The way this disease has taken Steve along with his body is what I’d imagine a car crash victim would experience but in slow motion. I can see the victim before impact. Maybe laughing with a friend as they cross the street; or feverishly texting a lover, unaware they have stepped into what will be the end of their life. They are happy, or maybe sad. Or perhaps excited. The point is that they can feel and express and move their body in a way that signals what it is that they are experiencing. And then, the impact of 1000 pounds against their body. The sheer weight and speed with which they were hit causes immediate paralysis, internal bleeding, or whatever other awful ways of sucking life from a body. It all happens within seconds. Gone. An entire lifetime of idiosyncratic habits, unique experiences, obliterated, just like that. Everything they knew, and felt, and thought, becomes irrelevant. It’s not actually irrelevant, it just becomes nothing when they, the victim, isn’t an active participant anymore.
With ALS, everything becomes a memory, a story about who you were before the impact before the diagnosis. Days are not about creating memories; they are about surviving. Sure, there are memories created but one never knows the real meaning of making it to the end of the day when death isn’t constantly hovering, staring, lurking in the background. This is what #als is like. At least from my view.
Steve was diagnosed last April. That month we all cried a lot. Cory and Steve often held hands in the middle of the night. Steve still spoke. He walked without much effort. He texted with consistency. We all were told what was coming, what could come, but with the unpredictable nature of ALS, it was said: “One never knows.”
Steve’s wife, kids, mom, sisters, brothers, friends, were all shoved onto this high-speed train with only faint whispers over the intercom indicating stops and potential delays. It’s disorienting as this this thing barrels forward way too fast for anyone to process any of the view; it’s a blur. It’s too bloody fast. I imagine everyone tapping each other on the shoulder asking what in the F is happening.
Okay, enough of the train metaphor.
Here are some visuals I took recently. Cory agreed that a clearer view of where Steve is at now is important to everyone who knows and loves him. And for those of you with ALS or if you have a family member with it, you’re not alone.
Steve now sleeps in a hospital bed on the main floor. He needs help getting in and out of bed. It’s a bit easier on caregiver’s backs these days because he’s down to 170 lbs. He uses a walker, but the wheelchair is there too. He gets fed through a feeding tube three times a day and takes epic naps throughout the day. I asked him this morning if he dreams in the night. He gave me a whopping ‘no’ with the palm of his hand faced down, swiping from left to right. He digs the news and is currently binging Ted Lasso. He needs help getting up, going to the bathroom, and uses a suction machine to help phlegm move on out rather than seep into his lungs.
I have trademarked my feeds as ‘Slow and Sensual’ because that’s how he likes and needs them for his tummy to not get upset. Everyone gets validation that they are doing the right thing when Steve flashes them a thumbs up. For my feeds, I get a ‘tap tap’ on the tube’ and then a gentle thumbs up mixed with wide eyes and a smile. Sometimes I get several taps and several more thumbs up. My Slow and Sensuals are legendary.
These are moments from his current days. Yes, they will one day be memories but not the kind he would have ever wanted to create. But they are of him and his sweet self. Nothing can change that, not even ALS.
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