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| Living With ALS |
My Hero – My Dad by Johnny O’Gorman
The last two years of my life have been all but easy: attending high school, working my hardest to make good grades, taking on the social stresses and peer pressures of adolescence, having my first job, learning how to manage my time, and worrying about almost every aspect of every day; only made more difficult by the fact that for the last two years I haven’t seen his calming face, heard his reassuring voice, or been able to talk one-on-one with him. His death was slow coming. We all knew he had only a few more short years to live when he was diagnosed with Amyotrophic Lateral Sclerosis, (also called Lou Gehrig’s disease) a rare muscle deteriorating disease, in the winter of my carefree sixth grade life. I took it lightly after church that Sunday, sitting at the kitchen table in my Sunday best, not knowing what to say or do when my father told me with an immense weight in his voice, “I have a disease with no cure.” So I did what any kid does when they don’t want to believe the truth: I put it in the back of my mind knowing that this couldn’t happen, not to me, not to my family. There was no way that my childhood would have to end prematurely, forcing me to feel the obscene reality of death. My father bravely soldiered on from that day with his family’s full support, as we took each heavy blow as hard as he did. Once the disease really progressed, my father’s waning health became ever more real to me, especially the first day I had to help him out of his wheel chair and onto the toilet. Most kids will never have to even think of doing something that seems so absurd, yet this became routine for me. I began to spend my afternoons helping my mother take care of my father, whether it was feeding him, helping carry him from his wheelchair into the bed, or helping him in the restroom. In ways I almost became the parent as he became the child, in that he relied on me physically to help him through the day, while I relied on him mentally and emotionally as he would tell me, “Shoulders back! Chest out!” Our last summer together was spent in his bedroom, watching important stock news and talking about a wide range of topics, from my future to how certain parts work in a car’s engine. I went into that sophomore year thinking it would be just like the last; I would continue to be his helper while completing my school-related responsibilities, but that November, things took a turn for the worse. He began to have bad day after bad day, mixed with a few good days, when “good” was defined by being able to breathe and eat without too much difficulty. His last day with us began well; he had a bath and woke up in high spirits, as he had been for most of the duration of his death sentence. I went to school not thinking anything could go wrong with such a good start that cool windy morning, but as I walked up to my house that afternoon after stepping off my school bus, I could feel a palpable presence that something was wrong. I opened the door with a smile only to be greeted with the solemn faces of my brother and sister. “Dad’s not doing well,” my sister breathed fighting back the tears welling in her eyes. I immediately went back to his bedroom and saw my hero in shambles, fighting with all he had just to breathe. “No John,” he hoarsely whispered, “I don’t want you to see me die.” It was then and there that everything that had been building inside of me those last few years finally exploded out of me like a supernova of all my bottled up emotions. I instantly found myself lost in tears. My last moment with my father was spent sobbing in a long embrace, with the final words, “I love you daddy.” From that day on I have pushed through my problems with my shoulders back, and my chest out with the same cheerful perseverance my father displayed through his sickness. Everything I am and know that I can achieve came from this brave man. He taught me to live my life to the best of my abilities, on full volume, never backing down when a challenge comes my way. I only hope that one day I can become even half the man he was. |
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