by Bill Schoonover

All my life, I've faced problems head on, never backing up, nor giving in. Somehow, I've manageed to find and apply a solution to whatever problem or trouble was facing me at the moment.

This knack, or talent, that I possessed, being good at problem solving, worked well in my behalf, both on the job and in my personal life. In the work-a-day world, I was a survivor, chiefly because of this knack for finding a way out of or around almost any situation, including very sticky ones.

I preface this writing with this information, chiefly to make the reader aware that I felt that I could, and did,, handle life's problems successfully, and independently. Oh yes, I was my own man, and proud of it, until I met my match. I finally ran into a problem I couldn't solve. One that I could not find a way around.

In October 1996 my world came crashing down around my feet. Responding to an increase in strange feelings in my legs, accompanied by a growing loss of leg strength, I sought the opinion of our family physician. My doctor recommended a checkup by a neurologist, and had his receptionist make an appointment for me.

With great trepedation, I kept that appointment. Following a cursory examination, the neurologist set up an appointment for me to undergo an EMG (Electro-MyoGram) session to determine what was going on in on the muscle tissue in my body. Now, I really began to worry. Terrible thougts troubled my mind as I waited the few, seemingly long, days until I was to do the EMG.

At last, the day arrived. I submittd myself as a human dartboard for a two-hour EMG testing of muscular activity. At the conclusion of the testing, the neurologist, in one or two short sentences, burst my bubble of self-sufficiency and shattered my hopes for the future. He told me he was sure it was ALS, but wanted a second opinion. My worst fears had come true.

My God! He handed me a death sentence as causually as one might remark that he had just heard a dog bark. Not just a death sentence, but, perhaps, the most cruel of the terminal diseases. A sinister monster that slowly robs muscle strength, until the victim is totally paralyzed, with the exception of the autonomic system and the eyeballs. The mind and the senses remain intact, while speech and the ability to swallow are lost.

In a panic, I went into a deep depression. There were other tests, but with the same gloomy diagnosis - ALS. I wanted to die, and even contemplated suicide as a means of avoiding the coming horror to which I had been condemned. Deep in self-pity, I failed to consider the effect this was having on my family. I reacted as if this was happening to me, alone, and shut my immrdiate family out of my life.

In despair, I sank down, mentally and physically, near to the brink of death. Then, in December 1996, miraculously, I reached out to my sister, mother, and father for help. They live in a city over 150 miles away. Their very distance from my daily life made them viable candidates for the rescue mission. My wife and two sons, all of us living so closely together in the same city, were unable to lift my spirits, regardless of their best efforts.

There was a round of doctor vsits and tests which only proved that I was in good physical health, with the exception of the ALS. This period of actvity, which took place in my parents' city, necessitating a lot of travel, ended when a vehicle, in which I was a passenger, left the highway on a trip home and rolled over several times. In a hospital emergency room, I went into pulmonary arrest and spent more than a week in the Intensive Care Unit. This was early in February 1997.

It should be noted that my family was in denial concerning my condition. They felt that my inability to sit up straight and walk much of a distance could be treated with physical training. They were supported in this belief by several dpctors and a psychiatrist, who openly stated that they did not believe it was ALS. In fact, the psychiatrist wanted to treat my depression and conviction that I had ALS with a program of confinement, psychotherapy, and electric shock therapy at the conclusion of my hospital stay.

Following release from the hospital, I returned home to stay. My convalescence period turned into a period of decline that put me in bed, permanently, in December 1997. By February 1998, my diaphram muscles were gone and I was on a Bi-PAP (bi-level positive air pressure) device full time to facilitate breathing. I had decided against a trachyotomy and respirator, because of the negative aspects - impaired speech and feeding tube.

It's been a year in bed, Christmas 1998 is here, and I want to go. This is one problem I cannot eliminate or work my way out of. I've reached the point where I'm ready to cash it in and depart from the living. The reasons are threefold - continuation of life scares me, the burden on my family grows greater, and animosity in the home is increasing. There is no hope for improvement in any area.

The continued deterioration has taken most of my strength. Not only am I bedridden, but I can no longer feed myself, and using a keyboard is fast becoming too much for me. I do not relish the thought of losing all mobility. In fact, the idea of becoming a paralyzed hulk, able to move anything but the eyeballs, terrorizes me. Especially so, in light of the fact that alertness and the mental capacity are undiminished by the disease. I do not want to become a prisoner in my own body. I must escape this ultimate horror.

My wife, Yvonne, and younger son, Dan, who lives with us, are just in over their heads with being primary care givers. Bless their hearts, they were willing, at the outset, to take on the task of caring for me in our home. They hung in there and put their time and energy into taking care of me, for which I am very grateful. Unfortunately, as I grew weaker and less able to participate in my own care, the demands on Yvonne and Dan's strength and time grew to Herculean proportions.

The results of this burden on their resources is staggering. Even with the welcomed and beneficial assistance of Hospice, the load on my immediate family is overwhelming. Yvonne is no longer a youngster, and Dan works a full time job at a local resturant. They are both approaching full burnout under the stress and pressure of the situation. I fear for their health and sanity, yet I am not willing to exchange the comforts of home for the coldness of a nursing home, even for the benefit of my family. There is, however, a solution to this problem.

Yvonne and Dan have no training in home care for an invalid. Despite their best efforts, they remain inedequate for the job. They are able to perform the many tasks required to take care of my needs and comfort, but not smoothly, and with many false starts. This is not an indictment of Yvonne and Dan's efforts, for they are honestly doing, in their words, "the best we can". Rather, I am pointing out one of the weak points in caring for invalids in the home by family members. That, is the lack of training to perform a job that requires skill and understanding in physical anatomy, patient comfort, use of patient care equipment, patient psychology, and a myrad of other subjects.

Without training, family caregivers are left to their own experience, insight, and just plain guessing in performing their tasks. Often, the patient is subjected to stress, pain, or discomfort without the caregiver being aware of the cause. When the patient complains, the caregiver is likely to become defensive, already feeling the strain of trying to cope with an unfamiliar situation. Inevitably, there will be harsh words and accusations, bringing more stress, strain, and pressure on an already vulnerable cast of participants.

This is pretty much the situation at home. Animosities have developed which, in all probability, cannot be put aside. As time goes on, and I reach that point in my deterioration where I can no longer speak, who will champion my safety and comfort issues? Absent the proper training, Yvonne and Dan do not have a good grasp on how I feel and may not be able to discerne the difference between what is and what is not comfortable to me. So far, I have been able to obtain a measure of satisfaction in my care by voicing my objections and desires, often resulting in verbal clashes, but generally achieving the preferred results. Without my input, I have a high level of anxiety about the quality of my existence.

So, there we are. I am faced with a threefold problem of great complexity. The only solution I can find, that is acceptable to me, is to remove myself from the picture. As with many problem solutions, this one will create problems for others. And so, I am mentally torn between relieving my anguish and respecting the feelings of my family members. Do I act selfishly or heroically? I cannot answer this question at this time.

I really want to go. I want to end this nightmare, even if it means cutting off my air supply and, thereby, promoting my own death. At the same time, the thought of death gives me the willies. I liked my life, love my many family members, enjoy a good humor, still like good food, and can still find joy in living. Then, too, I have to consider the effect the means of my death may have on my family and friends.

To be perfectlyy honest, the mystery of what lies on the other side of death frightens me. The possibility of oblivion, if The Bible is wrong, is repugnant to me. Also, the concept of life everlasting on the other side is appealing, but would I fit in, if I had a hand in my demise? In truth, I want to die, and yet, I am afraid of dying. Thank the powers that be, I don't have to make a decision right now.

With all of these thoughts swirling through my mind, I face life one day at a time. Life is still sweet to me. I get what enjoyment I can out of each day, knowing that I have a plan, if things get bad enough.


To update this story, on ----------, Bill loosened his nasal mask, laid out flat in bed, induced a pulmonary arrest, and slipped into that final sleep to which we all must come, where there are no more problems to face.

©1998 William G. Schoonover, Sr

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