I met my wife while I was teaching at the Group operations detachment and one night, early in our relationship, we were at a party full of……well, I guess “my kind” is the best way to put it. We had mingled separately for a bit and when we found ourselves together again, she had questions.
“See that guy over there…the stocky one? What’s his real name? The other guys called him ‘Lunchbox’ and come to think of it, he may have even introduced himself that way”.
“Oh that’s Paul*. ‘Lunchbox’ is his callsign on his team’s internal radio network and also his nickname. He’s been called it so often by the guys here, it probably didn’t occur to him to introduce himself by his actual name”.
“Ok, how about that guy he’s talking to right now? Everyone calls him ‘Dirty Steve*’. That seems kind of mean. Why do they call him that”?
“Oh, because he’s dirty”.
“Like unwashed, or corrupt”?
“Hmmm, it could actually be a bit of both, but more the unwashed part I guess. He looks all groomed and clean cut now, but you have to imagine him with a horribly unkempt beard and a lip full of Copenhagen snuff. Half the guys here are dipping tobacco, but you wouldn’t know it unless you actually saw them pull out a can in front of you and put a pinch in their mouth. When Steve does it, it looks like he grabbed half the can and threw it at himself from arms length. He also can’t seem to aim or project when he spits, so there was usually tobacco juice dripping from his mustache and/or radio microphone”.
“Ok, stop (gag), I get it”.
“Did you meet ‘Crazy Bill*’? We call him that because……”.
“I did and I figured that one out by myself. What about that guy”?
“Hmm, he’s been drinking, so this probably isn’t a good time to introduce you to ‘Sleazy’”.
“What’s your callsign”?
“Oh, who remembers? I’m sure it was something awesome though”.
Odds are you didn’t choose your own (real) name. Initially, anyway, someone else decided what noises people should make to get your attention. You can, however, legally change it, or insist on going by your middle name, etc. Nicknames and especially team callsigns are also not chosen by you and in general, are nothing you’d ever choose. The difference is, they can’t be changed, just exchanged for something that may or may not be an upgrade.
I didn’t choose to get multiple sclerosis and wouldn’t have chosen it if I’d been given the option. Like a callsign/nickname, I may have done something that contributed to being stuck with it, but who knows? I do know that I can’t change it. Time and innovation will tell if I get to upgrade it.
*I didn’t use anyone’s real name, so as to protect the innocent.
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.
So after last Monday’s post, I wasn’t getting any better and was tested Tuesday for Covid and sure enough, the test came back positive. I had monoclonal antibody (Regeneron) therapy Wednesday afternoon, had a fairly uneventful evening, ate dinner, and went to bed.
Sometime that night, the fever woke me. Passive immobility, flaccid limbs that don’t respond to the body’s commands, would have been a blessing compared to immobility characterized by actively flexed, painfully rigid muscles. Unable to move, or call for help, I just got to lay there, wet the bed, and have the kind of thoughts that only a fevered brain can produce. The predominant one of those being that the fever was causing permanent brain damage and that I would be in this state forever. In case you were wondering, there’s nothing good about laying helpless while imagining your ability burning away one neuron at a time.
(Would it be too dramatic to say that’s just MS on a sped up timeline?)
Ok, enough with the horror story. We’re all sick and my wife was in a central location, so as to be able to tend to everyone better. She walked in for a periodic check, felt my head, got tylenol in me, and strategically placed ice packs around me for max cooling (we have 3 small boys, so we have lots of ice packs on hand). When the fever eased, she changed my clothes, sponge bathed me, and changed the bed while I was in it, sort of all at the same time. (Those are some of the real perks of being married to a nurse despite what nurse fan fiction would have you believe).
Anyway, the fever never came back, but left me so exhausted I slept most of Thursday and have been in slow recovery mode since.
That fever would have laid me low without MS, but my tale would have been one of staggering to the medicine cabinet for tylenol instead of laying helpless waiting for help. Right now, on my best days, I couldn’t live alone, but I don’t live alone, so it’s easy to forget my disabilities sometimes. Well, not “forget”, more like “not be forced to remember” all the time. An illness is the lemon juice in the paper cut that forces you to acknowledge its existence. My time having an invisible illness is long gone but there’s “visible” and “slapped in the face with it visible” and apparently I don’t like being slapped in the face.
I learned an important lesson from a Marine once. No, it wasn’t which color crayon tasted the best, or whether or not one should take the paper off before eating said crayon, it was a simple acronym, a set of principles by which he lived his life. It impressed me to the point that I commited it to memory, adopted it as my own, and will now share it with you.
It’s S K A T E:
S tay out of the limelight
K eep a low profile
A void volunteering
T ake your time
E ntertain yourself
If you’re in the military and find yourself at that in-between rank, where you’re not responsible for, or in charge of anyone or anything, that’s not a bad philosophy to have and as much as I hate to give credit to a Marine’s philosophy (sigh), it’s a pretty good one for MS too.
S taying out of the limelight can be tough when you’re disabled, but you’re still you and don’t have to be upstaged by it. Friends and family will treat you like you, but you have to let them know that it’s ok…… and sometimes, how.
K eeping a low profile can be difficult for the handicapped. Especially when you’re using a wheelchair or another mobility aid, or parked in a handicapped spot. This may seem the opposite of keeping a low profile, but the trick is getting people to see you and not the handicap. When you figure out how to do that with strangers, please let me know, because I haven’t.
A voiding volunteering is crucial to conserving your ration of energy for the day. Mine isn’t really, but if your MS is invisible, I realize that this can be awkward for you and hard to understand for those who wonder why. Some will never understand and it’s not like you can wear a sign or go through the exhausting process of explaining every time, why you can’t commit to Monday what you don’t know you’ll have the energy to do on Friday.
T aking your time was never as important as it is with MS. You can still do a lot of the same things you once did, but if you actually want to complete them then you have to pace yourself. Do one task in stages, or do two things you once did in one day, on separate days.
E ntertaining yourself is vital to your mental and physical well being. No, really. Your “outlets” might have to change with your disability (mine sure have), but you still need them, even if you have to learn new ones.
In an earlier post, I mentioned that I had a baclofen pump, so I thought I’d tell you a bit about it. A word of warning, this is going to be a long one. I’ll try to condense it as best I can, but there’s no way to tell you about the pump without telling you why I made the decision to have one implanted in the first place.
Of all the symptoms of MS that I’ve ever dealt with, spacticity was the worst. The National Multiple Sclerosis Society has this to say:
Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS. Spasticity may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs. Spasticity may also produce feelings of pain or tightness in and around joints, and can cause low back pain. Although spasticity can occur in any limb, it is much more common in the legs.
Mine was pretty severe. I know this is an old depiction of the effects of tetanus and I’m not trying to compare the two, but it’s a fairly accurate depiction of what a bad moment with spacticity was like.
I took baclofen (a muscle relaxer) in pill form for a few years, but apparently I’m a lightweight and eventually I reached a point where the largest dose I could handle without falling asleep or staring at the wall and drooling wasn’t having an effect on my spacticity. After talking it over with my neurologist and a successful trial, I had an intrathecal baclofen pump implanted. This hockey puck size pump is implanted under the skin about 6 inches right of my belly button, and has a small catheter that goes around under my skin and is inserted into my spine between the L3-L4 vertebrae. From there it goes up to about the T-10 level and delivers a dose of baclofen straight to my spinal canal. Right now the daily dose is set at 64 micrograms whereas my highest oral dose was 50 milligrams. After absorption through my digestive system and crossing the blood brain barrier, who knows how much was even getting to my central nervous system? ( I’m sure there’s a way to figure that out, but I’m far too lazy) With only about a 100th of that dose going directly where it’s needed, I have all the desired effects, with no noticeable side effects.
At its worst, something would trigger it, a stretch, clothing brushing against me, a drop of water, or puff of wind, etc and I would involuntarily extend my legs, feet crossed over each other, joints at the painfull point of hyperextension, back and neck arched, and hands curled into fists with arms pulled in tight. If I was in a chair and not reclined, this would send me sliding out like an uncomfortable burial at sea. That was most common, but sometimes the opposite muscle group would dominate and my legs would draw up and I’d be thrown forward by clenched abdominal muscles. Sometimes my arms and hands would lock out straight and sometimes if it happened mid yawn, my jaw would spasm shut on my tongue or lip. If I could only have one phrase to describe the most frustrating part of MS for me, that phrase would be, “consistently inconsistent”.
In the years leading up to the pump, I became unknowingly (well maybe tacitly acceptingly) more and more dependent on the spacticity to “walk” and hold me upright. Imagine tottering around on stilts to get an idea what that was like. I would lever myself upright and swing my stiff legs out in little semi circles rather than flex them at the hip and knee to go forward, or pivot and “moonwalk” backwards into a desired position. My constantly rigid abdomen made going to the bathroom……interesting. The constant clenching affected both the act itself and the motility of my digestive and urinary tracts, resulting in a variety of incontinence issues.
I’ve got to pick on the VA for a second. They provided adult diapers and shipped them to my house in discrete, large, boxes, wrapped in black plastic……….10 at a time. The delivery driver had to make 2 trips with a hand truck to get them all in a giant tower on my front porch. There are only a couple things that are shipped “discreetly” like that, so I’m sure my neighbors either thought I was soiling myself 10 times a day, every day, for 6 months at a time, or had entered the adult toy industry in a big way.
(Experiences with the VA vary. I’m poking a little fun at them, but I’ve had a mainly positive experience. That’s another post for another time)
When the pump took effect, all the stiffness in my legs and abdomen (everything below T-10 level) was gone and without it, I went completely limp. Keep in mind, this is my experience and might have been different if I’d had the pump put in sooner, my spacticity hadn’t been so severe, I hadn’t been willing to rely on the spacticity instead of looking for an alternate solution, etc. Regardless, I spent close to a month in bed, having to rely completely on my wife to pull me to a sitting position and slide me to my wheelchair or a toilet/shower chair with a slide board. If she wasn’t a nurse with lots of experience moving patients, we would have needed help with my post op care. My first trip to the VA after the surgery had to be via ambulance because without being strapped to it, I couldn’t sit in my wheelchair very long and couldn’t begin to transfer into a vehicle.
Everything above T-10, arms, hands, and so on, is unaffected, but putting the catheter high enough to relax them wasn’t an option. The way it was explained to me was that it would have to be a cervical placement to relax my arms and there are other nerves that exit the cervical spine that are important for things like breathing, so relaxing them is less than ideal. Also, the dose to relax my legs and torso is higher than for arms, so if the pump was programmed for a dose high enough for those muscle groups, my arms would be completely limp.
I’m still experiencing incontinence but it’s different. Now instead of clenched muscles being the problem, they’re relaxed and instead of urgency because of too much pressure, there’s urgency because I have to relearn what to flex to hold it. The good news is I’m a guy so keeping a portable urinal by my recliner or bed is a convenient option.
With effort and therapy, I am slowly trying to activate muscles that haven’t been used (voluntarily) in years. Short of forming new neural pathways (neuroplasticity) to replace any that are gone, I may never. I’m being as realistic as I dare. My goal right now is to eventually stand and be able to take a shuffling step with my old walker/rollator. When and if I get there, I’ll set a new goal. If I never reach that goal, just the relaxation, comfort, and ability to sleep through the night that the baclofen pump gives me is worth it.
That was the good; now for the bad. I have a hockey puck sized metal pump inside me with a catheter that goes inside and up my spinal canal. In case you missed it, there’s a surgery involved, so there’s risks involved. Here’s mine (yes my intestines were full of gas, etc that day).
See that port in the middle? Every so often the pump has to be refilled via a needle, like this.
It looks intimidating, but really it’s not a big deal. The pump is right under the skin so the needle just breaks it and clicks into the port. In the picture, the needle looks like it’s standing up in me…but it’s not in “me”. If you absolutely can’t stand needles, you need to consider this. The battery has a certain lifespan and when it’s up, the whole pump has to be replaced, so this is a lifetime commitment to regular surgeries if you decide to continue the therapy. The pump also has to be programmed until the correct therapeutic dose is reached. You need enough tone for your muscles to be useful, but not so much for the spacticity to return. It’s been about 10 months since I had mine put in and we’re still fine tuning. Programming is done with a tablet and an attached sensor that is placed on your skin over the pump. None of this is really bad, I’m just trying to make the point that there’s a lot to consider and it’s not right for everyone.
Finally, I feel like I need to make the point that this isn’t a cure for MS. This isn’t going to give me the ability to walk back. If I ever get back on my feet and take a step again, it will be because the ability was there and being blocked by spacticity. All the pump does is remove an obstacle to something that is either there or isn’t. I don’t know if mine is there, but I intend to find out.
There’s a lot more than this overview provides. I am apparently sensitive to intrathecal baclofen too and what should have been a 1 night stay in a regular room after surgery, turned into 4 nights in intensive care, but that’s another story (I keep saying that, don’t I?). If you want to know anything specific, just ask.
“There’s a fine line between being treated differently out of necessity and being treated differently out of pity.”
Me, about an hour ago.
The sun was well over the horizon when I came through the door. It was quiet…..dare I say, too quiet. As I turned my rollator to scoot myself backwards and sit in my wheelchair, I suddenly realized that no one had shouted a customary morning insult/greeting. Concerned, but not yet really alert to any danger, I turned my chair on and attempted to drive towards the conference room. Nothing. I glanced down at the drive motors on either side and my heart sank as I realized that both levers were in the disabled position. One side could be an accident, but both sides could only mean…… I flipped one to the drive position and was reaching for the other when the ambush started.
As rounds began to impact, I flipped the other switch and again attempted to drive away, but discovered too late that the quick detach cable between the controller and drive motors had been unplugged as an extra measure to keep me from escaping. I was impressed at the planning and foresight that went into this, although I’d have expected nothing less from my Green Beret and Marine Corps coworkers. It also impressed me because I guess I had always assumed that we’d have outgrown this sort of thing by our 40s.
During my next checkup at the VA, I was asked if I was still working and if I was being treated with dignity and respect at work. “Umm, well, they disabled my wheelchair and shot me with NerfTM guns the other day”.
The nurse collecting data wasn’t sure how to categorize that and finally asked, “Do you consider that to be dignified and respectful?”.
I had to think about it for a second before I answered that yes, I do.
When I medically retired from the army, I went to work with a couple other retirees who accommodated me in every way and told me that the job was mine as long as I wanted it. I probably stayed 6 months longer than I really should have, and I think it was because it never occurred to my friends to treat me like I was handicapped. Somehow, it matters to me that it was my actual disability that caused me to stop working and not anyone’s reactions to that disability.
Later that day, at lunch, my friends checked with me to make sure I wasn’t offended or hurt over being ambushed. Quite the opposite. A lot of planning and logistics went into that ambush; weapons and ammunition had to be procured, communications established, routes planned, escape routes cut off, command and control set up, etc all followed by a sort of after action review over lunch. I realize that many of the readers of this blog may not be from that background, but please understand how much people have to care about you to go through that much effort.
I’m sure there will be many, many more, but this post has been the hardest for me to write so far. I have erased multiple paragraphs and reworded others more times than I care to count. It’s not an uncomfortable subject, it’s just been really hard to put into words and opens up so many other potential discussions that it’s been really hard to stay on topic. Let me try to sum it up as best I can and keep in mind that I’m only speaking for myself here. My friends’ acceptance of my limitations makes it exponentially easier for me to accept them. My disability has to be treated differently…..accommodated. That’s just an inconvenient fact of life, but if “I” am treated differently, that hurts. I am well aware that my friends and I might be a little outside the norm. Rough and tumble life equals rough and tumble attitude and humor, so substitute afternoon tea and crumpets for the ambush if that makes the scenario work for you. The point is, true friends accommodated my disability (they must have looked up the manual online to accommodate properly disabling my wheelchair), but didn’t treat “me” like I was disabled. My abilities have changed, but I’m still me and real friends know that.
Oh, right, let me pass this on too. You bear some, if not all of the responsibility to let your friends and family know that it’s ok to treat you like……. .you.
