Each morning I wake in a body that feels older than its years. My joints are swollen, my eyes and mouth dry, my skin aching with the fire of vasculitis and the heat of cellulitis. Layered over it all are the familiar companions of C-PTSD, depression, and chronic pain. Some days even standing upright feels like a rebellion.
And yet, I am grateful. I give thanks for another proper diagnosis after so many years of guessing and disbelief. Too many times I have been misdiagnosed, too many times dismissed when I tried to describe my symptoms. To finally be seen and heard by a doctor is itself a kind of mercy.
I hold close the day itself, for the chance to walk into it, however faltering. I give thanks for the small mercies: a flower opening in the garden, the harvest gathered from earth, the warmth of tea in my hands.
I remember another rebellion. In 2012, I wrote my first book. That book was not born from ease or leisure but from fury - from years of being silenced, dismissed, ignored. It was my way of speaking when silence had nearly crushed me. Before that, there had been my blog, the first place where words felt safe to land.
Then life and pain returned with their heavy hand, and silence came again. Years where words slowed to a trickle, where I feared I might lose my voice forever. Much of what I endured from 2015 onwards I have already spoken of in Phoenix Warriors. In that book I shared not only the weight of those years but also the small, steady techniques I used to survive each day, week, and year. Simple practices like keeping a journal beside my bed to empty my mind before sleep, stepping into the garden to breathe among herbs even when I could barely stand, or breaking time into tiny tasks that could be done without shame or hurry. These small acts were my lifelines, threads that held me when everything else seemed to unravel.
But now, I write more than ever. Books, poems, lyrics, music. Words spill out like a river breaking through stone. I write not only for today but for tomorrow, not only for myself but for those who may one day wonder who I was. I write to leave a trace, a cairn of words on the hillside of memory.
Silence did not have the last word. Rebellion gave me breath again. And legacy - that is what I build each day, word by word, even in the midst of pain.
I do not know what the future holds. There is less uncertainty now than there once was, yet still I wait on new test results, this time for an abdominal mass. It could be anything, and the waiting is its own trial. I only want to know. Whatever the answer, I remind myself that I have faced much worse and I am still here. That knowledge steadies me, a quiet strength beneath the fear. And still, even in the waiting, I find gratitude - for the garden, for words, for the chance to wake each day and call it mine. Hope remains a companion, soft but steady, reminding me that whatever comes, I will meet it with the same resilience that has carried me this far.
Some might question why I release music alongside words. The truth is simple: the melodies and the words are mine, even if the voice is not. There are those who grow angry about the use of computers and AI to shape song, but I am not trying to copy anyone. Nobody else has lived my life, endured what I endured, or carried these stories in their bones. I survived a great deal. Words were always my first escape, then music. Nobody but me could write my experiences into song or poetry, and no machine can invent that. It comes from me, and only me.
There are many ways I bring these words and thoughts into being, especially on days when pain makes writing by hand impossible. I use voice memos, speech-to-text tools, and even modern assistants like Alexa etc to capture fragments before they fade. Sometimes an image sparks a phrase, sometimes a melody catches hold of a memory. Whatever the method, each tool helps ease the passage of thought into words, into music, into presence. Sometimes I record lines while lying in bed in the dark, whispering them into my phone before sleep. Other times I hum a tune into a microphone so I will not forget it by morning. These fragments become seeds, gathered and shaped later when my hands and strength allow.
I once played on a music keyboard too, but my joints no longer let me. Still, the memory of those keys under my fingers reminds me that melody will always find another path, whether through voice, technology, or the quiet hum of persistence.
This is my way of leaving a legacy, in every form I can: on the page, in the garden, in melody. However it is carried into the world, it is still my voice, my truth, my survival written into sound and story.
May these words, and the life they carry, remind you that survival can still flower into song.
