A few years back, (as I get older, decades seem to turn into a few years….it’s weird). Anyway, like I was saying, a few years back my SF company (6 A-teams or ODAs and a B-team or ODB…. Google it or we’ll be here all day) was doing pre-mission training with 3/160 Special Operations Aviation Regiment (SOAR….Google that one too) and one fine night I found myself in the back of a MH-47 (geez…Google it) finally levelling out and flying straight over a big lake. I put that last part in because up until that moment it felt like the flight crew had been looking at a book of the world’s worst roller coasters and trying to duplicate all the twists and turns of each one. Ok, ok, really, the senior pilot, a crusty warrant officer, was putting the junior pilot (who would be a senior pilot in a conventional unit) through a little special flying….in the dark….in a school bus sized helicopter that is less than agile, but I secretly suspected they had taken bets on how many of their passengers they could make vomit.
I was sitting near one of the crew chiefs and after a minute or so of calm flying, he leaned over and shouted at me to flip my night vision goggles down and go look out the front. Turns out we were flying like that so we could mid-air refuel. As you might imagine, there’s a lot that goes into refueling a helicopter that’s flying, from another aircraft (KC-130 in this case….(sigh)…Google it) that’s also flying. Add in doing it in the dark with pilots wearing depth perception altering night vision goggles and it seemed downright sporty to me.
The aforementioned crusty warrant was letting the junior pilot do it and even though his hands were hovering around the controls, ready to take over in an instant, he seemed pretty nonchalant and nodded at me.
“He makes it look easy, don’t he?”
“Is it easy?”, I shouted back.
He considered it for a second, then shouted back, “Well, it’s kinda like trying to shove spaghetti up a wildcat’s ass…..in the dark.”, then after another second, he added, “Oh yeah, cooked spaghetti.”.
I nodded, trying to be nonchalant too, but actually, I was really, really chalant, so I just went back to my seat to think about deep subjects like the odds of surviving a helicopter crash into a lake and how hard it would be to swim to the exit of a rapidly sinking helicopter.
If you’ve read any of my posts, you know that my rambling tales eventually lead to some sort of point about multiple sclerosis. This time it’s about the spaghetti and the wildcat’s…….you know, the warrant officer trying to explain the process of mid-air refueling a helicopter to someone who has never had and will never have that experience.
That’s how trying to explain MS can be. Sometimes it’s as though there’s no common, easily understood, or relatable way to describe a symptom, so we find ourselves reaching for bizarre examples just to try and at least get the seriousness across.
My legs and right hand and arm aren’t paralyzed, there’s some numbness in my fingertips, but they don’t feel asleep, or tingly either. Sometimes, I find myself looking at them like they belong to someone else and I’m trying to will them to move. Oh, and when they do, it’s like they’re trying to move while submerged in a bucket of jello.
When fatigue hits, it feels like my head is filled with concrete; thick, full, too heavy to hold up. It’s tough to think and/or concentrate with a head full of concrete and since reading requires both plus actually being able to see the words…….
It’s not like I’m trying to see through a curtain, or frosted glass. It’s like I’m trying to see through a sheet of cling wrap that’s wrinkled and wadded up in places instead of being stretched tight.
These are just a few examples and since my MS isn’t your MS, they may not fit your situation exactly. Feel free to chime in, in the comments with the creative ways you use to describe your symptoms to other people.
I’m sure there are a few people who know me, reading this and thinking that they had always imagined my head was filled with concrete. Come within slapping range and as soon as I use the force to move my hand through this jello, you’ll be sorry……or at least tired and bored from waiting for your comeuppance.