Steve Westphal

By Matt Westphal

Pain began  to fill my ears the first time I heard the words: Amyotrophic Lateral Sclerosis.

Amyotrophic Lateral Sclerosis is the diagnosis my father received in December of 2002. It was the seventh of December, also Pearl Harbor day. On this day, a different kind of bomb was dropped on our family. The bomb  did not cause immediate destruction and misery, but the bomb slowly ripped us into pieces. As I later  found out,  the deteriorating aspect of the  disease would also slowly deteriorate my hope and optimism. I knew an experience such as this would not likely end well, but I was hopeful that we as a family could dig deep and fight through.

Little did I know at the time, my loved ones and I were in for one of the bumpiest rides of our lives. My whole life was changing around me like the leaves of the fall. Within months, nurses and medical equipment flooded my house. My once very peaceful and loving house suddenly became a hospital to accompany my bedridden father. At such a young age, I could have never envisioned  how this chapter of my life would unfold. My mother had an immensely difficult time coping with the fact her husband of 20 plus years became paralyzed, and had a life expectancy of five to ten more years. Although I did not fully comprehend the entire situation at the time, it affected me in a plethora of ways. Everyday father and son activities became a thing of the past; no longer could I play catch with my father, or even go for a walk.  Little  activities such as these I previously took for granted, and now all my father and I could do was talk and reminisce around his bed or wheelchair. After a couple years of slowly becoming more and more paralyzed, the next big aspect of this disease to hit was his speech. He started losing his ability to communicate, and also breathing. Amyotrophic Lateral Sclerosis deteriorated my father more rapidly than anyone had anticipated, and soon the real hospital became his second home. He began to undergo major surgeries so that he could perform everyday actions such as breathing and even eating. The first time I ever laid eyes on him with a ventilator, and a feeding tube had to be the most disastrous day of my once normal life. On that day, I came to the realization that my father’s disease had
been defeating him. I cried for hours along with my brother and mother. From then on my family became a time-bomb, just waiting to explode.

Months had gone by and my parents decided to split. My father first moved in with his mom in Secaucus,  but eventually claimed our family’s summer home in Lavallette. With him living over an hour away and because of his disease I rarely saw him. When my brother and I would visit, there would never be alone time due to the constant flow of nurses checking on him. The nurses had to check his ventilator, and to take saliva out of his mouth through a suction tube. Therefore,  my father would not choke on his own spit. My father  communicated with us through a computer hooked up to his wheelchair, and he would simply bite on a button that was scrolling through the alphabet and commonly used words.  All of this hardship had not destroyed, but rather turned me into a strong, mature individual.

Seeing such an important person in my life slowly degenerate, had truly been a humbling experience. Throughout his struggles, he approached every obstacle with nothing other than optimism. In these last ten years, My father always attempted to be around and see me progress as a young man. He attends all of my basketball games and is a huge motivation for me. Most people in a sticky situation like the one presented before him, would have rolled over and given up. He on the other hand showed myself and his loved ones that anything is possible if you stay positive. Although my father experienced rough patches to say the least, he always taught me to never give up and persevere. If my father has fought with an incurable disease for over ten years, I can do anything if I just never give up.