The notification that I had been dreading for five years popped up on my phone Monday afternoon.
Pete Frates, ALS advocate who helped turn the ALS Ice Bucket Challenge into a worldwide phenomenon, had passed away.
This news did not come as a surprise. But regardless of whether or not it was expected, the news pierced my soul. It hurt. I felt like I had lost a good friend, even though I never met him.
I had followed Pete’s story ever since I first learned about the ALS Ice Bucket Challenge in the summer of 2014. Even as his physical condition deteriorated over the years, his spirit remained defiant. His perseverance through hardship was the example I needed during an incredibly difficult time in my life.
2014 was a fateful summer. I was 27 years old and was starting to fall with increasing regularity. Although my muscle disease (Miyoshi Myopathy/Limb-Girdle Muscular Dystrophy type 2B) was not ALS, it had weakened my muscles to the point where I was a shell of my former self. That June, I purchased a scooter, but in my own stubbornness, refused to use it. I was embarrassed to have a scooter, and was not ready to accept that I needed a four-wheeled mobility device. I walked everywhere, and paid the price with bruises and cuts.
As if falling was not stressful enough, I was due to start business school in the fall and had recently left my job at a tech company in Boston. I had always wanted to go to business school and felt that the time was finally right. I was 27. I wasn’t getting any younger and I certainly wasn’t getting any stronger. I was confident in my decision. Or so I thought.
Then the falls came, and it threw my life into flux. My mind was flooded by doubts. And behind the doubts, a wave of depression. I second-guessed the decision I had made, even though it was a major goal of mine for a long time.
How would I get through the next two years if my body was falling apart? I was in a dark place.
In the past, when I would experience a rough patch in my life, I would turn to my role models. They were people whose stories I had come across in one way or another over the years. Some I knew, some I would never know because they lived in a different time or had recently passed away. They were people who, in their own way, triumphed over hardship and adversity.
Although my role models did help me that summer, I still felt a foreboding sense of dread for the future. I still felt like I would be unable to make it through the program. That at some point I would burn out, or hurt myself, and fall behind in schoolwork and job-hunting and the whole thing would be a colossal mistake, financially and emotionally. The challenge before me was formidable, and I had lost my confidence.
Then, like millions of people that summer, I saw someone on Facebook dump ice water on their head, and everything changed.
As I researched this curious phenomenon, I was introduced to the story of Pete Frates. I resolved to learn as much as I could about him. Maybe it was the fact that he was from the Boston area, my adopted home of 12 years. Maybe it was because he was a Boston College alum, and that just happened to be where I was going to school in the fall. Whatever the reason, it was clear: I had a new hero.
Pete was someone who seemingly had it all, stricken with quite possibly the cruelest disease imaginable during the prime of his life. The prognosis of ALS is not good. You might live 2-5 years, and in those 2-5 years, you lose all physical abilities but your mind remains untouched. You become a prisoner in your own body.
Pete knew what he was up against, but made the decision from day one to fight back. Throughout his journey, Pete did not let declining mobility get in the way of thinking outside the box to make a difference. ALS took away his strength, but it could not affect how he would live his life, or diminish his impact on others.
Inspiration is an overused term in this day and age. But it is no exaggeration to say that Pete inspired me. He came into my life at just the right time, and changed the course of my future with his example of perseverance and strength. He may not have had physical strength but his mental toughness was off the charts.
Pete was to me in 2014 what my friend Carly Hughes (also a BC grad) was to me the year before: a beacon of light guiding me through the storms of life.
Well, I made it through business school, and today am employed at a job I love. Without Pete, who knows where I’d be now. Even after that summer of 2014, I continue to rely on his example when I am feeling down or second-guess whether or not I can do something. I am stronger today mentally because of Pete. He was a personal trainer for my soul.
In the days since Pete’s passing, I have read messages of how he has inspired others, including those diagnosed with ALS since 2014. He has been a hero to so many. He not only impacted me, he impacted a generation of people facing adversity of some sort, whether from a disease or another kind of hardship. He has showed us all how to live a life of purpose.
In each message, in each story, it becomes more and more apparent that although Pete may no longer be with us physically, his spirit remains alive and well.
He is alive in every diagnosis accepted with courage. He is alive in every assistive device used with confidence. In every life milestone celebrated. In every goal achieved. In every breakthrough that will one day lead to a cure for ALS.