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Life with multiple sclerosis

Walking Dreams

Photo: harshvardhanroy/Getty Images/iStockphoto

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

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

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

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

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

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

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

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

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Background Life with multiple sclerosis

Hitting The Trees

“See those trees over there? That’s where I’m going”. (Photo Credit: U.S. Army)

Going to airborne school was the first step, the initial price of admission, to everything else I wanted to do in the Army. I went toward the end of my first 6 months in and did it for almost 20 years, but I never liked jumping (parachuting). I’m not phobic, but I’ve always been a little scared of heights and falling and falling from heights and hitting the ground after falling from heights. You’d think I’d have gotten used to, if not outright comfortable with it, but you’d be wrong. For me, the 100th jump was the same as the 1st. I looked out the open door of the aircraft and thought, “This is insane!!! Don’t do it you fool!!”, and then did it anyway, cursing my arms and legs for taking me out the door instead of obeying my rational, common sense, (ok…maybe a little hysterical), brain. 

They even sent me to jumpmaster school later on, where I learned to set up a drop zone, check other people’s parachutes before a jump, and send them out the door at the right time. They said it would make me more comfortable with jumping if I saw everything that went on behind the scenes. Instead, I learned everything that could go wrong, including some things that I’d never even considered before.

“Good news Ben, we’re sending you to jumpmaster school”.

“What?!, I hate jumping”.

“This will make you more comfortable with it”.

“No it won’t! This is a stupid idea, I don’t want to do it”.

“Too bad. You have to”.

(You know, come to think of it, that actually sums up a lot of my experience in the Army.)

All in all, the total of my experience was really pretty blase’. Aside from a few bruises, scrapes, and sore spots, the shoulder dislocation I wrote about a couple months ago was my only real  parachuting injury. I only ever had one malfunction, but it happened at night, so other than thinking it was taking my chute an awful long time to open and hitting the ground before I lowered my rucksack, I didn’t even know about it until someone else told me and obviously it worked itself out, so it hardly counts. The only other thing that sticks out in my mind is the one and only time I landed in the trees.

There’s some solid math that goes into setting up a drop zone, but that math is based on a number of factors that can change, like aircraft speed, wind speed, etc, so you plan the release point as best you can and then, if necessary, make a real world adjustment off of the first group of jumpers. On this particular occasion, I was in that first group of test dummie…..I mean jumpers. Actually, the whole group didn’t even get out of the plane. It was pretty obvious that we were exiting too close to the treeline on Luzon drop zone, so the jumpmaster stopped our little procession out the door right after the guy behind me. Five of us got out the door. The first three landed at the edge of the trees and the last two, of which I was one, landed in them. 

Photo from Google Maps 2021

I was already over the trees when my chute opened and I got control of my canopy. This was a round chute, but steerable….well, turnable anyway, and I steered hard for the grass. I may have even churned my legs like a cartoon character trying to run through the air back to the top of a cliff, but after a very short amount of time, it was very obvious what was about to happen, so I started to prepare for a tree landing. 

Mom, I know you’re reading this and I’d like to say that I handled the inevitable with all the grace and poise you taught me as a child, but the shameful truth is, your little boy cursed a blue streak going into those trees. The good news, if there is any, is that my vile language was said/shrieked in a very rapid and high pitched voice, so if anyone heard it on the ground, all they heard was something along the lines of, “Eeeeeeeeeeeeeeeeeeeeeeeeeesheeeheeeee!!!!” 

Despite my level of concern and even though I’d never used it before, I fell right back on the training we rehearsed before every jump. I kept my feet and knees tightly together, (on a scale of good to bad, straddling a tree branch is way down on the bad end) and rotated my hands and arms in front of my face just as my feet made contact with the trees. I took the top off of a small oak, where my canopy remained, then crashed into the side of a nearby pine and slid down its trunk to the ground. I got out of my harness and went to the edge of the treeline where I met a 1st Sergeant who asked if I was ok and helped me pull my parachute out of the tree.

“Was that you we heard from the other side of the drop zone?”

“Oh…..you heard my….war cry?”

“Well, we heard a cry, yes.”

In my customary, clumsy, fashion, I will now attempt to make a comparison to multiple sclerosis. When I was first diagnosed, I stood in the doorway, thought about how much I didn’t want to go through it and cursed my arms, legs, eyes, hands, etc for obeying the disease instead of my will. Once in the air, I tried to turn away and even did some desperate, comical antics to try to avoid what was coming. For the record, you do you. If it makes you feel better and it’s not dangerous, then who am I to criticize? You might be able to pedal your way through the air to a nice soft landing in the grass, I was not. Do me the same courtesy of not being critical please. My MS isn’t your MS. What works for you may not work for me and vice versa. Fortunately there are lessons from the MS community to fall back on and prepare you for crashing into the trees. If you know where to look, there may even be a sarcastic person or two to help you pull your chute out…..and hopefully not be too hard on you for cursing your uncontrollable misfortune as it happens.* 

Aside from maybe a neurology residency, there is no MSmaster school, except the schooling that each of us puts ourselves through in our quest to understand this disease. MS education can be a two edged sword. Like the jumpmaster course, it has certainly let me know everything that can go wrong. It also gives me hope that things can go right. Hope may not be a course of action, or something to base planning on for most things, but for MS, it’s sometimes all we have.    

*https://mskurmudgeonskorner.com/