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One Year Later
It’s quite extraordinary to think about how one life event or circumstance can alter the course of one’s entire future. The paths and the roads that you took as the years have gone by are dictated by previous experiences and choices.
My father’s illness was certainly a life-changing event that turned my life in directions I never would have gone otherwise. His illness changed and impacted the entire family and all our futures. Of course, he was the one impacted the most. He was the one that had to endure pain, disability, loss, and unbelievable mental anguish. His wife and his children were there in that shadow of pain.
It’s been a year today since we buried my father. He no longer has to worry about not being able to breathe, eat, talk, or move.
Most of the memories of my father as a healthy man are black and white. He was a tall, dark, strong, and handsome man. He was intelligent and good at solving problems. He was firm but liked to have fun. He had a loud booming voice that was colored by a thick Texas accent. I remember him working, running, biking, mowing the lawn, planting trees, fixing cars, and performing home repairs and improvements. Sadly enough, I only have a handful of clear memories of my father from his pre-illness days.
One of these memories involved a family trip when I was about five or six years old. My sister, brother, and I were all swimming in a motel pool. My parents were sitting by the pool in their street clothes. I was never a good swimmer and spent a few years of childhood terrified of the water. I recall somehow inadvertently winding up in the deeper end of the pool, and I panicked and started to thrash around. Before I knew it my father had jumped in, shoes and socks included and was holding me in his arms. He lifted a breathless, frightened child out onto the side of the pool. I felt embarrassed for what I had done and put my father through, yet at the same time, I felt watched over and loved.
Years later as a teenager and young adult, I would rehash that memory in the darkness of my father’s illness. How I wished he would look out for me and save me again. I wanted him to take care of me. However, he was the one that most obviously needed to be taken care of. The roles somehow were reversed and understandably so. Yet even though I knew that my father’s disease was nobody’s fault and that it couldn’t have been avoided, I felt bitter and angry.
The disease had robbed me of my father and the thousands of “normal” childhood memories and experiences one makes with his or her father. I didn’t know who I was angry at. Sometimes it was with God, sometimes with my father, and most of the time, I was infuriated with myself. Perhaps I was not doing enough to help him. Maybe I wasn’t putting forth enough effort to get to know and talk to him. His illness was a great physical, mental, and spiritual trial for all of our family.
I do not remember exactly how I came to know about my father’s illness. When I was almost eight, my family moved from Texas to Arizona. I wasn’t even exactly sure why we had to move, and I certainly did not want to be uprooted. I never told anyone I was angry about moving. After all, what would the wishes and thoughts of an elementary school child matter? It was not too long after the move that life in my family became more strained. I knew something was wrong.
In 1987 when I was ten years old, my father was diagnosed with ALS. My father had actually been experiencing the signs and symptoms of ALS since about 1983. He noticed he began to have difficulty putting a key into the door or the ignition. For some reason, his coordination just wasn’t as good as it had been.
ALS can progress rapidly or slowly. In the case of my father, the disease moved in slowly, but with a vengeance. My father lost a little more strength and function as the months went by. He couldn’t run or play sports anymore. He had difficulty walking and maintaining his balance. He lost the dexterity in his hands. His speech began to become slurred. He finally had to stop working as a physical therapist when I was about ten years old.
I don’t remember being told that: “Your father has Lou Gehrig’s Disease”. I just remember the unspoken stress and pain that my parents were enduring. I remember my father locked in his bedroom crying uncontrollably. He didn’t think anyone could hear him, but I remember tiptoeing down the hall and listening outside the door. I was too afraid to open the door. I just wanted to run to him so I could comfort him. What would I say to him? What could his youngest child possibly offer him? Why was he crying? I know why now. He had received basically a death sentence. He was given only one to three years to live. He was a 50-year-old man with a wife and three school-age children. How would his family survive without him?
Life at home changed. We had just moved into our new house in the desert out in the western part of Tucson. Things seemed tense. Even a 10-year-old could sense this. Since my father could no longer work, my mother had to quit her job as a kindergarten teacher at the private school my sister and I attended. Private schools just did not pay enough money to get by now that my mother was the sole breadwinner. She got a job working as a teacher of learning-disabled children at a local public elementary school. It was hard for her. She had to deal with a lot more paperwork, headaches, troublesome parents, and unstable and challenging kids. She made more money, but the pay still was not commensurate with all the work and time she put into her job. She would get up at about three or four every morning so she could grade papers, do her lesson plans, and pay the bills. She would make our lunches, care for my father, take us to school, and then go to work. After school, she would go get groceries, run errands, make dinner, and put out the family fires.
My mother was the main caregiver; however, my siblings and I certainly pitched in to help care for our ill father. This could include cooking his meals, making his bed, putting on his socks and shoes, doing his laundry, and cleaning up in the bathroom after he painstakingly took a bath. It also meant answering my father’s requests for the remote control, a book, the newspaper, and a glass of water. I was the errand girl for my dad. By the time my sister and brother were in high school and driving, he would often pick me up from school. At this time, he could still drive, although driving was probably not the safest activity for him. We would then do errands or go to the store, and then pick up my mother from her school where she was teaching.
I remember being embarrassed to be seen with my father. People thought he was my grandfather because he was older than most of my classmates’ fathers. My dad wasn’t like the smiling, strapping thirtysomething fathers who came to their daughters’ parent-teacher conferences and Christmas plays. No. My father was a disabled fiftysomething man who rarely showed up to any school function because he couldn’t. He used a cane to walk and many times a person’s shoulder. He didn’t want to use a walker or wheelchair then, so when we went out in the community, he would grip my shoulder or neck and use me as support. It felt wrong. I was the child. He should be supporting me. At the time I didn’t realize how much he was supporting me in his own way.
I tried to learn how to be there for my father. I would catch my dad and help him up when he fell. Literally. ALS gradually impaired my father’s balance, coordination, and motor function. He had difficulty negotiating stairs, curbs, inclines, and ramps. He had a hard time controlling his momentum and couldn’t clear his feet very well when he walked. These factors resulted in several falls.
I remember one fall on one particular day after school when I was in fifth grade. My father told me to meet him at the church across the street and we would get in the car and go home. I went to a private Catholic grade school at the time, and the church was basically part of the school. I remember meeting my father inside the church, and then leaving, going down the steps from the entrance. He fell hard and could not get himself up. I tried to help him, but he was over six feet tall and maybe about 200 pounds at the time. He told me to run and go get help. Who would help me? There was no one around the church on a weekday afternoon. Thoughts of fear and embarrassment ran through my childish mind. What if he never got up? Would I have to admit to the good Samaritan that this man sprawled helplessly on the pavement was my father?
I ran through the parking lot but couldn’t find a soul to help. I ran back to my father who was lying there crumpled and clearly frustrated and hurt. Suddenly, I caught sight of a schoolmate a few years older than me. I accosted her and begged her for help. She took one look at my father and got a frightened look on her face. She began to scurry away and told me that she couldn’t help us. I cried and begged her again, but she left me there alone with my crippled father.
I don’t recall how my father eventually got up and how we made our way home that afternoon. That fall was just the beginning of many falls to come. I was often alone in the late afternoons with my father at home because my siblings would be at some sports practice and my mom would still be working. My father would fall. Sometimes I could help him up. Sometimes I would have to help drag him to a nearby piece of furniture so he could hoist himself up. My heart would break at the sight of my once strong father crumpled up on the linoleum floor quietly moaning in pain. At one time I had thought my father was invincible. However, he was dealing with a slow death that his family had to watch him go through. ALS usually takes its victims more quickly; however, for some reason, my father continued to battle the disease and lived years beyond the deadline that the neurologists told him. The prolongation of his life was both a blessing and a curse for my family. It was a blessing in the sense that my mother still had her husband and us children still had our father to hang on to. It was a curse in the sense that we had to watch him deteriorate slowly before our eyes.
We watched the illness take over all facets of his life and our lives. The years went on including graduations, jobs, marriages, births, illnesses, deaths, successes, and failures. His health slowly declined amidst the background of aging. My dad kept running the race, but eventually, the race came to an end and my dad competed well. My dad passed away on January 24, 2022, at age 85 leaving his family to remember his legacy. I miss him every day but I know he is running in fields forever.
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