Progression and current ability are questions I answer frequently. Whether it’s work or life in general, people are always curious about my personal journey with ALS and I love every second of the questioning. But it’s often hard to explain progression and current ability, mainly because it depends on the day, or the task, or how much water I’ve had, or what I did yesterday – all of those factors play into my answer. Is my disease progressing? Yes, without a doubt. How can I tell? Well, it’s all relative.
According to merriam-webster.com:
Definition of it’s all relative is used to say that something can be thought of in opposite ways depending on what one compares it to.
I feel like I have a pretty good grasp on my new definition of “normal life”, most days anyway. And then, just like that, everything I think I know about my body and how it’s functioning with ALS goes out the window. It’s exhausting. It’s ridiculous. It’s frustrating.
Most of y’all know the joy that is summer in Texas and if you don’t, just imagine the hottest temperature you’ve ever endured and add 20 degrees to account for humidity. It’s miserable. It’s soul sucking. It’s hot. So take that kind of heat and humidity and apply it to a body that’s already in overdrive just to function at minimal capacity and what do you have? A very, very worn out Sunny. Luckily, it’s not this hot all year long and reprieve will be here soon at the pace we’re going. Last summer this wasn’t an issue, sure it was hot, but not debilitatingly so like this summer. See? It’s all relative.
Another example: we found out in Cancun that my feet float. I was sitting on the stool at the swim up bar, and then all of the sudden I wasn’t. My feet were floating up behind me and I didn’t have the core strength to stand up, so I was that guy flailing and fighting to stay above water, when it was only 4 feet deep. “I promise I’m not as drunk as I look.” Last summer I was bouncing in the waves of Aruba, enjoying the bouyancy and weightlessness of the water and this year I can’t even get my feet on the ground.
Some days it’s a button, or a zipper that trips me up. Other days I impress myself with a full face of makeup or curls, all of which means my hands, arms, and brainpower is wasted upon completion. I used to look forward to massages and the relaxation they induced, but now they mean days of rest for recovery.
This “sprinkle” sums it up perfectly. Hey, I’m proud of you! Sounds way better than the string of profanity that spews after my daily struggle with menial tasks like putting on my watch or brushing my teeth. ALS is a mean disease, but it could always be worse, right? Guess it all depends on your definition of worse – relativity can be a fun game, too, huh?