Joanna Jeanine’s Diary Entry #5
I’m still diligently chasing that next chapter—books, blog posts, social media—each word crafted despite, or maybe because of, everything that intrudes upon my ability to function day-to-day. In some strange way, the pleasure I get from producing meaningful work justifies the exhaustion that follows, though sometimes I wonder if I push so hard because I am afraid of fading into irrelevance, of letting down the people who have quietly depended on my projects for years. I keep coming back to the feeling that I had to sleep that intensely, that uncontrollably, a full-body surrender after prolonged strain, as if my brain simply overrode the familiar routines of insomnia because the creative labor demanded it.
I woke today and realized I had somehow slept for eleven whole hours—an almost mythical length of time for someone like me, whose nights so often dissolve into fractured, restless fragments, given the chronic insomnia that wields its own authority over my life. The grogginess that filled the first moments after waking felt like trudging through dense fog, my mind not quite latching onto reality, as if it too had been stitched together awkwardly after the chaos of so much deep, healing sleep. It’s funny, isn’t it, how our bodies can keep the score when we refuse to listen, forcing us to stop and rest at the most inconvenient moments, probably because there's simply no other option left; all those days and weeks spent pouring myself into projects—relentless in my pursuit of visibility and connection on social media, tending to the online world where my words and presence feel so necessary, almost like proof that I am still, in some sense, whole. I can’t deny there’s a particular satisfaction in seeing my creative work take shape, that sudden alignment of inspiration and stamina, though it so often comes at a cost. Last night, my neck throbbed with excruciating pain, sharp and electric, radiating upwards in those unpredictable flashes that only MS knows how to deliver, making my whole body clench tight, my thoughts spin in place with both anxiety and resignation. The shooting pains remind me how much physical sensation is tied up with the mental effort of recovery—not just the ache but the memory of past flares, and the silent dread that accompanies each new symptom. These days, writing is my way forward and my lifeline, but I have to admit the effort leaves me spent, and I am reminded every single time that my body and mind are undertaking a kind of ongoing negotiation, a private reckoning of limits, ambitions, and disappointments. I’m still diligently chasing that next chapter—books, blog posts, social media—each word crafted despite, or maybe because of, everything that intrudes upon my ability to function day-to-day. In some strange way, the pleasure I get from producing meaningful work justifies the exhaustion that follows, though sometimes I wonder if I push so hard because I am afraid of fading into irrelevance, of letting down the people who have quietly depended on my projects for years. I keep coming back to the feeling that I had to sleep that intensely, that uncontrollably, a full-body surrender after prolonged strain, as if my brain simply overrode the familiar routines of insomnia because the creative labor demanded it. There’s a bittersweet rhythm to this cycle—deep rest followed by slow reanimation, the familiar tug-of-war with my immune system, the balancing act with medications that both steady and sedate. Still, I hold onto the little victories—waking up, despite the aches, feeling just a touch more capable, believing in the possibility of moving forward. I’m learning that recovery, for me, isn’t just about time spent sleeping or feeling better after pain; it’s about reconciling the unsteady beauty of this “onward and upward” life: the acceptance that my body will always have the final say, the decision to press on with my writing and special projects, to nurture hope for new beginnings, even while still mourning the losses of old endeavors. Each day is a testament to how much resilience looks like stubbornness, creativity, and a degree of grace—chosen again and again, even on days that start out groggy and heavy, but nonetheless, are undeniably mine.
Joanna Jeanine’s Diary Entry #4
I am thinking of starting up a new book press, making the books very limited and in-house. Maybe it will become something better and more significant than the last endeavor. I had worked on that book press for 25 years. But it had to end.
I feel so much better today. Got some rest and started back on a regular medication regimen. I have to learn that I get very psychotic and depressed when I don’t take my meds at the correct times. I am working on a special project, and I hope to finish it soon. It has been taking a while. I feel bad that I haven’t released any new physical writings or books lately. I need to get back into that. I have acquired all the bookbinding materials, and I am ready to start binding my hardcover books. Creating and testing out my new glue binder for perfect-bound books has been fun so far; I just need to perfect the craft. The hardcovers will be challenging to begin with, but it sounds and looks so peaceful and serene to do when I watch videos of people binding their books. I am thinking of starting up a new book press, making the books very limited and in-house. Maybe it will become something better and more significant than the last endeavor. I had worked on that book press for 25 years. But it had to end. I think the name was caught on some kind of list or blocked in some way, because the traffic was low. Perhaps I wasn’t managing as well as I could. I feel like I've let some people down. But onward and upward.