I am Emily Cerbone
a family member of someone we've lost to ALS
Illinois
The diagnosis devastated all of us.
“When people describe my dad, I always hear him described as quiet and kind. True. My dad also always thought first of others and had trouble saying, “No.” As an adult, I constantly reminded him that it was ok to sometimes say no when people needed his help or they wanted him to do something. I remember my dad coming over to visit sweating profusely and beyond exhausted after having mowed one of his friend’s lawns in the middle of a hot and humid summer! Another time, he told me how a friend of his had family visiting from overseas. They wanted him to drive out West to visit certain sites, so he did! This was a man in his 70s!
My dad finally was able to say no after being diagnosed with ALS in November 2014. By then, he had suffered weight loss and had difficulty speaking for more than a year. The day before his diagnosis, he panicked, thinking he might have esophageal cancer. “Let’s not jump to conclusions. We’ll see what the doctor says” was a phrase I used frequently. We both knew that whatever it was, it was something bad. He had already started getting his affairs in order, filling out documents, telling me where to find certain items that were filed away and who to notify of his passing. Of course, I didn’t want to hear this. I knew that it was serious and meant a lot to my dad, because like I said, my dad wasn’t much of an oral communicator and he was communicating a LOT during this period.
The diagnosis devastated all of us. Bulbar onset ALS progresses faster than limb onset. The muscles of his head and neck had already weakened. We knew nothing about this disease. Ironically the success of the ALS Ice Bucket Challenge had given us a few details. My dad was full of questions and concerns. I began my research into this disease and reached out to organizations, including ALS Worldwide.
Even though my father never met Sarah and Barry in person, I cannot begin to describe the valuable information and insight that was provided by them. And what a way to reconnect with Barry after having not seen him since our time together at the University of Wisconsin – Madison as young students. Who would have ever thought that we would, in the future, have this awful disease in common.
During this process, I had people who were strangers to me but knew my dad reach out to me. I don’t know what I would have done without them. I learned about the benefits offered by the Veterans, since my dad had served in the Navy and retired after 20 years. I also learned about the “possible” connection of ALS and chemicals sprayed during the Vietnam War. My dad was at an increased risk. As a patient both at the VA Hospital at Hines in Illinois and Northwestern, he was more than willing to be tested for further and future research into this disease.
As time progressed, my dad’s health expectedly got worse. He continued to communicate with us more than ever telling us he didn’t want to be on any artificial life support equipment and also did not want to be resuscitated. We respected his wishes and made sure that all involved knew this. It was hard seeing my dad in such a deteriorating state. This was the man who always led an active lifestyle. He hated being cooped up in the house. He loved riding his bicycle on local bike trails; driving his motorcycle on errands; tending his gardens; and fixing things around the house. He enjoyed meeting his fellow retiree friends for breakfast; taking the yearly trip to reunite with his Navy buddies; volunteering at funeral lunches; and taking time out to visit us for lunches at his favorite Italian restaurant.
It is two months since my dad passed. I have my good days and my not-so-good days. As I learned from the passing of my mother 10 years ago, only time will lessen the pain. The next step will be to put my dad’s house, our family home, on the market. My family bought this house in 1979, the year of the Blizzard of ‘79. What a welcoming. It’s hard to think of letting go of this house. So many memories of sitting outside on a nice summer evening, picking vegetables out of the garden, hearing the door open as my parents returned home from a day out.
These memories will never go away. I will hold on tight to them and remember my dad as he was before his illness – a happy, smiling vibrant man who could always be relied on. He was the definition of a dad who gave me a wonderfully happy and fulfilling childhood.”
– Emily Cerbone
