Category: Life with multiple sclerosis

Once upon a time, in Afghanistan, I found myself with half my team, a handful of Romanian SOF, and a squad of Afghan army soldiers climbing up a narrow canyon toward a cave full of munitions. We were guided by a sandal wearing local man and his 9 year old son, both of whom outpaced us the whole way. I actually felt a little better when the kid had to hand his rifle to his father so he could use both hands to clamber up and over a boulder. When I say we were “climbing”, I don’t just mean the trail was steep. I mean, we left our body armor behind and had to occasionally help each other up rocks and cliff walls, etc. The canyon was dotted with caves and fighting positions, all cleaned out except for this one because of how difficult it was to get to. At long last we reached it after negotiating a final narrow ledge around a bend in the canyon. The ledge was just wide enough for one person at a time and was best crossed by scooting along sideways with one’s hands on the wall of the canyon for stability. This ledge will become important to the story later on.

When we entered the cave, we found a decent sized stack of 14.5mm DShK ammunition sealed in cans and 15 or 20 SPG-9 rockets*. Not a huge haul by any means, but destroying it meant that at the very least the explosives from the rockets couldn’t be used for IEDs and the ammo wouldn’t be shot at anyone. Because of the effort it took to get there, everyone was traveling light and our engineer/demolitions guy** had only carried about 10 blocks of C-4, so we stacked the ammo cans in a tall row with the rockets, C-4 on top of them, in the middle. The plan being that the rockets would be destroyed for sure and would add to the explosive force, destroying the ammunition.

    Because of the confines of the canyon, all but 2 people would start the climb down to the vehicles and those lucky 2 would stay behind and set off the explosives. I had earned a reputation for being cool under fire, so I was voluntold to stay with the engineer. Unbeknownst to everyone, I wasn’t exactly cool under fire. It looked like I was calm and level headed because I was actually clueless under fire and it’s easy to keep calm when you don’t fully appreciate the danger until it’s mostly past. 

    While the engineer finished setting up, I did a quick test run to see how long we needed to reach a safe place around the bend in the canyon before the explosives went off and decided on 8 minutes. He cut the time fuse, ignited it as I started a timer on my watch, and we set out. Remember that ledge I mentioned earlier? We were almost to the end of it when the explosion went off. As the ledge shook under foot, the canyon wall shook under hand, and rocks began to roll down, I let go with one hand to look at my watch and then shake my fist at him.

    “You said 8 minutes!!” (I may have added a little more than that, but who remembers?)

    “Woah, woah. What time did it blow at dude?”

    “7 minutes, 20 seconds!”

    “Chill out man, that’s well within the window.”

    “Window?! What Window? It wasn’t within my window!”

I should point out that he is from the northeast but talks slow and sleepy like a west coast surfer……if that surfer also happened to be from New Hampshire. Explosives guys tend to come in 2 varieties. The wild eyed, twitchy, nervous kind and the “why should I be nervous? I’ve either got this, or it’s suddenly not going to be my problem anymore.” kind. He is one of the latter.

    I promise there’s a point to all this and it does have something to do with multiple sclerosis. It’s that part about being “within the window”. MS has its own window, (maybe windows), but for me, there is no “within the window”. It seems like the window is never open the same amount from minute to minute, day to day. You know, consistently inconsistent, randomly random? It makes planning next to impossible. “Hmm, the window is wide open right now, if it still is this afternoon, I’m going to go outside and do _____.”, but it’s only open an inch by then, if not closed completely. It might close if it’s too hot, too humid, I ate too much, or didn’t get enough sleep the night before. Then again, it might just close for no discernable reason whatsoever. “Go out this Friday? Sounds great! I’ll rest up so maybe the window will be wide open, but that’s still no guarantee that I’ll be up for it when it’s time”.  

    The solut……no, the coping strategy is some sort of combination of doing what you can, while you can and not being so reliant on plans. That’s easy for an at home, retired guy to say and I realize it, but you can’t live your life “within the window” when the opening and closing of the window isn’t really up to you.

    Oh, and even if the other person has MS, well within their window is not well within yours. I can’t make one size fits all analogies about a disease that’s anything but.

*I know a SPG-9 is a recoilless gun and the rounds aren’t technically rockets, but I don’t know what else to call them.

**He has a name and is still around. He endangered my life on several other occasions including with a homemade still and a blast furnace fed with forced air from an old leaf blower. Where did that leaf blower even come from? We lived way out in the desert. Why did we have a leaf blower in the firebase?

I was diagnosed with multiple sclerosis almost 4 months before my middle child was born, so all 3 of our kids have never really known me without it. Nothing drives home the fact that you have a disability quite like a kindergartener’s crayon drawing of you in a wheelchair.  As they grow, their awareness of “daddy’s sickness” is growing too and they’re starting to ask questions. They know it’s in my brain and given the electronic world they’re growing up in, they seem to readily accept problems with connections (wiring) between my brain and the rest of me. They also understand that it’s not like a cold and or an infection that can be caught or given to someone else. Someday they’ll learn about genetics and heredity and I’ll have to bite the bullet and explain that because I have it, their chances of getting MS are a little higher than average.

The kids were all born within 5 years of my medical retirement from the army, so they only have a few memories of me actually being in. However, there are pictures and stories of various shenanigans so it shouldn’t be surprising that after a talk the other day about me being to blame for some………ok, most of my scars, one of the kids asked if I had done something to cause my multiple sclerosis too. How do I answer something that I’ve asked myself countless times? Why and how did this happen? Admittedly, I’m more concerned with what we do now but I do realize the importance of unraveling the how and why. 

A local neurologist diagnosed me. He’s an excellent neurologist and has a few other multiple sclerosis patients, but he’s a headache specialist, so, soon after the diagnosis, I started seeing an MS specialist. At our initial visit, she asked a ton of questions and at one point remarked that even though MS isn’t inherited per se, it does tend to run in families and I had no family history of MS whatsoever. At this first point, she had no idea about my army background and said that minus a family history, there were a couple of theories being floated around as to how this happened to me and that they both surmised a genetic predisposition and some sort of environmental factor or event that triggered the immune response. She then asked if there was a chance I could have been “over” vaccinated and therefore had an overstimulated immune system. Hmmm, I’ve had a few over the years. All the normal ones, plus smallpox, yellow fever, rabies, anthrax, and plague. She then asked if I had been exposed to anything else, another illness perhaps, that could have put my immune system intohigh gear, so I had to share that I’d caught Q-fever in Afghanistan 6 years prior and had just finished an 18 month, 2 drug regimen for the chronic version when it came back to haunt me.

On top of those two possibilities, a year or so back, I read an article about a possible connection between head injuries and MS. As luck would have it, an old SF buddy was in town and over dinner reminisced about a time when I was the tail gunner in a truck and had been knocked out when a tree branch hit me in the back of the head just under my helmet edge and slammed me forward into the gun. My wife laughed and said that she was surprised I’d never mentioned it before. When he told the story, I instantly remembered the event, but had forgotten it entirely up to that point…….almost 16 years. I’m no expert, but no recollection about being knocked out can’t be good. I remember my other concussions (that was 3 of 4) so that probably makes it worse. The jury’s still out as far as a connection with MS goes, but I seem to be maxing out on possible contributing events. 

So I guess the answer to the question of whether or not I brought this on myself is……..who knows? If there is a way, or ways, to contribute to developing MS, I’m guilty of a few I suppose, but what about everyone else? Some have a family history, but many don’t. Are there a huge variety of triggering events (ex.Epstein Barr Virus), or is it completely random? Remember consistently inconsistent? Maybe MS is also randomly random. Everyone who had EBV or even shares my experiences doesn’t have MS, so it’s either random, there’s many, many triggers, or there’s something completely different waiting to be discovered. 

My kids are way past the point of thinking I know everything, so I guess it’ll be OK if I just say “I don’t know.”, when asked this question. I may never know how it happened, but it’ll be OK with me if they find the answer to “what do we do now”, before they unravel the mystery of “why”.

In an earlier post, I wrote about being tased and how it’s a near perfect way to describe my worst moments with MS. I also noted that the description only makes sense to a person who has been tased before, so it’s of limited value. At the end,I mentioned that I’d talk about fatigue later, but after thinking about it some more, I guess what I was trying to describe with the taser example is, in fact, my MS fatigue. 

           We really should have another word for it because describing it to someone as “fatigue” really doesn’t do it justice and can be confusing for people.

“Oh you’re fatigued? I get tired too sometimes.” 

“No, it’s more than that.”

“Haha, don’t worry, I get it. Every once in a while I feel like taking an afternoon nap.

“No, you don’t ‘get it’, but I have a way to help you understand.”

“Is that a taser?”

I better make a quick disclaimer here. I am in no way, shape, or form suggesting that you use a taser on someone, no matter how much you want them to understand or how satisfying it would be for you. 

I know like all things multiple sclerosis, my MS is not your MS, so my fatigue may not be the same as your fatigue, but there are probably some similarities. Chime in, in the comments section  with your experiences and any suggestions for a better, more appropriate word for it.

With my progressive MS, there are no remissions, instead there are good days and bad days, good hours and bad hours. The bad times are when fatigue is in full swing. My fatigue is not the same as being sleepy although I suppose being sleepy could be a part of it sometimes. My fatigue is not the same as being tired, ie “worn out” either. When I’m fatigued, I’m tired…..so very tired, but I can be tired without being fatigued, if that makes any sense. What I mean is, I can come back from an intense session at physical therapy and feel tired from the effort and need to rest,  but that’s not the same to me as when I’m in the throes of fatigue which seems to blindside me at random times on random days. (there’s that consistently inconsistent thing that drives me crazy).  My fatigue comes on rapidly and just about makes me immobile. Did you know you can feel a loss of balance while sitting in a recliner? Apparently you can. It doesn’t increase spacticity but makes my limbs feel like they weigh 100 times more than usual. My extremities, especially my right hand (my right side is the more affected side), become cold and stiff. My eyes want to close, not in sleep, but because holding them open is an effort. When they are open, I have unfocused, sometimes double, vision. I have hearing loss and tinnitus, but when fatigued, I seem to be almost sensitive to and even annoyed by, noises. This is when my cognitive function is at its lowest. If thoughts had weight….(do they?) they’d feel 100 times heavier too and hard to move around and organize. Just getting a thought to go from brain to mouth, or fingers (typing) becomes extra difficult. I tend to talk slower than normal, my voice gets quiet and hoarse sounding and occasionally I even slur. Sometimes, it has an effect on my emotions too, mainly exaggerating them to levels outside my norm. Are you starting to see why I consider this to be beyond tired or sleepy, or how slightly irrational thoughts like using a taser to explain it to people who think it’s just being sleepy or tired suddenly seem rational?

 Like so many with MS, letting myself become overheated can also give me all of those fatigue symptoms (Uhthoff’s phenomenon) but it seems to fade as I cool down to a normal temperature and just leaves me feeling weak and tired. For me, getting hot can bring on a bout of (somewhat) reversible fatigue, while my nearly everyday, random fatigue seems to have no rhyme or reason and no means                  

If I were to describe it to people from a background similar to mine, I’d tell them to remember being in a high adrenaline situation, when the sympathetic nervous system (fight or flight) dominates and then when it’s over, feeling the effects of the parasympathetic backlash. The levels of parasympathetic hormones rise to balance the sympathetic ones and when the stimuli for the sympathetic response is past and those sympathetic levels drop, you are left with high levels of the parasympathetic hormones, etc and suddenly feel utterly exhausted and……well…..fatigued. 

I’m spitballing here, but I have lesions in and around my brainstem and sometimes wonder if any are having an effect on my hypothalamus and/or amygdala and are responsible for both my temperature regulation problems and random fatigue symptoms? If that’s the case, until there’s a remyelinating, or lesion repair therapy, there’s not much I can do about it. However, could counter therapy, i.e. something to balance the parasympathetic response reduce fatigue? I think I’ll bring it up with my neurologist next time I see him. I can tell by the way he sighs and how his eye twitches that he loves it when I ask things like that.*

*I’m joking. We only see each other every 6 months and he knows I have nothing better to do than sit around thinking up stuff like this, so he doesn’t expect me to ask yes or no questions.

“Oh my friends, my friends forgive me

That I live and you are gone.

There’s a grief that can’t be spoken.

There’s a pain goes on and on…”

Marius, “Empty Chairs at Empty Tables”, Les Misérables

    I guess I look pretty good on my DD214. Well, halfway decent anyway. Truth be told, I was only ever in a couple scrapes and overall, never experienced any trauma I wasn’t prepared for mentally. I was very, very fortunate and I know it. Not everyone was. 

    If it’s even a real thing, I have an almost photographic memory. My favorite instructor in the SF medic course caught on quickly that I had the grading algorithms for the trauma lanes memorized and was getting cocky. The patient does this and I do that and problem solved and I pass.  So, he started killing my patients (all pretend, in case you were worried) even when I did everything by the book and after one such incident, I threw a handful of gauze, said a very bad word, and stormed out of the tent. He followed me out, grabbed my arm, and led me to the woodline where he told me:

       “You’re not God! You don’t get to say who lives and who dies. You can do everything right, everything by the book and people are still going to die on you. In this line of work, you are going to lose sometimes and if you can’t handle that then you need to find something else to do. When it’s all said and done, when all the inevitable second guessing is past, if you can look in the mirror and say that you did your best, then sleep well”.

I think that this is why I never had to deal with too much survivor’s guilt. You know, “Why him and not me?  I should have done more, or done…X and he’d still be alive, etc, etc”, but what about survivor’s envy?

I cropped him out of the picture out of respect, but the guy whose blood is on the road in front of me did not make it.* I don’t believe in any “blaze of glory” nonsense, but if I’d known then what I know now, would I rather it had been me cut down in the prime of my life instead of a future of implanted devices, prescriptions, diplopia, wheelchairs, incontinence, dysphagia, and so on? 

This is just idle speculation brought to a mind by a phone conversation with an old acquaintance not long ago. I told him about my MS (he asked) and he remarked that if he had to deal with those sorts of disabilities, he’d put a gun in his mouth. That sort of brutal honesty is the norm with most of my circle, but it rubbed me the wrong way and I guess it showed in my voice. He backtracked by reminding me that I had a wife and kids, “good reasons to keep going”, he said, while he was single and couldn’t abide the thought of living in a home or having a stranger look after him.

I guess I get it. The year after diagnosis was the hardest on me depression wise. I could still walk and drive then, but the reality that this wasn’t going to get better….or at least not get any worse had set in. I was never suicidal (I like me way too much to harm myself), but there was a point where if a semi had swerved into my lane on the highway, I don’t know if I’d have tried to avoid it. I’m better now and I’d like to think I’d have plenty of reasons to keep going even if I didn’t have my beloved family. But what about that 31 year old medic in the picture? He was single and proud to the point of being arrogant. If I could go back and tell him what the future held in store, would he have taken more chances, or deliberately exposed himself to enemy fire? I can’t say with certainty what past me would do, I can only tell you what I’m doing now and that’s doing what I can, while I can.

Who knows what the future holds? It’s comforting to think that maybe future me is thinking that if he could go back, he’d tell me to suck it up a little longer because something good is just around the corner.

*Mr. Scheuermann, you were right. I did my best and still lost, but I can look at myself in the mirror because of your hard lesson.

“Don’t tase me bro!”

Unnamed UF student 2007(?).

    Epiphany. That word was once the bane of my existence. Back when I was a SOTIC instructor, I was at the range every morning an hour or two before the students, setting up the steel targets and repainting them as needed. It never failed. About 20 minutes before the students began to arrive, the senior instructor would take a sip of coffee, look out over the range, and announce, “I have an epiphany! Followed by something like, “let’s move all the targets and paint every other one with evenly spaced stripes.”. The other junior instructors would challenge me to put a sedative or something that caused explosive diarrhea in his coffee, but eventually, we’d either do it, talk him out of it, or threaten a mutiny. I have tried not to use that tainted word since then, but recently I’ve had an epiiiiiii……an epiiiiii…….a bright idea of my own, so I’ll share it. 

    I was tased once. Most people that know me are not surprised by this. Just by the “once” part and even more surprised when I tell them it was voluntary. I went to a sort of driving course that tased and pepper sprayed students to expose them to the sensations of…….. getting tased and pepper sprayed. I would have refused, but the opportunity to drive fast, crash, and otherwise abuse cars that weren’t mine was too good to pass up and so, midway through the course, I found myself shirtless, held up by one fellow student and shot in the back with a taser by another. It’s not like touching an electric fence, or grabbing the wrong 2 wires under the hood of a car. Every muscle in your body locks up and you stand there, back arched, and make vowel sounds; mostly eeeeeeee and oooooooo, as I recall. You’d probably shout them out, but you’re limited to whatever air you had in your lungs before the barbs hit you, so you make do. When it ends, you collapse to the ground numb, not really feeling it when they pull the barbs out. It takes a second to collect your thoughts, see clearly, and get your muscles to respond to your will. 

    And…..that’s what my worst moments with MS are like. Fuzzy, non-linear thoughts and vision, muscles that don’t respond, numb body parts, and having to concentrate to get enough air in to complete anything more than a 5 word sentence. 

    It’s not a great example. Only people who have been tased get it and I don’t/can’t recommend tasing people even if you really, really want them to understand.  MS is really hard to describe to people, so I was glad to have this epiphany to share, even if the audience is small. Fatigue deserves a post all it’s own, so we’ll cover it later on.

A few years ago I was at an event talking to the outgoing group surgeon about multiple sclerosis and a friend I hadn’t seen in years overheard us.

           “What do you have?”

           “Multiple sclerosis.”

           “Oh no! I’m so sorry. How long are they giving you?”

           It took me a second to get what he was asking. “What? I’m not going to die.”

           “Oh, ok, I know what you’re talking about now. That’s the stuff Michael J. Fox has.”

           “No, that’s Parkinson’s. It affects the central nervous system too, but other than that, they really have nothing in common.”

    “I got you. So are you going to try that bee sting therapy?”

    “Five minutes ago you didn’t even know what we were talking about, but now you feel confident enough to recommend a cure that involves getting stung by bees?”

    Or, right before I retired, during a morning meeting, a friend announced, “Hey Ben, you know who else has MS? Carlos Hathcock.” (famous Marine Corps sniper).

“Thanks, but that’s not a great example. He’s dead.”

“What!? When did that happen?”

“About 10 years ago.”

Desperate to salvage this: “But what did he die of?”

“Complications from his multiple sclerosis. Stop trying to cheer me up. You suck at it.”

 And the list goes on and on. See the chronic illness bingo above? I’ve heard all those and then some. Yes, the latest mouse study is fascinating. I’ll keep up with it during the 20 years it takes to get to human trials. I’m thrilled that your brother’s best friend’s cousin knows a guy that read an article about a guy with MS who is climbing Mt. Everest this year. Maybe I’m just not that motivated, but there’s also a chance he and I don’t have the same symptoms. Yes, I’ve heard about that diet. It’s good to know that organic kale grown only in Patagonia will cure this and I’ll take it under consideration.

I’m being cynical and probably a tad bit sarcastic. I know they mean well (most of them anyway) and I know people naturally  feel like they ought to say something. Yes, we can talk about this. Please don’t feel like you have to tiptoe around it.  I might even bore you to tears because you could say I have a vested interest in MS, coupled with a lot of time to read, so I know quite a bit.

That’s not to imply I know everything. I don’t and I really am grateful for new and “helpful” information, or kind (not pitying….please. We’re not at a funeral) words. In the meantime, I’d rather not win another round of chronic illness bingo and guess what? It’s ok for me to not always be grateful that it’s not worse.

“Not like this…..Not like this”

Switch, (The Matrix) 1999. 

    It was probably more luck than anything else, but I take great pride in the fact that I’ve never been shot or blown up. My grandfather was awarded two purple hearts in WW2 and when I was a child, he told me that they meant that he was smart enough to think of something to do, stupid enough to try it, and lucky enough not to get killed.

    I’ve had a couple close calls, but all my disability is from injury or disease, the latter of which is almost comically difficult for guys in my former profession to come to terms with. The career field has its own risks and everyone accepts them as part of the job, even the ones who think it could never happen to them. Death and injury are understood as being par for the course and therefore acceptable while anything else is a foreign concept and difficult to comprehend. They that live by the sword…. and so forth. 

    I told my supervisor (S3 SGM) the day after my diagnosis. While I certainly wouldn’t call him “crusty”, this was a guy who’d been around the block, so to speak. I’d known him for quite some time and we’d even deployed together. When I told him I had been diagnosed with multiple sclerosis, he stood up with an odd look on his face. It occurred to me that the Sergeant Major was either going to cry, or come around the desk and hug me and I didn’t know how to handle either scenario any more than he knew how to react to something outside the norm of our profession.

    Later, while I was still in the same staff job before retirement, a fellow medic (18D) had been badly wounded and I called him at Walter Reed one day to check on him and see if he needed anything. During the conversation, he told me he had heard about my MS diagnosis and how sorry for me he felt. A double amputee with multiple other serious injuries is sorry for me? I thanked him, but in my head, I was thinking, “No, you don’t get to feel sorry for me”. Is it because we volunteered for combat that combat injuries make sense while a random disease doesn’t? 

    In my own way, I suppose I do it too. I recently caught myself telling someone about my service and I remarked that in all this time, I’d never gotten a scratch from combat. Instead, multiple sclerosis had gotten me in the end. Maybe a tangible enemy or accident is acceptable somehow while an invisible disease is not. I never expected that I would get shot, blown up, the parachute wouldn’t open, and so on, but I wasn’t naive enough to think it wasn’t possible. Maybe that means it was expected in a round about way and since MS wasn’t, that makes it different and frightening.