A pAL is someone living with ALS. I’ve come to view ALS as the super exclusive, membership only grou,p that I hope no one else ever becomes a member of. Even though ALS is a pretty rare disease, I’ve met numerous people in my local area who have family members or others in their family and friend groups that are (or in many cases were) afflicted with ALS. With me being involved in volunteering work for various ALS groups now, I meet with and have video discussions often with other people who have ALS too. Over the last six months, I have seen many people in various states of ALS decline, and all of that exposure and real world knowledge and experience has me feeling a lot of feels!
All of my interaction with other people living with ALS has been virtual. In most cases I see these individuals on zoom calls, so they are in their natural environment, usually very casual or informal attire and surroundings. I have personally have had to change my communication style to listen and be patient instead of trying to be efficient. A person with ALS might talk very slowly taking double the amount of time to convey a single sentence to a normal person. In many cases the people I meet with that have ALS, have a very monotone voice and difficult enunciating. Listening to understand, and trying not to get ahead of them and disregard their communication is something I have to consciously think about and keep myself in check. I personally do not have any of these communication limitations and I hope that those issues are far in the future if they do happen.
Extreme emotions are part of having ALS! Seemingly small and insignificant triggers can happen in any setting and can be very personal and not apparent as to the source of these emotions to those around us. As a person with ALS I can attest to uncontrollable and sudden emotional outbursts both in myself and other people living with ALS. Just last week I was in a zoom call and one of the participants was having some extreme emotions and broke down crying. It is very difficult to watch a grown man cry so openly and freely about things that will be impacting your life in the near future. I know for me and probably all of the other ALS people, we swallowed a huge lump in our own throat and tried to provide moral support.
One thing that I have come to recognize in the ALS community is a duality of being vulnerable and allowing others to morally support you while also in other situations being the strongest and most resilient person possible. When it comes to emotions and interaction with other people with ALS I find myself shying away from what I call the pity factor. There are some ALS people who are very vocal and want to share all of the bad and difficult parts of this disease and that becomes their focus in communication, this is what I call the pity factor. Me personally, I try to project a sense of strength and resilience to fight and be as strong as possible for as long as possible. Of course, there are times I am emotional and will pull back and internalize the negativity that surrounds this disease. What I try to do is compartmentalize that negativity giving it as little time as I can managed to get it under control. In recent weeks I’ve had to disclose my ALS condition in discussions and I’m always trying to monitor how that happens. In most cases I’m trying to manage this disclosure of significant bad news while trying not to project or make my condition something that I negatively push onto the people I’m communicating with. Maybe that sounds a little crazy??! Stephenie says that I need to just communicate clearly and effectively and allow the other people to do with that information what they will. I have spent sleepless nights thinking about how I breach this subject so that it is easier for other people to hear without immediately entering into the “pity factor” or worse launching into a story about how someone they knew died from ALS.
On social media I follow a lot of ALS content creators and personalities. There are a few individuals that I found when I was trying to self-diagnose back in 2020. Almost all of those people have passed away since. There are a few people that I continue to watch their content and see their progression with ALS, and it causes me extreme emotions every time they put out a video. One content creator in particular her name is Brooke Eby. She’s A fairly young woman with a great wit and sense of humor about ALS and all of the things that come with it. I’ve been watching her content for a few years now and in the past 12 months her condition has significantly declined. One of the factors that I use to gauge my progression in ALS is a test that measures the amount of air lung capacity that you have at any given point in time. This is usually the first test that I do when I go to my ALS clinic days and I dread it each time because I don’t want it to be lower than it was the last time we measured. Over the past year Brooke went from a lung capacity in the 75% range all the way down to 12%. This change was rapid and unexpected and each time she put out a video releasing more information I cried for her and her family. I keep watching and consuming the content she creates and providing my minimal support by clicking on the like and share buttons. I linked her YouTube channel above and I think she’s also on other social medias if you search her by name. She
Recently, there is a new trend in my Social media – algorithm feed that shows me people with ALS who have started posting in the last few months… so they are new to all of the ALS things. One of those new social media accounts is a guy by the name of Hayden and he was recently diagnosed with ALS. He has a wife and three small children and I spent half a day watching all of his videos when I came across his account. I don’t think you would believe me if I told you the amount of tears I shed for this person and his family having never met them but understanding the gravity of how ALS will impact all of their lives. He is at the very beginning of his ALS journey, Asking all the same questions and having all the same fields that I did in the first year of my diagnosis. I wish him and his family all the best and I’ve reached out to him via comments on his YouTube channel to offer any support, He might need even if that’s just another person to talk to in the same position.
So I was probably rambling a lot in this post, but feelings are not my specialty. I try to avoid them whenever possible but sometimes you need to make peace with the extreme emotions that come with ALS so that you can continue on your life and be productive.
