Giving ALS a Story

Feature article published in the Yellow Jacket Newspaper on Sept. 18, 2014

  More than likely, you’ve been exposed to the odd fad known as the Ice Bucket Challenge. What – you may ask – would entice millions of people all over the world (including LeBron James, Taylor Swift, Lady Gaga and all five members of One Direction) to film themselves being drenched in ice cold water? The most common motivation behind this madness has been to raise money for and awareness of Amyotrophic lateral sclerosis, or ALS. The shocking, gasping and utter confusion nearly every participant of the Ice Bucket Challenge elicited when the water hit their bodies is meant to resemble the feelings that overcome victims of ALS when they are diagnosed with this terrifying disease. I would like to put a face on this disease and help explain it by pulling from personal example.

My grandfather, Paul Grossweiler, died of ALS in 1992.

Paul Collage According to the stories my family still tells about him, my grandfather was an incredibly well-loved man. He had a contagious happiness and joy about him that affected anyone he came in contact with. His name is still brought up on a regular basis in my family, and I have never heard a bad word spoken about him. Through being a trustworthy and honest man of faith (as my grandma describes him) he built a legacy for himself that still resonates with people over 20 years after his death. Although my grandfather died before I was born, I feel a personal connection to him independent of my family’s memories of him. They talk about Paul so often that I feel like I know him myself. I have always been told that my grandfather and I would have gotten along especially well, because we had similar personalities and interests. However, it took several years for me to understand just how much I resemble him. I have a very close relationship with my grandmother, and when I was 14, I often spoke with her about my growing interest in photography. She laughed and said “Isn’t that funny? Your grandfather loved taking pictures too.” Paul 1She told me that although he worked as an insurance agent, he had always dreamed of becoming a photojournalist. At the time, I was unaware of what photojournalism was, so I asked her to elaborate. As she explained it to me, I thought “Hmm…that sounds exactly like what I want to do.” Now, 6 years later, I am pursuing a career in photojournalism. Since my passion for photography has grown, my grandma has shared with me several of Paul’s photo albums, one of which I now own. I have also inherited much of his photographic equipment, which is an honor to use. Several years after I began my journey as a photographer, I shared with my grandmother some poetry that I had written. After reading it she explained to me, much in the same way she had before, that Paul also wrote poetry. A few days later, she came to me with a collection of his poems entitled “Confessions of a 50 Year Old Teenager.” I immediately absorbed the poetry and felt connected to my grandfather on yet another level. I am excited to enter the world of journalism and document what I see all over the world. However, for some time, I have also loved the idea of teaching English Literature. And of course, just like the majority of the things I find important, Paul had pursued this in his own life as well. At 46 years of age, he began attending college at the University of Texas at San Antonio, majoring in English with plans to become an English teacher. My grandmother, who was always very supportive of her husband, went back to work for the first time since they were married to help him accomplish this dream. Paul loved learning and he was determined to get his degree. So determined, in fact, that he still attended college and finished his degree after being diagnosed with a terminal illness. My grandfather was a talker; he spoke to anyone and everyone. In the spring of 1986, my grandmother and a few close friends noticed that Paul was speaking unusually slowly and that his speech was slurred. After some urging from my grandma, Paul finally went to the doctor My family looked many places for a cure only to find a dead end at each possible solution. ALS is a disease that gradually deteriorates all of the muscles in one’s body. In 1988, Paul started having trouble walking. He had a few falls, requiring him to get a cane, and then a walker. In 1989 he was forced to use a wheelchair. By this point, his body was deteriorating quite rapidly. My grandma expressed her frustration with the disease, saying that once Paul learned how to adjust to one part of his body deteriorating, another would go. But it didn’t slow him down; he graduated from UTSA with an English degree in 1989. He still took photos and enjoyed being around people, but these activities became increasingly difficult. He got a computer which he used to help him speak and his wheelchairs became more advanced. But even the technology could not outrun the disease. Recalling her father’s illness, my mom explained that the hardest part about Paul having ALS was knowing that his mind and personality were still as sharp as ever, but his body would not allow him to show it. Paul 6_edited-1 “He was a real people-person who loved to run, write, encourage people and express his thoughts and feelings,” she said. “And the worst part about the disease was that he was trapped inside that body and he could no longer be himself.” Eventually, what killed my grandfather, and what kills most victims of ALS, was suffocation. As his muscles slowed down, it became very difficult for him to move any part of his body, including his chest and lungs. He had had trouble breathing for about a year prior to his death. My grandma remembers the last 6 months being especially painful. “Watching him deteriorate was physically, emotionally and financially exhausting,” she said. Paul died on Nov. 23, 1992 at the age of 53, two years before I was born. The truly amazing thing about my grandfather was the positivity he maintained throughout his entire life. One day while reminiscing about what a great man he was, my grandma recalled a conversation she had had with him in the early stages of the disease. He told her that he had started to feel sorry for himself and had begun to ask “Why me?” Then, in response, he asked another question: “Why not me?” ALS is a terrifying and excruciating illness. My grandfather lived with it for 7 years, longer than most do. Nonetheless, he enjoyed his life until the very end, living with the mentality that “it’s not over until it’s over.” My heart is heavy when I think about the way this amazing man died too young, and how I was never given a chance to know him. But what’s incredible is that he doesn’t even have to be on this planet to change my life. Because he lived his life so fully and loved the people around him so deeply in the time he was given, he has been able to continue inspiring, motivating and encouraging people more than two decades after his death. Of all the traits I have in common with Grandpa Paul, my hope is that I can share in even a small amount of his radiance: a light that could not be dimmed, even by a very painful death.