. There was depigmentation of my fingers and the hand was at times almost black, yet at other times white, apparently from changes in blood circulation.
I asked to be taken off the surgery schedule because of the newly developed clumsiness in the left hand. No more would I perform intricate eye operations. I was glad I stopped doing surgery because in the ensuing months there was more weakness in that hand. As 1986 began, I was optimistic that I would just have to wait for a short period and there would be stabilization. There was some decline in my strength through the spring, but during the summer my running times improved. I won some first-place trophies again. I thought I was well on the path to recovery.
Over the Labor Day weekend, I had a high fever and headache associated with a stiff neck. During the fever, I tried to write a note to myself and found I couldn't use my right hand. The fever spontaneously broke, and the next day I seemed to be normal.
But within the next few weeks, I had the onset of involuntary twitchings in the fine muscles in the right hand, which progressed to the right forearm and shoulder. Coincidentally, I noticed for the first time spontaneous twitchings in the left thigh. Then another old sensation returned. Muscle stiffness, which I had previously experienced in the cold, was present in my arms and left leg. A new experience was spasm in my arms and left leg. My running times once again plunged, and by November I ran in the Marine Corps marathon in my slowest time ever -- 3 hours, 39 minutes.
My feelings of hope for improvement were now balanced by the realism that my strength was ebbing away. A race on New Year's Day was slower than ever. The last time I was able to run a race was on Valentine's Day, 1987. It was the slowest time I had ever run and at a speed at which I used to walk.
Ironically, at about the same time I had the return of sensation in my left arm and hand, the color of my hand improved and my fingernails started to grow. By May 1987, the numbness in the left upper arm had repaired, but the motor loss was continued and it was increasingly difficult to move my arms and legs. ::
All along I was guarded about my prognosis. When in early 1986 the problem with my left shoulder became apparent to others, I discussed the injury with my fellow workers. I told them there was hope it would get no worse and eventually might improve. With my rapid decline in the fall of 1986, more associates and co-workers expressed concern and spontaneously offered help. With a heavy travel schedule, I found it more difficult to haul luggage laden with papers and reports and appreciated the assistance of those I was traveling with. By December 1986, I was forced to take the subway to and from work rather than my beloved run along the river.
Increasingly, I turned to aides to assist in tasks. My wife sewed Velcro to replace buttons, I had clip-on ties made and used slip-on shoes. A hook made with a wooden rod and a cup hook was a great assistance in closing zippers and grasping objects. During this time, I was aware that I was humming a tune of the Beatles, "I'll Get By With a Little Help From My Friends." I was amazed, too, at the spontaneous assistance offered by strangers as my clumsiness increased.
My mood went through pendulum swings of despair and euphoria, hope and loneliness, a feeling of dreams seen and then dashed.
Despite a busy travel and academic schedule, I began to have an awareness of dying. The reality of death slithered into my consciousness like a serpent and with stinging thrusts, punctured and numbed my waking hours.
By the spring of 1987, I realized I was not getting any better. I went in for another round of tests. On March 30, 1987, a consulting physician confirmed the serpent's bite. A diagnosis of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease) was unequivocally made.
Suddenly, I was one of the "other people" -- these things always happen to other people. The physician wondered if the ALS was precipitated by the electric shock. He had seen other cases, one of which had a history almost identical to mine. Others weren't so sure.
To me, it doesn't matter if the progressive degenerative disease was lurking beneath the surface ready to come forward at this time or was precipitated by the innocent accident. The reality of the diagnosis and the consequences are the same. :: :: ::
There was no turning back. The sentence of death had been declared and the prison of my body defined. Lou Gehrig's is a noble disease. While it causes progressive loss of most voluntary movement over a period of years and eventually robs the person of speech, swallowing and respiration, it leaves the mind alert and all senses intact. It is a severe test of the devotion of loved ones. ALS does not rob the mind like Alzheimer's disease, nor does it disfigure the body like severe trauma, burns or cancer. But it takes life away.
Maybe it is easier for a physician to give a fellow physician the diagnosis of a terminal disease with no known cause or treatment. A physician already has general information on illness and has ready access to specific details of the case.
Both physician and non-physician must turn to organizations such as the ALS or Muscular Dystrophy Association to learn about clinics that treat the disease, the latest research and the day-to-day management of the condition.
When the diagnosis was made, I felt myself passing through the transparent curtain that separates the doctor from the patient. Suddenly, the physician's concern to heal was transformed into the patient's desire for help, cure transformed into caring, certainty into hope. I recalled the many patients referred to me with "hopeless" conditions. Throughout my years of teaching, I had tried to impress on students and residents the importance of crawling inside a patient and trying to experience what a doctor's words mean to the patient.
I remember how many patients were relieved if I did not use words like disease, cancer or blindness. Above all, I stressed the need to leave every patient with hope. Now I was the patient.
Hope makes the horizon bright, the pain less and each day worth living. There is no analgesic, energizer or comfort like hope. No patient should be considered "hopeless," as help in some form will keep hope alive. I often asked myself as a physician, what did my patients want to hear, what could they accept and what was better told only to a loved one. I now found myself in the patient's position, wanting to hear the truth, able to accept anything and wanting to share the reality with loved ones as the kindest framework within which to cope.
The reactions of others -- whether they were fellow workers and professionals, friends or loved ones and family -- were the same: "It isn't fair . . ." "If only you could trade places with me . . ." Everyone had questions such as, "Are you sure?" "Could they be wrong?" "What can I do?" I heard accounts of pain and torment that each had gone through with an illness. Many were concerned about what impact my illness would have on them. Their emotions were transparent on their faces. I could see denial, anger, sorrow, disbelief, revulsion, lack of understanding, recognition, sympathy and empathy, as each in their own way relived the secret terror of death and dying.
From inside the diagnosis, I am impressed with the universal need that all people have to care and to give assistance. Yet most leave room for the individual to assert independence to whatever degree function allows.
Every day for me there is a new loss, every day a new frontier, and every day the realization that joy comes from receiving assistance as well as from giving assistance.
I have been able to draw strength from a lifetime filled with achievement, optimism and curiosity. I had never experienced personal handicap, although I have worked with handicapped people in my medical practice and the sports field. I see progressive handicap as a challenge and an opportunity to strive in a way that the able-bodied seldom experience. I use my ingenuity to discover new ways to accomplish activities as my functions decline. I vow denial to the strength-sapping emotions of depression, despair, frustration and fear.
Retelling my story was at first beneficial, much like a catharsis. With the subsequent retelling there was a freshening of the wound and return of the pain experienced when I first learned the diagnosis. But not only pain. The meaning and the joy of life are best understood beneath the shadow of death.
I realized an inner peace when the sentence had been declared, my time defined and my remaining tasks listed. The gift of knowing the time of death -- being able to share with loved ones the emotions denied to those whose departure is rapid -- compensates for the slow dissolution of movement. As physical ability is lost, there is no lessening of the will to bump against whatever obstacles are in place and achieve whatever can be achieved.
David M. Worthen, MD, is an ophthalmologist in Potomac, Md. A shortened version of this article originally appeared in the Journal of the American Medical Association, Sept. 4, 1987.