More than a pALS

My dad and I tackling the trails on our bikes where Jurassic Park was filmed on the island of Oahu.

My dad was diagnosed with ALS in 2014. As a child and young adult, he taught me how to write cursive, ride a bike, drive a stick shift car, and change the oil in my car in case of emergency. He regularly played Barbies with me after a long, exhausting day at work (I am an only child.), and had no qualms about hopping into his car at 9 p.m. when I was sick with the flu to buy me a box of Honeycomb cereal when I was hungry. After my hamster died, he made a casket out of a cardboard box so that my hamster would be comfortable before being buried in our backyard. This was my dad.

Because he served for 20 years in the United States Navy, including multiple tours in Vietnam, he was often away at sea for months at a time during my early childhood. While he was gone, he always made sure to stay in contact with me and my mother by sending us colorful postcards, and once the day came when he arrived home, he made sure to bring me a souvenir doll from the country that he had visited. (Many of these treasures I still have at home.)

As an adult, my dad continued to write me letters and send me postcards when I lived overseas for a brief period of time. When I was doing theater, he often showed up to my shows—although some may have been a bit risqué for his taste)—and made sure to regularly attend my afterwork softball games even though it was a long drive. He even drove an hour in the rain to rescue me when my car broke down. Always the parent who provided me with comfort as a child, he was there to hold me as we stood at my mother’s casket saying our final goodbyes. This didn’t stop when I got married either. My husband was elated when my dad showed up to our condo with boxes of Bellatore frozen pizza peeking out of multiple grocery bags or built a set of stairs to our basement without asking because we really just needed them.  

To say that our world changed when ALS invaded our lives is an understatement. Despite multiple visits to my dad’s primary care doctor and specialists who said that they couldn’t find anything physically wrong with my dad, we knew that something was going on. He had been losing weight quite rapidly in the past few months despite eating a normal diet, and he was constantly clearing his throat. Finally, one day, a close family friend who was a caregiver mentioned that she once took care of someone who had similar symptoms to my dad, but what the person had wasn’t good. It was ALS. After hearing that, I researched some hospitals in the area and made an appointment at Northwestern Hospital in Chicago. This is where and when he received his ALS diagnosis.  I look back on this time remembering that just a few months prior, I was watching people doing the ALS Ice Bucket Challenge and thought about how really disconnected I was from this disease at that time and knew nothing about it. Because, well, ALS did not impact my life until my dad’s diagnosis.

My dad’s ALS journey was short, and extremely far from sweet one. He was diagnosed with bulbar-onset ALS, so his speech, swallowing, and breathing were immediately impacted. Within months he could no longer eat. Within months he could no longer speak. Within months he could no longer breathe on his own. And, just over a year from his diagnosis, he was no longer alive.  

In looking back on my dad’s life with ALS, it really was a blip in his long 74 years of life, but oh did it impact his life, my life, my husband’s life, his siblings’ lives, his friends’ lives, and so many more who were connected to him. ALS not only devoured this active man in his 70s but it ravaged the emotions and souls of all those who loved him. I wish that I had the multiple resources that are available now for guidance and support, and I wish that I had known more about ALS advocacy and the importance of sharing my dad’s story with local legislators. I can’t even begin to tell you how much energy and wasted hours were spent writing angry letters and making rage-fueled phone calls that only ended up falling on deaf ears. The project manager who oversaw the renovations on my dad’s home didn’t know or seem to care that everything was moving slower than a snail’s pace. My dad never saw his renovated bathroom. He passed away before the project was completed.

My dad left the world without the ability to speak, with arms and lungs that no longer worked, legs that barely held him up, and at a weight that had plummeted past my weight—a nearly 70 lb. weight loss during his journey. What was there to be grateful for during this time of pure hell? Despite his failing body, his brain remained intact — still full of knowledge and fond memories. My dad continued to communicate and spit out detailed information, first through writing and eventually via his speech generating device, a Tobii Dynavox. He filed his own taxes — Yes, via paper documents —  told countless stories from his childhood, my childhood, and made sure to offer sage advice to my husband when it came to caring for his car.  His brain continued to retain an encyclopedia full of information on anything and everything from U.S. history to wild animals in Africa.

I look back now — just over 10 years since his passing — and am grateful for the advances in ALS research, the increase in ALS resources, including ALS education, although a cure is still missing. While I wait for a cure and further treatments for so many in the ALS community, I will not only continue to share the story of my dad’s life with ALS, but most importantly, the story of who he was as a person, to me and the family and friends whose lives he touched. My dad was more than a person living with ALS. He was and is a son, brother, father, husband, and friend, and will forever remain so.