The Disappearing Act: Ghosting and ALS

Me, my dad, and Joe at the brewery pub.

It’s now easy to look back on challenging times in my life and pinpoint when ghosting may have or most likely occurred. What is ghosting? According to Merriam-Webster's Dictionary's definition, it is the "phenomenon of leaving a relationship of some kind by abruptly ending all contact with the other person, and especially electronic contact, like texts, emails, and chats." One example is after my mother’s sudden passing; a normally cordial co-worker began to avoid me at work after I had returned following my mother’s funeral. Another time was when a close friend of my mother’s, who I had known since I was an infant, stopped returning my phone calls. When I reflect back on experiences during my dad’s illness and how he was affected, I first noticed that he was being ghosted prior to his ALS diagnosis.  

In late fall of 2014, close family friends were celebrating their 60^th birthday at a brewery pub run by one of their sons. Everyone was out on this chilly evening, including my husband, my dad, and me. I remember my dad had been losing weight in the months leading to this day, his voice had also become hoarse, and he was constantly clearing his throat. I remember in those months telling my dad to drink more water since he was a big coffee drinker and I had assumed that he was just perpetually dehydrated. It had also become hard for him to project his voice as well as articulate himself clearly. (Yes, this indeed was a concern of mine but maybe I was trying to make myself believe that it was nothing.) Anyway, that evening, friends, and family stopped by our table to chat, but the chats were short with my dad. Bars are loud enough as they are, which made it even harder to hear my dad’s less than clear voice. No one seemed to have the patience to listen over the noise and decipher what my dad was saying through his strained voice. Although my dad was innately a quiet man, he did like to engage in conversations, especially with people he knew well. I remember seeing my dad sit there at our high-top table with a look of sadness and frustration. After a short time, he told us that he wanted to go home, but we could stay. We tried to encourage him to stay with us, but he didn’t want to. He was not only frustrated with his voice but at the lack of patience that others had. Weeks later, my dad was diagnosed with bulbar ALS.

Although ghosting may have begun earlier than that evening, this is my first vivid memory where I began to see and notice the impact of ALS on my dad’s social life and just life in general. This time was followed by many other experiences that occurred in the year until his passing. Some family and friends walked away from his life during that difficult year—some for a moment and others for an extended period of time.  Many, including the closest of friends, never came to visit as his ALS progressed. I never understood it. Just when you need people the most, they aren’t there for you.

On the bright side, his siblings remained. Yes, some visited more than others or checked in more than others, but he was fortunate to have had them there for support. Long-lost friends also came out of the woodwork, most notably his Navy buddies. Although my dad retired from the Navy in 1981, he kept in touch with many of his friends through yearly ship reunions that occurred in various locations across the country. Their support and friendship not only benefited him, but they also served me well. I was fortunate to see never-before-seen photos that were shared by his friends of myself, my dad, and mother during social outings when my dad was stationed in Guam. His friends helped me finally identify strangers in my parents’ wedding photos that were taken in Japan. The biggest benefit from these connections, however, was the information that was shared regarding the benefits that my dad could receive from the government. I wouldn’t have known about these benefits without them. And, for that, I am ever so grateful.

With time, I’ve come to understand that people may participate in ghosting due to their own issues, such as the difficulty in seeing someone they love gradually lose the ability to walk or talk or just knowing that ALS is terminal and that they will not, in most circumstances, be around for long. They may feel helpless. Other reasons may be purely selfish ones. I remember a longtime family friend who worked just minutes away from my dad’s funeral service told me that she couldn’t attend because she had to work and couldn’t take the time off (on a Saturday). Others were frank with me, which I appreciated. One friend told me months after her husband passed that she couldn’t bear going to a funeral right now.  I understood and thanked her for sharing that with me.

If I can offer advice as a daughter of someone who lived with ALS and a friend and advocate of the ALS community, please be transparent. Most people will understand whatever struggles you may have. Ghosting is the cowardly way out in my opinion.  Actions say a lot, and these actions will always be remembered, although probably not in a favorable way unless you communicate.