In navigating life with multiple sclerosis, words matter
Looking at life as a journey, rather than a quest or adventure
We’ve begun a brand-new year, and normally that would mean resolutions, but as I’ve said before, I’m not exactly a resolution kind of guy. I don’t have anything against them and I do intend to better myself, but I don’t want the disappointment of failing to meet a stated goal. For the next two weeks (at least), I’m sure I’ll write the wrong year on documents, and that’s all the disappointment I want to handle at this point.
When you have multiple sclerosis (MS), setting achievable goals is almost impossible, and not reaching even the most realistic of them has always felt extra disappointing to me. But I’m starting to think that maybe my disappointment doesn’t really have anything to do with my goals being realistic or achievable. It might just be the way I think about my path in life and the words I use to describe it.
I often use the word “journey” when referring to my daily life with MS, but I wonder if some of the disappointment stems from treating it as a quest or adventure instead.
My journey with MS
For most of my life, I’ve used the three words “adventure,” “journey,” and “quest” interchangeably, but I no longer think they are. According to a blog post on Fantasium Media, these three words have three separate meanings based on what an individual hopes to gain. For me, my existence with MS is a direction rather than a destination, no matter how bad I want it to be the latter. Life has become far less stressful since I started thinking of it that way and as a journey rather than a quest or adventure.
Per the blog, a quest is undertaken in order to accomplish a task. For me, each trip I make to the refrigerator is a quest. I’m going there to accomplish a specific task — namely, finding food to stuff my face with. There are things that I want to accomplish every day with MS, too. I get some of them done on some days, but it’s anything but consistent. Since accomplishment doesn’t happen every single time, I don’t feel that MS qualifies as a quest.
An adventure is a mission toward a specific destination, often with risk involved along the way. My most common adventures take place when I go to shower. Sure, it makes something as mundane as a shower sound a little more exciting, but it’s true. I am headed to a specific destination and there is some risk involved in transferring to and from a shower chair. My mission with MS isn’t headed to a specific destination. As I noted before, it’s really a direction, and in my mind, it doesn’t meet the requirements for an adventure.
A journey, on the other hand, is a trip without a specified task or destination; the reward is in the simple enjoyment of a daily existence that is right for you. I don’t like to think of a daily existence with MS as being right for me, but it can be enjoyable sometimes. An enjoyable life with MS shouldn’t have unreachable destinations or unachievable goals. I haven’t quite gotten over trying to have both of these things, but I’m working on it. Besides just being a common theme of my life with a chronic disease, maybe “working on it” should be a resolution.
I’ll also turn 50 this year. I’m not hung up on numbers, so I’m not dreading it by any means. Still, it’s a milestone and a halfway point in the journey of someone who is convinced that they’ll live to see 100. I don’t think it’s the new anything and I don’t really see my 50s as being fabulous either. Instead, I think I’ll try to have feral 50s. I might even resolve to, since that seems like a very achievable goal for me.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or 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 of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Merlene Cook
Journey on.
Benjamin Hofmeister
Thanks Merlene!
Tammy Mackinnon
Hi. I think you’re right about those three words meaning different things. Quest is easy; you’re looking for something. And actually, I think all three of these could be used. But journey seems best to me too. MS is nothing if not an adventure, tho. But I wasn’t diagnosed until I was 62. 20 months ago. And yes, a shower is an adventure. I’m not willing to go on. But I could still be on a quest for happiness. And peace of mind. But essentially MS has turned my life into a journey. Not sure why but actually I think it’s because my life got a lot harder 20 months ago. And journeys aren’t easy. Plus there’s lots of discovery, whether you want it or not, which seems like something you’d find on a journey. I guess what I’m saying is, you do you, but I don’t think I want to be feral! What you wrote was so positive until you got to that point. I used to make resolutions and had always put one like, live to my next birthday. Bc I thought, even if I didn’t make a single other one, I’d probably make that one. That’s kind of a destination, right? But I haven’t made any this year either. I’m 20 mos in tho and I’m still working my way through the stages of grief in roller coaster order. Thank you for that article.
Benjamin Hofmeister
Hi Tammy! Don't worry, I'm not going fully feral LOL. That was just my snide way of poking fun at people that say fabulous fifties, or that 50 is the new 30.
I had a lot of trouble with the five stages of grief at the beginning. I guess I always thought that it was about end of life and it bothered me a lot that I was grieving over a nonfatal diagnosis. It actually has nothing to do with anything other than grief fatal or not. The next problem I ran into is that I go back through the phases each time a symptom worsens. I didn't know that you could repeat did the stages and that they don't have to be in order. The stages of grief have been a lot like my entire journey with multiple sclerosis, I know more about it now, but I'm not sure that I understand about it.
Christine Jackson-Smith
Ben, I love reading your column, you always manage to make me think, make me smile, and occasionally laugh out loud! Thank you! I hope that you had an enjoyable Christmas, and I wish you and your family a Happy New Year XXX
Benjamin Hofmeister
We had a fantastic Christmas, thanks Christine! And thanks for reading the column. I'm glad it touches you.
Jennifer Howard
Thanks for making this piece part of your journey!
Benjamin Hofmeister
Thank you for reading it Jennifer! Being able to share my experience through the column is very therapeutic for me. Reading comments that it's meaningful to other people touched by this disease is even better.
Tom A
Hi Ben- I’m always interested in a philosophical outlook of something important. It is an interesting conversation. So what is it that “we are on”? Journey, adventure, a set of goals? I do hear journey a lot. But my income wasn’t established yet. Journey for income? No. Often when I’m talking about my experience, I start with “My MS Career” or some version of that. I think it implies all sorts of things where one can fill in the blank. To start with, we know that no one chose their MS Career, but, it still has a beginning and then how we (probably slowly) were forced to accept it. That makes us all common? Normally you are supposed to leave a dissatisfying career, but we often can’t do that. Implication? You have to learn how to deal with it to be successful, and they do say that about work. Is marriage part of your career? I'd say with MS, it often is. So my career has been OK. Not over yet but a summary will read that he did a pretty good job, especially given the obstacles.
ALSO: I asked Google "word for not what I planned". [Note that a journey or adventure that doesn't go as planned seldom means a positive adventure, whereas often a career is described as not going as planned but turning out pretty well!?]
AI:
A word for "not what I planned" could be "unanticipated," which means not expected or foreseen, implying that the outcome is different from what was originally planned.
Other options depending on context:
· Unplanned
· Unexpected
· Impromptu: (when something happens without planning)
· Haphazard: (when something is done without order or planning)
· Off-course
· Atypical: (not typical or usual compared to the plan)
Benjamin Hofmeister
In my past, we used to say that a plan was just a list of things that weren't going to happen. A common joke that circulated around was that the thing green berets did best was plan. For every mission we had to develop a p a c e plan which really meant four plans. Primary alternate contingency and emergency. You could pretty much count on the primary plan to fall apart as soon as your feet touch the ground, so normally what happened was a combination of the four plans. I think haphazard, or impromptu would be the best words to describe it.
Sandra Sydorko
What happens with these findings?
Benjamin Hofmeister
Hi Sandra! I'm not sure that anything happened with them. For me, multiple sclerosis is a journey, but it probably means other things to other people and there's absolutely nothing wrong with that.