Tag: multiple sclerosis

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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.                                                                               

Categories
Background Life with multiple sclerosis

The 33% Rule

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. 

“I’m fine”, “It’s fine”, “Oh, can’t complain”, etc, etc, etc

Categories
Life with multiple sclerosis

Over It

The crap gap……I’m over it…….the gap, I mean……because I just got my Ocrevus infusion. (Sigh) It’s not a very clever title, is it? Maybe there’s an MS lesion on the clever title comeupwither region of my cerebellum.

I had sort of planned to have a thrilling follow up to last week’s post, but Friday’s infusion, blood work, baclofen pump refill plus dosage increase, and flu shot was a smoother process than I could have imagined, or dared to hope for. There was about an hour Saturday evening when I thought to myself, “Mr. Hofmeister, (I’m very polite when I talk to myself), you might have overdone it.”, but I was wrong…..well, about what I’d overdone anyway. Looking back, that brief unwell feeling might have more to do with the amount of Halloween candy I stole from my children than from Friday’s events. Don’t misunderstand, it wasn’t guilt gnawing at me for claiming my rightful “daddy tax” on the kid’s loot. What gnawed on me was probably the sheer amount of it I consumed.

OK, back to Friday. After my wife drove me to the hospital, I went straight to the lab for the blood draw and per my suggestion, they started an IV (since I would need one for my infusion anyway), drew blood, flushed the line and sent me on my way. I’m going to pause here to note that most of the hospital staff were wearing Halloween costumes and the phlebotomists in the lab, with one exception, were all dressed as vampires because…..well, you get it. I got the exception, a sparkly blue unicorn who whisked me in and out of the lab and coordinated everything with the infusion clinic. Hindsight being what it is, I should have taken this as a sign for the rest of the day.

My neurologist, (who was dressed as a doctor), was waiting for me at the entrance to the infusion clinic and whisked me, (there was a lot of efficient whisking Friday), to a procedure room and refilled my baclofen pump so quickly that I didn’t get my phone out in time to take a dramatic needle in the belly picture for this post like I had planned on. Here’s a very non-dramatic, bandage on the belly picture instead.

He assessed my spacticity, checked my muscle tone, inquired about physical therapy, and upped my baclofen dosage by 10%. We chatted about recent MS research, my recent bout with Covid, and etc and then I was off to infusion.

Once there, I transferred to a recliner, wrapped up in my infusion afghan, was premedicated and then infused. I was cleared for the fast rate prior to the last infusion, so including the observation time after, I was done in about 3 1/2 hours. I got my flu shot at the clinic right beside the parking deck and we went home.

Having my arm hair pulled out when they removed the Tegaderm dressing over the IV site was literally the worst part of the entire day. So much for a thrilling, “here’s what happened to me”, post. I guess there’s always next time.

P.S. I’m not dissapointed in the least.

Categories
Life with multiple sclerosis

The Crappiest Gap

Photograph: RichSTOCK/Alamy

I’m having my 9th dose of Ocrevus this coming Friday (29 October) and since I’m a glutton for punishment, I’m having my baclofen pump refilled, the baclofen dose rate turned up a bit, a flu vaccination, and all my yearly bloodwork done. I figure that even though I’m cleared for the faster infusion rate, I’m still going to be sitting in the clinic for the better part of my day, so I might as well be efficient and get it all knocked out at once. I mean, I’m already getting one needle poke, what’s a couple more? OK, not my best logic and I may be singing a different tune after, but at least I’ll have some good material for next week’s post.

I’m actually looking forward to all this. Getting the bloodwork done ahead of my December GP appointment will save time then. The flu shot may not be 100% effective, but after my bout with Covid in early September, I’ll take even a 10% chance of not getting the flu. It’s past time for a baclofen pump adjustment. The goal has been to find a dose that tames the spacticity while still leaving enough muscle tone for my legs and lower torso to be useful. I let it go this time until the spacticity started to become a problem, so I’ll be glad for the relaxation. Finally, I’ve been on Ocrevus since it was approved by the FDA in 2017 and it seems to have my progression stabilized (no new brain or spinal lesions and no active demyelination), so naturally, I’d look forward to the continuation of therapy based on that assumption alone. However, there’s another reason and that reason is because this time around, I’m having an extra rough time with the “crap gap”.

Ocrevus is a twice yearly infusion that specifically targets the B cells in the immune system that the developers determined were responsible for demyelination. The “crap gap” is a space of time just before an infusion when the effects of the last one are wearing off and you start having a return of your old, pre-Ocrevus symptoms……ie, you feel like crap. I have no idea how medically/scientifically factual this is, but patients on both Ocrevus and its sister drug Rituxan report a period of increased symptoms 2-4 weeks prior to an infusion.

Experiences seem to vary, both in duration and intensity. Some of my gaps have been worse than others, but all have been noticeable. I usually start to feel a little extra fatigued about 2 weeks before an infusion. My last infusion in April was delayed by 2 weeks so as to not interfere with my 2 rounds of Covid vaccine, but even with 4 total weeks of gap, I don’t recall it being particularly noteworthy when compared to others. My pet theory (which is just that) is that my immune system was too busy reacting to the vaccine and building antibodies to put a lot of effort into pestering me for being late with my infusion.

This infusion has also been delayed by 2 weeks due to scheduling conflicts, but this time, I’m really feeling the gap. Extra fatigue, brain fog, uncooperative hands, arms, and legs, foggy, double vision, and just overall crappiness. If I had the wherewithal, my pet theory this time would be that the extra spacticity resulting from not having high enough baclofen levels was a big contributor. (hmm, it appears I have the wherewithal)

Regardless, this is my most memorable “crap gap” to date. Maybe I’ll start referring to it by a title worthy of it; the “crap gully”, the “crap ravine”, the “crap canyon”…….Ok, now I’m just being over dramatic.

I’ll have a good infusion/pump refill/blood draw/flu vaccine report next week. Stay tuned.

Categories
Life with multiple sclerosis

The MS Pirate

In last week’s post, I talked about a new magazine being a fresh reminder of my disability and how it was something of a minor reset of the grief cycle. Fortunately it was pretty minor and I recovered quickly. My recovery probably had very little to do with my own sense of mental fortitude and more to do with a mind occupying family trip to Legoland Florida and Disney World. It was fall break for the kids and after a character building, 8 hour, family road trip, we arrived at the Legoland hotel/resort. Since I might have been a little over dramatic about the magazine thing and because God has a sense of humor, this is what was waiting for me in the pirate ship display outside the hotel.

 That nearly life-size buccaneer fosters a sense of inclusivity and reassures visitors with all sorts of disabilities as to the accessibility of both park and hotel, but after 2 days of rolling around and transferring on and off rides, I decided that he is a multiple sclerosis icon. The wheelchair for his mobility issues is obvious, so I won’t dwell on it, but follow my head to toe review of the MS pirate and see if you agree with my assessment.

First, he has his trusty hat because a little shade goes a long way in the battle against heat. It also helps shield light sensitive eyes and when hands are too clumsy and uncooperative for any proper brushing and styling of your hair, hiding it under a hat is the next best thing.

Next, he’s opted for an eye patch to deal with double vision rather than the close one eye method. “Yarrrr, I’m not winkin’ at ye. I’m just makin’ sure ya ain’t twins”. 

Keeping one eye tightly closed can pull your mouth into the classic MS snarl….or sneer, but since he’s probably got his eye open under the patch, his snarl is either due to a facial muscle spasm, or some good old MS attitude.

He’s unshaven because some days MS and a razor just don’t mix. You can have a little scruff, or you can look like you lost a fight with a wildcat, your choice. That goes for whatever body part you shave. The MS pirate might have had stubbly legs, but I didn’t check because I respect his privacy.

Moving on, he’s wearing a gait belt over his clothes. We found this to be almost indispensable for transfers in the park and when we weren’t using it to help move me on and off rides, we secured it around my legs to keep them together when fatigue and baclofen caused me to do the MS spread.

Speaking of clothes, his are scrunched up because sitting and shifting in a wheelchair for several hours does that. We can’t see it, but I bet there’s a bare patch of lower back/butt showing where he’s either shifted down and hiked up his shirt, or scooted back and moved his pants down. 

One of his hands is curled by spacticity into a semi useful hook while the other, more capable one is wielding an item not intended for it, as a reacher, back scratcher, shoe horn, etc. The proper tool is elsewhere because it’s a wheelchair, not a Swiss army knife and while necessity may be the mother of invention, disability is its irresponsible uncle.

Finally, even though they’re not my thing, his knee high boots are practical slip ons so he doesn’t use a quarter of the day’s energy trying to put on real footwear. I’ll bet there’s knee high compression socks under them too. Those, unfortunately, are my thing.

Here’s my theme park ensemble. 

In hindsight, it is October so I could have gotten away with dressing like a pirate. I think he might have a better sense of MS fashion than I do anyway.

Categories
Life with multiple sclerosis

Give Him The Chair!

Electric wheelchair convenience, illustration on chalkboard

I recently joined a new (to me) disabled veteran’s organization, and received an issue of their quarterly magazine in the mail last week. As I probably should have seen coming, the magazine is full of disabled veterans. There are pictures of disabled vets in wheelchairs involved in a variety of sports, there are pictures of vets in wheelchairs working at different jobs, or lobbying to change or update laws regarding people with disabilities. There’s even advertising geared towards the handicapped with ads for adaptive clothing, exercise gear, and wheelchair accessories, some of which, I have to admit, are pretty cool. Still, something about getting a disabled magazine was bothersome; no…. depressing really.

Don’t get me wrong, it’s not as though I was unaware I was disabled until this magazine brought it to my attention. I may be far too grumpy to be one of the smiling people in the pictures, but I am very aware that I also use a wheelchair. I actually have 3 wheelchairs to be aware of; my primary, power chair, a manual, and a pretty awesome, all terrain one with tank tracks instead of wheels. The power chair is parked right beside the recliner I’m sitting in at this exact moment. If I wanted to go anywhere, I’d have to transfer  into it. Even if I were to sit here for the rest of the day, I would have to move it in order to see the entire TV screen, so I can’t be in denial as to its existence and/or depressed by my dependency on it………..,or can I ?

Image from psycom.net

Have you ever heard of the Kubler-Ross 5 stages of grief; Denial, Anger, Bargaining, Depression, and Acceptance? You probably have, but did you know that the stages are a nonlinear cycle? As many times as I learned about this process in college, etc, I apparently didn’t grasp that part. I guess I always thought of it as an orderly checklist, “Ok, I’m done with denial. What’s next? Oh, it’s time to be angry now.”, or, ”Whew! I’ve finally gone from depression to acceptance. Depression sucks and I am so glad I won’t have to do that again”.

Yeah, yeah, you already knew the stages don’t necessarily have to be in that order, although, if they weren’t, they wouldn’t make the cool acronym DABDA. You probably already knew that you can be in multiple stages at one time, and that nothing says you can’t go through a stage more than once, right?  Well, I didn’t, or I did and forgot it, or maybe I’m just now grasping the core concept of “nonlinear”, but this is my lightbulb moment, so let me have it. 

I’ve denied (how many times do you have to fall before you admit somethings wrong?) I’ve been angry (…um…a lot?…I don’t have anything witty for this), I’ve bargained (If I can just get back to using my rollator, I’m going to do….), I’ve been depressed (also a lot, because multiple sclerosis is depressing), and I’ve accepted (so, so many things that I didn’t want to and never thought I’d have to). I’ve repeated the cycle so many times since I was diagnosed that you’d think a little melancholy over a disabled magazine taking the place of the abled magazines that used to occupy my side table wouldn’t faze me, but it does. Apparently, getting a magazine for disabled veterans was a fresh reminder that I am one and it tossed me right back into the denial and depression steps of the cycle.

I suppose, when I’m ready, I’ll move to the step of accepting this “new normal”, just like I eventually accepted all the “new normals” each time the goal posts moved. It helps to know that accepting  doesn’t mean liking, finding the “silver lining”, embracing, or otherwise being happy about. It might be the final step in the cycle, but accepting is still part of grieving.

Please don’t misunderstand. I am genuinely happy to be loved and taken care of by my family. We are so blessed that all our needs are met and I am very fortunate to be home with them instead of the alternative. I am grateful to have the tools available that allow me to participate in my own life, so I guess I’m grateful for and accepting of my wheelchair, but I refuse to be grateful or happy that MS put me in one. 

I guess that’s another example of a multiple sclerosis paradox. I’m grateful that there’s an alternative to crawling across the floor, but I’m not grateful that MS took away my ability to walk. 

Maybe I should publish my own magazine. I wonder if the name, “Grudgingly Disabled”, is already taken?

“Be sure to pick up your copy of next month’s “Grudgingly Disabled”. Articles include: 10 things to say to people who tell you that ‘you don’t look sick’ and MS support groups; how to love the camaraderie while hating that you were ever qualified to join one”. 

Then again, it probably wouldn’t attract (m)any advertisers so it would be really expensive to publish, not to mention, a lot of hard work. I don’t really care for either of those things, so maybe I should just start a snarky, lazily written blog instead.

Categories
Background Life with multiple sclerosis

New Shoes

I’m throwing out an old pair of shoes. I realize that isn’t very remarkable sounding, in and of itself, but they’re running shoes. They are, in fact, the last pair of running shoes I ever bought and the last ones I actually ran in. 

I was never fast, but for most of my life, I enjoyed running for long distances. The army sucked some of the fun out of it, as it is wont to do, but I liked it enough to make it an activity that I regularly did, unforced. In the months before selection (SFAS), I even got 3rd place in my age group for a half marathon. It took place in January, was called the “Frostbite Half Marathon”, and there were only 2 other fool….I mean, runners in my age group, but I’m still proud. 

I came back from my last trip overseas in the fall of 2011, knowing something was definitely wrong with me and started knocking out the things I knew about but had been ignoring. I had knee surgery before in 2002 but had torn a few things since then and had a kneecap that would occasionally end up dislocating to the outside of my leg, so I had a second knee surgery that December. After rehab, this was followed by an ankle reconstruction (modified Brostrom Gould) in the summer of 2012. You know you’ve let it go too long when the foot and ankle specialist at the teaching hospital asks if he can let some residents see this and one of the 5 who come in to see a positive ankle drawer sign asks if you were in a car wreck. After recovery and rehab, I figured I had that annoying foot drop problem fixed and was ready to get back to the way things were. To celebrate getting back to normal, I treated myself to new running shoes.

By “treating myself”, I mean I went to one of those places where they make you walk on paper with wet feet and stand on a special panel that scans your foot alignment, weight distribution, pressure points, stock portfolio, personal hygiene, etc, and recommends the right shoes for all your problems. Fortunately, lots of people had my exact foot issues because my shoes were in stock right there on the shelf and were less than twice what they would cost at a store where I just walked in and picked them out myself without expert assistance.

I got to run in them a few times, but not nearly enough to wear them out and commit them to lawn mowing duty, which is the last step, (pun 100% intended), of a shoe’s life. Instead, I kept them around wearing down the side of the toe where my foot dragged, rather than the tread and soles. 

They’ve been good shoes, but they’re just an old worn out pair of shoes. It’s time….actually it’s  past time to let them go, so why the mixed feelings, you ask? Ok…nobody asked, but I’ll tell you my thoughts anyway. After all, if you’ve read this far, you’re sort of obligated to finish this post.

It’s not the shoes. It’s a link, (maybe a desperate little lifeline) to the pre-disabled past. I’m in a wheelchair wearing running shoes that I’ve actually run in before. Mrs. Havisham was right, it’s perfectly fine and normal to leave out the cake and decorations til they rot.

It’s time to go on to the next chapter. I don’t have to like it, I don’t have to “embrace” it, (whatever people mean when they say that), but it’s time. Really, I’m already there, I’ve just been hanging on to the little things that make the book of my life sometimes fall open to those pages. It’s good to look back on fond moments in the story. In fact, I’m pretty sure that’s normal, but the next chapter is waiting, and the next, and the next, until the book is done.

I’m getting new shoes. They’re slip on with laces for adjusting the fit…..and for show. They’re supposed to be easy for me to just slide into without the back part folding in. We’ll see when they arrive, but I have great expectations for this next step. 

Categories
Life with multiple sclerosis

Evil Ted

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

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

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

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

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

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

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

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

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

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

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

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

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

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