writing the book while still living the story
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Over the past many months, I’ve spent countless hours writing and revising a book about living alongside chronic pain. In many ways, the process forced me to revisit this experience more deeply than I had in years. In other ways, it challenged me more than I imagined.
I probably hoped on some level that writing the book would create some sense of resolution, a way to demonstrate to myself that I was somehow “beyond a certain point” in navigating this surreal situation. But that wasn’t my experience. I didn’t write a book and suddenly transcend these struggles. I wrote a book while still actively living them.
As I revisited difficult parts of this journey, I often found myself affected in ways I hadn’t anticipated. Certain chapters required me to step away for a while before returning. Some passages brought old grief back to the surface, while others confronted me with memories I thought I’d already put behind me.
There were days when I opened the manuscript and immediately closed it again. Days when rereading certain passages brought me right back into parts of this journey that were hard to relive. More than once, I found myself wondering whether I was truly ready to share any of it at all.
There were many times when I also found myself doubting the quality of my own voice. I questioned whether I had articulated my experiences clearly enough, whether I was expressing certain ideas in the “right” way, and whether I was somehow falling short in translating such an internal and complicated experience into language that others would genuinely relate to.
As I labored over details like the choice of words or phrasing, I asked myself many times what mattered more: the fact that I’m sharing this experience, or how perfectly I shared it? Would those reading it care more about feeling seen and validated, or would they ask themselves why I chose a comma over a semicolon? These were the kinds of things that helped me stay grounded in those moments of self-doubt and obsession over things that didn’t matter in the end.
And amidst all this writing and editing, I was still just a regular person trying to get through my days and manage life with pain. I had to consciously limit the time sitting at my laptop, remembering to shift position and take frequent breaks, both physically and mentally, from this task of sharing something so vulnerable with the world.
The truth is, I do still experience moments of fear and discouragement. I still sometimes compare myself to other people and their active, full lives. I still lose perspective at times. I still need reminders of all I’m doing right. I still find myself returning to the very practices and reflections I’ve spent so much time writing about.
While I’ve done a lot of inner work to adapt to this reality over the years, the process of writing this book reminded me, over and over, that I’m still actively learning how to live with all of this.
There were moments when this frustrated me more than I wanted to admit.
Part of me wanted to believe that all the inner work I had done would eventually lead to some sense of arrival, some identifiable point where the lessons would finally settle once and for all. I wanted to reach concrete, recognizable milestones that would help me measure my progress and reassure me that I was doing things “correctly.” It’s not unreasonable to expect such a thing after a lifetime of situations where that’s been shown to be true.
Before chronic pain entered my life, I was accustomed to that way of thinking. I had spent nearly three decades teaching German language and culture, and over time, I developed a sense of familiarity and confidence within that work. There was something reassuring about my years of experience: I knew the terrain. I trusted my knowledge. I understood the structure of the subject well enough to guide others through it. After all, I’d gone through the rigors of learning the language myself.
But life with pain has felt entirely different.
In what seemed like the blink of an eye, I went from teacher to student again, from feeling relatively proficient in one subject to becoming a novice in another. Disoriented, uncertain, and completely outside my comfort zone.
There is no clear curriculum for this experience, no final exam, no lasting sense of mastery. There’s no identifiable moment when we suddenly become “experts” who no longer struggle, question, compare, grieve, or fear.
And somewhere in the process of writing this book, I realized that living with chronic pain might never fit neatly into the same metrics I had spent much of my life relying on. This was one situation where I could start from exactly where I am and be both student and teacher at the same time, still learning while sharing something meaningful with others.
Instead of viewing the return of all the grief, doubt, and vulnerability I felt while writing as evidence that I wasn’t “qualified” to share my story, I reminded myself that speaking authentically about my experience was probably what most others living with pain needed to hear most of all.
Setting it all down into words didn’t need to be easy or pleasant. It just had to be honest. And sitting in the fullness of those emotions when they arose meant it was.
What I understand now is this: While the book will soon be finished, the real work will never end. It’s something I’ll continue moving through for the rest of my days.
Maybe that’s exactly how it’s supposed to be.
Oddly enough, I find that comforting now. I’m beginning to understand that I don’t actually need to become masterful at living alongside chronic pain in order for my experience, or my voice, to matter. I don’t need to achieve anything before I’m allowed to speak about what this journey has been like.
I can still be learning, even struggling sometimes. I can be those things and still share my story.
And maybe that’s enough.
With you on the journey,
Julie 🦋