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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

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.