Tag: special forces

Categories
Life with multiple sclerosis

Shouldering The Burden

It’s mine. So no copyright disclaimer needed.

So, I haven’t written in a couple weeks.

I started a Valentine’s Day post, but couldn’t make it work. I was trying to be funny about being diagnosed 8 years ago on Valentine’s Day, but it ended up as kind of a dark post and that wasn’t what I wanted. I’m sure there will be plenty of those, but I didn’t want to go that route on the 14th.

Next, I had a swallowing study and a visit with the speech therapist. Yeah, multiple sclerosis doesn’t stop with arm and leg muscles, so I’ve been choking more and more and having a weak cough doesn’t help clear my airway when I aspirate stuff. Of course I didn’t choke once during the barium swallow, so other than the barium drinks and coated snacks, including half of a cookie, it wasn’t a super productive experience. I did get a little device to strengthen my expiratory muscles so I can cough, etc forcefully. It’s a nifty little exhalation resistance device and seems to be working well. If it made trumpet, slide whistle, or whoopee cushion sounds (I have 3 little boys), it would be just about perfect.

A couple days later it was MRI time. My annual brain one (no new or active lesions) and both shoulders (not great reports, but I’ll get to that). I’m not claustrophobic and my hearing isn’t great, so as long as I have well placed ear plugs, I just go to sleep in there. I had planned on one long scan (and nap), but for a variety of reasons, they treated each body part as if it belonged to a different person and I had 3 scans with about 30 minutes in between.

My implanted baclofen pump is MRI safe and shuts itself off when it detects the magnetic field, then back on 10 minutes after it no longer detects it. Between MRI 1 and 2, I stayed in the MRI suite and apparently didn’t get far enough away, so the pump stayed off long enough to set off the alarm. It was the 2 tone, critical alarm, which sounds a bit like a European ambulance, and coincidentally, like any number of hospital alarms, so I didn’t even notice until I left to grab lunch before MRI 3. I was actually in the restroom when I realized that the beeping was coming from me. I noted the time and sure enough, it went off again 10 minutes later and 10 minutes after that and so on.

One of those times was in an elevator and the other passengers started to look around for the source of what was obviously an alarm before all turning to look at me. No one said anything, but you know it was just the embarrassment of having to ask if I was beeping that stopped them. I felt like a person compelled by shame to confess to farting on an elevator, “OK, it was me! That awful sound came out of me!!”.

None of us said anything, but I probably looked guilty enough that everyone knew it anyway. The perfect scenario would have been if someone had worked up the courage to ask and I had the wherewithal to stare back,wide eyed, and hoarsely whisper/croak, “Oh no!! Run!! Save yourselves!!”.

Then again, I bet the penalty for causing a panic on a Veteran’s Affairs hospital elevator is pretty stiff.

I haven’t completely lost my touch. The MRI techs were a little nervous about my pump anyway, so when I told them the alarm was going off, there was a little hand wringing and they wanted to know if they should do something, or call someone. I kept a nice, straight face and told them I was meeting the pump rep after the 3rd MRI anyway (standard procedure) and probably wouldn’t explode for an hour at least. This didn’t ease their minds at all, but my smirk was probably big enough to be seen on my head/brain scan.

Both are MRI images of my right shoulder

OK, I’ve digressed enough. My shoulders are not good….well the right one in particular. Both have been dislocated in the past, the left, just once, in the parachute incident I wrote about before and the right about 3 times, in way less exciting incidents. I knew the right one was getting worse but ignored it and had my bad knee and ankle fixed instead because they were my more important, weight bearing, joints…..right?

MS, thy name is irony,……or maybe mean spirited coincidence? I’m not sure how that works, but I am sure that turning my arms into my weight bearing, wheelchair using, transferring, etc, limbs, is just making my shoulder problems worse. I’ll post the MRI report at the end of this post, but the impression I get is that we’re past the point of more rehab and probably past the point of steroid injections too.

I’m afraid of what the ortho doc is going to say, but I guess it’s because I know what he, or she is going to say. I really can’t afford to let this get much worse, but I dread being down to one fully functional limb while I recover from whatever the “fix” is. I’m hoping it’s a minimally invasive arthroscopic clean out, debridment, cartilage shaving/planing surgery with no weeks of immobilization. One that I can move and rehab as much as I can stand after. I know “hope” isn’t a course of action, but I’m daring to hope anyway.

Here’s the report. Maybe I’m worried about nothing, but it doesn’t sound very cheery to me.

Findings:


Marrow: There is no bone contusion or fracture.


Acromioclavicular joint: There are severe degenerative
hypertrophic changes at the acromioclavicular joint with cystic change in the distal clavicle at the joint and bulky osteophytes extending inferiorly from the joint.


Subacromial and subdeltoid space: No significant collection of fluid in the subacromial or subdeltoid space.


Rotator cuff tendons: Tendinopathy supraspinatus tendon with low grade undersurface partial tear at the insertion site
posteriorly. Mild tendinopathy infraspinatus tendon. The
subscapularis tendon and teres minor tendon are unremarkable.


Rotator cuff muscles: Unremarkable. No atrophy or edema.


Glenoid labrum: There is a 0.6 x 0.7 x 0.9 cm para labral cyst
associated with the posterior superior glenoid labrum consistent with underlying labral tear. Possible labral tear at the junction of the anterior inferior labrum at the site of a probable small full-thickness cartilage defect.


Long head biceps tendon: Intact. Small amount of fluid within the extra-articular tendon sheath which could represent mild tenosynovitis or physiologic medication with small glenohumeral joint effusion present. Additionally, there small loose bodies/debris within the tendon sheath of the extra-articular long head biceps tendon.


Glenohumeral joint: There is mild thinning and irregularity of the glenoid cartilage with small full-thickness cartilage defect suspected at the anterior inferior glenoid labral junction. Additionally, there is full-thickness cartilage loss
anterior-inferior glenoid. There are multiple loose bodies within the inferior glenohumeral recess, the largest measuring roughly 1.2 x 0.8 x 0.6 cm. Small loose bodies are seen anterior to the glenoid, posterior to the subscapularis tendon. Additionally, there is a loose body within the subscapular recess measuring roughly 1 x 0.7 x 0.7 cm in diameter.


Incidental findings: None.

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
Life with multiple sclerosis

New Kitchen Appliances

Not my kitchen.
Image courtesy of geappliances.com

We had a small leak under the house that managed to spray a thin stream of water upward in just the right spot to soak a section of subfloor and buckle the overlying hardwood floor in our kitchen. This led to our kitchen floor being replaced, which meant that all the cabinets and appliances had to come out of the kitchen. That would have been bad enough, but since the majority of the bottom floor in our house is hardwood, nearly everything had to be moved out, including us, when they sanded and restained/finished all the hardwood for a nice uniform repair. The silver lining is, we got to make some changes to the kitchen, including improving accessibility. Among other things, these changes involved replacing our aging appliances and for the first time in our lives, we found ourselves researching and considering handicapped friendly appliance options.

Didn’t know there were such things? Don’t be ashamed. Until a month ago, neither did I. Many countries have laws and/or guidelines in place for something to be labled accessible. In the US, it’s the Americans With Disabilities Act, or ADA and apparently there are criteria that make appliances ADA compliant. Most of the criteria are things that I hadn’t considered and found myself saying things like, “Wow, that makes sense.” and, “Hmm, I never would have thought about that.” over and over when I looked up ADA compliant appliances.

I won’t try to copy verbatim the handicapped criteria or endorse any particular brand, since I’m too new at this to really have a valid opinion, but I will provide a link to the website that I found most useful when looking for what exactly makes an appliance handicapped accessible/ADA compliant.

(Full disclosure, none of my new appliances are this particular brand, but their site does a really good job explaining the criteria .)

https://www.geappliances.com/ge/ada-compliant/

I use a wheelchair full time and have significant arm and hand weakness. I’ve learned two things so far that are specific to my situation that I’ll pass on to anyone in a similar one. First, use the seatbelt, etc if your chair has one. An accessible oven/range minimizes any reaching you have to do, but there is still some bending and extending involved and being secured to your chair is super helpful, especially if you have balance issues. No, I haven’t fallen into the oven or burned myself yet and I don’t intend to either.

Second, consider your angles. My wheelchair elevates, so I can rise to the height needed so I don’t have to reach overhead and risk dropping things on myself. That may not be an option for you, but consider which angle you approach the stove, refrigerator, etc. For example, my strong side is my left, so I tend to angle that side into the appliance, rather than approach it head on, or from the right. There’s a little trial and error to get this right for the individual appliance or task.

I have always liked being in the kitchen, cooking and especially baking and, in all modesty, I was pretty good at it before multiple sclerosis started taking my abilities. I know my limitations and I grudgingly accept them, I guess, but that doesn’t mean I like them, or that I’m not constantly looking for ways around them. It’s nice that there are appliance options that make it easier to get around some of these limitations.

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

Walking Dreams

Photo: harshvardhanroy/Getty Images/iStockphoto

Multiple sclerosis is not very conducive to a good night’s sleep. Spacticity was my biggest problem until the baclofen pump relaxed my spasms, rigid muscles, and hyper-reflexivity. I was essentially a limp dishrag immediately after the pump implant, but the relief from spacticity and actually being able to sleep through the night was so amazing that even if I’d never improved after, (I did), it still would be worth it. 

I don’t mean to imply that spacticity was the only obstacle, just the biggest. I still have an MS bladder that defies even the best planning and occasionally, whatever the opposite of fatigue is, wakes me up at odd hours and keeps me awake.If MS could just be a little more considerate and schedule fatigue during evening hours only, that would be great. It is, however, anything but considerate and accommodating.  

There are a lot of perks of being able to sleep soundly again but the one I want to talk about today is dreaming. I dreamed when spacticity was at its worst, but very inconsistently and I rarely had a complete, undisturbed dream, or could remember my dreams in any sort of detail. Usually, when I dream now, (or pre-MS), I’m aware that I’m dreaming, but I can’t direct the action or otherwise control it………..so lucid? Not lucid? Lucid…ish? Meh, it doesn’t really matter. What does matter (to me, anyway) is that I sometimes dream about myself with MS. Do you?

Most of my dreams are of the…..normal(?) variety. Being late for school (even though I haven’t been to school in decades), being unprepared for a test, or a recurring dream of having an apartment in another city with important things in it that I’ve forgotten to pay the rent on, etc, etc. Like I said, most of the time I’m aware I’m dreaming but it’s like I’m watching it as a member of the audience, shouting out advice, or insisting that the main character would never do that, or let that happen. 

My multiple sclerosis dreams seem to come in three flavors. Sometimes I’m surprised by my disability, (what I was once). I’ll be behaving normally in the dream, walking, running, that sort of pre-MS stuff, when I’m somehow reminded that I shouldn’t be able to do that (maybe I hear myself shouting from the audience) and like Cinderella at the ball, I struggle back to my wheelchair before the clock strikes midnight. It’s a little odd that my wheelchair is even there in a walking dream, but such is the nature of my, “Surprise!!, you’re crippled.” dreams.

Sometimes I dream about myself having MS and being aware that I have it, (what I am now). I dream about myself in a wheelchair, being fatigued, or dealing with uncooperative limbs. I even dreamed recently about being in a small fishing boat in my wheelchair and yelling from the audience, “What a load of crap. How did you even get the chair on that boat? Is it even strapped down? Just wake up! This is completely unrealistic!”.

Occasionally, I dream of getting better, (what I want to happen). One dream that sticks in my mind is of me walking on a trail in the woods using two trekking poles. In the dream, I’m aware that I have MS, but am recovering somehow, (the dream is a little vague about the “how” part). I stumble on the trail and run a few steps to keep from falling and then keep running slowly and awkwardly, laughing almost hysterically at the return of an ability that had once been taken for granted. 

I know they’re just dreams and I treat them as such. Walking, much less running, may never be in the cards for me. As long as they keep it reasonably realistic most of the time, I’m ok with my dreams hoping for the future too. I mean, it’s my unspoken, subconscious hope after all, right?

Categories
Background Life with multiple sclerosis

Hitting The Trees

“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.    

*https://mskurmudgeonskorner.com/

Categories
Life with multiple sclerosis

MS Ego

© Stocklib / prazis

A couple posts ago I mentioned that, I had taught a little in the past, had learned a lot from teaching (mostly how much I didn’t know), and introduced you to the 33% rule. This week, I will try (in my clumsy, rambling way) to pass on another important lesson that I picked up as an instructor of elite soldiers; dealing with egos. That’s egos with an “s”, not just because there was more than one student, but because I have one to manage as well.

There are probably entire volumes devoted to ego, pride, arrogance, dignity, etc, the similarities and differences between them, and the fine line(s) that separate one from another. I won’t get into all that here since I doubt I understand it all myself and my opinions on the matter are exactly that. I will opine that there is a difference between being justifiably proud of an accomplishment and being egotistical. In my opinion, pride can be questioned, (I know what I know, but I don’t know everything and can always learn something new), while ego can’t.

The acronyms, (yes, I know the difference between an acronym and an abbreviation), for all the courses I helped teach began with the letter “S”, which stood for “Special”……..(there’s a crude joke there somewhere, but I’m going to be the bigger person). Special, or elite people tend to have pride in their accomplishments, but sometimes even the most justifiable pride, and/or self confidence can drift into ego territory.

Early on in my days as an instructor I went to the same senior instructor who introduced me to the 33% rule to ask his advice on how to convince a student that he wasn’t doing something the “right” way. He observed the student for a moment and then commented to me, “That guy is both fast and accurate, which is the end goal here. Is the way he reaches that goal unsafe, or is it just not the way you do it?”.

On the opposite side of the coin, I’d sometimes get a student who was putting rounds everywhere on the target except the middle and I’d make what I thought was a helpful suggestion, only to be met with, “I know what I’m doing! I’ve been shooting this way for longer than you’ve been in the Army!”.

This is where you want to say something like, “Well, it looks like you’ve been doing it wrong all those years, because you suck.”, but you don’t. Instead, you get another instructor to drop the same casual hint that you just did, but maybe in a different way, or you just say something along the lines of, “Chuck Norris does it like this.”.

This is the part of the post where I switch gears back to multiple sclerosis. I really do try to make it a smooth transition, but it’s hard sometimes and probably looks like I’m shifting without a clutch. In this post, what I’m trying to transition to is that while I wouldn’t lump it into the elite category (rare, sure, but not elite) it’s very possible to have an MS ego too……I know I do.

You’d think I’d know better, but apparently I don’t. I’ve known I had MS since 2014, but in that short time, I still sometimes think that the way I do things is the only way and I’m not open to alternate suggestions. For example, I’ve only been transferring myself from wheelchair to recliner, to car seat, and so on, for 10, or so months. There is only the slimmest of possibilities that I have the technique mastered, but I’ll be the first to say that this is the way I’ve always done it.

My ability changes by the hour, day, temperature, my temperment, etc, and it is never the same as someone else’s, so I can neither demand that someone do things my way, nor think that their way is going to work for me. I do tend to give more weight to the advice of other people with MS, but I have learned that if anyone insists that their way is the only way, then they’re probably selling something.

Sticking with the teaching theme; on the opposite side, our “instructors”, i.e. loved ones, caregivers, therapists, healthcare providers, etc, also have to recognize that we can both have MS egos. Is what I’m doing wrong because it’s unsafe, or because it’s not the way you’d do it? Sometimes, just having a different “instructor” tell you the same thing at a different time really does make a difference. I respect my neurologist because he never acts like he knows everything (he knows way more than I do) and he never pretends that MS is a one size fits all disease. I respect my physical therapists for the same reasons. And yes, my darling wife and caregiver I respect you too. I’m probably going to regret this, but there is a chance that you also know more than I do.

Oh, and to the lady at the grocery store who used to know someone with MS just like me and offered the unsolicted advice about “trying harder” and “mind over matter”. My “mind” is full of holes, so it does matter and in this case, I can safely say that no matter how long you’ve been doing it, your technique is wrong because you suck at it.

If you are looking for practical, realistic (but not always sunny and happy…because MS isn’t) talk about MS, join us over at Kurmudgeon’s Korner.

http://mskurmudgeonskorner.com/

It’s the greatest group you never wanted to join.

Categories
Background Life with multiple sclerosis

Two Sides

Image from defense.gov

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.

Categories
Life with multiple sclerosis

MSbidextrous

“Drawing Hands”, Litograph by M.C. Escher, 1948.

I am, by nature, right handed, or right hand dominant would be the better term, I guess, since I’ve almost always used both hands. At some point in my childhood, it occured to me that it was a bit odd for people to have one hand that did everything and one that just sort of hung around like an awkward kid waiting to get picked for a team.“Let’s see, we need another hand to balance out the body. We’ve already got one that writes, draws, throws, holds the silverware, swings a hammer, and so on. (Sigh) Come on over here kid. Welcome to the team, just stay over there out of the way and we’ll call you if we need a nail held or something”.

That’s not to imply that I ever used both hands equally; just that I made a conscious effort to employ my non-dominant one. For example, I never took the time to learn to write legibly with my left hand, (some would say I never did with my right one either), but I regularly ate, drank, opened doors, etc with it so as to keep it useful.

This came in handy (pun 100% intended) in the SFAUC instructor job I talked about last week. All the instructors had to know how to competently use their non-dominant hand because we regularly made students perform tasks with theirs. Should your dominant hand/arm be out of action, the time to figure out how to shoot, reload, put on a tourniquet, etc with your other one is not the moment when your life depends on it.

Since there were almost always a few left handed students in every class, all military weapons are made for right handers, and we were usually short on left handed instructors, I put some extra effort into learning to shoot (somewhat naturally and competently), left handed so that I could demonstrate for the lefties as well as the righties. I must have faked it pretty well, because a visiting instructor from another group pulled me aside one day and remarked, “You can shoot with either hand? I didn’t know you were amphibious.”.

Really, in the grand scheme of things, that wasn’t so bad. Over the years, I’ve been called ambiguous, ambivalent, and even androgenous by people impressed by the fact that I use my left hand for something other than a wedding ring holder, but the truth is, I am not ambidextrous.  

I would like to be. Multiple sclerosis hit my right side first and even though it eventually affected both sides, the right is definitely the most impaired. I am now MSbidextrous. Yes, I just made that up. No, I’m not going to try to copyright or trademark it. What I mean is….what I needed a new word for is MS forcing my non-dominant hand into a dominant role. Maybe dominant isn’t the right word. If my left hand wasn’t impaired at all and if I were truly ambidextrous, then “dominant” would fit the bill. Since neither of those is the case and instead, I’m forced by MS to primarily use the hand it impairs the least, I needed a more fitting word.

 The shoe’s on the other foot…….well actually, the glove’s on the other hand now. I’m mostly typing this left handed and having to make myself occasionally use what was once my dominant hand. I suppose I can’t really call it that anymore, but I guess I still think of myself as right handed even if MS has made me an awkward, unwilling lefty.