Multiple Sclerosis and Unexpected Changes
Last updated: October 2022
Change. It can't be avoided, it almost always can't be controlled, and is often somewhat unpredictable. No matter the scale, from the infinitely vast cosmos down to the mundane happenings of everyday life, nothing stays the same forever. Change is just part of the natural order. But for some people, change is much more prevalent in life than it is for others. Multiple sclerosis (MS), for example, is practically a synonym of change! So making plans and moving forward in life while living with this chronic illness can sometimes feel nearly impossible. For many people living with relapsing-remitting MS, in particular, their health is constantly changing! So, in my opinion, being able to not lose your cool and adapt to unexpected changes is crucial to living a well-managed life despite MS.
Watching my plans get destroyed
Since the time I was diagnosed with MS, I honestly couldn't tell you how many times I've sat down and confidently planned my path forward in life only to watch those plans be destroyed by unforeseen circumstances. Just when I think I've got it all figured out? MS hits me with a major relapse that seems to render my strategy for getting ahead in life totally unfeasible. OK, maybe the word "totally" is a little dramatic… but when you realize that, after a major exacerbation, you are no longer capable of something like driving? Well, let's just say that it's probably time to, once again, go back to the drawing board and reassess your options. To say that having to so often make adjustments to your plans in life is frustrating would be one of the biggest understatements of the year.
Reaching my goals by making adjustments
But that, I think, is the key to living life despite being stuck with a chronic illness. Being able to go back to the drawing board and make adjustments to your strategies in life so that you can still reach your goals. Because the alternative is trying to resist change and push forward using old tactics that life has, like it or not, made obsolete. As I mentioned above, I can no longer drive, but that obviously doesn't mean I can no longer work a job, buy groceries, or go to school. I can work from home, take an Uber to the store, and go to school online. Got to love the internet, right? Point is, be it my career or academic goals, I can still reach them, just not how I originally planned. I made adjustments and took advantage of the resources available to me.
Trying to find a new path around the obstruction
Let's think of life as a roadmap. You're in one corner, and you want to get to the opposite corner. You plot your path out and start driving but halfway to your destination, a giant pillar of stone randomly, and quite unexpectedly, erupts from the ground and blocks the road ahead. For the sake of this analogy, we'll just assume that this is a "normal" occurrence around town. Anyway, do you simply stop in place and no longer try to reach your destination, or do you look back at your map and find a new path around this obstacle? Oh, wait, it's 2020! You're probably using the GPS on your phone (not some old Thomas Guide), in which case it's currently saying, "recalculating, recalculating, recalculating," as it tries to find a new path around this obstruction.
Unexpected changes are a constant of life
The thing is, unexpected change will always be part of life, whether it's due to MS or not. There won't just be one "roadblock" in the way... Building on the above analogy, life with MS is more like trying to drive around a city where pillars of stone randomly pop up and down like a giant game of whack-a-mole. In order to successfully reach your goal on the other side of the map, you'll have to constantly make adjustments to your plans along the way. The road map of life is literally changing at random causing the original path you had planned to take to no longer be an option. I know that having to recalculate your path forward every five minutes can be extremely tiresome, but not as tiresome as resisting change and trying to "drive through those pillars of stones" would be.
Be more like water
"You must be shapeless, formless, like water. When you pour water in a cup, it becomes the cup. When you pour water in a bottle, it becomes the bottle. When you pour water in a teapot, it becomes the teapot. Water can drip and it can crash. Become like water my friend." – Bruce Lee
I love this quote. It so perfectly aligns with my overall point. Change what you can, but change yourself around what you can't. Water will always take the path of least resistance. If you place a rock in the path of a tiny stream of water, the stream will flow its way around the rock rather than try to push through it. The path to whatever goals you have in life doesn't have to be a straight line. I know it's easier said than done, but speaking from experience, after something like MS becomes part of your life, it's definitely worth it to try to be a little more flexible with unexpected change when you can. To be more like water.
How do you deal with the unexpected changes of MS?
Would you say that your life after MS came into the picture became a little less predictable? Is it still challenging for you to cope with new changes, or have you since learned to better handle it? Or has dealing with change never really bothered you? Let me know in the comments below!
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: