Some months, I struggle with what I would like to dedicate my time toward writing about. I think any columnist could attest to sometimes grappling with an idea to run with. This wasn’t one of those times for me as I already had at least a general idea of what I’d like to discuss.
Amyotrophic lateral sclerosis.
Most people know it as ALS or maybe Lou Gehrig’s disease, named after the former Hall of Fame New York Yankees baseball player that was diagnosed with the disease in 1939. ALS is a degenerative nervous system disease that, according to the Mayo Clinic, that affects the nerve cells in the brain and spinal cord and causes a loss of muscle control as in progresses.
I wanted to use this month’s column to focus on this disease because May is ALS Awareness Month.
To be more transparent, however, I wanted to focus on it because my father, Ralph, was diagnosed with ALS in 2017. He later died in 2022 due to complications from the disease.
For various obvious reasons—and many others that most people don’t know—this won’t be the easiest column for me to write. Without getting into too many of the details, my father and I had somewhat of a strained relationship. Suffice it to say, he wasn’t present for much of my childhood.
He did return to the home when I was a teenager, which initially created a lot of friction in the household, but we did eventually get to a place at least adjacent to normalcy. That didn’t come for quite some time though, and much of the healing came in the years following his diagnosis. Even then, I feel there were many things left irreparable.
I gave him the closure he sought in the months leading up to what ended up being the final ones I ever got to spend with him, but there was a part of me that knew I was just doing it for him.
I told him I forgave him for being gone all those years. I told him I forgave him for how things turned out due to his absence. But, I hadn’t. Honestly, over two years since his passing, I’m still not sure that I have. At this point, it just kind of is what it is.
I don’t want to use this column to paint a negative picture of my father. He may have made a number of poor choices during his life, many of which directly impacted me, but that’s not the entirety of who he was. He may not have always been the best dad, but he was a generally good person.
I know this because I witnessed it when he actually was around. I’ve also heard the same from people who knew him. He was kind, smart and quick to help someone if they were in need.
My father was a mechanic by trade. I don’t recall there ever being anything that he couldn’t repair, whether it be a vehicle, a computer, an appliance, etc. And if he didn’t know how to repair, he always seemed to figure it out.
I am quite handy myself (when I choose to be) due to his insistence that I always had to assist him in any type of mechanical work that I asked of him.
Needless to say, he used his hands for just about anything and everything that he did. That is, until he couldn’t.
Even before his diagnosis, there were signs that maybe something wasn’t right. Of course, we didn’t really notice them in the moment, but it became glaringly obvious after the fact. By the time he received his diagnosis, he couldn’t use his hands all at. Instead, they were lifeless weights that dangled from his wrists.
He had a tablet that he used to pass the time, often playing games that required touch inputs. For a while, he was able to hover his fingers over the screen and use his arms to guide his fingers where he wanted them to go, but that eventually became too much of a chore for him.
As his condition progressed, he also ended up in a wheelchair. We were fortunate enough to be able to get him a motorized wheelchair that he could mostly operate on his own. It provided him with some much-needed independence and freedom, too.
During the height of the COVID pandemic, my family remained overly precautious due to my father’s ALS. My mother was his primary caretaker and my wife and I helped as needed, so we all went out of our way to ensure we protected ourselves from contracting COVID since it would likely have been a death sentence for my father.
But his wheelchair allowed for the opportunity for him to get out of the house when he wished to do so. My family and I often took daily walks with him and my mother around the community we live in, which was one of the only activities he could really partake in at the time.
My father’s condition plateaued for several years before it began to decline again, though even once it did, it was gradual.
He eventually ended up bedridden. He also required pretty much continuous oxygen and assistance from a portable ventilator. His voice, once deep and rather gruff, was soft and muffled.
Then one morning, he was gone.
Despite his shortcomings, I loved my father. And just like when I was young, I spent years watching something take him away from me without being able to do anything about it.
My father was a tall, strong man. But he ended his life frail and helpless. That is what ALS did to him. ALS is cruel and unforgiving. It is a truly terrible disease. There is no known cure and ALS is ultimately fatal for anyone who is diagnosed with it.
So, this May, please remember the 20,000 to 30,000 people across this country who are living with this disease. If you know of someone who has ALS, reach out to their family and ask how they are doing. Let them know you care. Ask if you can help.
There are also resources and support options available on the ALS Association’s website at www.als.org, both for those who would like to provide assistance and for those struggling with the disease in need of help.
