How this seated journey began.

Good morning everyone! I hope you had an enjoyable weekend.

I have been encouraged over the years to create a web site or start a blog. Both seemed a bit egotistical to me, Facebook was a stretch for my comfort. Your generous comments and my disdain for the text limitations in Facebook generated the launch of this blog. It is my desire that it can occasionally inspire, provoke a thought and induce laughter. I’m learning how this works, but I believe you can subscribe to receive updates. I will post a link on Facebook when I update this. Please leave honest feedback so I will stay on track with worthwhile material. I thought I would begin this blog at a logical place, the birth of this seated journey. Thanks for reading!

Have a great day! dj

It was a beautiful spring afternoon; an afternoon that would tempt me to leave the office early and be on the river, but I had a doctor’s appointment. The neurologist began to speak, “Mr. Jayne, it is amyotrophic lateral sclerosis, ALS. You may have heard it referred to as Lou Gehrig’s disease.” That was the beginning of my journey, but in reality it started months earlier with a bit of puzzling clumsiness.

On a typical fall Saturday while taking a break from raking the fall foliage, I added some condiments to a grilled hotdog and moved to return the bottle of ketchup to the fridge. Suddenly, it fell from my left hand as if someone had slapped it from my grasp. The bottle crashed to the floor and exploded. As I cleaned the tomato coated kitchen I peered at my hand, puzzled as to what had just transpired. Weeks later, falling prey to my hotdog addiction, I experienced déjà vu with another ketchup bomb.

The days soon grew shorter and the air more crisp. As a fly fisherman, this was always my cue to venture to the basement and begin to tie flies that had been lost on limb-interrupted back casts as well as create new secret patterns for the next Alaskan adventure. Tying flies requires enormous dexterity in the fingers to be adequately successful with the basic skills such as a whip finish, packing and spinning hair, much less the advanced techniques. My hand was failing me and I could not understand why.

By this time my left triceps had developed an annoying persistent twitch. I had suddenly fallen descending in a climbing stand during a hunting trip several weeks earlier. I thought I had a pinched nerve so I asked my neighbor, who by chance was a radiologist, for a referral. He gave me the name of a neurologist at Emory University Hospital.

I set the appointment and began a multiple-month regiment of being poked and prodded. He failed to find the source of my problem and referred me to a second neurologist. After more tests, the second physician was stumped and referred me to a third neurologist. I was in my mid-twenties, still young and foolish enough to think I was invincible. So I never questioned the referrals.

The third neurologist put me through a battery of tests over an additional multiple week period-tests that were more invasive. I had become a familiar face by this time at the Emory clinic; however, it was not the kind of place I cared to be recognized. Emory is a teaching hospital and during my initial visit with this doctor I signed a consent form allowing interns to be present during my examinations. I thought it was strange that they made this request for something seemingly minor. I scheduled an appointment to discuss the results of the tests. I was relieved because this was the first neurologist who offered any results. I began to reflect on the last several months and a nagging concern crept into my thoughts, but overall I remained optimistic. I was ready to put all of this behind me. My life awaited me.

It was a beautiful spring afternoon when I left the office for my commute to the Emory campus. It was the kind of afternoon that I could not control my urge to cast a dry fly to a rising trout on the Chattahoochee River; thus, I would leave work early to do so. The Chattahoochee was only a few miles away from the office. I always had my fly rods, waders and float tube in the back of my truck where I often adorned the gear with suit pants and a heavily starched white pinpoint cotton shirt with the long sleeves rolled up. As I waited for the traffic light to change in front of the office my thoughts drifted to the river rather than hospitals, doctors and painful tests. The Chattahoochee River was to my left and I proceeded to turn right.

I was seated in the waiting area with a bit of an anxious feeling rumbling in my gut. I tried to tell myself it was the steak sandwich I ate for lunch, but I normally have a cast-iron stomach. I could not help but notice an attractive young woman seated in between her parents directly in front of me. My attention was drawn to her because her body had the appearance of an extremely well-loved rag doll. I had befriended the neurologist’s nurse over the weeks and as I was called back for my appointment I asked her what was wrong with the woman. She reluctantly responded “ALS; she has been diagnosed six months.” The nurse’s answer really did not register with me like it should have, but it did trigger a great sense of pity.

I entered the small 1950’s era exam room and positioned myself on the end of the examination table. The paper sheet rustled beneath me as I attempted to find comfort on the rock-hard mattress. To my delight I noticed a tall narrow window right of the table. The intense rays of the late afternoon sun bathed the side of my body. That was such a relief after an hour of sitting in a windowless florescent hell. There were three quick raps on the door that echoed through the high ceiling room. The door swung open. The neurologist was the first to enter and wore a stiffly starched white lab coat with Emory University Hospital and his name embroidered above the breast pockets. He was clutching my files, which had grown quite thick, to his chest like a school boy. His nurse entered next wearing an equally stiff lab coat. Following her was a steady parade of interns that enveloped the room like a neatly packed can of lab-coat-wearing sardines. I quickly thought to myself that this is much more than a pinched nerve. Suddenly, the once comforting sun was hot on the side of my face as a sickening feeling coursed through my body.

The neurologist and his nurse sat on low stools in front of me as several interns uncomfortably shuffled close to each other in order to close the door. With his black-framed reading glasses perched below halfway on his nose, the neurologist began to speak in a frank matter-of-fact voice. “Mr. Jayne, it is amyotrophic lateral sclerosis, ALS. You may have heard it referred to as Lou Gehrig’s disease.” I was familiar with the disease because just days prior to the appointment I was discussing my symptoms with a colleague at work. He said, “I had a friend with the same symptoms and it was ALS.” Without lifting my head I asked the doctor how long I had left. Void of hesitation he replied in the same matter-of-fact voice “three to five years.” It was exactly how I would like to have been told I was going to die if I just had some clue that sucker punch was coming.

The doctor began to discuss the disease process; how I would become totally paralyzed, losing the ability to speak and eat, and how I would eventually suffocate. During his due-diligence speech I noticed one of the female interns was physically shaken by the given diagnosis. It was easier for me to feel bad that she was upset than listen to my fate. “Mr. Jayne, Mr. Jayne! Do you have any questions?” What do you ask when you are in your mid-twenties after being told to throw your hopes and dreams in the trash before leaving the room? I answered no. The parade of lab coats left the room in a silent procession leaving me seated on the examination table. The sight of the young woman sitting crumpled in the waiting area flashed through my mind. The words of the neurologist’s nurse were now registering and replayed in my head over and over, “ALS, she has been diagnosed six months.” Oh my God, six months. I sat there struggling to think what I needed to do next. All I could think about is how I would tell my parents without devastating them, especially my mother.

I was the youngest of three and the only son. My father and mother wanted a boy so badly that the Dominican Nuns in New Orleans where my mother attended school were praying for my masculine arrival. When I came home from the hospital you might have thought it was the second coming. My father is quite the poet and had written a song to the tune of Davey Crockett for my sisters to sing when I arrived.

Davey, Davey Jayne, King of the Jayne Household

He was born in Atlanta, Georgia
He was a big one, they say!
He had a Mama, a Daddy and two sisters
And he was the King of the Jayne Household!

Davey, Davey Jayne, King of the Jayne Household

My poor sisters! They had every right to despise me, but I always felt their love. I was a good child growing up, but I would have been hard pressed to do something disappointing in my parents’ eyes. My sisters were six and four years my senior. They were coming of age during the late sixties/early seventies and did what most kids of that period did-tested the boundaries. I benefited greatly from their exploration as well as the new grounds they charted. I dreaded telling my parents.

I left the Emory clinic for the short drive home. The afternoon was still beautiful with a blue-bird sky and a few wispy clouds, but the world as I knew it just hours earlier was over. Sitting at a traffic light I looked at the people around me and I dearly wished I was them although that was so foreign to my personality. I desperately wanted the chance to grow old, and to fulfill my lifelong dream of becoming a father. I went in the house and called my wife at her job. I finally had an emotional breakdown and started to cry like I have never cried in my life. I managed to blubber, “You need to come home.” I sat in my office completely overwhelmed with a tremendous sadness and continued to sob uncontrollably.

I was working hard to realize my dreams, thoroughly enjoying life and not taking it for granted. I was having great difficultly accepting that a few sentences uttered from a doctor’s mouth was putting an end to everything, including my life.

My wife walked in the house and found me in the office. We shed a few more tears. I felt I had to do the manly thing and be strong for her and my parents. I had been independent for so long. Because I did not want to be dependant on anyone or anything, I could find little comfort in her attempts to console my grief.

We made arrangements to visit my parents that evening soon after the dinner hour. I found my six-foot, three-inch, two-hundred pound body void of an appetite for the first time ever that afternoon and it continued into the night. In my youth and young adult years it was always a possibility for my parents to receive that dreaded phone call informing them I was seriously injured or perhaps worse. I only knew life at one speed-full throttle. I never imagined I would personally deliver the morbid news. As we drove on the interstate I searched my vocabulary for the appropriate words to convey the diagnosis in the least hurtful terms, but my optimism could not disguise the reality that I was dying. We pulled in their drive and parked. Suddenly, all my senses were keenly alert. I could hear my truck begin to cool, the sizzle of the air conditioner condensation dripping on the manifold and the brake pads popping and contracting. I was stalling.

My stomach was churning with that boyish feeling as if I were in trouble and my mother instructed me to tell my father what I had done when he arrived home from work; however, it was exponentially worse. I wished time could stand still. We entered their home and my emotions immediately overwhelmed me and turned me into their baby boy seeking refuge.

I broke the news while we all hugged and sobbed. I was beginning to feel the emotional comfort and healing I desperately sought. We all talked for a few hours about the near and not-too-distant future. We discussed that my wife and I should sell our home and move to their neighborhood when the time came that I would need assistance. I politely nodded in agreement, but I could not possibly fathom that I would need or accept assistance any time in the future.

The conversation later grew awkward as we attempted to ignore the obvious and tried to converse about “normal stuff.” That was the birth of my mother’s several year denial of ALS, or at least until my physical deterioration made that impossible. My loving mother could not bear to think of her son dying.

We said our goodbyes with artificial smiles masking the enormous sadness. During the drive home my thoughts were of the next day. That was the extent of my future I could cope with at the time. Will I tell my boss, colleagues, friends the diagnosis? How long can I work? How will I manage our finances if I cannot work? I did not want anyone’s pity. I owed my employer the truth, especially for his patience with all of my medical appointments that lead up to the diagnosis. I decided to tell him and ask for his confidence not to share this with anyone for the time being.

Returning home, pulling onto the uneven tracks of the driveway which were distorted by the roots of the massive White Oak nearby, my head unusually rocked as a result of extreme exhaustion. I went inside, ignoring the daily rituals of checking the mail, listening to phone messages and training Cody, my Chocolate Lab. I undressed, hung my suit and tie neatly on the clothes valet and then collapsed into bed. My prayer was abbreviated that night: “God, please give me the strength to do Your will. Amen.”

The alarm seemingly sounded as soon as I closed my weary eyelids. For an incredibly wonderful moment I was my old optimistic loving-the-morning self; then reality crashed the party. I thought to myself, how do I do this? I went through the motions of getting ready. I felt so empty, a shell of the man I was just the day before. I already missed the person I was before the death sentence was handed down. I began to practice the façade with my wife that I was “OK,” the same old DJ. I had hopes I could successfully carry off this masquerade when I arrived at work. I was struggling with everything. Why bother? This was such a contradiction to the very fiber of my being. I had never experienced this emotion of apathy. I was always passionate in everything I did-my emotions, my actions, my life. As a child, giving up was not an option with my parents.

I drove to work not looking forward to the deceit I would portray. I went directly to my boss’s office and asked if I could have a few minutes of his time. Gene Ross has a gentle soul. I closed the door, sat down and with reluctance began to speak. “Gene, I have ALS. The neurologist said I have three to five years.” He expressed his sympathies and began to discuss how to reduce my workload as well as travel requirements. Gene caught me completely off guard with his suggestions. I had not given consideration to what his response might be, but I found myself angered by any reduction of responsibility. I knew Gene was going out of his way to do what was best for my longevity, but I was not ready to start throttling back on my career or my life. I told him I would like to continue as long as possible without cutting back and I will let him know if it becomes too much. I also requested that Gene keep my diagnosis confidential.

I did not exhibit any obvious ALS manifestations at the time, so my masquerade was an easy act in front of my colleagues. However, I was tormented internally with my lack of honesty when the few that were aware of the previous day’s appointment asked of the outcome. I had a very close friend I worked with at Domino’s Pizza. Mark and I went back to our days at the University of Georgia. I successfully avoided Mark that day. I was not emotionally strong enough to break the bad news to my buddy.

I left the office a few minutes past four. I had to get away. Even though I am a gregarious people person I have always cherished my solitude. I feel most at home when in nature alone. I drove to the Chattahoochee and took a walk to find myself once again. I walked several miles upstream through the woods on the well-worn footpath that fishermen had blazed. My wingtips were muddy and my pants were covered from the knees down with green beggar lice eager to hitch a ride when I went to the river’s edge and skipped a few flat stones. One, two, three, four, five skips, a good one.

I sat on a rock enjoying the water-cooled breeze blowing across my face. The sun shimmered on each ripple in the tail waters of a rapid. I was at home. I thought about the last twenty-four hours and despised not feeling like my usual self. Pondering my options I knew I could continue to feel sorry for myself and give up, or live the life I had remaining to the fullest. I decided to live.

After making that fateful decision I immediately noticed the subtle rise of a trout’s nose in the shade of the bank’s foliage. My mind raced to match the hatch; a #18 Elk Hair Caddis should work. I smiled while I caught myself thinking about catching a trout, rather than the despair brought on by ALS. I knew the façade was over. I was going to be okay. Walking back I felt like the weight of the world had been lifted off of my shoulders. I certainly had no idea of the obstacles and challenges in store for me, but I had decided to live and I cockishly thought, bring it on damn disease. I was back.

As I drove home, none of the questions created by this new way of life had been miraculously answered, but I was prepared to face this disease one day at a time. I am certain if I had a glimpse of the future at that time my optimism would have been a little less manic. The week progressed quite normally. However, I was unsure how to live my life. I saw no incentive to make future plans more than a few weeks out. I really struggled with this because I was just beginning to realize my hopes and dreams. So much of the life I intended to live existed in the future. Everything would now revolve around this diagnosis; all of my decisions influenced were based upon it. I felt a loss of who I was and feared ALS would become my identity.

Within a week of that hellish day at the Emory Clinic, my wife had an OBGYN appointment. I was getting back into the swing of concentrating on my work and logging long hours. I went home that day and received the news that my wife was pregnant. Our excitement was sadly tempered. I hurt for my wife as well as myself. How could this possibly happen now?

The one thing I desired most in life was to be a father. I wanted a large family. I had so much I wanted to teach and share with my children. If the doctor is correct I will not even be a memory in my child’s life, I thought. I was so angry with the Lord. I questioned His wisdom; why NOW? I hurt for our unborn child.

I labored with this bittersweet miracle of life and my anger with God for days. I needed time to sort it all out. I had never been angry with God in my life, not even with the diagnosis days earlier. I could not come to terms with the timing of the events during that week. It was bad enough I was going to be a widow-maker, but a widow with a newborn was something I could not accept.

At the time of my diagnosis there were no drug therapies in place to prolong life expectancy for ALS sufferers, and to date a cure remains allusive. I knew the solution to this dilemma resided within me. I decided ALS was not going to take my life. I had a child to rear. The fall of 2007 marks twenty years since ALS symptoms first appeared.

After this decision my excitement and anticipation of the birth of our child fully blossomed as any expectant father experiences. I loved reading all of the pregnancy books and determining the development of our miracle each month. I would escort my wife to her OBGYN appointments when I was in town. The first ultrasound was absolutely amazing to me. I had no idea how I was going to achieve the impossible, but after seeing our child I was certain I would see this precious gift mature to adulthood.

As the days passed my confidence to overcome this mountain of a challenge began to grow as did my embarrassment over my misdirected anger towards God. I had not been fully humbled yet, but that was soon to come.

My wife’s pregnancy progressed normally. The excitement rapidly increased within me along with the girth of my partner’s stomach. My concern that I could defy the odds of ALS also increased. I lived in denial for the first few years of this disabling journey. I operated on a need-to-know basis. I only wanted knowledge regarding this hideous disease if it affected me at the present time. I was only experiencing minor weakness in my left hand and arm; I certainly was able to live with that. The neurologist had told me all I cared to know about ALS that afternoon.

The ALS association of Georgia was in its infancy when I was diagnosed. The chapter was founded by a couple that had lost a mother/mother-in-law to the disease. That was the typical formation of many chapters around the country; lay people attempting to make something positive evolve out of this senseless affliction. My wife was the complete opposite of me and consumed all of the information she could locate on ALS. She discovered the Georgia chapter hosted monthly support group meetings and asked me to attend with her. I finally agreed, although I had immense reservations. I watched the clock all day as the witching hour prematurely arrived. The meeting was well attended and fortunately Atlanta traffic made us tardy for the meet and greet. There were several individuals attending in various stages of progression, from walkers to wheelchairs, some disability to total devastation. Before the meeting concluded I had all of the reality I could digest for one evening and told my wife I needed to leave. I did not return until years later.

My office soon became the nursery in our small bungalow. I happily relinquished my domain and moved the desk to the basement. We wanted to be surprised on the birthday of our child so we decorated the nursery in light pinks and blues. In the evenings I often would go in there to sit in the rocking chair. While rocking I would contemplate what kind of father I would be and for how long. I was so emotionally torn as I wanted to let my imagination explore all the possibilities of fatherhood including a wealth of hopes and dreams I had for my child; the chilling tempering of reality could never be denied from my consciousness for long. This was the first time in my life I was faced with a situation where I did not possess the resolution within me. I was humbled. That was the beginning of a much too slow journey of maturation with the realization that testosterone alone solves very little. I had to completely depend on my faith.

The holiday season soon approached, which was my favorite time of year. Christmas was so exciting and filled with enormous anticipation of our own imminent birth. The New Year arrived ringing in the euphoric gluttony of college bowl games. On Monday January 2, 1989, Auburn University played Florida State University in the Sugar Bowl. My wife was not feeling well that day, complaining of a back ache. Because a c-section had been scheduled I failed to read the chapters on labor in the pregnancy books; if I had, my ignorance would have been anointed with the knowledge that my wife was experiencing back labor. The game was a close defensive battle when FSU attempted a field goal late in the third quarter. My concentration on the impending kick was interrupted by a frantic, “David, we have to go to the hospital now!” My wife, unbeknownst to me, was hoping her contractions would cease, because her least favorite doctor in the OBGYN group was on call that night. Unfortunately the contractions did not subside and were now just a few minutes apart. I was not sure if I should get my catcher’s mitt or the car keys.

Hanging onto the front door I was hoping to see the kick when my ears rang with a reverberating “DAVID!” I tossed the TV remote on the couch and helped my soon not-to-be pregnant wife into the car. I started the engine and began to back out, so excited to not be cheated out of the mad dash to the hospital that a scheduled delivery avoids when she screamed “WATCH OUT!” In my enthused oblivion I was backing into the path of an oncoming car on our normally quiet street-so much for the mad dash.

We arrived safely at the hospital without further incident and I rolled my wife into the maternity center. The moon must have been full or all of the expectant mothers in Dekalb County conspired to interrupt their husband’s football viewing bliss, but it was standing room only in the center. The medical staff must know the look in a woman’s eyes that indicates seriousness when she says “I’m having my baby.” The nurse immediately checked the dilation and stated “you’re having this baby now!”

We went into pre-op and the nurses disappeared. The anesthesiologist entered the room to insert the epidural and asked me where everyone was; I shrugged my shoulders. He said “you will have to assist me or your wife is going to hate you forever” with a wry grin across his face. So I did.

I dressed for the OR and the nurses reappeared to prep my wife. Things began to move in fast forward. Soon I witnessed our beautiful daughter’s head pop out as she loudly announced her very early morning arrival. I held my precious gift from God and reflected that I had won the first battle in the ALS war. Nine months had passed since the diagnosis and I was alive; most importantly I was holding my reason for living.

I gently lowered Hannah so my wife could see our marvel, then I unenthusiastically surrendered my daughter to the nurse. Hannah was taken to the nursery and I made certain my wife was going to be okay; I then floated out of the OR to call family and in-laws.

I noticed in the newspaper the next morning that FSU made the field goal and won the Sugar Bowl 13-7. It was a new day and I was more determined than ever to beat this monster the doctors call ALS.

The next several months were almost “normal.” I absolutely cherished being a dad and savored every moment, even changing dirty diapers although it was difficult to discern from my facial expressions. Unfortunately, during this time Hannah had colic and it was nearly impossible to provide her comfort and relief even with prescribed medication. The attacks typically began thirty minutes prior to my arrival home from work. The new mother would be at her wits end by the time I crossed the threshold and took the infant handoff. I felt bad for both mother and child. I have no doubt that the solution that came to me was divinely inspired from the desperate prayers of neophyte parents. I would place our baby daughter’s little bottom in my large hand and the other hand across her chest with extended fingers for head support. With this unorthodox clutch I began to briskly bounce Hannah on my knee. After a few minutes of this homemade colic remedy the heart wrenching pleas for relief would delightfully discontinue. I loathed my baby’s excruciating discomfort, but I was overjoyed with the provided deliverance. I reveled in my success. I attempted to keep my thoughts in the magnificent present, but I could feel my days of fulfilling physical fatherly responsibilities were numbered.

Financial concerns demanded my focus on the future. At the time of the diagnosis my employer did not provide long term disability insurance. Remembering the words of the neurologist I knew the demands of my job and the progression of the disease was on a collision course. The train wreck was soon to come.

I needed an assured income stream and a very understanding employer. I had been a successful entrepreneur as a child with nothing at risk. It was time to put those entrepreneurial skills to the test and perform without a net. I had a hunting buddy in Baton Rouge who made a living owning several dry cleaning stores. I picked his brain and absorbed all of his dry cleaning knowledge I could retain. I paid particular attention to the type of business situation I should purchase. It is said that luck occurs when preparation and opportunity meet. I am a firm believer in that philosophy, and it doesn’t hurt when fate smiles on you.

Several weeks into the search to secure my family’s financial future, the owner of
Mac-n-Jac hand laundry and dry cleaner decided to retire. This was one of Atlanta’s oldest and largest dry cleaners. It was the perfect opportunity.

Mac-n-Jac opened at the conclusion of WWII. By the early 1950s Atlanta’s elite was being serviced by a fleet of panel delivery trucks. The late sixties and early seventies witnessed the flight to suburbia; Mac-n-Jac declined accordingly. The mid-eighties arrived and inner-city renewal was in full swing. Young urban professionals were taking over the city. The timing was ideal.

I purchased the business with a financial partner and everything seemed to be falling into place. The hours logged were in excess of seventy a week, but there were perks. Fabulous southern fried chicken lunches at Mary Mac’s Tea Room down Ponce de Leon a few blocks away always abbreviated the day.

Mac-n-Jac patrons were excited by the improvements in service and the rejuvenation of a tired bellwether. Sales increased. The oppressive Georgia summer humidity made the brow bead and working in the plant quickly burned off all of Mary Mac’s calories. I was shedding excess baggage put on by a fast food diet while traveling in my former occupation. I was looking slim and trim.

A steep incline adjacent to the building led to the employee parking lot. I returned from an errand that June, parked the truck and speedily began the decent down the driveway when my left leg collapsed under the pressure of the decline. I rolled several times depositing flesh on the hot asphalt. This was my first battle with gravity; many more painful encounters were in store for me.

While I had not busted the knees out of my pants since childhood, the devastation was much deeper than skinned knees and elbows. The steam-operated equipment in the plant was nearly as old as Mac-n-Jac’s origin and required constant babying. My father and I often applied the tender-loving care to the fatigued machines. The deficit in my left arm required compensation in order to perform the heavy tasks. The weakness did not weigh heavy on my mind, it was just one arm, but the realization the monster was spreading made me fear for my life.

The walk down the driveway became measured and soon had to be eliminated. My passion for running became the first casualty to move into the realm of memories. The slim-and-trim look was short lived as muscle wasting became obvious to familiar eyes. The long hours and physical demands on my weakening body accelerated the paralysis.

Acknowledging my degeneration I knew I had to fish Alaska one last time. A trip was hastily arranged with a long-time fishing buddy living in Anchorage. My friendship with Ed developed through my father when he was training Ed as an air traffic controller in the early 70s. They became instant friends as they shared kindred spirits growing up in the foothills of the Appalachian Mountains, Ed in north, Georgia and my father in eastern Kentucky. The fast friends began a tradition of fishing Georgia’s opening week of trout season. I was not quite strong enough to wade the swift creek currents at the beginning of this custom, but that did nothing to dampen my ambition to tag along.

Upon my father’s return he would patiently endure my extensive interrogation as I hung on every word. I had follow-up questions to every high point of their adventure which ensured my comprehension of the smallest detail. The movie “Jeremiah Johnson” starring Robert Redford appeared in theaters when I was eleven. That solidified my desire to become a mountain man and the best place to begin training was fishing with my Dad and Ed.

I was baptized when I was twelve on a weekend trip. It was magical, fulfilling all of a boy’s expectations. Prior to our departure my father bought us matching Johnson Century reels mounted on Carolina-blue Garcia rods. I was so proud of my new fish slayer and ready to retire my well used Zebco 202. Included in his purchase were knee high rubber boots rather than hip waders, my father’s cautious attempt to limit the depth of my adventurous spirit. It stung with disappointment when I saw the boots, but my enthusiasm quickly returned and water-filled boots were the norm for the weekend. I could not wait for the dismissal bell to ring that Friday and to shed my parochial school uniform.

We fished places with forbidden names like Penitentiary Gorge and Bear Branch. The state did not stock these streams with hatchery trout; there was more fishing than catching. The mountain mornings still retained a nip of winter so the first boot overflow would send chills up my spine. The long day of fishing would conclude with warming bowls of my father’s beef stew. A black bear molested our camp the second night as we listened from the safety of a covered pickup bed. I could not wait for sunrise to see my first bear track. More bear encounters would come later in my life of the grizzly persuasion.

The following year the state designated our favorite fishing holes a wilderness area, which meant no motorized vehicles were allowed beyond the boundaries. We planned another trip for my thirteenth birthday. My birthday gifts were a florescent orange four-man ridge tent and waders. We now had a several mile hike to access our preferred waters. I know this did not please my father or Ed, but nothing could have made the trip more exciting for me except what actually happened. Spring weather in Georgia always has the potential to be severe. Driving to the mountains we passed through a strong line of tornadic thunder storms. Thinking the cold front had passed and my Dad knowing I would rather forego the surprise of Christmas presents than a fishing or hunting trip we pressed on.

A light rain pelted the tender new leaves as we embarked on our hike. Heavy cloud cover made for a premature dusk. Inexperienced hikers as we were, our packs were burdensome. As darkness fell the pelting rain became a steady downpour. We quickly pitched the tent and settled in for the night. There was no opportunity for a hot meal, so it was Beanie Weenies, sardines and saltine crackers.

Soon the tent was constantly illuminated with an orange cast from the frequent lightning. Talking over the pounding drops, thunder and cracks of lightning was difficult. I attempted to sleep. Every half hour one of the men would inspect the creek level as the zippered door flapped violently in the wind. Our camp was nestled between two mountains. Ed and my father were sitting up when I heard the first of three jet planes buzz the mountain tops. The long awaited dawn eventually broke. The creek was out of its banks, angry and turbid so we packed out our water-logged encampment.

As we ascended on the trek out it became evident to me that the jets I heard were tornadoes. My father and Ed were well aware of the tornadoes that night and battled with the dilemma of a rising creek and twisters above. Arriving at the truck we met two forest rangers who were organizing a search and rescue or recovery of us. We loaded our gear in the truck and headed south. Driving around the downed trees the forest service had yet to clear, we made slow progress until we reached civilization. The last residence we passed the previous day was now a debris field spread across a pasture. Conversation was constrained on the drive home and the events of that night were not openly discussed until years later. I was anxious to return.

In the late seventies Ed transferred to the Anchorage tower. I hated to lose our fishing buddy, but what a spectacular place to visit, and we would. The summer before my second senior year at the University of Georgia, a college mate/trout fishing buddy fished Alaska that July. When Brad returned we grilled fresh salmon and I quizzed him on the land of the midnight sun much like I did my father years earlier. I was determined to make the trip sooner than later.

A year after graduation I went to work for PaineWebber as a stock broker. During my interview I informed my prospective boss I had a fishing trip planned a month out with my father to Alaska and I was going hell or high water. Not the best way to begin a working relationship, but Harry Upton was an outdoorsman with a son of his own and immediately related.

With the same excitement and anticipation of my first trout excursion, I found Ed and my father in the Anchorage airport. Ed lived in Eagle River. His home was surrounded by picturesque vistas. I was living the line in the John Denver song Rocky Mountain High, “Comin home to a place hed never been before.”

On our first outing we flew into an old lake bed outside of Palmer. Glacier progression destroyed the natural dam and drained the lake. As I strapped the fishing rods to the wing struts of the two Piper Cubs, I could see my shirt rise with each adrenaline-rich heartbeat. The lake bed was shrouded by a beautiful carpet of fuchsia Fireweed except for a narrow sand strip near the stream. We landed on the postage stamp of a runway as the big tundra tires and prop wash kicked up a dust cloud. We set up camp beside the Dolly Varden choked creek. Ed asked me where I put the rifle cartridges. In my excited haste I left the ammo in his garage. The only bear protection we had were two pistols and they were merely big enough to really piss a bear off. I felt bad that I was putting them in danger.

I was catching our dinner as soon as the old tornado-tested tent was pitched. The Dolly Varden trout were ravenous and attacked any bait presentation, including an empty gold hook, like a school of piranha. Dinner was grilled trout, grits and cornbread. Bourbon and a Swisher Sweet cigar provided some mosquito relief, although I didn’t inhale, and was all the relaxing I could manage after the meal. There were fish to catch. I was fishing at midnight still needing sunglasses when my father encouraged me to get some sleep.

Fortunately, the three of us fished that location without encountering bears. I was off the hook. We flew out, showered, repacked including ammunition and a float plane dropped us off at the head waters of a lake on the west side of Cook Inlet. Before taking off, the pilot asked if we had rifles as we may encounter a few bears. Because we were three large men in addition to the pilot in a Cessna 170 on floats, our gear was limited to remain under the max takeoff weight. Our food provisions included coffee, eggs, bacon, biscuits, a jar of Tang and a pack of reindeer hotdogs. We instructed the pilot to pick us up in four days. It was an incredible feeling watching the plane fly away and knowing our survival depended solely on us.

The scenery was magnificent. The Spruce-covered mountains jutted straight up out of the lake and created the shoreline. At the head waters was a small flat peninsula and we made camp there. After pitching our old florescent friend I was quickly wetting a line. The lake emptied into Cook Inlet. The Sockeye salmon were fresh out of the Gulf of Alaska and would make our drags scream with the sting of the hook. Twenty minutes had not passed when the first black bear attempted to reclaim his fishing privileges. The salmon were congregating in the shallows of the lake preparing to swim up the creek to spawn. Unfortunately the area was too small for man and bear to fish simultaneously. The black bears were like the pigeons in New Orleans’ Jackson Square, plentiful and persistent. Typically a shrill blast from a police whistle accompanied with waving arms would push them to a safe distance, but the most determined required a pistol round fired in the air.

The smell of fresh grilled salmon over Alder wood overwhelmed my senses. I had to satisfy the hunger pains I had been denying. I fished that evening until my arms ached so I finally retired for the night. I was not successful in falling asleep before my father and Ed began to snore. Charles Richter would have been impressed with the magnitude of their nasal-generated earthquake. Exhaustion eventually induced sleep. We were awakened several hours later by the sounds of splashing and growling and I looked out to see four juvenile grizzlies fishing feet away from the tent. I woke the buzz saws, they looked and soon the two were hard at work sawing logs. I was also tired of the show and fell asleep, but a little less soundly.

The days were filled with black bear encounters and the nights filled with grizzlies, but the fishing was tremendous. On the third day I noticed a bear track near camp that dwarfed my size twelve wader boot. I did not look forward to the evening. My upper body burned with lactic acid as I attempted to catch a Sockeye on nearly every cast. Sleep came easy that night.

Several hours into my slumber that night I woke to the sounds of our evening visitors; too sore and tired I did not rise to look. Minutes later the corner of the tent began to shake. I eased out of the sleeping bag on hands and knees slowly pulling down the window fly-all I could see was brown. I was nose to nose, well perhaps twelve inches, from a massive grizzly. I did what every rugged outdoorsman does-I screamed. It was more like the sound one makes when startled, and it did not impress my friend. I woke Ed and my father. We all trained firearms on the bear for several tense minutes when the availability of salmon persuaded the bruin to move on. It seemed like an eternity before the grizzly departed, but in those neck-hair-raising moments I have never felt more alive in my life.

Word of the Sockeye run was out. The next day the lake looked like O’Hare International and float planes were as thick as Alaskan mosquitoes. Combat fishing. It was time to leave. Our pilot asked if we saw any bears, and I said just a few. Thirty-six hours later I was standing on Wall Street.

I had the opportunity to fish Alaska an additional time before I said goodbye to God’s in 1989. On the farewell trip I tried to keep my thoughts in the present. Every tight line was savored and fully appreciated.

Salmon fishing is wonderful, but a trout on a fly rod is my passion. My father and Ed share the same sentiments. The Rainbow trout followed the spawning salmon upstream, gorging themselves on the protein-rich roe. To reach the Rainbows required a two mile hike through the wilderness. We started out early the next morning. I quickly became very familiar with Alaska’s terra firma. I fell frequently and discovered how far the disease had progressed. I know this was difficult for my father to witness although a smile never left my face; I was determined to reach the trout.

I was first to catch a fish, a giant Rainbow. There was no way I could turn the fish with the light tippet on the terminal end of my line, so I had to follow this hog downstream. The moss-covered rocks were slicker than a minnow’s tail. The trout was not tiring. Twenty yards downstream a huge tree laid across the banks, too tall to climb over and eighteen inches of clearance to the swift water below. Without thinking I was under the tree with cat-like agility, amazingly still dry. I landed the largest Rainbow of my life and reflected in astonishment. Did I really run down fifty yards of slick rock rapids and under that tree?

We concluded our day fishing that section of stream, catching several trout ranging in size from 21 to 27 inches. I watched my father and Ed fish, thinking about all the history we have shared and knew God blessed this incredible day.

Returning home I was again faced with an employment decision. I was running a race that was impossible to win. I regretfully informed my partner that we needed to sell the business. Unaware of Lou Gehrig’s infamous words, I told my partner I was the luckiest guy in the world. Fate smiled twice. Mac-n-Jac was sold for twice the purchase price six months later.

I had maintained a friendship with the southeast director of Domino’s because of an affection for hunting, sports and cold beers. Bob had a burgeoning interest in hunting and I was pleased to share the outdoor experience with another friend. We discussed my health, future and return to Domino’s. The latter intrigued me knowing the company had improved their employee benefits including long-term disability insurance.

On the weekends I could be found in Evergreen Alabama if dove, deer or turkey seasons were open. I was a member of a fishing and hunting club in the Deep South that provided superb sporting opportunities and the formation of endearing friendships. I arranged a hunt with Bob and the vice president of Domino’s. Scouting an area for the VP to hunt I knew my reemployment chances would increase with a successful hunt. On the first day of hunting I secured my family’s financial future.

The concluding year of the 80s included a farewell tour of several cherished outdoor activities. Awareness of my failing physical capabilities was devastating. Hunting had been a part of my life since the earliest memories I possessed. I would follow my father quail hunting while properly attired in a very small duck-cotton hunting suit and carrying a trusty Daisy pop gun. The barrel would be clogged with Georgia-red clay. After recovering from the excitement of the covey rise I would fire the dirt pattern and inquire to the deadliness of my accuracy. “Did I get one Dad?”

December of ’89 ushered in frigid record temperatures to the south. A duck hunting trip was planned with my friend in Baton Rouge. I met Butch in New York City; he too was newly hired by PaineWebber. Hearing a familiar southern drawl when he introduced himself to the other trainees I knew I had to meet this guy. Being two fish out of the water in the Big Apple, we quickly bonded and soon were spinning yarns. I discovered an appreciative ear for my Alaskan tales.

Driving to Alexandria Louisiana my temperature began to spike from a cold I told myself I wasn’t catching. A Goody’s powder and I was good-to-go upon my arrival. I met Butch and several of his hunting buddies. The hunting community is a universal fraternity and I was warmly welcomed. Darkness had fallen when we reached the duck camp, which was a typical raised Cajun cabin. Extreme temperatures, hot or cold, exacerbate ALS symptoms. The stairway leading to the warmth of the cabin was a challenge.

Rousting from a warm bed before dawn, the mercury struggled to rise above zero. We loaded our gear and braced ourselves for the boat ride to the blind. The howling wind from the night continued to blow white-capping the lake. The spray from the porpoising skiff instantly froze to our huddled backs. The bitter cold pushed the ducks south on the Mississippi flyway. Daybreak revealed an overcast sky full of birds. Raising the shotgun on the decoying fowl my left arm was limp as a noodle. The Pintails, Mallards and lightening swift Teal were unmolested by my errant shots. I knew my wing-shooting days were in the past.

The drive home was racked with sadness. Acceptance that my beloved life was changing was a reality I could no longer deny. I had hoped for more time. In a typical charge-ahead style I focused on my beautiful bundle of joy waiting for me to make her laugh hysterically. My excitement increased as the destination grew near.

Five to ten percent of ALS diagnoses are familiar; inherited. Researching my genealogy I was enormously relieved knowing our child would not be stricken with this wicked disease. Buoyed by this ray of hope my wife and I wanted Hannah to have a sibling. I wrestled with this decision and was not comfortable with any outcome. For Hannah to be alone later in life was not acceptable, but knowingly cheating our second child out of a father broke my heart. This fueled my determination to live.

The second pregnancy passed quickly. Possessing veteran experience and a weakening body excitement was guarded. An ultrasound to determine sex was not necessary-I knew God had blessed us with a son. A father should be overjoyed with this wisdom, but I was filled with despair. Dads are proud and protective of their daughters. I was handicapped not knowing what little girls might enjoy. Since a child I had many plans for my son, although now they were all in question.

Labor pains began. The dreaded physician had retired so information of the impending birth was forthcoming. I was still driving, yet I lacked the confidence to be behind the wheel for the hospital transport. Emotions conflicted during the commute. The butterflies dancing in my stomach was a familiar feeling, but I felt like half of a man; merely a spectator for this delivery, a detested role that would soon dominate my life. Our son arrived on a sweltering summer afternoon. With unsteady legs and unsure hands, I remained seated to admire my wonderful boy. A short prayer uttered, “Lord, please give me the strength to see my son grow up. Amen.”

With a full chest I would point out to equally prideful fathers peering in the nursery window, “That’s my son!” The broad smile masked the uncertainty and fear of what the future held.

Insufficient dexterity in my hands prematurely concluded all infant care requiring fine motor skills. The kitchen sink bubble baths I dearly loved giving Hannah that were serenaded with a constant chorus of laughter would not be an experience I shared with my son, nor combing his sparse fine hair, dressing his Michelin Man-like little body or diaper changes. My heart yearned to physically bond with David Hunter.

Returning to Domino’s brought greater responsibilities, a larger geographic area and more travel. Walking with foot drop was challenging and difficult for colleagues to ignore. “David, what’s wrong with your leg?” I would state that it was nothing and immediately change the subject. The falls became numerous. Reluctantly, I began to wear leg braces.

With deteriorating physical abilities, traveling became increasingly burdensome. One morning in Miami it was impossible to clothe my stickman figure. Never possessing an abundance of modesty I went into the hallway half dressed searching for the housekeeping staff. This evolved into a polished routine when checking into a hotel. I would explain my physical predicament and request assistance. Comfort with strangers dressing me came much easier than revealing my multiplying inadequacies to loved ones.

Returning from an exhausting trip on a late August night, the flight attendant lowered the hinged door on the Brasilia 120. Rising awkwardly in the vertically challenged cabin, I stiffly proceeded towards the exit in a Quasimodo shuffle. Grabbing the handrail I carefully secured the first two steps when the tumble to the tarmac initiated. With nothing seriously injured other than a bruised ego, I collected myself and sorely walked to baggage claim.

I headed for the truck after I gathered my luggage on the carousel. The humid summer night air reached saturation on the walkout pelting me with large raindrops. In an expedited fashion I threw the first bag in the cargo door. When I turned to retrieve the other I collapsed, striking my head on the parking deck. My weary limbs could not correct me. I felt a sense of panic laying there in the path of oncoming traffic. I thought of the mess I had placed myself into and began laughing a deep belly laugh. Watching the drops fall out of the darkness I knew my traveling days were over. Rolling to a prone position my suit absorbed the puddled rain; I rose summoning all of my strength with quivering arms.

The president of Domino’s was in the process of retiring when he relocated to Atlanta. I assisted him with the purchase of several metro pizza stores. My reward was a fishing trip to a private lake located on the grounds of Callaway Gardens. All the excitement I normally exuded on a fishing outing was present in spite of my physical deficits. Launching the boat I experienced two hard falls.

The following day the president called me in his office and asked me to close the door. Mike and I had grown fairly close. He was aware I was battling a terminal disease. As the doorknob latched I heard, “Man you need to chill!” An explanation was not required; I knew exactly what he meant. I saw the look in his eyes when I fell. He continued, “Don’t waste the time you have remaining working.” I knew he was right, but I desperately wanted to hold on to any remnants of my life before ALS. I tied up a few loose ends that week and unlike my first departure, I unceremoniously left to fight this monster.

6 comments on “How this seated journey began.
  1. catheribar says:

    David Jayne: I am in awe of your story…..You are an amazing man. I look forward to reading more. Catherine Sketo Bartlett

  2. Amy Earp says:

    David, I never knew your story. Thank you for blogging this, and I too am looking forward to reading the continuation of your story. God bless you!!

  3. Dean says:

    DavidI just read the first post as I do most thing bassackwards. You are incredible and your sharing ofyour thoughts is inspiring to all.Never give up…See you soon..Dean

  4. careysue says:

    I feel out of breathe…wow! You're an amazing man David Jayne.

  5. kimmyshops says:

    You are an inspiration to all of us..My thoughts are with you my Dear..My dear friend Carey sent me to you..friends since high school

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