Author: Ben

I used to be so proud of my immune system. I healed almost unnaturally fast, (which is a good trait to have when you’re clumsy and accident prone), could eat just about anything, and hardly ever got sick. If we assume MS is autoimmune, it seems strangely, maybe even painfully, ironic that it was that same robust immune system that turned on me and put me in my current state. Guess I either didn’t give it enough to keep it from getting bored, or exercised it so much that it got too strong to be contained.*

I still don’t get sick very often, but now, with MS, every time is memorable. Sniffles that would have once barely registered are now a serious life impediment. When you only have so much energy allocated for the day, any additional load can throw the whole system off. (spoon theory anyone?) Heaven forbid you have a fever since even a half degree elevation in body temperature magnifies your MS symptoms by what feels like a factor of 10. 

I’m sick right now. I felt “off” at bedtime Thursday night and woke up Friday morning with a fever that left me unable to move much, uncurl my fingers, and with vision that wasn’t just doubled but with one side actively jumping up and down. Getting the fever under control returned me to some semblance of normal albeit a very tired, worn out normal.

 And that’s been the routine for the last few days, just keeping things under control while I get better. If I didn’t have my wife to bring me medicine, etc I’d most likely have to be hospitalized since I’m pretty helpless when the fever hits. For that reason, this week’s post will be rather abbreviated, but I plan on being up and about in no time.

*I know that’s not exactly how it works.

A few years back, (as I get older, decades seem to turn into a few years….it’s weird). Anyway, like I was saying, a few years back my SF company (6 A-teams or ODAs and a B-team or ODB…. Google it or we’ll be here all day) was doing pre-mission training with 3/160 Special Operations Aviation Regiment (SOAR….Google that one too) and one fine night I found myself in the back of a MH-47 (geez…Google it) finally levelling out and flying straight over a big lake. I put that last part in because up until that moment it felt like the flight crew had been looking at a book of the world’s worst roller coasters and trying to duplicate all the twists and turns of each one. Ok, ok, really, the senior pilot, a crusty warrant officer, was putting the junior pilot (who would be a senior pilot in a conventional unit) through a little special flying….in the dark….in a school bus sized helicopter that is less than agile, but I secretly suspected they had taken bets on how many of their passengers they could make vomit.

    I was sitting near one of the crew chiefs and after a minute or so of calm flying, he leaned over and shouted at me to flip my night vision goggles down and go look out the front. Turns out we were flying like that so we could mid-air refuel. As you might imagine, there’s a lot that goes into refueling a helicopter that’s flying, from another aircraft (KC-130 in this case….(sigh)…Google it) that’s also flying. Add in doing it in the dark with pilots wearing depth perception altering night vision goggles and it seemed downright sporty to me. 

    The aforementioned crusty warrant was letting the junior pilot do it and even though his hands were hovering around the controls, ready to take over in an instant, he seemed pretty nonchalant and nodded at me. 

     “He makes it look easy, don’t he?”

     “Is it easy?”, I shouted back.

    He considered it for a second, then shouted back, “Well, it’s kinda like trying to shove spaghetti up a wildcat’s ass…..in the dark.”, then after another second, he added, “Oh yeah, cooked spaghetti.”.

    I nodded, trying to be nonchalant too, but actually, I was really, really chalant, so I just went back to my seat to think about deep subjects like the odds of surviving a helicopter crash into a lake and how hard it would be to swim to the exit of a rapidly sinking helicopter.

    If you’ve read any of my posts, you know that my rambling tales eventually lead to some sort of point about multiple sclerosis. This time it’s about the spaghetti and the wildcat’s…….you know, the warrant officer trying to explain the process of mid-air refueling a helicopter to someone who has never had and will never have that experience. 

    That’s how trying to explain MS can be. Sometimes it’s as though there’s no common, easily understood, or relatable way to describe a symptom, so we find ourselves reaching for bizarre examples just to try and at least get the seriousness across. 

My legs and right hand and arm aren’t paralyzed, there’s some numbness in my fingertips, but they don’t feel asleep, or tingly either. Sometimes, I find myself looking at them like they belong to someone else and I’m trying to will them to move. Oh, and when they do, it’s like they’re trying to move while submerged in a bucket of jello.

 When fatigue hits, it feels like my head is filled with concrete; thick, full, too heavy to hold up. It’s tough to think and/or concentrate with a head full of concrete and since reading requires both plus actually being able to see the words…….

    It’s not like I’m trying to see through a curtain, or frosted glass. It’s like I’m trying to see through a sheet of cling wrap that’s wrinkled and wadded up in places instead of being stretched tight.

    These are just a few examples and since my MS isn’t your MS, they may not fit your situation exactly. Feel free to chime in, in the comments with the creative ways you use to describe your symptoms to other people.

    I’m sure there are a few people who know me, reading this and thinking that they had always imagined my head was filled with concrete. Come within slapping range and as soon as I use the force to move my hand through this jello, you’ll be sorry……or at least tired and bored from waiting for your comeuppance. 

    This blog has only been up a month, but you may have gathered by now that I’m a tad bit sarcastic and cynical. That doesn’t mean I don’t take my MS seriously. In fact, you could say I take it as seriously as it takes me. If it treated me like everything was happy and right with the world, I would return the favor, but it doesn’t work that way. My MS isn’t your MS so experiences vary,  but on the whole, I am not thrilled with this disease and don’t much feel like pretending I am. As a result, I’m not a good fit for the MS forums and support groups out there, that for some reason, don’t want to talk about MS.  

    “So, I’m having these awful urinary and bowel incontinence issues. Can anyone tell me how to deal with that?”

    “Oh dear, we try not to discuss anything negative here. You should ask your doctor that sort of question.”

    “My doctor is awesome, but he doesn’t have MS. I thought I’d ask….oh, I don’t know….other people with it!”

    “Just tell yourself, ‘I may have MS, but MS doesn’t have me’.”

    “Oh it has me all right. It occasionally  ‘has me’ pulling off on the side of the highway to poop in somebody’s field. How’s that for negative?” 

    It probably comes as no surprise that I didn’t go back and had to search high and low for a group where I fit in and could ask any and every thing I wanted and needed to about multiple sclerosis. I found it in a little place called Kurmudgeons’ Korner. Rather than fumble through a description, here’s an excerpt from the landing page.

Kurmudgeons’ Korner is a forum for people who have been diagnosed with multiple sclerosis. (Sorry, no friends, family, caregivers or limbo-landers; just people with an MS diagnosis.)  We’re relaxed and informal.  We operate on the principle of mutual cooperation and respect.  We talk straight, but we also have a wicked sense of humor.  Most importantly, we’re a private forum; Google can search most places on the internet, but not here. What you say here isn’t findable. You’re safe with us.

We’re a unicorn-free zone.  We’re not into cutesy bunnies and hearts and flowers and rainbows and unicorns. MS is a crappy disease and we’re dedicated to talking straight about what it means and how it affects our lives — except, of course, when we’re laughing so hard it hurts, which is most of the time. We don’t do platitudes. If you’re inspired by those glossy ads saying “I climbed Mount Everest because I take (insert drug name here),” we’re not for you.  If you’ve ever said “I have MS but MS doesn’t have me,” you need to find another forum — unless you’ve repented or you’re ready to consider doing so. All that said, there’s probably not anywhere on earth you’ll find a group of people who will understand you better, support you more, or make you laugh harder.

https://mskurmudgeonskorner.com/

    It’s not for the faint of heart and no, that isn’t meant as a challenge. A lot of people think they want straight talk about MS, but really don’t. It’s a negative disease, so if you ask a question, there’s a good chance that the answer won’t always be a cheery one. The people aren’t negative though, just honest and when it comes to MS, honesty really is the best policy. If that or any of the above appeals to you, give it a shot. You’ll be glad you did. I know I am.

I’m not driving right now. I was trained and certified to drive with hand controls but since I’ve almost had to learn to use my body again after the baclofen pump, I’ve had to push that and getting an accessible vehicle back. Right now my wife helps me get in and out of the passenger seat and drives me everywhere, so when the front right brake pads reached the end of their life while we were at Disney World, I was not the first to know. Obviously……well maybe not obviously, we made it home fine and had both front sets of pads and rotors changed. 

It doesn’t seem like that long ago I would have had a good idea of their wear level before the trip and could have changed them myself. Not that I would have, mind you. It took the professionals less than an hour, the labor charge was reasonable, and the parts were about what I could have gotten them for. My point being that it would have taken me most of my Saturday to do what they can do in under an hour and since I consider my personal per hour rate to be pretty high for a driveway brake job on a weekend, I wouldn’t have really saved anything. Same goes for a lot of things, automotive and otherwise, but somehow there’s a difference to me between having something done because I don’t want to do it and having it done because I can’t do it. When I was able to do them myself, I didn’t particularly like replacing brakes, but now, I find myself almost ashamed to have it done for me. If I had it done for me in the past, it was because it was the sensible choice. Now it’s the only choice; i.e. there is no choice and the loss of that freedom to choose is perhaps worse than losing the actual ability.

In case I set the bar too high with brakes, I put on and tied my own shoes the other day. 

“But Ben, that doesn’t sound too bad”.

“You wouldn’t think so but my legs and feet aren’t passive, they are actively uncooperative”.

“So like putting shoes on a 2 year old?”.

“Well, my hands and arms aren’t 100% either, so yeah, like putting shoes on a 2 year old…if another 2 year old was doing it and they both hated each other”.

Obviously, the sensible choice is for my wife to put my shoes on me and we’re sensible people, so we choose that route 99% of the time. She can do it in under a minute. I didn’t time myself, but I’ll bet it takes me 5 at least and those are 5 minutes I’ve used up from my daily, (variable) pool of hand and finger dexterity. 

It’s not ego (I have one, but like to think of it as my healthy excess of self confidence) and it’s not a misplaced or wrongly emphasized priority. I don’t think it’s purely some childish assertion of independence either, although I have used the words, “I can do it myself”, from time to time. It’s knowing I have a choice and have the freedom to choose the sensible one. With a disease that slowly takes our freedom from us, hanging on to even the smallest ability becomes a priority.

Abilities are precious to those with disabilities.

    When you’re medically retired/discharged from the army it is done in several steps that sort of make sense, but in typical army fashion, are long and unnecessarily complicated. I didn’t really mind since I was very close to 20 active years and the longer they took to decide my fate, the closer to an active duty retirement I got, but my case is not the norm. 

    While this was going on, I still went to work and one fine morning at the 9:00 staff meeting, the S3 Sergeant Major announced that he would like to send me to the Senior Leaders Course so that I would make the promotion list prior to retirement and be retired at the next higher grade. I said that it was a moot point because I was in the medical evaluation board process and had a profile. He retorted that people go to SLC with a profile everyday, to which I replied, yes but with a permanent profile. Mine was temporary as all are while going through the medical retirement process. “Temporary?!!”, he said, “Why would it be temporary? You’ve got multiple sclerosis. It’s not like you’re going to get any better”. 

    I regret to this day that I didn’t have the wherewithal to immediately bury my face in my hands and exclaim through fake tears, “You’re right!!! I know you’re right!! Waahhh!!!”

    I wasn’t offended in the least. This is actually pretty typical from my small circle of friends. My wife is occasionally appalled by our conversations. “I can’t believe you guys talk to each other like that!”. Maybe it’s just guys, but then again maybe it’s just us. It doesn’t matter, I wouldn’t have it any other way. We can make crippled jokes or talk about pulling me behind a truck on a trailer rather than leave me behind on a camping trip, but, on that same trip, I know for a fact that one of these rough men would have cut my steak if my hands weren’t cooperating, or lifted me into bed if I was too tired to transfer myself. By the way, I got to ride in the cab of the truck after one friend (mis)used a slide board to get me in there. I won’t elaborate right now, but a slide board is not meant to be used as a shoehorn or a pry bar. There’s a learning curve, but we’ll get there.

    Was my friend right? Am I really never going to get better? I’m fairly optimistic when it comes to advances in bionics and medications, but really, I don’t know…..no one does. I might get better, I might not. What I do know is that hope is not a course of action and in the time it took for the realism to dawn on me, I wasted a lot of quality time sitting around waiting until I was better.  

    Don’t misunderstand. Obviously I have to listen to my body and act within the confines of the disease, but I’m only doing myself and my loved ones a disservice if I try to set my own set of confines. “I’ll do that when I feel better.” was my go to line in the early years. True, I had no way of knowing how fast the disability would progress, but the time when I could have been doing what I was capable of is gone. 

    Don’t have a multiple sclerosis crisis in either form. Don’t rush out and spend your life’s savings on that Ferrari just so you can drive one before the ability is gone, but don’t sit in a chair and stare out the window with no hope either. You don’t know what the future holds and neither do I, but I do know that we can’t live there until it becomes the present. In the meantime, do what you can, while you can. You’ll be glad you did.

I can’t promise that I’d have listened if someone had sat me down and told me this right after my diagnosis, but I sort of wish someone had.