HANG IN THERE An Uninvited Guest

By Charles R. Kuhn

My story of life with Multiple Sclerosis. In simple to understand words, this is my personal story of living with Multiple Sclerosis, from first diagnosis to progression. Filled with real stories, humor, reality and the encouragement to anyone fighting their own 800 pound gorilla to take on the speed bumps raised in front of you. This is an account not filled with medical techno verbiage, but everyday language about conquering daily tasks with a rude, uninvited guest waiting to disrupt your life.

• Language: English
• Publisher: Charles R. Kuhn
• Release date: Aug 4, 2015
• ISBN: 9781311076007

Charles R. Kuhn

Mr. Kuhn resides in Citrus Heights California outside of Sacramento with his wife, an elementary school teacher and their many rescued animals, including dogs, cats, guinea pigs, rabbits, chickens, a turtle, parrots and pigeons. Mr. Kuhn has two children, a 27 year old daughter who teaches fourth graders and a 25 year old son completing his college degree in environmental engineering. Mr. Kuhn has had the privilege of traveling through Southeast Asia for work and many spots in Europe with his family.His writing style is largely based on personal experiences and family stories he brings to life in riveting prose and expertise. Mr. Kuhn’s writing skills have developed after many years as a technical writer and project manager as an environmental consultant. Mr. Kuhn has a Bachelors degree from Cal Poly, San Luis Obispo and a Masters Degree from the University of Nevada at Reno.Later in life, Mr. Kuhn found his voice as a recreational artist and entertainer after being diagnosed with a debilitating disease in mid-life. Though today, he is entrenched within a wheel chair, Mr. Kuhn hand inputs his novels, short stories and poems.As a writer, Mr. Kuhn seeks to convey answers to mysteries we have all innocently encountered in everyday life. It is his hope to make us all question and seek the truth behind life’s surprises. If he can be successful in making just one of his readers ask “Why?”, he deems himself a triumph in making us think a little above and beyond the ordinary.

Book preview

Hang In There

Living with an Uninvited Guest.

By

Charles R. Kuhn

Dedication

Dedicated to my father,

who coached me to always hang in there. And my daughter and son,

who taught me to never quit.

TABLE OF CONTENTS

I. Calm before the Storm

II. The Storm

III. Landfall

IV. Medical Conclusions

V. Diagnosis

VI. Growing Changes

VII. I’m Back

VIII. Reinvention

IX. Treatment?

X. My Period of Flat line

XI. Continuation

XII. Retrospective

XIII. Normalcy

XIV. Even More

XV. Caretakers

XVI. Limits

XVII. Hope

XVIII. Important Tidbits

XIX. Fighting Back

XX. Causes and Cures?

XXI. Laugh Every Day

XXII. The Pain of it All

XXIII. Exhaustion/Fatigue

XXIV. Moving On

I. Calm before the Storm

The night was crystal clear. Each star glistened like a shining jewel. The sky was clear presenting a dark canvas for the shimmering lights to shine against. Each breath cast a vapor trial telling you just how cold it was and would later become.

I looked down the field at my crew and the trembling sinews of the players awaiting my call to action. Bright lights cast eerie shadows on the field of play. The National Anthem had just been completed, one of my favorite parts of the night. The starting moment was upon me. I raised my right arm and blew hard on the whistle in my mouth. As I blew, I twirled and pointed northward out of the field of play. The crowd rose in unison. I turned south and saw the ball tumbling through space rising and touching the edge of darkness before gravity pushed it back to earth.

A player raced forward and caught the ball about the seven yard line with me closely behind. He broke to the right with my full strides in rapid pursuit. At the fifteen, the runner cut harder to the right away from his closest pursuer. I followed the ball carrier as the out of bounds line approached. My vision was on all the action directly in front of me. Did everyone have their hands in? Was anyone going low? How far from the sideline was the runner? Were the coaches and players giving him room? A defender hurled at the ball carrier. He struck him near the hip driving him sideways across the sideline. I raced to the runners last inbounds spot and dropped my bean bag continuing to race after the runner to assure no extra-curricular activity broke out.

My whistle was still clamped in my mouth. I was waving both arms above my head and blowing the whistle madly. My partner on the sideline was racing down the line waving his arms above his head and furiously blowing on his whistle.

It was the opening kickoff of the Friday night High School football game. I was the referee and teamed with three other officials to manage the game.

I gathered up the ball and raced back to the middle of field of play to spot the ball, checked with my linesmen for accuracy, my umpire for his ready and pointed with a nod at the back judge to assure his readiness. Taking a deep breath, I blew hard on my whistle and snapped my arm straight down to signal to the time keeper to start the clock at the snap. I jogged behind the huddled players and took my position resting my hands on my bent thighs. I loved this game, the excitement, the competition, working with the young people on the field of play. It was exhilarating. I took a look around taking in the moment, never cognizant at that time that this game would be one of the last I would ever do. Not because, I was ready to give it all up after ten years of racing up and down the field. But, because later that next year, my body would fail me. Of all things, my own body had decided to turn on me and throw in the towel. It checked out leaving me abandoned for no apparent reason. It would be the beginning of many forfeitures, that I mentally objected to, but physically had no choice in the matter.

After the game that night, my crew and I visited a local watering hole for a beer and sandwich. It was part of the camaraderie that we enjoyed and one of the unspoken benefits of the ritualistic after game un-windings.

This night, I was lucky that I had been in my hometown and did not need to travel to get to an out of town game site. After the sandwich was washed down, I headed for home. This was a true luxury. To call a game, shower, change into my street clothes, grab a beer and head for home only 15 min. away. I should be home before my wife retired and be able to enjoy tidbits of the day with her. The kids would already be in bed and hopefully encased deeply in their dreams.

My wife and I were the parents of two wonderful children. Rachel, our daughter, the oldest at 12 and Chris our son at 10 years old.

I entered the house that night at about 11:30. As I had hoped, my wife was still awake and watching the end of the local news. We shared news of the day, the events of the game, with me reporting that the home team had been soundly beaten and caught up on the kids’ daily activities. We briefly discussed plans for the weekend that were new and exciting.

During the weekend we would run together, as my wife was working her way up to attacking a marathon. The run would be short, about four miles, but we would push each other, so that our breath would come in ragged gasps at the end.

In the ‘old’ days, I would have officiated three more pop warner football games on Sunday, entering the house that evening waving the seventy-five dollars in cash I was paid for that service. The cash was a small peace offering for my dereliction from home duties for that day.

That year, I would be one of three officials chosen by my fellow officials and coaches from schools I had already refereed that year to call the State AAAA championship game in Las Vegas. It was an honor to be selected and one of the rather highpoints of your career as a High School official. That year I would take my position as the back judge for the game, using my long strides and speed to cover the field from side to side.

But, a funny thing happened at that game. I got tired. Not too surprising considering the amount of running I did during the game, but this was an exercise I had been conducting for the last three and a half months. I should have been in better shape by now. But, it was the State Championship game and perhaps my own adrenaline had pushed me harder to cover the game and make sure I was in the right place at the right time. But, then I started to consider another episode during the play offs leading to the championship game. I had charged out of bounds following the ball and the scrum of players in hot pursuit. As I jogged back to my position on the field, I noticed my legs were heavy and required specific attention to place one foot in front of the other. That’s odd I thought. Perhaps the excitement of the play had gotten to me. Huh. Twice in the last few months. Better watch those beers on the weekends, I nonchalantly thought.

My weekends were usually spent at home on ever insistent yard work, some home fix-up projects, maybe a dinner out and entertaining and enjoying the kids. Of course, there would most likely be the never ending trip to the grocery store, maybe a quick stop to pick out the newest released video, a fill up with gas and perhaps even a sandwich stop, if the kids were rumbling around in the back seat.

Sunday would be spent with my wife pursuing mundane chores and with the kids running in and out the front door burning off a minimum of that boundless energy they possessed. After the ball games, I would most likely retire to my office to layout my attack plan for the coming week, take in a chapter or, two of the novel I was in the midst of reading or, simply enjoy the quietness of the moment alone.

Monday morning would break upon us as any other new week began. Breakfast for the kids, lunches would be prepared, the two little ones would be spirited off to the bus stop, dogs would be fed and watered and my wife and I would head for the garage door to start our vehicles and head off. My wife and I worked together at an engineering consulting firm located only 3 or, 4 miles from our home. The commute did not take long. By the time we arrived the news story we were just listening to on the radio would not have been completed. The advantage of our office location was that out the second story window we could see the elementary school our children attended. The proximity to the school for drop off and pick up was easy and any necessary communication readily accessible.

My office work usually started with me returning calls from the previous week, composing marketing letters that needed to go out to new and prospective clients, plunging into the numerous reports, permits and other environmental documents that were associated with projects we were working on and communicating with other staff in the office. The day usually began finding me with a phone in my hand by 7:30 and continued until the last phone call of the day was hung up near 5:30 or, six that evening. The days were busy, clients were happy, the corporate office was pleased and life was good.

This was a particular trying and nervous time for all of us in the office. On my own volition, with no guidance from the corporate office, I had submitted a proposal to Malaysia for ground water monitoring work. The company already conducted business projects in South America. I theorized that expending project work into the rapidly growing Asian market was a logical step for our satellite office. After all, I had opened a successful office in another State, why not on another continent?

It was a busy time trying to team with a local Malay firm that would add credibility to our project. The proposal had been drafted after I studied very closely the Asian market and numerous other projects that were being pursued by American firms in the area. With my staff behind me, I felt that we could be competitive in the international marketplace and open up another market that would push our sales and reputation forward. Little did I know the complexity of dealing in the Asian market and the nuances that would be required to be learned on a day by day basis in communicating with prospective partners, government agencies and local consultant firms. The proposal I was putting together for Malaysia would be submitted directly to a government agency in Kuala Lumpur.

Our proposal was received and moved up the ranks slowly, but surely until we were contacted to travel to Malaysia for an interview for the job. Notification of this development, threw our office into greater disarray. Not only did we now need to prepare for this presentation, we must study the project even closer and communicate with our subcontractor to maximize our efficiency.

The hours at the office became even longer. Days started earlier. Eighteen hour days became a regular. Thankfully my wife was very understanding and the children were even better at keeping the lid on the simmering pot at home before it blew off.

As the day of my departure for Malaysia approached, I stressed out and considered the reality of the direction I pursued. From a business perspective, did it make sense? If we were successful, then of course it made sense. If I failed, the opposite would be true.

In addition to balancing the office work and my recreational work, there were of course all the tasks associated with caring for a new home, making sure the children did not feel neglected or, ignored, earning the income to pay the bills and conducting the thousand and one other tasks that are required on a daily basis in a busy life.

Our company was not awarded the job in Malaysia. However, new channels had been opened to me that I stepped into and begin to develop. These were engineering projects in the country of Thailand. Within a short time, our company had been asked to participate in a massive proposal to the BMA of Thailand or, Bangkok Metropolitan Authority. The proposal was to be done on a fast-track basis. This involved numerous trips to Bangkok, near 22 hour days and grabbing any sleep, if any was available to grab. This was an exciting time in my life, but very demanding on all fronts, both professional and personal.

Over the course of the next five months, I traveled to Bangkok 10 times. Communications were intensive. The interview process for the job was exhausting. At times I was locked away in a conference room to do nothing but qualify the proposal and our client. I slept on a cot in the room of our client, was fed my meals there and dedicated my existence to pursuing that job. In the end our team was awarded the project for an amount slightly over forty six million American dollars. However, any celebration was extremely short-lived.

The Asian financial crisis hit. New economic development projects were canceled. The one I had been pursuing was one of those scratched from the board. The effort expended in chasing the job went for naught. This was not well received by my business partners and my position in the company was soon challenged.

I quickly turned my attention to project potentials in China. This represented a chance to gain back some company confidence and build up the company coffers. I had started a relationship with an equipment supplier in the States. An association had also been developed with an entrepreneur specializing in taking advantage of their contacts in China to introduce American business and technology. I was soon on my way to Shanghai to meet with various upper and lower government agents to promote my company and the equipment technology I was representing. The trip was strenuous and took me deep into the heartland of China for numerous presentations.

Three quarters of the way through the trip, I came to a startling conclusion. The government agents I met with were not interested in importing the technology into their country for program implementation, but were interested only in acquiring a single machine to perform reverse engineering and develop the project on their own. This realization quickly brought my Asian travels to a close, so that I could return to the American homeland, my family and my busy job in the states.

And, so my international business travels came to an end. I had not been successful. I had visited Malaysia, Thailand and China, flown halfway around the world, but now returned home to a fracturing home life, a job in disarray and my health on the verge of collapse.

Would I do it again? Absolutely. My eyes were opened to new realities. My immune system was now open to complications. Were these complications a factor of my travel? I cannot say definitively, ‘Yes’. But, I also cannot say definitively ‘No’.

My failure to bring an Asia project home quickly became the least of my concerns. Without even knowing it had happened, my immune system began to mount a dastardly revolution. With no known cause, it attacked the body it was supposed to protect with deadly accuracy. Why? The scientific community struggles to find answers. Why had I pissed off my immune system so much? It remains a mystery and may always be so. Was it the pollution I was exposed to in Asia? After all, when in China for two weeks, I never saw the sun due to the choking clouds of air pollution hanging in the sky. Could it be the change in my diet? Being cramped up in small spaces for extended periods of time to cross the great ocean? The stress I was exposed to? Or, was it just something as simple as being in the wrong place at the wrong time?

Regardless of why, I could feel changes happening to me. They were small changes at first, inconsequential, but changes none the less. Feelings in my hands, feet, legs and eyes were different. Nothing I could put my thumb on, but something was happening and I didn’t like it.

I sensed the difference, but hadn’t started to come down with illness symptoms or, experience any physical changes. I would palpate my muscles in the morning, stretch a little longer, stare at my reflection in the mirror, spend a quick moment wondering if this is what old age felt like, but that was all. After all, I was thirty seven years old, not old in my book. Maybe my kids book, but not mine. And so I waited. Not for the outbreak of some disease, but the appearance of something lurking in the shadows waiting to spring its unwelcome and cruel surprise upon me. I wanted to be prepared, not taken by surprise. I was never big on surprises, and this was no different. But, I had no idea of the aggressiveness of the beast that would come charging out of the darkness.

II. The Storm

My