Starting Part II of My Life With MS
Last updated: April 2023
Most of us, in one way or another, are familiar with the concept of people describing a significant change in life as “starting a new chapter.” After being diagnosed with multiple sclerosis (MS), you might consider starting your first treatment as the beginning of a new chapter. Or maybe it’s when you got serious about diet and exercise? Or when you finally saved up enough cash to visit another country for a stem cell treatment? “Things are going to change; this is the start of a new chapter in my life.” This event, this moment in time, serves as an important marker in the timeline of the “book” about your life with MS. Everything after that one moment would be different, and the plot of your story would completely change.
Life after my MS diagnosis
At least that’s what I thought every time I declared to myself that a new chapter in my life with MS had begun. “Things are going to be different.” The thing is, while my life with MS did evolve after each chapter, the theme of my story always remained the same. Something bad would happen (like being diagnosed with MS or suffering a major relapse), I would enact some sort of change (like starting a new treatment, diet, or exercise routine), things would be better for a stretch of time, and then… for whatever reason… I would somehow find myself back at (or close to) square one. I never seem to really move forward in life; at the end of each new chapter in the book about my journey with MS, everything basically resets like in the movie “Groundhog Day.” I start each new chapter at the same low point that first pushed me to want to change things in the last chapter. The only difference is that I now had the knowledge of what went wrong the previous times. New chapter, same plot.
I'm tired of this cycle
As of this summer, I’ve had MS for nine years. On the one hand, nine years seems like forever, but on the other hand, nine years seems like nothing - just a tiny fragment of the rest of my life. I’ve been through so much yet… here I am, essentially back at square one. I wake up feeling terrible, and I go to bed feeling terrible. I used to be capable of so much, and I had so many dreams of what my life would be, so many goals, but after nine years with MS, they all seem so distant; they’re just out of reach of my now not-as-capable-hands. I’m tired of this cycle. Of feeling like I’m not actually moving forward. I’m not content with my current life situation. For a while now, I’ve been telling myself that something really has to change but not like before. Because something always had to change, and it always did, for a while… and then, before long, everything would start over. A new chapter would start, but the plot would sadly remain the same. That repetition is what has to change, that plot.
The ten year mark
Well, we only get one life on this earth which means that I only get one “book,” regardless of how much I would love to just throw the one I got away and start a completely new one. But you can’t erase the past. Everything that has happened in my life, all the good, bad, and MS-y, are here to stay as different chapters in my story. However, that doesn’t mean that the repetitive theme of starting a new chapter only to end up back where I started time and time again can’t change. So instead, I’m looking at the 10-year mark in my life with MS as merely the end of part I and the beginning of part II of my MS story where a new series of chapters will start. A new plot, and a new theme: different, but shaped by, part I.
Finding a way to actually move forward
I’ve been thinking about this moment and carefully planning it out for a long time, and so, I’m about to radically change my life, change it in a way that will actually allow me to move forward rather than just continuously ending up back at square one. Of course, there will undoubtedly be many new trials and errors; it’s surely not going to be as easy as I may be making it out to seem, but it is that simple. I have to change my way of thinking and try to solve my “problems” in a different way than I’ve tried to solve them for the first decade of my story with this chronic illness.
Excited to start part II of my life with MS
People always talk about how the definition of insanity is doing the same thing over and over and expecting different results. With that in mind, I can’t approach my yet-to-be solved problems with the same way of thinking and expect my situation to magically improve. So, I’m excited to start the first chapter in part II of the book that is my life with MS, and I’m eager for the day that I’ll be able to look back on this change as the very moment in time where things finally, for once, took a turn for the better. When MS ceased to play such a central role in my story.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: