Alphabet Soup but with Feelings
So firstly I made a mini DJ set for you to listen to while you read this here's the link below. It's mainly Lo-Fi Beats designed to not distract you from the premium content you're about to consume.
Also if you aren't familiar a lot of folks with ALS do what's called voice banking which in this day and age means that you feed an AI a recording of yourself reading a passage and creates an AI voice clone. This allows ALS patients to generate speech in their own voice once they've lost the ability to speak. So I'm going to feed this entire blog post into the AI voice clone and have that audio file for you as well.
Let's start with the physical stuff:
I'm experiencing a lot of atrophy and my deltoids and shoulder muscles making it very difficult to lift my arms over my head. This presents challenges with almost everything from unloading the dishwasher to take me out the garbage to brushing my teeth. What were once simple tasks have become somewhat arduous in their execution. For example, I put too much garbage in my garbage making it very heavy and I had to really consider how to get this trash bag into the garbage bin outside. My first thought was to place the garbage bin under the side porch and drop the garbage bag in thus avoiding a trip down the stairs with a heavy bag. However, I realized that I could not get the garbage bag over that ledge so instead I carried the garbage down the stairs with the utmost care not to fall forward (because nobody wants that). I then attempted to place the bag into the bin with two hands. I was unsuccessful. It's at these points when panic can begin to set in. It's not that I have a compulsive need for the bag to be in the bin, it's more a result of not being able to do something and feeling helpless. My first thought was to go to my neighbors and ask them for some help. They were not home. Then I laid the garbage bin down on the ground and was able to heave the bag in. Boom! Roasted. Trash discarded. This is what winning looks like. Walked down the stairs without eating it: Win. Got my coffee mug to my table with no spillage: Big Win.
I find myself in that predicament often. You can try and go about things how you've always done them and you may be successful. You can adapt by being creative, you can ask for help or you can punt it into the future. These choices are starting to factor into my decision making.
Now for the emotional / philosophical stuff:
It's hard not to time travel when you are living with ALS. I find myself flipping through the pages of my existence examining all the hard forks wondering what could have been, taking stock of all my decisions because what is this life but a summation of all your choices? What did I do right? What could I have done differently? How did I get here? I find myself saying “ I used to insert activity/lifestyle/feelings here” like I need people to know I used to be a whole person with a bright future. It's quite difficult to disentangle this disease from my identity. Because I imagine people only know what they see unless they knew me from before. These are my daily ruminations.
Happiness is a choice and it's one you have to make every single day. In my case it's a moving target. It's hard not to feel like I'm just carelessly careening towards death ( inevitably somebody is going to think ”well, aren't we all?”. Yes it is true that we are all inching towards death however I happen to have a clear picture of what that looks like for me) because as soon as I adjust to one change in circumstances another one crops up. I'm playing ALS whack-a-mole over here.
On the positive side, I'm lucky enough to be able to go to Japan for 10 days in early March. More to follow.
