Uncomfortable Liminal Spaces: When We’re Caught Between Here and There
Ever wonder why you feel weird when you're on an elevator?
Every time I find myself in a multistory building, I end up on an elevator. Itās not as though Iām too lazy to take the stairs ā well, OK, I am lazy ā but in this case, itās because my wheelchair wonāt 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 someoneās toes or being the last one in and having to awkwardly face backward, toward everyone else, I had the opportunity to feel ā uneasy.
Do you ever get that uncomfortable feeling that something isnāt 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.
āLiminalā comes from the Latin word ālimen,ā which means āthreshold.ā 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 doesnāt 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 havenāt already made the connection, thereās 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. Everyoneās 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. Iām 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, thatās 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 Iām not transferring to a chair. I think itās because my mobility aid is liminal ā a pathway between places ā and sitting in a chair at a restaurant table is the natural destination that Iām 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 canāt do anymore, and the stillness is foreign to me. I sometimes feel like the occasional bout of MS noise sensitivity may be partly because Iām not the one making it, and it feels like I should be ā 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.
Note:Ā Multiple Sclerosis News TodayĀ is strictly a news and information website about the disease. It does not provide medical advice,Ā diagnosis, orĀ treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those ofĀ Multiple Sclerosis News TodayĀ or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Comments
Cecilia M Rich
I laughed and really enjoyed your article! When my husband walked into the room, I asked if he knew what "liminal" meant. He read your piece and enjoyed it, too. I'm a state representative, and I certainly relate to the feeling when a meeting is scheduled at a high table, or upstairs/downstairs. I've gone from embarrassment to openly pulling myself up and speaking up.
Benjamin Hofmeister
Thanks for reading! So glad you and your husband enjoyed it. When others (unwittingly) contribute to staying in a liminal space longer than necessary, it is even worse. If I can sit at the table with everyone, even in my wheelchair, it's better somehow than being forced by circumstances to acknowledge my mobility aid/liminal space. I guess I feel like I'm closer to the natural destination if I'm not made to take extra steps (prolong the liminal)?
Ben
Donna Wolpoff
I am 74--have had MS many years-it is what it is-dealing with it is second by second-as you probably already know
Benjamin Hofmeister
Thanks Donna! I was never the most spontaneous person on the planet, but the unpredictable aspect of our disease almost takes that option away entirely. MS also seems to sneer at planning, so I guess I'm unwillingly flexible? That may sound like spontaneity, but those of us with forced, MS spotaneity, know it's anything but.
Ben
Jennifer Potter
I certainly identify with the unpredictability of PPMS - I walk with a rollator, but sometimes even this is hard and I can't go far. Sometimes my hands work, other times they don't - my world has become very small
Benjamin Hofmeister
Thanks for the comment Jennifer. I want to plan so badly, but as you know all too well, we don't even know what we'll be up to this afternoon. I suppose, "quit wasting energy fighting it. Relax and just go with the flow", sounds like good advice, but when we're forced by MS to not stick to a plan, relaxing isn't relaxing.
Ben
Yvonne olivier
I read your article and the comments and again realized that people with MS are the only people who understand others with MS. Even old friends just seem unable to grasp what we mean by fatigue, that one can really feel so tired after doing only a few things that you have to lay down. That eating a meal is tiring. That having coffee with more than one or two friends at a restaurant is mentally exhausting. What happened to the lively, happy, always laughing friend they once knew? MS happened. I am 73 and have been living with MS for 43 years now and yes, age has an impact. But let's keep going as long as we are able to - be it in wheelchairs, with canes or strollers! Let's stay positive!
Benjamin Hofmeister
Thanks Yvonne! I have found that I roll my eyes at most cliche's, especially the one's about MS, but one I actually like is, "You have to get MS to 'get' MS". Shoot, as variable as our disease is, it can even be difficult to explain it amongst ourselves.
I completely agree with your mindset though. Do what you can while you can. I'm not always positive, but I really do try.
Ben
myrna stein
I identify fully with all comments and your main theme-especially about planning ANYTHING
I am 75 and had a fairly good life with MS until early 60's. My situation is largely dominated be alot of back pain which has moved to shoulders. I use to paint, quilt etc. Now if I undertake anything I cramp up and have to stop and reclie with large ice packs.
My main issue is that most of my friends are reluctant to include me in most activites and it hurts. I am lucky to have a wonderful husband who fills in for almost anything in my life
Ed Tobias
Hi Myrna,
Thanks for sharing and I can associate with all that you've written....even the back pain, which is a significant problem for my wife. Interestingly, and unintentionally, my next column is about planning (or forgetting to do that). I hope you'll like it, too.
Ed
Benjamin Hofmeister
Thanks for reading Myrna!
People often repeat the old adage, "Birds of a feather flock together", but no one seems to remember the second part, "Until the cat comes". It's a warning about fair weather friends, not a praise of complimentary ones.
Well the MS cat has come and I too have found out who my real friends are. I also had to learn to stop refusing invites because I was afraid of being a burden.
Thanks for commenting!
Ben
ROSIE PAN
Thank you for your thoughtful article. As someone living with PPMS for over 20 yrs, I can definitely relate with your experience. You put it into words perfectly.Ā At age 53 I use an electric wheelchair given that the left side of my body is now paralyzed. Not to mention all the symptoms and comorbidities that come with this chronic disease over the years. Since my diagnosis, PPMS has taken away many important things from my life including my independence and being unable to fully continue my professional life as a neuroscientist. It has changed me in profound ways and has put me in a constant state of transition which in turn requires a high amount of mental health strength. The progressive disease itself has always been my liminal space. My liminality is marked by anger, anxiety, a sense of loss and uncertainty over the years. How to avoid being limited by the liminal? Good question. For me it is all about still finding joy in my life, and surrounding myself with people who love me and make me laugh. Having my soulmate of 30 yrs still by my side eases many of my fears of what is to come next. Reminding myself that although I cannot control my circumstances regarding the disease, I am grateful that my optimistic nature still allows me some control over my thoughts, feelings and reactions to living with PPMS.
Ed Tobias
Hi Rosie -
"How to avoid being limited by the liminal?" What a wonderful phrase that is precisely the problem we all face. It seems as if you're doing well at handling that problem.
BTW, my column this coming Friday will be sort of a follow-up to last Friday's column. I hope you'll like it.
Ed
Benjamin Hofmeister
Thanks for the insightful comments! My career certainly wasn't neuroscientist but it always irks me when people say that you shouldn't be defined by what you do. I know what they mean, (or think I do) and don't neccessarily feel like my job was my purpose in life and I'm lost without it, but a career is a liminal space that we choose. A lot of time, effort, sweat, tears, etc were put into it, so we meant for it to define us in a way. Sure, we knew it was transitory, but there was comfort in picking the transition. Hmmm, you may have just given me an idea for a future column.
You said; "For me it is all about still finding joy in my life, and surrounding myself with people who love me and make me laugh".
I think that's it. People seem surprised that my wife, family, friends. and I laugh about this, or have a "good attitude". Well, we cry too. I really do try to take MS as seriously as it takes me, but finding the joy, the funny bits, etc, limit the liminal.
Thank you,
Ben
Tom Anderson
Hello Mr. Hofmeister- MS treatment, or non-treatment as the case may be, and its cousin ādenialā, are attempts to remain in oneās familiar liminal space, in my opinion. Being an existential leaning person, I see religion as one of the big liminal pacifiers. Life is the āmiddleā, and most of us have heard there is a beginning, a middle and an end. This is true for anyone. MS brings up, and shines a light on (too early), this obvious quandary we are all in, where we usually donāt have to do anything much more spectacular, for most of our lives, than to pray, to get by, if we want to. But we donāt even have to do that. Some of our political disarray here in the US, is a result of differences in people dealing with their liminal space in this larger sense, because what I do with my space puts a light on your space, but we wonāt get into that.
The topic brings to mind the videos you often see on the news, with the unexpected flood in the city and the person driving their car with the water nearly up to the windows. Iām always left asking myself, āNow, was that really smart? Did you have to do that?ā. No, you could have noticed something going on earlier and āchanged courseā. So I guess thatās how I am still dealing with the liminal spaces MS presents to me. Planning almost everything these days, going in different directions, changing destinations, and staying home in terrible weather..
Benjamin Hofmeister
Mr. Hofmeister is my father lol.
I like the concept of a comfortable, familiar, liminal space. In a way, I suppose that's what my house is. I don't intend to live here forever and we even refer to our next home as our "forever" home, but in the years we've lived here, we've become extremely familiar with this transitory space.
Though I can't yet conceive of being comfortable with this disease and the effect it has on my obsessive desire to plan everything, maybe my goal should be becoming more familiar with it.
Thank you,
Ben