Tag: special operations

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Background Life with multiple sclerosis

Knowing Your Limitations

Photo by Arcade Snacks https://www.arcadesnacks.com/product/gummy-bears-12-flavor-2/

Believe it or not, I was young and foolish once. Now, I’m just ol…..ol….. not quite as young, and foolish. One out of two isn’t bad, right?

Thanks mainly to the grace of God, my various acts of foolishness were not fatal, or even very painful. My shenanigans were mostly of the playful, harmless, valuable life lesson teaching, variety. One of which I will now attempt to twist into a lesson about multiple sclerosis.

If the photo above didn’t clue you in, this lesson involves gummy bears. Not the sugar free ones. If that were the case, even though I’m sure there’s many a valuable lesson there, I wouldn’t be (as) inclined to share. Not sure what I mean? Here’s a link, because I shan’t elaborate.

Back in my days of being an FO in 1st Ranger Battalion, my small detachment would often travel from our little airfield in Savannah, Georgia, to locations where we could practice our skillset. On a number of these trips, we slept out at the range but made daily trips to the nearest PX for supplies. These supplies normally consisted of caffeinated beverages, assorted junk food, and once, just once, a five pound bag of gummy bears.

There were seven of us on that trip so that worked out to just under 3/4 of a pound of bears each eaten over the course of three days. At the time, it seemed like a good, cost effective, and completely doable plan, right?

Wrong.

It turns out that no human, (keep in mind we were all in our twenties at the time), can consume that weight of gummy bears in three day’s time. By the second day, just mentioning the words “gummy bears”, would earn you a string of harsh words and a round of vigorous exercise. By the third day, we still had approximately half the bag and were flicking them at road signs, etc on the long drive home.

We were young, athletic, and normally could eat so much that buffet owners locked their establishment’s doors and hid in fear. However, when it came to vast quantities of gelled corn syrup, we apparently did not know our limitations.

Do you know yours? Do you abide by them? For me, living within the limitations brought on by MS is the harder and maybe more important part. Maybe that’s because in order to live within those limitations, we have to admit that they exist; both to ourselves and to others.

Once that’s done, the burden to work around and/or accomodate those limitations falls on everyone involved. Your real friends won’t mind, but they might look to you to admit you need an accomodation before offerring one.

Multiple sclerosis, because it is consistently inconsistent, complicates this by making my limitations different than they were this morning, yesterday, last week. That can make knowing and admitting to limitations extra hard. Doable, but hard and I’m not always successful.

If you have the perfect solution to adapting to a constantly evolving set of limitations, let me know, because, while it isn’t exactly a five pound bag of gummy bears, it is hard to swallow sometimes.

Categories
Background Life with multiple sclerosis

Pride & Practicality

I have literally texted this photo across the house to my wife when I needed help in the shower.

I have been struggling to write this for months. I know what I want to say, but I can’t get it down in writing in a way that makes sense…..not even to me. It’s not an uncomfortable, or even embarrassing topic. It’s not difficult for me to talk about, but it is difficult for me to put into words. Does that ever happen to anybody else?

I’m pretty sure I’ve mentioned before that I use a wheelchair. “Use” a wheelchair…….that somehow sounds better than, “confined to” a wheelchair, or even, “in” a wheelchair for some reason. Semantics aside, I do “use” one, because I can’t walk. I can stand for very short amounts of time if I have something sturdy to hold onto and I do have limited movement in my feet and legs, but I cannot take a single step. My hands and arms, torso, eyes……….ok, everything from head to toe, is affected to some degree by multiple sclerosis and I need help, both mechanical and personal, in order to get through every day.

I’m not telling you that to depress you, or (gag!) elicit pity, but to make a somewhat confusing (to me anyway), amateurish point about pride, dignity, and practicality.

Back when I was a student at the Special Forces medic course, we often joked that having to constantly be a “patient” for each other erased whatever sense of pride and dignity we might have had before. If you were in a more senior class and happened to see a newer class walking down one of the hallways, staring at the floor, not speaking to, or looking at each other, you knew that they had just passed the hurdle of prostate check day, testicular exam day, etc, and that their senses of pride/dignity had taken an abrupt jolt. You get over it, of course. Eventually, you have cut the clothes off all of your fellow classmates, have poked each of them with needles, gloved fingers, and all manner of uncomfortable tubes, and vice versa and what you once considered undignified, isn’t anymore. So what, if anything changed?

Here are the “book” definitions of pride and dignity.

pride/prīd/noun

1.a feeling of deep pleasure or satisfaction derived from one’s own achievements, the achievements of those with whom one is closely associated, or from qualities or possessions that are widely admired.

dig·ni·ty/ˈdiɡnədē/noun

1.the state or quality of being worthy of honor or respect.”a man of dignity and unbending principle”

By those definitions, I actually left the medic course with more of each than I started with. Did my concept, or definition of these things change, did I realize that my personal list of things that I once thought were beneath me, weren’t, or was it just my practical side showing through?

prac·ti·cal·i·ty/ˌpraktəˈkalədē/noun

1.the quality or state of being practical.

2.the aspects of a situation that involve the actual doing or experience of something rather than theories or ideas.

If that’s the case, does that mean that I’ve decided that something is undignified, but the practical thing is to do it anyway, or does my practicality decide certain things don’t belong in the undignified category and removes them from the list? The short answer is, I don’t know. If you do, chime in with a comment.

What I do know is that my pride and dignity feel intact, but………different(?) than they were before multiple sclerosis. Did they change, or did I change because of practicality?

For example, I can put my own shoes on, but it takes me 5-10 minutes and expends energy that I need for transfering to my wheelchair, the car, and so on. My wife can slip both shoes on in well under a minute, so especially when we have places to be, this is, by far, the practical thing to do. It’s not undignified, but having someone do something for me that I had done since childhood was tough at first. Since I snapped the words, “I can do it myself!”, more than once, it was probably my pride that needed to shift rather than dignity. Maybe that means pride changes while dignity doesn’t. Do I just confuse the two and practicality is what eventually separates them?

More often than not, I need help in the shower. Again, I can wash myself, but it’s way more practical, goes faster, uses less energy, etc, if I have help. My wife is my caregiver and takes great care of me. We’ve been married almost 13 years and have three kids together, so it’s a cinch to say that she’s seen me naked and/or vulnerable before. Why then is this still a difficult area to ask for, or accept help with? Is it that, “I can do it myself!”, pride rearing its head again, or is it dignity this time? Is that why being practical about it doesn’t negate it all the way? Does practicality only work on pride? Is it that I feel like there’s a big difference between asking for the 30 seconds it takes to put shoes on and a 30 minute shower, or because I (and/or my dignity) want to keep the difference between wife and caregiver in place?

Hmm, I got some of it down in writing, but feel like I barely scratched the surface. I feel like I understand a little more, but still don’t know anything. If you thought this column was going to have all the answers, get used to disappointment. I thought learning about the physiology of MS was going to be the hard part. Turns out, an “I don’t know” answer there is a lot easier to handle.

Categories
Background Life with multiple sclerosis

The Best Laid Plans

Photo from: https://www.southcom.mil/MEDIA/IMAGERY/igphoto/2001633599/

You may remember last August when I wrote a post about a multiple sclerosis lesson learned from an exercise with the 160th SOAR. Well, it turns out that there were at least two other lessons learned on a different night during that same multi-day exercise. In the interest of time, rather than rehashing all the links to the military specific terms, I’ll simply link back to the original post.

On this particular evening, my team, along with the others in the company would fast rope into a site on Santa Rosa Island, Florida. For those that don’t know, fast roping is where you lower a thick, polyester, rope from a hovering helicopter and slide down it like a fireman’s pole. Well, maybe not exactly like a fireman’s pole. The rope isn’t smooth and you pinch it between your feet rather than between your thighs, since the friction and resulting heat is better managed with the soles of your boots than with your crotch. I would think it would be obvious, but you also grab it tightly with your hands and that same friction and heat makes sturdy gloves an absolute necessity.

Photo from: https://www.marlowropes.com/product/marlow-fast-roping-gloves

Like all things that might get you broken, or worse, it is army doctrine to rehearse it before you do it live. For fast roping, this means 2 daylight and 2 night reheasals, each consisting of 1 iteration without equipment and 1 with. The plan was to hover and fast rope from about 10 feet, so that’s what we rehearshed.

I always wear gloves anyway and the oversized pair of thick leather ones over them made anything close to fine motor skills impossible. Besides that, they were a pain to strip off and stow quickly once I was on the ground, so I decided to do without them. My rationale was this; my regular working gloves had a nice thick palm of synthetic leather and it was only going to be a 10 foot slide, so the heat couldn’t possibly build up that much. I tested my theory twice during the rehearsals and though some heat got through, the thinner gloves seemed to work well. I congratulated myself on such a well thought out and tested plan and when it was time for the actual mission, I left the thick, clumsy gloves behind.

I was the fast rope master that night and when we got to our spot, the crew chief on the helicopter signalled me not to kick the rope out the door because something wasn’t right with our planned insertion point and we were heading to the alternate. When we were there, he gave me the go ahead to lower the rope out and start sending guys out. We were using a 60 foot rope and it seemed like there was a lot less of it on the white, gulf coast, sand below than there had been during rehearsals. No matter, I sent the guys, then grabbed the rope and went out last. Very quickly…..probably right after the 10 foot point of the slide, I realized we were a bit higher, (4 times higher as it turned out), and that the heat from sliding on the rope increased exponentially with each foot past 10 feet.

What I found out later was that the alternate insertion point was over loose sand rather than the paved intersection of the primary and the increase in height was to keep us all from getting completely engulfed by blowing sand. I didn’t know that then, but what I did discover quickly was that synthetic leather doesn’t protect like real leather, burned hands have less dexterity than those encumbered by thick, awkward gloves, and my thinner, cool guy, gloves were completely destroyed by the flaws in my best laid plan.

Multiple sclerosis, because of it’s inconsistent nature, defies even the most careful, (subjective…I know), plans too. The plans I made for an annoying limp didn’t work out for walking with a cane and likewise, the plans for life with a cane, or walker didn’t work out for a wheelchair. Like the example in my tale of woe above, the problems increase exponentially as the effects of MS get worse. Something as routine as going to the grocery store becomes multiple times more difficult to do with each new link in the worsening mobility chain. This is just one example. Others include getting dressed, taking a shower, making a meal, and on and on and on.

The other big lesson for those with MS is that I didn’t seek out the advice of more senior people. At the time of the incident above, I was considered a senior person (mostly by myself) and it was assumed that I knew what I was doing, so I didn’t ask and no one volunteered that I was about to make a really stupid mistake.

I’ve known I had MS for almost 8 years now. It’s progressed very quickly, but that’s still just a drop in the bucket for others out there and I should have asked them early on about my best laid plans. I’d like to think I know a lot about it, but there’s still so much to learn and sometimes I need other, wiser, people to tell me that I’m about to make a dumb mistake.

I hope I listen.

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.