This was written by a young artist with M.E./CFS and Lyme, named Elyse Kiera Hasenberg. It’s beautiful in its poignant honesty. (She kindly gave me permission to share it here). This touched my heart. I feel so strongly especially for young brave people like Elyse who are stuck down with ME/CFS. She is also an artist. I have seen her photos and poems and she is very talented. She seems like a lovely young woman who never deserved to be faced with the struggles she is faced with every day…and yet you can tell she has the spirit of a warrior:

I remember when my hair was full of knots and my knees stained with dirt. And when I spoke, questions of wonder bubbled out from my rose colored lips. The heart I held within my chest was as trusting as a delicate porcelain teacup. I wandered through thickets of weeds and sang myself lullabies entangled with fairytales. My world was delectable like homemade lemonade on a warm summers day. How I loved when the wind rustled the leaves furiously while teasing my balance, as I would tightrope across papery plywood as high as the stars.Always was I ready for the unknown, charging with excitement into my next grand adventure. I never ran away when met with danger, for my curiosity led me over unsteady hills and through exposed construction zones. As a blooming adult I flew down side streets in my mustang, music blaring from the windows, moonlight dancing through my auburn hair. Boys and romance intensified my waking life, spilling over into my dreams. A fiery passion was blossoming in my vast and auspicious sky.I was only just discovering who I might become. Little did I know then, my world was about to stop. Fragments of my youth frozen in time.An existence so isolating and treacherous unfurled before me. Where health once existed, a life altering disease would take its place. The freedom I experienced as a child and adolescent were soon to become a distant memory as I was pushed headfirst into a harrowing nightmare.I deeply miss that carefree girl, who had once chased the world in dresses made of poppies. And ran barefoot through abandoned houses haunted with feathery ghosts. Who was out climbing mountains before the sun was at its peak and who slid down the banisters without holding on. However, she is still here with me, she is the strength and the fire that keeps relighting my waning flame. She is my reason for surviving what has felt unfathomable. She is the one who continues to whisper in my ear, “Our story isn’t over yet, this isn’t how it ends, there will be a brilliant light at the end of this long tunnel, we must keep trudging on.