Left or Right? Something Else I Wish People Knew
Like anyone else living with this stupid illness, there are many things that I wish the people around me understood about multiple sclerosis (MS). Things like how this disease actually works, how their Aunt Tammy's MS is not the same as mine, how being fatigued isn't the same as being tired, and so on. But I've already spoken in the past about some of the things I wish people understood about MS. Today I want to shed some light on something else that's closely related but maybe a little broader. Something that could probably apply to just about anyone living with any chronic illness. I'm talking about how it can feel as a whole to simply live life.
The MS labyrinth
Since the beginning of time, people were born into this life without an instruction guide. Even if people knew where they were trying to get to – "One day, I want to be a caveman civil engineer" – they had no way of knowing with complete certainty how to get there. Life is like an infinitely vast labyrinth where everyone starts their journey from a different point surrounded by different twists and turns that others might not ever encounter.
Navigating the maze
Everyone you've ever met was born into a different set of circumstances. They may be similar, but they are never one hundred percent the same. Every hardship that exists in this game we call life is just another piece of wall, room, or dead-end a person has to navigate. MS introduces a new set of paths and dead ends into this maze – as well as a few orange minotaurs – to keep things especially interesting while trying to decide, "Left or right?"
MS creates a lot more obstacles
Obviously, no one actually knows the "solution" to the maze they were born into. Getting to the end requires much trial and error – well, maybe more for some than others – but I've always felt that MS has created a lot more obstacles for me to overcome than, say, the friends I've grown up with since middle school. But that's not the point I'm trying to make because everyone has their own unique struggles.
The point I'm trying to make is that those extra twists and turns in the labyrinth I was born into often cause me a great deal of stress, anxiety, and hopelessness that I imagine I wouldn't have to experience were it not for MS. And just like fatigue, no one can see this pain even though it's something I feel, in varying degrees, every single day.
How did I know which way to go in this labyrinth?
I've made it pretty far into the MS labyrinth, but how? How did I know what to do for each trial MS through at me? How did I know whether to go left or right in this labyrinth? Well, honestly? I didn't. More often than not, I found myself feeling like I was just aimlessly wondering this dark maze and crossing my fingers that I wouldn't run into the MS minotaur. But guess what? I have. Several times. Like most others living with MS, I haven't made it this far without my fair share of scars, be them physical, emotional, phycological, or neurological.
While I've been given a ton of educational material about MS, read many books about this chronic illness, and have had access to a worldwide web of information and personal stories since the time I was diagnosed, I've never really been entirely sure that what I'm doing is the best thing. At least I haven't FELT sure, because I know that a lot of the time there's actually little certainty in life with MS. I really hate that.
There isn't always a right answer
The thing about MS and the people living with it is that everyone is different. No two people's experience is precisely the same, and not everyone finds the same "solution" if any at all. Everyone is different, which is one of the many things I hated most about this disease when it first became part of my journey because it meant one thing: there isn't always a "right" answer. Only a "best" answer. Left or right? Well, left might work for one person in the particular section of maze they are currently in, but left might lead to a dead-end, or the dreaded MS minotaur, for another. No one can be sure.
An MS strategy guide
At this point, my view should be clear; there is no MS road map to tell you which way to go. However, there is an MS strategy guide that can advise you of the BEST way to go. Not because that way is guaranteed to get you to where you want to be but because that way provides you with the best chances of getting there. Unfortunately, this is a strategy guide that you have to assemble over time with education, trust in others and yourself, and experience. Sadly, this guide is not available in bookstores near you...
How I choose to navigate this complex labyrinth
What I know about living with MS today is so much different than what I knew in the first few years of my journey into this labyrinth. This is because of the wealth of knowledge regarding this disease I've since acquired. I've read many books, blog posts, magazines, scholarly articles about all things MS, and I've always tried to keep up with the latest MS research. As well, I've also seen more doctors than I can remember, neurologists, self-proclaimed MS specialists, and other medical professionals that have all, in some way, shape or form, taught me something valuable to put in my personal MS strategy guide. With this guide that I've assembled over the years, I can better choose how I navigate this complex labyrinth in a way that gives me a better CHANCE of turning out favorably.
The MS casino
And that highlights the ultimate problem I've been working towards in this post. No matter how good your odds are, there is still a chance that the house – by which I mean MS – will win. And that is what I wish people understood about my life living with MS. That I always feel like I'm gambling with my health. I know that no one in this life knows if they should go left or right, but most people won't be informed that the way they took was the wrong way by some neurological beast jumping out of the shadows and violently thrashing at their central nervous system. This often causes me a great deal of ambivalence when trying to make one of the many decisions that MS so often requires me to make. And that lack of certainty tends to result in stress, anxiety, and hopelessness. Fear.
I've had to learn to live with this feeling, and no one can see it.
I only wish they understood.
How many specialists did you see before finding "The One"?