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  • My father was diagnosed with ALS in 1979, and Amyotrophic Lateral Sclerosis was rare then. We lived in Eugene, Oregon on a street full of working families. My dad was adamant about not wanting anyone from work to see him while he was sick. At the beginning of his illness he held on to the belief that he would one day return to work and be well, but with the diagnosis, death set in. He only lived eighteen months after he was diagnosed and he went from a man of strength to frailty. Mom and I were helpless to stop his decline or ease his pain.

    Dad had been a tough guy and was ashamed of his small frame and tremendous weight loss. He didn’t want his sister or brother to see him gradually disappearing on the hospital bed we’d set up in the living room. His diminished strength and the toll the disease was taking on his failing body were dramatic. For nine months, his buddies kept calling. Dad always shook his head and Mom always told the caller, “He’s not up to a visit right now, but thanks for calling. Maybe in a few weeks.”
    * * *

    One blazing summer afternoon when he was not quite fully bed-ridden, some surprise visitors, Dad’s coworkers, came to the house to bring us five cords of wood for the winter. From the hospital bed set up in the corner of the living room, my father turned his head when he heard the roar of an engine. Gears shifted into reverse as a truck backed all the way into our long driveway. Booming, deep voices echoed off the front of the house. There were greetings, muffled words, and curious sounds. Soon, logs and chunks of wood started hitting the driveway as the dump truck’s hydraulic flatbed tilted and its contents crashed and splintered onto cement.

    I ran to the window and peered out through our kitchen curtains to see what all the commotion was about. Dad’s vacant eyes grew large but he needed my mom’s help to sit up. He looked for the walker he had come to rely on. The disease had begun twelve months earlier with muscle weakness and stiffness. These were early symptoms of the inevitable progression of wasting and deterioration. The paralysis was yet to come. Now the muscles of his limbs and trunk as well as those that controlled vital functions like his speech, swallowing and breathing, were leaving him a little bit each day.

    “Lou Gehrig must have had bedsores, too,” he said one day with what sounded like an entire package of cotton balls in his mouth. I watched as Mom struggled to move Dad. I wanted to help but Mom needed me to do other chores like fix meals, do laundry, clean and sit with Dad for an hour or so every day to give her a brief break.

    My mom helped him off the bed, pulling the handmade tan velour robe she’d made over a year ago over his bony shoulders. The robe hung on his thin, frail body. He winced a little, murmured something to himself and slowly inched forward, grasping the walker for support.
    * * *

    It was July and during the summer I was expected to take on more of Dad’s care since I wasn’t in school. But I finally told Mom I was overwhelmed with some of Dad’s personal care needs. I just couldn’t help him go to the bathroom. Mom decided it was time to take a leave of absence from her job as a surgical nurse at Sacred Heart Hospital so she could care for Dad full-time.

    Mom had moved many patients over the years, but as a surgical nurse she had assistants who prepped and performed the heavy lifting. Putting her emotions aside, Mom took Dad to the bathroom, bathed and dressed him in under an hour. Mom was efficient even throughout Dad’s increasing weakness. I watched her put on an imaginary nurse’s uniform and go to work. She somehow separated what needed to be done from the fact that her patient was her beloved husband of twenty-five years.

    Mom’s friend Betty, from nursing school, was the first person to tell my mom what she thought was wrong with my dad. Several doctors were still running tests for Multiple Sclerosis when Betty called my mother. Betty loved my mom and had searched the latest medical journals. She matched up the list of symptoms with a diagnosis. That’s when Mom knew her husband was dying, though she didn’t let on how dire the situation was to me.

    In the thirty-two years he gave to Southern Pacific Railroad, Dad hadn’t stayed home a single day, not even for a serious flu. The handwritten log he kept in a grimy three-inch spiral notebook contained the serial numbers of each of the cars and engines he’d worked on. He prided himself on being able to change brake shoes faster than any other union mechanic. Roy Mitchel Reed, Jr. had been strong and stubborn. He was still stubborn. His 5’6” Irish frame had been packed with strength from years of gripping pneumatic torque wrenches and various industrial-size tools of his trade. He had black hair and intense hazel eyes. Just one look and you could tell he was “Black Irish” with a fiery temper as dark and brooding as thick Guinness Stout.

    One summer Dad took up a new hobby: woodworking. I remember sitting in the garage watching him work on his latest project. He became so angry that he couldn’t find a particular screwdriver that he slammed his toolbox on the cement floor. Tools went flying in every direction. Dad wasn’t someone you wanted to cross when he was mad. I learned to keep a safe distance from Dad’s woodworking bench. He may have had a short fuse but inside he had a soft heart and he made many gifts for Mom and me. One of our last Christmases together he gave us both wooden jewelry boxes with small, nesting trays inside.

    Wood was important to my father. For years he tended the wood stove to heat the house and on weekends I’d hear his saw and router making something for my mother, a napkin holder or a key ring. I think he enjoyed working with his hands. His hands on the wood were a comfort the way gardening and getting my hands dirty makes me feel connected to something bigger than myself.

    Two cars honked as they drove by our house and parked in the blazing noonday sun. Dad, up now, slowly approached the front doorway and latched storm door. He trembled and sagged and needed help to lift the small handle and open the door. Mom and I tried to reach towards him but Dad waved us off like a drunkard his movements wild and out of control. He wanted to do it himself. Two men with axes were splitting wood. Their sledgehammers pounded wedges into huge pieces the size of a tree stump. Four men in t-shirts and jeans unloaded the last of the wood from the truck’s dump gate.

    From the look on Dad’s face, I could tell he knew each person. The realization of what they’d come to do was too much for him. I watched as a bearded man in a plaid shirt bounded up the driveway waving his silent chainsaw in the air. I felt my throat suddenly become very sore. I was holding back pride and sadness at the same time. It felt a movie scene I was watching in slow motion.

    At least a dozen guys swarmed our yard. A familiar car drove up. A large woman and a railroad dispatcher got out and carried a large red cooler to the front step. These men were from the Roundhouse – mechanics, machinists and coworkers from Dad’s swing shift. They arrived at our house at noon, a couple hours before work, to converge on our driveway. Since Dad had the most seniority he was more than just a union brother. He was their fallen captain, their role model. He had taught many of them how to do their jobs.

    The street filled with cars and onlookers. People we barely knew came to participate in the impromptu gathering. The neighbors on either side of us and two from across the street came out of their houses with cookies, sandwiches, and Cokes. We’d lived on North Danebo Avenue since 1963 and the neighbors knew my dad and the rest of us.

    I stood in the open garage watching the activity buzz around me. A station wagon stopped in the middle of the street; the driver held out three pizza boxes. The activity heightened; wood was cracked, split, stacked. Broken chards of unseasoned hardwoods—maple, beech, ash and yellow birch—lay strewn. Kindling was stacked in crisscross patterns by the garage door.

    Dad swung open the storm door. He hesitated over the door jamb and stepped down, the cumbersome walker supporting his weight. His friend’s large, cracked, weathered hand grabbed Dad’s arm. Gene carefully guided him outside so he could sit on the front step. I recognized Gene; he’d been over to the house when I was much younger. Seeing him guide my dad made my father’s condition more of a reality. Strong, healthy men at my house seemed suddenly foreign.

    Over several months I’d grown accustomed to the sickness and my dad’s thin body. I watched Dad shaking uncontrollably; his legs were like flimsy, rubbery sausage links left in the pan hours after breakfast.

    The men gathered around him. Some squatted; a couple sat next to him on the cement step. The men stared at my Dad’s appearance and weakened state; they couldn’t help but fixate on his bony white legs, which shook as he fought to keep them still. Once proud and fierce, he was now emaciated and dissolving before their eyes. I watched, wanting to shrink inside as some of the men turned away and focused on the wood still left to split. The angry swinging of axes broke the tension. Twisted faces found relief within their angst. Even awkward laughter and joking helped to cut the unfairness of the situation.

    Part of his illness was the inability to control his emotions. Sometimes he’d cry for no apparent reason, or laugh when there was nothing funny. These emotional jags were disconcerting to me. I didn’t understand what was happening when he became so emotional. We’d be watching a baseball game and the national anthem would play and Dad would just laugh and laugh until he roared with hysteria. One time we were watching a baseball game and the umpire called the pitcher out. Instead of getting angry that his team had struck out, Dad laughed until his face grew red and his breath came in short gasps. I didn’t know what to do except laugh along. I laughed and shook my head uncomfortably, thinking that maybe teenagers didn’t understand adult humor.

    I came over to sit beside Dad on the front step while the men worked. The hot pavement burned my bare feet and I hopped awkwardly until I found shade near the flowering plum tree. We watched the motion and sweat. Tears welled up in Dad’s eyes as he tried to say a few words of gratitude but his throat seemed tight and sore. Mom came out through the kitchen door to watch what was going on, protectively looking over Dad from a distance and telling the men where the wood should be stacked.

    There was something painful about that afternoon; as wonderful as it was to have all these men come to the house, Mom and I had an unspoken understanding that we could handle this all on our own. She was a capable nurse; I was an athletic teenager. We didn’t need anyone to see Dad. I certainly didn’t want the nosey neighbors to see him in such a vulnerable state.

    “Thank you,” Dad said very slowly, directing his comments to his co-workers, trying to speak loudly and clearly so they could all hear and understand. There was a short lull in the work, a moment when the men paused and wiped their sweaty faces.

    The new foreman loudly announced, “You bragged to us so much about that damn wood stove of yours, Roy, that we decided to bring you five cords of wood for the winter. That should be enough to keep the fires burning for a while!”

    All Dad could do was nod in agreement as tears overflowed his eyes and dripped off his unshaven jaw line. The wood was piled almost the entire width of the driveway and was over ten feet tall. This was a mountain of work for one man or ten.

    Dad tried to stay outside a few more minutes, but I could see the exhaustion come in waves. He needed to lie down again and looked at me to help him up and into the house. We had developed a type of silent communication; all he had to do was look at me and I knew what he wanted. Water, my mom, the TV channel changed—the requests eventually came down to a look that Mom and I could usually decipher. Sometimes it took me a while to figure out what he wanted, and that frustrated both of us.

    Once down again in bed, tears floated under his eyelids, trembling muscles that he tried in vain to stabilize. His face looked pale and sad but his eyes showed a grateful relief. Every bit of his mind was still intact, and alert even though his body was disintegrating before us. Ravaged body, sharp mind.

    Just the year before he’d cut and stacked his own firewood in the shed he’d built behind the house. This year he needed help to care for himself and his family. There was comfort in knowing there were people in the world to help him, and logs enough to last the winter.

    It was obvious that Dad wouldn’t be able to stoke the fire, add a log to his woodstove or even re-start the fire if it went out; embers were all that were left of his strength. As the work continued outside, I sat with him in the quiet of the living room. Dad cried uncontrollably. He writhed as if he couldn’t bear the moment, turning his head left then right. I fluffed his pillows and propped him up a bit. The day’s events seemed to have both crushed him and touched a tender place. I wanted to comfort him but didn’t know how. I felt awkward and overwhelmed. Where was Mom? I started to hum a song to him to help him find a calm place so we couldn’t hear the wood being chopped. My own throat had tightened up, but I could still push out a melody. The words came to me clearly in my head; I couldn’t say them or sing them. It was a song Dad had sung to me when I was just a baby, so he knew the words by heart. He had probably sung it to me when I cried, so it seemed like a small way to show my feelings and comfort him when he needed it most.

    “You are my sunshine, my only sunshine.
    You make me happy when skies are grey.
    You’ll never know dear, how much I love you.
    Please don’t take my sunshine away.”

    Sleep overtook him as our Siamese cat huddled down in the cotton blankets. I wondered if Dad thought of the fire’s sweet burn, hot and crackling. Did he hope the firewood would burn up fast and he would not linger on, helpless in this bed? Unlike the firewood, he would not last through the winter.

    For my father: Roy Mitchel Reed, Jr.: Rest in Peace |10/25/26 - 7/15/81 |
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