Watching My Dad Die: Three to Five Years

Part 1: Diagnosis

In August of 2014, a movement called the "ALS Ice Bucket Challenge" took over the internet. I was eighteen years old. This challenge, an attempt to raise money and awareness for ALS disease (Amyotrophic Lateral Sclerosis) throughout all of social media, required someone to pour a bucket of ice cold water over the participant's head, film the whole process, and then proceed to upload the video to multiple social media platforms. Hundreds of people participate in this challenge, including movie stars and even the President of the United States himself. This challenge ended up raising hundreds of thousands of dollars toward the cure of the deadly, incurable, neurological disease that is ALS.

I once took pride in calling myself a Youtuber, even though my videos were uploaded sporadically and often lacked any good content. With no knowledge of ALS prior to the uprising of the Ice Bucket Challenge, I was completely baffled by the effect of this awful disease. With the slow deterioration of muscle mass and vital functions, it takes lives in such a way that leaves the patient and family in a complete hopeless state. My brother Kurt and I decide to participate in the challenge, uploading our video to Youtube. I cannot tell you Kurt's exact motive for making this video, but I can tell you mine was mostly for views, another chance to join in on a popular trend. As I have grown older, I see that when something is not affecting one's life directly, it is very easy to believe it is not one's business. The desire to walk in another person's shoes becomes less and less, as people become swallowed up by the craziness of their own lives, trying so very hard to stay afloat in a world that is made out of nothing but tidal waves.

In January of 2015, my dad asked me to help him button one of the small buttons of the white dress shirt he wore to church. "My hands just don't seem to want to work today," he said, as I put the tiny collar button through the small hole. Such a simple task for me, but I make it a big deal. I am more concerned about the fact he has interrupted my studying again, without wondering why. Why don't his hands work today? My father was a distant person to me, as I never had a bond with with. He lived in our house, but he felt as though he was a boarder. He came home, would eat, and stay in his room. I used to blame the lack of our relationship on how much he was gone at work, saving lives as a firefighter. Now I realize it was so much more than that. Even though the days he was home with us, he was never present. He was an empty body that watched television in his room, and I only saw him during dinnertime, or when he'd come down the stairs to leave the house. I only begin to understand the pressure he must have been under to provide for his family of five, however, I believe now that I would have given up the roof over my head if that meant I was able to have a meaningful relationship with my father. Although my mom and I were extremely close, I believe that every girl needs a father figure. For fathers can be an amazing example of how a young girl should be treated later in her dating life. Seeing how my dad was consistently absent for my life, only made me hope that the saying "woman marry men like their fathers" didn't apply to me. As I concentrated on opening up myself to new parts of the world, through school and social aspects, I completely close myself off to my family, blind to the changes that were taking my father by storm. One night, something strange happened. When my dad asked me to watch a movie with him, I was extremely caught off guard, I told him of my busy night ahead of me, as I was made uncomfortable by the effort he was suddenly trying to make towards our relationship. Him wanting to spend time with me was something so out of the ordinary that I didn't quite know how to react.

Three months later my mother tells me about a doctor's appointment she had gone to with my dad. Originally he made that appointment because he an unexplainable twenty-pound weight loss and an issue with his foot, but late my mom had told me it wasn't as simple as they originally thought. "I wish you could have seen the doctor's face-" she began, distraught. I felt a bottomless pain in my heart as she went into more detail. "He said he wouldn't tell us what he thinks it is... until he does more tests." I was told to pray that it doesn't end up to be anything serious.

After my father's second doctor's appointment, my parents entered the house silently as I sat in the kitchen. The sudden presence was dark and overwhelms me once the front door opens and shuts. The quietness told me that something was very wrong. When my mom came around the corner, she wiped her eyes with a tissue that is already soaked with tears. My father followed behind her, pausing in his tracks when he saw me. "What happened?" I said, as I could not take the suspense. My father looked at my mom for support when he said, calmly: "I have what's called Lou Gehrig's disease. You might have heard of it as ALS. It's a disease of the nervous system... he gave me 3-5 years." I sit motionless in my chair, unable to speak. Unable to breathe. I ache in the longing of wanting to comfort him, but not knowing how to. Tears rolled down my face, but I did not cry as I mistakenly believe that will somehow make my father feel better. To this day, this moment often seems like it is something I watched, rather than something witnessed. Nothing prepares us for moments like that; we never actually believe it will happen to us.

END OF PART 1