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 #3
My dreams of the angels of Ezekiel’s vision have been haunting me. It is bad enough that I am hounded by regret and anger, even though those events of disgust are long past and gone, but it is another thing to be tortured by these voices and demons that constantly torment me.
Another night and another day without rest. I haven’t slept in a while, but I feel frenetic and filled with anxiety. My dreams of the angels of Ezekiel’s vision have been haunting me. It is bad enough that I am hounded by regret and anger, even though those events of disgust are long past and gone, but it is another thing to be tortured by these voices and demons that constantly torment me. On several occasions, I have awakened from dreams of terrifying angels into a reality of demons and devils taunting me. I cannot remember what it was like before the demonic entities that have become my constant and malign companions. Sometimes, the voices are so loud, it is unbearable, and I resort to the liquid antipsychotic when the regular four antipsychotics are not working. As of now, I am fatigued, but alert and agitated. Another night with the specters of the past, another night with Hell as the destination, and the entire world’s weight on my back.
Joanna Jeanine’s Diary Entry #2
It’s been hot here, and the weather is affecting my condition, my disease. The lesions in my brain and spinal cord swell when it’s hot, and I am unable to walk or get around as easily. I guess I should be used to it by now, but I’m not.
I’m planning on a couple of book releases this year. The majority of the writing is finished, thankfully. One book will be philosophical musings, and the other a book of poems and prose poems. I want to work on my novel, but I am stunned by anxiety every time I think about it. It seems like a monumental task, so I tell myself I only need to write a few pages at a time, each day, if I can. I’ve been so depressed lately, though. Less downtrodden and more sad. Somehow, it seems less sharp a downward trend than depression, more soft a descent, but still a spiral out of control. It’s been hot here, and the weather is affecting my condition, my disease. The lesions in my brain and spinal cord swell when it’s hot, and I am unable to walk or get around as easily. I guess I should be used to it by now, but I’m not. I’m pretty fearful. I have to get an MRI soon. I am afraid of what they will find.