Once you hear the words, “I've been diagnosed with ALS,” come out of a family member's mouth, you don't know how to respond. In the season of ice bucket challenges and donations to the cause, you merely just think of it as something that has no cure. When my grandmother was diagnosed in the summer of 2014, it was a learning process not only for me, but for the rest of my family on what this horrific illness truly entailed.
ALS, otherwise known as Lou Gehrig’s disease, stands for Amyotrophic Lateral Sclerosis. It's a nervous system disease that weakens muscles and impacts physical function. A person typically lives within one to five years after being diagnosed. It’s different for each person. However, the end is always the same. They gradually become paralyzed until it's impossible to breathe or swallow. The odds of getting it are about 1.5 in every 100,000 people.
About 5,600 people in the United States are diagnosed with ALS each year. While looking up these shocking chances of getting this disease, I thought to myself, "How could the sweetest person I know be diagnosed with something so dreadful and monstrous?"
My grandma has always been my best friend. She was one of the kindest women you ever had the opportunity of meeting and was such an extraordinary person. From donating much of her time to helping others to always putting a smile on anyone’s face, I aspired to be just like her when I was older.
Growing up, she was always by my side and we did everything together, which continued up until I left for college. So when I found out she was diagnosed with ALS the summer going into my senior year of high school, my world stopped. I realized with this terminal illness, I couldn't take our time for granted anymore.
The summer my grandma was diagnosed she could still walk, but had some trouble at certain times. I would visit her a couple times a week my senior year. The time we spent together meant the world to me, especially when I knew that one day, I would no longer be able to. Her speech started slurring, and at times, it was difficult to understand what she was saying. I made sure to call her every night, and cherish her voice because one day, I would never hear it again.
She became wheelchair bound in November of 2014. This was devastating, since she was such an active person before all of this occurred. She loved to garden and take walks outside, and now with ALS, she could no longer do what she adored.
Months passed and her disability became worse. She received an electronic communication device from the ALS Association, and used it quite often because no one could understand simple words that came out of her mouth. Our phone calls soon turned to emails. At first, she could only eat soft foods that could slide down her throat easily. Then in the summer of 2015, others had to feed her because she couldn't physically lift her utensils.
Aids were hired to help out, because she got to the point of needing 24/7 care. It took a toll on my grandfather, as well as the rest of the family, as we watched her slip away and couldn't do anything about it. The worst part was that my grandmother’s mind was completely aware of her surroundings. Her body was just failing her.
The weeks leading up until my departure to college, I made sure I saw her almost every other day. The final day came to say goodbye to her. This was one of the hardest goodbyes I had ever had to make, I didn't know if it was going to be the last.
I would email her every day in college, and I loved to read her responses she sent back. In September 2015, she had a feeding tube put in, so she could receive her daily nutrients. I came to visit her a couple weekends in college, and the second week in October, she was at her worst. My family was sitting around the dining room table one night that weekend laughing, talking and eating and she could do none of those things. She was trapped inside her failing body and no one could save her.
My grandma passed, surrounded by her family, two weeks later in the hospital. In a way, I was relieved. She was put through so much pain and suffering, it was unfair. To this day, I still call ALS the devil. I wouldn't wish it upon my worst enemy. My grandmother didn't deserve this disease at all. I can say that I did learn a lot from it, though. I learned that even when the worst thing that can ever happen to you becomes a reality, you must stay positive, just like my grandma did.
Every day, no matter how hard it was to stay in a wheelchair and talk solely by a device, she had a smile on her face. People called her “sunshine,” and it was quite obvious why. She never gave up and she never pitied herself. She also didn’t pronounce her diagnosis as her death sentence or have it define who she was. It's because of her that I've learned to appreciate life more, and to never take anything for granted.
