Month: September 2021

Categories
Life with multiple sclerosis

Evil Ted

Still from: Verbinski, G. (2002). The Ring. DreamWorks Distribution.

Last week, I wrote about nicknames and it brought someone to mind. I try not to use anyone’s real name here out of respect and also because I might be telling about an event they’d just as soon not be associated with, but in this case, I’m pretty sure this person’s first name was Ted. He was one of the cadre at a sub-course within the long and involved Special Forces Qualification Course and was simply known as “Evil Ted”. If the other cadre introduced him as Sergeant so and so, I don’t recall, because I think they referred to him as Evil Ted too, as in, “Go change into your PT (physical training) clothes gentlemen. Evil Ted will be waiting for you at the combatives pit for hand to hand training and character building.”, (nothing builds character quite like having your head in another man’s armpit for an hour.)

Now, there are probably different degrees, but Ted wasn’t actually evil. Even the one occasion that comes to mind now could be better described as…… playfully cruel. It happened like this…..

Evenings at that particular part of the Qualification Course were pretty laid back. There were four or five small barracks with a group of students, a sleeping area, and a classroom in each one. Between dinner and lights out, you could pretty much do as you pleased, including watching movies on the TV in the classroom section. Each building had its own set of cadre for the day’s activity with one assigned to stay in the compound each night. Evil Ted was an instructor for the small group in the building next to mine and on the night he stayed, he brought in a recently released on video, copy of “The Ring” for his guys to watch. For reasons that can best be described as “mean spirited”, he didn’t start it until after lights out and by the time they finished the movie, it was a very dark and slightly foggy, midnight. He then told his guys that since they were all wide awake from adrenaline, they should all go outside and work it out of their system in order to sleep that night. They did lunges and the like in the compound’s parking lot for a few minutes and then moved over to the obstacle course right next to the compound where he put his guys in the tunnel.

A quick bit of background is necessary here. The obstacle course I’m referring to is the one used for Special Forces selection and has a number of high obstacles to weed out candidates with a fear of heights and the longest, darkest, narrowest, tunnel system in existence, to weed out candidates who are…….normal and sane. It has sections big enough to crawl on hands and knees, sections where you have to crawl on your belly, twists, turns, and chimneys, and can be configured with different exit points, one of which was through a manhole in our compound’s parking lot, which was the one Ted set up for his guys. Ok back to the story….

From start to finish would take about 10-15 minutes, so after the last of his students entered the tunnel, Evil Ted raced to the building I was in, woke us all up, and filled us in on what was happening. He quickly picked one guy, had him strip to just his shorts, wet him down with a hose outside, and had him crawl down into the exit and lay in the tunnel while the rest of us stood in the parking lot, waiting in…..well, I guess “horrified fascination” sums it up nicely.

Now, I’m prone to exaggeration and perhaps a little embellishment from time to time, but in the seconds after the first man in that tunnel, (no doubt already seeing the dim circle of light from the exit), stretched out his hand and touched that cold wet body, it felt like the earth shook a little. There was an eerie moan from the tunnel, sort of like the muffled shriek of a distant train and guys began to pop out of exits all over the obstacle course. Two even popped out at the entrance point which might be the most incredible feat of the night since they not only covered the entire distance in about 30 seconds, but they either did it in reverse, or were somehow able to turn themselves around in the narrow confines of the tunnel.

Verbinski, G. (2002). The Ring. DreamWorks Distribution.

That was the only borderline evil thing Ted did. He was probably harder on us than any of the other cadre, but it seemed very important to him to let us know he was one of us. For example, if he dropped the class for pushups, etc, he did them with everyone. It’s hard to call someone “Evil” for having you do lunges around the compound if he’s leading the lunge parade. 

In the MS community, people say, “You have to get it to ‘get’ it”, and as much as I don’t like cutesy sayings and cliches, I tend to agree. My neurologist is an amazing MS specialist and professor at a teaching hospital. He, no doubt, has forgotten more about it than I’ll ever learn, but he doesn’t have multiple sclerosis. He can describe, in as much detail as I can handle, the physiological, biochemical, and biomechanical processes behind nearly every one of my symptoms and can even sympathize with my difficulties, but he can’t empathize because he isn’t one of us. Harsh? Maybe, but I think he’d agree.

In an interview with a combat veteran regarding the difficulty of talking about his experiences, Dr. David Grossman quotes him as saying something along the lines of; it’s like going to a nursing home and asking a resident if they’ve ever wet their pants. Maybe they have, maybe they don’t even mind talking about it, but only with someone else who has wet their pants too. Someone who can empathize. 

I think that’s why I’m still a little bitter at my first support groups. I had hard questions and only wanted answers from someone in the same situation. Maybe I’m being too hard on them. After all, as I’m fond of saying, MS isn’t a one size fits all disease, but I’m also fond of asking, “Why didn’t anyone tell me ______?”. 

Be your own advocate and maybe just as importantly, find someone, or several someones, who don’t mind talking about the hard stuff because they’re going through it with you. 

Don’t traumatize them, but be someone’s “Evil Ted” of multiple sclerosis.

Categories
Life with multiple sclerosis

What’s In A Name

Photo by The Harris Corporation

I met my wife while I was teaching at the Group operations detachment and one night, early in our relationship, we were at a party full of……well, I guess “my kind” is the best way to put it. We had mingled separately for a bit and when we found ourselves together again, she had questions.

    “See that guy over there…the stocky one? What’s his real name? The other guys called him ‘Lunchbox’ and come to think of it, he may have even introduced himself that way”.

    “Oh that’s Paul*. ‘Lunchbox’ is his callsign on his team’s internal radio network and also his nickname. He’s been called it so often by the guys here, it probably didn’t occur to him to introduce himself by his actual name”.

     “Ok, how about that guy he’s talking to right now? Everyone calls him ‘Dirty Steve*’. That seems kind of mean. Why do they call him that”?

    “Oh, because he’s dirty”.

    “Like unwashed, or corrupt”?

    “Hmmm, it could actually be a bit of both, but more the unwashed part I guess. He looks all groomed and clean cut now, but you have to imagine him with a horribly unkempt beard and a lip full of Copenhagen snuff. Half the guys here are dipping tobacco, but you wouldn’t know it unless you actually saw them pull out a can in front of you and put a pinch in their mouth. When Steve does it, it looks like he grabbed half the can and threw it at himself from arms length. He also can’t seem to aim or project when he spits, so there was usually tobacco juice dripping from his mustache and/or radio microphone”.

    “Ok, stop (gag), I get it”.

    “Did you meet ‘Crazy Bill*’? We call him that because……”.

    “I did and I figured that one out by myself. What about that guy”?

    “Hmm, he’s been drinking, so this probably isn’t a good time to introduce you to ‘Sleazy’”.

    “What’s your callsign”?

    “Oh, who remembers? I’m sure it was something awesome though”.

 Odds are you didn’t choose your own (real) name. Initially, anyway, someone else decided what noises people should make to get your attention. You can, however, legally change it, or insist on going by your middle name, etc. Nicknames and especially team callsigns are also not chosen by you and in general, are nothing you’d ever choose. The difference is, they can’t be changed, just exchanged for something that may or may not be an upgrade.

I didn’t choose to get multiple sclerosis and wouldn’t have chosen it if I’d been given the option. Like a callsign/nickname, I may have done something that contributed to being stuck with it, but who knows? I do know that I can’t change it. Time and innovation will tell if I get to upgrade it. 

*I didn’t use anyone’s real name, so as to protect the innocent.

Categories
Life with multiple sclerosis

Bad Landing

From the US Dept of Defense https://www.defense.gov/Explore/Inside-DOD/Blog/Article/2062418/airborne-school-what-its-really-like-learning-to-jump/

Given that I have primary progressive multiple sclerosis, my genetics probably aren’t all that great, but there are a few perks, one of which is my bone density. I sink like a rock in water but have never broken anything, despite all my clumsiness and mishaps. Well, I have broken my nose 3 times but that hardly counts. I wish I had a good story or 3 to go along with those incidents, but when I say, “I” broke my nose, I mean that I was the responsible party each time. I should probably make up something involving a fight, a daring rescue, or something of that sort, but there are just too many witnesses to dispute my claims. 

Actually, come to think of it, my good bone density is a mixed blessing at best. I like the water and enjoy being in it, but it might be nice to be able to float. I am proud to have never broken a bone, but something’s got to give, so instead, I ended up with 2 knee surgeries, an ankle reconstruction, have a bulging disc in my neck, and have dislocated both shoulders, the right one, several times. Even though my left shoulder was only dislocated once, it is the more memorable experience because of how it happened. 

When I was a young Ranger, we were doing an airfield seizure exercise at Cecil Field in Florida and while jumping in late one night my enormous watch (I like big, dumb, gadgety watches*) became tangled in the suspension lines of my parachute. When I landed, my attention went to my trapped left arm and instead of activating a canopy release assembly and deflating my chute, I started to unwrap the lines from my wrist. Unfortunately, the wind picked that moment to gust and instead of dragging me across the ground by my harness, my parachute stretched out the suspension lines wrapped around my wrist, extended my arm, and slowly pulled my shoulder out of socket.  

For years, that was my 10 when asked to describe my pain on a scale from 1 to 10 with 10 being the worst pain I’d ever felt. Later on when I first dislocated my other shoulder, it happened quickly and before it popped back into place, there was a moment when I marveled at how little it hurt compared to that other incident. I suppose there’s a lot of differing factors that went into these two experiences but the general mechanism of injury was the same, something tugging me by the wrist until my shoulder dislocated, so why the big difference in the pain levels? My personal theory is that it was the mental aspect that made the difference. In one situation, I was surprised, with no time to react or resist and in the other, I knew what was about to happen, tried to stop it from happening, but had to watch it slowly happen anyway. Now that I think of it, that would have hurt me if I’d watched it happen to someone else, so I’m sure the mental factor made up a lot of, if not the majority of the difference.

MS is like that………..What, too abrupt of a segue? This is a multiple sclerosis blog, so you knew I’d eventually make some sort of comparison, right? 

Like I was saying, MS is like that. Don’t misunderstand, it would still be bad (not to mention, really confusing) if I suddenly woke up like this one day, but having it slowly happen while I watch, knowing what’s happening, but powerless to stop it, feels worse somehow. For me, the parachute isn’t pulling anymore. No new lesions and no active ones in 5 years (Ocrevus?), but with no way to heal the damage (remyelinate), those demyelinated areas eventually die, and the disability continues to progress, even if the disease doesn’t. 

The parachute isn’t pulling anymore, but the shoulder won’t pop back in. Great….now I’ve depressed myself. 

Come on remyelination therapy.

*My home page picture was taken about 12 years after the events of this story. Note the big, gadgety watch. Joke’s on you parachute, I didn’t learn anything.

Categories
Life with multiple sclerosis

Fever

“Fever Dream”, by Nicole Mueller

So after last Monday’s post, I wasn’t getting any better and was tested Tuesday for Covid and sure enough, the test came back positive. I had monoclonal antibody (Regeneron) therapy Wednesday afternoon, had a fairly uneventful evening, ate dinner, and went to bed.

Sometime that night, the fever woke me. Passive immobility, flaccid limbs that don’t respond to the body’s commands, would have been a blessing compared to immobility characterized by actively flexed, painfully rigid muscles. Unable to move, or call for help, I just got to lay there, wet the bed, and have the kind of thoughts that only a fevered brain can produce. The predominant one of those being that the fever was causing permanent brain damage and that I would be in this state forever. In case you were wondering, there’s nothing good about laying helpless while imagining your ability burning away one neuron at a time. 

(Would it be too dramatic to say that’s just MS on a sped up timeline?)

Ok, enough with the horror story. We’re all sick and my wife was in a central location, so as to be able to tend to everyone better. She walked in for a periodic check, felt my head, got tylenol in me, and strategically placed ice packs around me for max cooling (we have 3 small boys, so we have lots of ice packs on hand). When the fever eased, she changed my clothes, sponge bathed me, and changed the bed while I was in it, sort of all at the same time. (Those are some of the real perks of being married to a nurse despite what nurse fan fiction would have you believe). 

Anyway, the fever never came back, but left me so exhausted I slept most of Thursday and have been in slow recovery mode since. 

That fever would have laid me low without MS, but my tale would have been one of staggering to the medicine cabinet for tylenol instead of laying helpless waiting for help. Right now, on my best days, I couldn’t live alone, but I don’t live alone, so it’s easy to forget my disabilities sometimes. Well, not “forget”, more like “not be forced to remember” all the time. An illness is the lemon juice in the paper cut that forces you to acknowledge its existence. My time having an invisible illness is long gone but there’s “visible” and “slapped in the face with it visible” and apparently I don’t like being slapped in the face.

I’ll be all the way better next week.