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.
Bridge across the Helmand River. Photo by Mohammed Omar Lemar
A long time ago……no, too depressing.
Some time back……no, too vague,
Once upon a time…..yep, that’ll do.
(Ahem) Once upon a time, I found myself with my ODA, sitting on a bridge over the Helmand River in Southern Afghanistan.
A pre-dawn raid was being conducted in a nearby village by another team and we were there to stop people from leaving the party early via the bridge. Due to the timing, we were forced to skip our morning coffee and as the sun rose and things calmed down, our Afghan Army counterparts broke out the necessary bits and began to brew up a pot of tea.
When it was finished, they offered us some and a teammate asked if it was safe to drink and did I want a cup? I replied that if it was made with bottled water or he saw it boiling, then it was safe and yes, I would very much like some morning caffeine. He went back over with the interpreter, who verified that it was indeed made with bottled water and returned with a cup for me.
As I sipped mine, I looked out over the river and watched two men washing a car in the shallows, a man and his son watering their goats by pushing the whole herd out onto a sandbar, and several women washing clothes while 3 children bathed nearby.
I was near the end of my cup, thinking that the tea had a rather earthy aftertaste and as I watched one of the goats lift it’s tail to relieve itself in the slow flowing water, I felt some grit between my teeth. The tea was sweetened with raw sugar, so an undisolved grain or two was to be expected, but I looked at the, now visible, bottom of my cup and upon examination, the grit was unmistakably sand, with a small pebble or two added in.
I waved the interpreter over and explained my concerns. He went back to ask our tea makers about the water quality. He was raised in Southern California and even though English wasn’t his first language, it was the one he slipped into as I heard him exclaim, “What??!! Oh, no!”.
Turns out that there was a bit of misunderstanding/misinterpretation on both sides. The water had come out of a bottle. An empty bottle that had been filled at the river’s edge, near the base of the bridge. It had also not been boiled because time was variable and the thought was that boiling would make it too hot to enjoy right away.
I dug through my bag and enjoyed a nice chaser of Ciprofloxacin and gave some to everybody that had drank the tea. Well, almost everybody. I didn’t get to everyone in time and that unfortunate soul had to suffer, both the wrath of the river and my less than stellar bedside manner, but that’s another story.
The point of my story today is to make an addition to a previous post about understanding the language and managing expectations between you and your healthcare team. The information you and your team share has to be clearly understood by both parties, as do any expectations. As the head of your own healthcare team, (which you should be, by the way), the responsibility falls on you.
Those of us with multiple sclerosis have, medications, therapies, assistive devices, etc, etc, to consider. It behooves you to understand and have a realistic view of the risks and/or benefits of all these.
For example, I have an intrathecal baclofen pump. The decision to have one implanted was not entered into lightly and was not made before weighing every expectation, possible benefit, and risk. In the end, it was this honest and, understood by all parties, “weighing” that made me decide to accept the risks and inconveniences in favor of the possibility of a better quality of life.
That’s an extreme example of both sides understanding the difference between bottled water and water from a bottle, but hopefully the point is made. When it comes to MS, make sure you understand what is being said to you and that what you’re saying is understood.
Before Special Forces, I was an FO (Forward Observer) in one of the Ranger Battalions. One of our primary missions was seizing airfields and since we lived on one, we had the opportunity to practice a lot. One particular evening, I exited the plane, said a prayer of thanks when my parachute opened (first jump….100th jump…I was always grateful), and prepared to land. It was not one of my better landings. My rucksack, at the end of its 15 foot lowering line, smacked into the concrete runway…..no, really…several other Rangers heard it “smack” and I smacked into the grass on the edge of the tarmac. I was fine, but when I collected my kit, a nice new piece of gear, in my ruck, that I had the “honor” of jumping in, had not survived the landing.
The next day the Company 1st Sergeant called me into his office and when I turned from closing the door behind me, I saw the broken piece of equipment sitting on his desk. He was known to smile on occasion, but this wasn’t one of those occasions.
A week earlier, he had dismissed that particular item as just another piece of FO nonsense, but as he shouted the name, manufacturer, and exact cost at me, I knew that he held it in higher regard than he had let on.
When he paused, I let him know that although I was a little sore, I was unhurt. He stared at me in silence, but his slightly opened mouth and the twitch below his left eye betrayed the fact that he was secretly glad I was ok. He even summoned my immediate supervisor and had him take me outside for an hour or so of vigorous exercise just to make sure. As the two of us left to assess my range of motion, the 1st Sergeant’s parting words to me were a resigned, almost awestruck, “If I gave you two ball bearings and told you to cross the street, you’d break one and lose the other.”.
Multiple sclerosis can be like that.
Ha! You were probably wondering how I was going to transition from rambling, boring story to something pertinent about MS.
Abruptly, apparently.
MS really is like that, in that many of its symptoms don’t seem to have a good option. Just a bad one, or a different, maybe equally bad one. Broken (dysfunctional), or lost.
Due to the effects of progressive multiple sclerosis, I have no use of my legs. Before I had my intrathecal baclofen pump implanted, spacticity kept my legs stiff, or sometimes spasming from hyperreflexivity. When they were stiff, I could pull myself to a standing position and spin slowly around into my wheelchair, like a clown tottering on stilts. Even if we call that “functional”, the spacticity was uncomfortable, to say the least, and really affected my sleep.
Once the pump was installed and the spacticity was controlled, my legs were limp. Comfortable, but even less useful. Sleeping through the night is nice and we are still adjusting the baclofen dose for maximum comfort with maximum function, but right now my legs are merely decorative.
So, dysfunctional, or lost? I chose lost, but I’d rather have functional. There wasn’t a third ball bearing. Break one and (or) lose the other, remember?
My abdomen was also affected by spacticity and now, by the baclofen pump. Unpredictable bowel and bladder function because core muscles are constantly clenched, or unpredictable function because everything is relaxed? I truly am better off relaxed; it’s the better choice of two bad ones, but it still isn’t the one I’d prefer.
When I could walk, I used a nerve/muscle stimulating device to counteract my foot drop. It did lift my foot, but it did it via electric stimulation, ie a shock. Plus, people would see the cuff on my leg and occassionaly assume I was under house arrest. (I guess I look like I should be….. at a minimum)
MS has choices…..just no good choices. Those are just a few examples. We, unfortunately, can’t choose to not have it. We’re just given our ball bearings and told to cross the street.
The worldwide, special operations community is pretty small and over the years, I’ve been priviledged to work with and learn from, units from all over the world. The job attracts a certain kind of person, so, the personalities are very similar despite, the different equipment, tactics, and languages.
When it comes to language barriers, the right interpreter is worth their weight in gold, because they don’t just directly translate the words, but also the idioms, cultural cues, and even subtle nuances of body language and gestures. As you might imagine, this is vitally important when interacting with someone whose language you don’t speak, but maybe it’s just as important when conversing in a language thought to be common to both parties.
For example, my native language is English but back in Afghanistan in 2006, I learned that when among troops from the UK, we might all be talking in English, but we weren’t speaking the same language.
I didn’t know then, but I know now, that when a British officer slaps his knees, says, “Right!”, and stands up, that means the meeting is over and the annoying young American medic, (“Who the devil invited him to this briefing anyway?”), needs to stop asking questions and “what iffing” everything to death.
Later, his Sergeant Major had a “quiet” word with me outside the briefing room. He was of Scottish descent and though his body language was unmistakable, there were parts of his spoken English that were a little less clear.
When he began, he used many of the same words I had often heard in my own Army (universal, I guess) and I had no doubt that he was very put out with me. Then, in two separate sentences, he called me a “weapon”, so I began to relax, knowing all was well and that he obviously thought I was sharp, keen, and maybe even a bit dangerous.
I later learned that he did not, in fact, think that I was sharp, or keen. He did probably think that I was dangerous, but only to myself if I should ever be left alone and unsupervised…….. with string.
There was something lost in translation.
Remember when I talked about your healthcare team? You know, the one that I think you should be the head of? You might all be talking in English (or your native language), but you are probably not speaking the same language. I’m not suggesting that you go take a course in medical terminology, Greek, or Latin, but I am suggesting that it is very…..very important that you and your healthcare provider(s) understand each other completely.
The burden is on all parties involved, but it’s your health, so maybe it should be even more important that you understand fully and are understood fully. Like I’ve said before, both my neurologists are wonderful and know more about multiple sclerosis than I ever will, but they don’t have MS. As much as I wish it wasn’t, my MS is mine. It is unique to me and I’m (unfortunately) the expert on it. If you are not already and are capable of it, you should be the expert on yours. This includes communicating clearly about medications (including the cost and availability), pain levels, emotional changes, cognitive changes, quality of life issues, mobility problems, sensations and the lack thereof, etc, etc, etc.
Speaking the same language is even more important when communicating with your non-neuro providers. My wheelchair makes my multiple sclerosis “visible”, or at least quickly “discoverable”, but yours may not be. Your family doctor may need to be reminded that your MS related choking/aspiration risk is why you’re concerned about getting a pneumonia vaccine. Your orthopedic doctor may need to be reminded that your weak grip or inability to raise that arm on your more affected side is probably just MS and not because of a torn anything. Your optometrist needs to know that you’re seeing double, or having eye pain most likely because of your MS. Your physical terrorist……..I mean therapist needs to know when you have MS fatigue and that it’s not the same as being tired, weak, or having a bad attitude. (Mine does, I’m just giving him a hard time).
The list of examples goes on and on. Don’t let anything related to your health and well being get lost in translation. Please be clear with your providers and ask for clarity when you need it.
For the record, several of my providers think I’m a “weapon”, but they’re clear about it.
Image from Medicus Health https://www.medicus-health.com/hardside-cooler-small-13-qt.html
What does this have to do with advocacy, or creativity? I promise there’s a reason for my image choice….other than being a pretty good attention grabber.
Some time back……I’ve learned that if I actually think about how far back it really was, it will unnecessarily depress me, so, like I was saying, some time back, I found myself with my team in Kandahar, Afghanistan trying to catch a flight back to Bagram. It was unscheduled and we kept getting told that everything going that evening was full and to check back later.
“Later” kept turning into even later and was on the verge of turning into never. This was probably because when the bored Airman at the desk told us that, “The Airforce is not a taxi service.”, a less than diplomatic teammate replied that that was exactly what it was. It was decided that he would no longer be sent into the terminal to inquire about flight availability and that I would perform the next “check back later”.
As luck would have it, I bumped into the Group veterinarian while waiting. He asked if I was going to Bagram, and when I said yes, he asked if I would carry a package there for him so it could be sent back to the states via courier. The package turned out to be a cooler, sealed and marked with a biohazard symbol, and contained tissue samples that were to be tested for anthrax. I was nothing if not helpul, so of course I was happy to carry a cooler full of what could be samples containing a potentially fatal disease. Months later, I would catch Q-fever while helping that same veterinarian vaccinate livestock as part of a civil affairs project and after that, I was way less inclined to be so helpful, but that’s another story.
No matter, it was soon my turn to go to the terminal desk and ask if there was any space available on a flight to Bagram. I absentmindedly set the cooler on the desk and after the Airman gave his automatic reply of “everything’s full”, he looked up, saw it in all of it’s sealed, stickered, glory and asked, “What’s that?”.
I was beyond tired at this point and forgot to add words like, “potential”, or “to be tested for” to my reply of, “anthrax samples”.
We got several rows to ourselves that had just, that moment, become available on a C-17. I even had an empty seat next to me to set the cooler on and sprawl into as I snoozed.
That story is an example of creative, albeit, accidental advocacy and I don’t recommend that particular method for either a real airport or a healthcare visit. In both cases, not only will you not get what you were after, but you will very possibly be tased and/or pepper sprayed, handcuffed, and arrested…..not necessarily in that order. The point is, sometimes you have to go the extra mile when advocating for yourself or someone who is unable to.
I am able to advocate for myself…..most of the time. My wife accompanies me to appointments whenever she can, to fill in things that I’ve forgotten*, or (maybe more importantly) to ask questions and add to the discussion from the perspective of a caregiver. I realize my situation may not be your situation, but there are things a caregiver, physical therapist, occupational therapist, etc, etc, could add to your next neurology visit. They may not be coming with you, but believe me, it’s worth asking them for their input.
I mentioned it in my last post, but if you haven’t already, take the time to learn about multiple sclerosis and whatever medication, treatment, therapy, device, and so on, that you’re asking about. It’s not about sounding smart, or using big words, although if you lead off with, “I saw on Facebook”, or “I googled______”, you should probably immediately follow it with something that shows you’ve looked a little deeper into it. It’s about sounding like you care enough about the answer to have put some effort into the question. If you don’t like the answer, be prepared to ask why that answer was given. If your provider can’t, or won’t explain the answer, it might be time to get a second opinion.
Yes, I’m aware there might not be options when it comes to providers. I get most of my care from the department of Veteran’s Affairs and like many taxpayer funded healthcare systems, you get what you get (my kids would add, “and you don’t pitch a fit”). I know I have been extremely fortunate in my neurology care, but I would like to think it’s at least partially due to my being a successful advocate for myself.
I don’t bully (I don’t even think I’m that assertive), I don’t manipulate, coerce, or even pitch a fit and I don’t suggest you do either. I do, however, suggest that you be your own advocate and that you advocate creatively if need be.
If MS is ever cured, it will be the result of someone asking the right question.
*There is some debate as to why I forget things. I say it’s because I have MS. My wife’s theory is that I’m getting ol……you know, it’s so far fetched and harmful to my pride, that I won’t mention it here.
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.
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.
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.
“See those trees over there? That’s where I’m going”. (Photo Credit: U.S. Army)
Going to airborne school was the first step, the initial price of admission, to everything else I wanted to do in the Army. I went toward the end of my first 6 months in and did it for almost 20 years, but I never liked jumping (parachuting). I’m not phobic, but I’ve always been a little scared of heights and falling and falling from heights and hitting the ground after falling from heights. You’d think I’d have gotten used to, if not outright comfortable with it, but you’d be wrong. For me, the 100th jump was the same as the 1st. I looked out the open door of the aircraft and thought, “This is insane!!! Don’t do it you fool!!”, and then did it anyway, cursing my arms and legs for taking me out the door instead of obeying my rational, common sense, (ok…maybe a little hysterical), brain.
They even sent me to jumpmaster school later on, where I learned to set up a drop zone, check other people’s parachutes before a jump, and send them out the door at the right time. They said it would make me more comfortable with jumping if I saw everything that went on behind the scenes. Instead, I learned everything that could go wrong, including some things that I’d never even considered before.
“Good news Ben, we’re sending you to jumpmaster school”.
“What?!, I hate jumping”.
“This will make you more comfortable with it”.
“No it won’t! This is a stupid idea, I don’t want to do it”.
“Too bad. You have to”.
(You know, come to think of it, that actually sums up a lot of my experience in the Army.)
All in all, the total of my experience was really pretty blase’. Aside from a few bruises, scrapes, and sore spots, the shoulder dislocation I wrote about a couple months ago was my only real parachuting injury. I only ever had one malfunction, but it happened at night, so other than thinking it was taking my chute an awful long time to open and hitting the ground before I lowered my rucksack, I didn’t even know about it until someone else told me and obviously it worked itself out, so it hardly counts. The only other thing that sticks out in my mind is the one and only time I landed in the trees.
There’s some solid math that goes into setting up a drop zone, but that math is based on a number of factors that can change, like aircraft speed, wind speed, etc, so you plan the release point as best you can and then, if necessary, make a real world adjustment off of the first group of jumpers. On this particular occasion, I was in that first group of test dummie…..I mean jumpers. Actually, the whole group didn’t even get out of the plane. It was pretty obvious that we were exiting too close to the treeline on Luzon drop zone, so the jumpmaster stopped our little procession out the door right after the guy behind me. Five of us got out the door. The first three landed at the edge of the trees and the last two, of which I was one, landed in them.
Photo from Google Maps 2021
I was already over the trees when my chute opened and I got control of my canopy. This was a round chute, but steerable….well, turnable anyway, and I steered hard for the grass. I may have even churned my legs like a cartoon character trying to run through the air back to the top of a cliff, but after a very short amount of time, it was very obvious what was about to happen, so I started to prepare for a tree landing.
Mom, I know you’re reading this and I’d like to say that I handled the inevitable with all the grace and poise you taught me as a child, but the shameful truth is, your little boy cursed a blue streak going into those trees. The good news, if there is any, is that my vile language was said/shrieked in a very rapid and high pitched voice, so if anyone heard it on the ground, all they heard was something along the lines of, “Eeeeeeeeeeeeeeeeeeeeeeeeeesheeeheeeee!!!!”
Despite my level of concern and even though I’d never used it before, I fell right back on the training we rehearsed before every jump. I kept my feet and knees tightly together, (on a scale of good to bad, straddling a tree branch is way down on the bad end) and rotated my hands and arms in front of my face just as my feet made contact with the trees. I took the top off of a small oak, where my canopy remained, then crashed into the side of a nearby pine and slid down its trunk to the ground. I got out of my harness and went to the edge of the treeline where I met a 1st Sergeant who asked if I was ok and helped me pull my parachute out of the tree.
“Was that you we heard from the other side of the drop zone?”
“Oh…..you heard my….war cry?”
“Well, we heard a cry, yes.”
In my customary, clumsy, fashion, I will now attempt to make a comparison to multiple sclerosis. When I was first diagnosed, I stood in the doorway, thought about how much I didn’t want to go through it and cursed my arms, legs, eyes, hands, etc for obeying the disease instead of my will. Once in the air, I tried to turn away and even did some desperate, comical antics to try to avoid what was coming. For the record, you do you. If it makes you feel better and it’s not dangerous, then who am I to criticize? You might be able to pedal your way through the air to a nice soft landing in the grass, I was not. Do me the same courtesy of not being critical please. My MS isn’t your MS. What works for you may not work for me and vice versa. Fortunately there are lessons from the MS community to fall back on and prepare you for crashing into the trees. If you know where to look, there may even be a sarcastic person or two to help you pull your chute out…..and hopefully not be too hard on you for cursing your uncontrollable misfortune as it happens.*
Aside from maybe a neurology residency, there is no MSmaster school, except the schooling that each of us puts ourselves through in our quest to understand this disease. MS education can be a two edged sword. Like the jumpmaster course, it has certainly let me know everything that can go wrong. It also gives me hope that things can go right. Hope may not be a course of action, or something to base planning on for most things, but for MS, it’s sometimes all we have.
A few years back…..(sigh)..ok, nearly two decades back, I was a student at the Special Forces medic course at Fort Bragg, North Carolina. As luck (well, my luck anyway) would have it, the field trauma portion took place during the winter months. In this section of the course, we were divided into small groups, and during each iteration, someone was the casualty, someone was the medic, someone was the medic’s helper and everyone else kind of stood around watching. You would stabilize the casualty at the scene then package and move him to a “field hospital”, where there was lots more equipment available and it was a whole ten degrees warmer than outside.
One fine day, there was a few inches of nice wet snow on the ground, with more falling. I was the medic and had treated my casualty under fire and moved him back to a covered position for more definitive care. I handed my helper a pair of shears and had him cut nearly all the casualty’s clothes off then rolled him onto a litter, covered him with a blanket (because I’m thoughtful like that), and continued to treat him in preparation for evac back to the tent.
When the first scoop of snow went down the back of my collar, it made me jump, but I figured it had fallen from a tree, so I ignored it and went on treating my patient, who was so into his role, he was even pretending to shiver. When the second scoop of snow started to slide down to the small of my back, I turned to see our instructor, holding a small shovel and glaring at me. He didn’t say anything, so I assumed he was just throwing a little added stress into the scenario and went back to work. In case you were wondering, a lump of snow sliding slowly down your spine to the top of your butt crack is a bit stressful.
The third scoop of snow hit me in the back of the neck with such force that for a second I thought he’d thrown the shovel along with it. When I turned, he was right there. “You still don’t get it.”, he growled. He pointed at the other guys, including the casualty, “All of you, get to the tent and warm up. You!”, he poked me in the chest with the shovel, “take off everything but your boots”.
When I was standing there in the snow, wearing just my boots, he said, “You put your mostly naked patient on a mesh litter, three inches above the snow and only bothered to cover the top half of him with a blanket. If this was real, he’d have slipped into hypothermia and you’d have lost the fight before you even started. Now to help you remember, here’s what’s going to happen”.
It was a pretty good lesson. Almost twenty years later, I can distinctly remember running naked in the snow, weaving through the trees past each of the other small groups, shouting, “Two sides!! My patient has two sides”!!
I may not have been known for my tender bedside manner, but none of my surviving patients can say that I ever let them get too cold.
The takeaway here, other than a cheap laugh at my humiliation, is that you and your multiple sclerosis have more than one side. You and your health care team (which you should be the head of, by the way) can’t neglect all your other sides to solely focus on MS. For example, I have high blood pressure and even though my MS making me more sedentary definitely contributes, I have to remember to look after that side of me. Likewise I can’t devote my complete focus to any one symptom, or aspect of my MS. Yes spacticity is my biggest and most annoying problem, but weak breathing muscles plus difficulty swallowing are sides of MS that shouldn’t be neglected.
My patient is me and I have more than one side. You do too. I don’t suggest hiring someone to shovel snow down your back, but try not to forget it.
I think I’ve mentioned before that I taught a little between trips overseas. Each Special Forces Group has a training detachment and I was assigned to my Group’s for a couple years, first as the detachment medic and later as an instructor for the various courses. If reality is the great humbler, then for me, anyway, teaching is a close second. This is probably because the most important thing I learned from being an instructor was how much I didn’t know. I learned a lot of other things by teaching, but the lesson I want to pass on to you today is what we called the 33% rule.
SFAUC was one of the courses I taught and one of the first blocks of instruction was a deliberate load process for both carbine and pistol. This is the slow and…….deliberate set of steps you’d take to not only ready your equipment, but check its functionality. When your life depends on it, is not the time to discover that something is loose, needs new batteries, etc. Even though it’s separate from the fast reload you’d do in the heat of the moment, all the motions are the same, giving you one last muscle memory rehearsal before showtime.
I usually gave the safety brief first thing in the morning and since it was short and the deliberate load sequence was next, it was only natural that I continue straight to it. I would talk through the steps, giving a reason for each, because SF guys always seem to want to know why they’re doing something. Then I would demonstrate the process slowly, talking through each step again. Finally, I would demonstrate it at normal speed while just saying the steps. After that, we’d walk over to the firing line, the head instructor, over a PA system, would give the command to perform a deliberate load and begin calling out the steps, ……….and Every. Single. Student. Would. Do. Most. Of. It. Wrong.
The first time I observed this, I shook my head in utter confoundment and remarked to a more senior instructor, “I don’t understand. I just went over this five minutes ago. That guy did steps 1-3 right, but none of the rest, that one only got the last 3 right, and that one screwed up everything but the middle ”.
“Oh yeah”, he told me. “That’s the 33% rule. See, only 33% of the class is paying attention to you at any one time and it’s never the same 33% at the same time. Some only hear the first part, some only hear the last part and some only catch the middle ”.
“Wait, that’s only 99%”.
“Ah, yes, that 1% that’s left…….they weren’t listening to a word you said”.
Unbeknownst to me, training elite soldiers helped prepare me for a particularly frustrating part of MS; explaining it to others. No, my past experiences don’t help me explain it any better, but it’s some comfort to understand why a given person only absorbed 33% of my explanation.
Come to think of it, it’s flattering, actually. I’ve only known I had MS since 2014 and I don’t begin to know or understand 100% of it. Throw in the individual variability of it; my MS is not the same as yours, as her’s…etc and it’s downright impressive that someone who asked, grasped even 33% of my rambling explanation.
As for the remaining 1%, I’ve reached a point where I think I can gauge whether someone’s actually interested, or if they’re just conforming to the societal norm of saying something polite. I get why you feel that you should say something, or feel like it would be rude not to ask a question. Please understand though, if you ask a 1% question, you will get a 1% answer.
