Tag: disability

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Life with multiple sclerosis

Uncomfortable Liminal Spaces: When We’re Caught Between Here and There

I have been very lazy this month. To partially make up for it, this is one of my September columns for Multiple Sclerosis News. I’ll do better next month.

Ben

The following first appeared on Multiple Sclerosis News Today on 22 September 2022.

https://multiplesclerosisnewstoday.com/uncomfortable-liminal-spaces-caught-here-there/

Every time I find myself in a multistory building, I end up on an elevator. It’s not as though I’m too lazy to take the stairs — well, OK, I am lazy — but in this case, it’s because my wheelchair won’t climb one, much less a flight of them. I have no doubt it would go down the stairs, but probably only once, especially if I happened to be in it at the time.

Regardless, I was recently on an elevator all by myself, which is rare. Since I was alone, rather than worrying about running over someone’s toes or being the last one in and having to awkwardly face backward, toward everyone else, I had the opportunity to feel — uneasy.

Do you ever get that uncomfortable feeling that something isn’t quite right when you’re on an elevator, on a long bridge, in a hallway, in a stairwell, on an airplane, or the like? It’s normal because these are all examples of liminal spaces.

“Liminal” comes from the Latin word “limen,” which means “threshold.” These spaces are a pathway between two or more points, and other than that, they have no purpose. In my elevator example, the elevator is a means of getting from one floor to another and is not meant to have the same weight as the origin or destination. Since it doesn’t have the purpose or permanency of either, being on one too long, or without other people to distract you, feels off.

Lumped in with these pathways to a destination are empty spaces that would otherwise be busy. For example, a school, church, or shopping mall is normally full of people and various noises. This is their normal state, and when these stimuli are absent, it can feel abnormal and perhaps even a little creepy. If you haven’t already made the connection, there’s a reason these and other liminal spaces are a favorite feature in horror movies.

Liminal spaces are not limited to physical locations, either. Puberty, retirement, or going through a divorce are a few examples of a mental liminal space. You’re in the process of moving from one state to another, and as with physical spaces, the journey between the two can feel very uncomfortable, especially if it lasts too long.

Multiple sclerosis (MS), in my humble, completely nonprofessional opinion, is a prime example of both a physical and mental liminal space. It can be either an unnerving, frustrating, in-between place, or a space full of confusing silence where there was once bustling activity.

My primary progressive MS is anything but invisible, but many with MS have an invisible, almost invisible, or occasionally invisible illness along with the accompanying disabilities. Everyone’s journey is different, but visible or not, we all seem to be on an eerie path between completely able and completely disabled.

That journey is a mental liminal space as well. We share a predictably unpredictable disease and have no way of knowing where we are between origin and destination. For me, this is especially unnerving and frightening. How do you adapt to, or compensate for, something that may change (unpredictably)? How do you plan for the unplannable?

MS has taken my ability to walk. My leg and core muscles, along with the nerves that activate them, are there and can function, but not enough to hold me upright for very long or to take a step. I’m not paralyzed, but I seem to be on a frustrating elevator ride somewhere between the floor where I last walked and the floor where my legs are completely useless.

If you use a mobility aid of any sort, that’s liminal too. I use a wheelchair, and when I’m with my family at a restaurant, I pull it up to the table and stay in it throughout the meal. This is the most practical thing to do, but it often bothers me that I’m not transferring to a chair. I think it’s because my mobility aid is liminal — a pathway between places — and sitting in a chair at a restaurant table is the natural destination that I’m not quite reaching.

Finally, MS has a way of quieting what was once a life full of activity and noise. I’m still as involved in life as I can be, but there are many things I can’t do anymore, and the stillness is foreign to me. I sometimes feel like the occasional bout of MS noise sensitivity may be partly because I’m not the one making it, and it feels like I should be — sensory underload instead of overload.

How about you? What are your liminal spaces? Please share in the comments below and let me know how to avoid being limited by the liminal.

Categories
Life with multiple sclerosis

Friends And Enemies

“Pogo”, by Walt Kelly, 1971.

One of the worst mistakes you can make if you have MS, (so, of course, I make it a lot), is to compare your MS to someone else’s. Everybody’s experience is so different that sometimes I wonder if it’s even the same disease. Yes, I used “experience” deliberately, because I don’t just mean symptoms, or ability. I’m including how you’re perceived, treated, talked to, and so on.

I have an aggressive form of progressive multiple sclerosis, so it’s kind of hard to ever refer to myself as “fortunate”. In many ways, though, I suppose I am……….(far too lazy to search a thesaurus for an alternative word apparently)….so…..not unfortunate?

I don’t have an invisible illness, well not anymore and if I did, it wasn’t for long, because my time between a barely noticeable limp and a wheelchair was pretty short. It is very obvious that something is wrong with me, so I don’t get questioned for using a handicapped parking space, etc. Besides the handicapped placard, I have disabled veteran license plates, so usually, the only thing I find myself explaining is that I am not wounded, I just have a disabling disease.

I don’t really deal with questioning looks, or second guesses either; not the way other people with MS do and not from people that matter. That sounded harsh, but you know what I mean, right? Strangers may occasionaly look at me and wonder if I gave up too easily, or am not trying hard enough, but because of my background in Special Forces and the Rangers, family, friends, or aquaintances assume that I’m giving it my all. For the record, they’d be wrong sometimes, but still, they normally give me the benefit of the doubt. Really, the only person who second guesses me, or acts like I’m an inconvenience…….is…..me. I am my own worst enemy.

This past holiday season really drove the point home. At two Thanksgiving gatherings, family stepped in and made it possible for me to enter their homes in my wheelchair and be included. Later, right before Christmas, with the help of several friends, I got to go to a party that I seriously considered not going to because I was afraid of being a burden.

Am I a burden? In the sense that extra things had to be done to accomodate my disability…..yes, I suppose I am, but I’m starting to realize that I’m the only one who is afraid of being a burden, or inconvenience. At this point, anyone who didn’t want to be around me is long gone and I need to stop reflexively apologizing and show genuine gratitude for the people who want my company enough to go the extra mile to have it.

I don’t like being disabled by multiple sclerosis, but I am. I don’t like being treated like I’m disabled either. Maybe it’s just semantics, but my friends and family don’t. They somehow, accomodate my disabilities while treating me like……me. Or, to put it another way, they treat me like a loved one with a disability, but not like a disabled person. Hmm, I suppose I am fortunate after all.

I’m the one who treats me like I’m disabled and for some reason, the hardest one to convince to stop doing so.

I have met the enemy and he is me.

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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?

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

Fever

“Fever Dream”, by Nicole Mueller

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’ll be all the way better next week.

Categories
Life with multiple sclerosis

Ambush

Ranger Handbook SH 21-76

“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.