Tag: ranger

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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

Ball Bearings

Not my hand Image from monkeyknuts.com

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.

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

Friends And Enemies

“Pogo”, by Walt Kelly, 1971.

One of the worst mistakes you can make if you have MS, (so, of course, I make it a lot), is to compare your MS to someone else’s. Everybody’s experience is so different that sometimes I wonder if it’s even the same disease. Yes, I used “experience” deliberately, because I don’t just mean symptoms, or ability. I’m including how you’re perceived, treated, talked to, and so on.

I have an aggressive form of progressive multiple sclerosis, so it’s kind of hard to ever refer to myself as “fortunate”. In many ways, though, I suppose I am……….(far too lazy to search a thesaurus for an alternative word apparently)….so…..not unfortunate?

I don’t have an invisible illness, well not anymore and if I did, it wasn’t for long, because my time between a barely noticeable limp and a wheelchair was pretty short. It is very obvious that something is wrong with me, so I don’t get questioned for using a handicapped parking space, etc. Besides the handicapped placard, I have disabled veteran license plates, so usually, the only thing I find myself explaining is that I am not wounded, I just have a disabling disease.

I don’t really deal with questioning looks, or second guesses either; not the way other people with MS do and not from people that matter. That sounded harsh, but you know what I mean, right? Strangers may occasionaly look at me and wonder if I gave up too easily, or am not trying hard enough, but because of my background in Special Forces and the Rangers, family, friends, or aquaintances assume that I’m giving it my all. For the record, they’d be wrong sometimes, but still, they normally give me the benefit of the doubt. Really, the only person who second guesses me, or acts like I’m an inconvenience…….is…..me. I am my own worst enemy.

This past holiday season really drove the point home. At two Thanksgiving gatherings, family stepped in and made it possible for me to enter their homes in my wheelchair and be included. Later, right before Christmas, with the help of several friends, I got to go to a party that I seriously considered not going to because I was afraid of being a burden.

Am I a burden? In the sense that extra things had to be done to accomodate my disability…..yes, I suppose I am, but I’m starting to realize that I’m the only one who is afraid of being a burden, or inconvenience. At this point, anyone who didn’t want to be around me is long gone and I need to stop reflexively apologizing and show genuine gratitude for the people who want my company enough to go the extra mile to have it.

I don’t like being disabled by multiple sclerosis, but I am. I don’t like being treated like I’m disabled either. Maybe it’s just semantics, but my friends and family don’t. They somehow, accomodate my disabilities while treating me like……me. Or, to put it another way, they treat me like a loved one with a disability, but not like a disabled person. Hmm, I suppose I am fortunate after all.

I’m the one who treats me like I’m disabled and for some reason, the hardest one to convince to stop doing so.

I have met the enemy and he is me.

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.