It’s been four and a half years since I said goodbye to my dad as he fought in the ICU.
He was diagnosed with ALS only a year prior and his body began to decline fast. There was no happy ending or hope for remission. ALS is cruel in that way. ALS takes away one’s basic ability to function. However my dad never let that stop him from living.
I want to tell you about my dad, who he was and the amazing life he lived in his short fifty two years. He was not only the most important person in my life, he was also the kindest man I knew. He wasn’t afraid to show a soft side and tell me and my family how much he loved us. He was always the first to cry Friday nights when we caught up on This is Us, thus eventually leading me to cry in unison. We sat there tearing up over our ice cream bowls together. My mom traveled a bit for her job and so from time to time it was just my dad, my brother and I. This meant he oversaw groceries and only the finest delicacies were bought like rice crispy treats, Lucky Charms and sour cream and onion chips. My dad and I would sneak away on vacations together to hunt down the best Stracciatella ice cream that the place we were in had to offer. He and I would stroll on the beach or around the town and just chat about the beauties of life because that was the kind of person he was--one that you can do anything with and feel at peace, no matter where you were in the world.
Every so often on Saturdays my dad and I would go daddy daughter boxing with my best friend and her dad. "Papa, are you ready to go boxing?” I'd yell as I ran into my parents room.
“Stella, my shoulder is really hurting me today, I think I need to sit this one out.”
Mr. Frowein
That was the first time where he wasn't up for it, strange I thought.
This was the start of my dad’s battle.
I remember the day we found out so clearly. It was a cold, dark January afternoon, the wind was howling and the trees swayed in the wind. My brother, and I sat around the fireplace with my mom, not expecting the news we were about to get. She began with “as you know your dad has not been well and we found out what the diagnosis is”. It had been up to this point about two years of doctor visits, IV's, needles being stuck directly into the bone, blood tests, and seeing just about every specialist under the sun to figure out what was wrong with him. She continued with ALS and my heart dropped. It had to be anything other than this, it just had to be.
I was fifteen when my dad died from ALS.
Five years later I am an intern and a member of Project ALS’s emerging leaders board. After my dad passed away in 2021, I felt lost and alone in my grief. I tried searching for online platforms where I could maybe find someone around my age with a similar experience. My search was unsuccessful as I found there was no content designed for young adults who are experiencing grief. This had to change, I thought to myself, so I began to write. My blog posts started as me putting my feelings into words and processing the last years of my dad's ALS diagnosis and death. For a while my blog was just an online diary for others to read. Eventually I decided that my blog needed to expand. This was the beginning of 2:Cubes and where Project ALS comes into play.
Now, a few years later, I am working alongside people who care so deeply about finding a cure. The disease that took my dad away from me, has now brought me to a community that means so much to me. I know my dad would be proud to know that I turned the pain into something positive, and am working hard to make sure this doesn't happen to other families. This journey is far from over, and I intend to see it through, for him.
