Categories
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

The Multiple Sclerosis Paradox

The following first appeared on Multiple Sclerosis News Today:

https://multiplesclerosisnewstoday.com/columns/2022/07/04/the-multiple-sclerosis-paradox/

“Thanks, I hate it.”

Odd way to begin a column, I know. I suppose I’d better explain myself.

That phrase regularly appears in memes and other pop culture media as an expression of dislike for an image or tweet. No one seems to know where or from whom it originated, so I don’t feel too guilty about using it for my own ends.

For me, it’s an expression of both gratitude and abhorrence at the same time. For instance, you can be grateful for the spirit in which a gift was given while despising the gift itself (that sweater from your grandmother, for example). It’s a classic contradiction, and while I certainly don’t consider multiple sclerosis to be a gift, it works well to shed light on a phenomenon that I’ve dubbed the multiple sclerosis paradox.

Let’s look at a few examples.

For obvious reasons, I seek the majority of my camaraderie, advice, and emotional support from the multiple sclerosis and rare disease community. The people I interact with in this small community, via support groups, BioNews (the parent company of this website), online forums, and social media platforms, are some of the most wonderful people I’ve ever known, but I wish we’d never met.

Harsh? Yeah, it is. I’m afraid there’s really no way to soften the blow. Put a slightly different way, I’m so happy to be a part of this community, but I wish none of us qualified for it. There’s no animosity intended. It’s just a somewhat painful contradiction, and I don’t like it at all. Then again, I don’t think I’m supposed to.

As another example, my family and friends go out of their way to accommodate my disability, yet they somehow don’t make me feel disabled (a kind of paradox in and of itself). I am inexpressibly grateful, but I wish they never had to do so because I wish I didn’t need any accommodations.

Along those lines, I didn’t plan on it, but I genuinely enjoy being retired at 47. I love being at home with my wife and young children (I should say that more), but I’m not happy that having a disease was what made it possible. I can be a bit of a handful at times, but I think they like having me around, even if they don’t like the reason I am.

Moving on, I have wheelchairs, ramps, ankle-foot orthoses, reachers, an intrathecal baclofen pump, and so on. I’m glad these tools exist. After all, they keep me involved in my own life and the lives of my loved ones. I wouldn’t want to consider their alternatives, but I wish I didn’t need any of them.

I’ve learned a great deal about MS since I was diagnosed (you could say it has my undivided attention), but I wish I’d never heard of it. I like my neurologists, but I wish we’d never met. The research they do is fascinating and fills me with hope, but I wish there were no need for them to do it and for me to have hope in it.

These are just a few examples of the multiple sclerosis paradox. I invite you to leave a comment detailing your own examples. Thank you for reading this column, but I wish there was no reason for you to ever need or want to.