The Moment My Life Changed - A discussion of perseverance through a debilitating Nerve Dystrophy as an Artist, Writer and Human

The moment my life changed wasn't the day our family realized that our mother suffered from Munchausen by Proxy, a severe mental illness. Everyone knew, but no one talked about it. The members of my family, the siblings' relationship with their Mother and Father, family, and themselves broken into smaller pieces each moment of their dark days. 

It wasn’t when I understood that there was no comfort or words of love that could come from a silent, incapable of expression, product of his generation, Father. 

The moment when my life changed wasn’t the day I was raped by a boy I had a crush on and had no one to tell but my diary. Still too young to even think of the possible consequences, puberty having just begun. The story of most young girls and women continued, no better story to be written in Hollywood. 

My world didn’t change when I was sexually assaulted in a classroom full of my peers when the psychology teacher left the room. The joy of my life was learning and my mind was filled with curiosity, wanting to explore the wonders of the world. 

My life’s pivotal moment wasn’t when I graduated with honors and a college readiness, but no college to go to. I almost made myself fail my Senior year, to stay in school. It wasn’t the moment I escaped from my home, filled with terror from my Mother’s growing madness- with an older man who I thought knew all the answers to my many questions about life, but he didn’t. 

My life wasn’t changed when my lost heart was found, like most of us, seeking a relationship of love and trust and finding the challenge deeply fraught with pain. My life didn’t change the moment my daughter was born, by cesarean, and breech, by a retired doctor on Labor Day, (You can’t make this up.) There were no other expecting women, or post-birth mothers to share my birth horror story. A rural, empty labor and delivery ward, no babies crying, only my cries of pain and despair, bouncing off of sterile, white walls. A tiny daughter whisked off, born too early; 10 days alone with no child. The loss of the experience with a doula and a simple, natural birth had escaped my desire with a silent, internal scream.. It wasn’t the moment I opened my own art studio; A small business with a life of its own, growing through sheer will alone. But my wish for it to be something real and accepted was ripped away by a mothers comment, “When are you going to get a real job?” Then, as if Hades had heard my Mothers sneering voice, on a mid-afternoon spring day, a devastating fire blew out the building and then crept ever so slowly until it exploded the front wall of my 25 year old fine art and graphic studio. The home of all my experience as an artist, a lifetime of work, now lay in rubble and burnt dust. 

My life didn’t change as my daughter grew beyond the walls of her birth bower and left the nest I had struggled to maintain, seeking her own nest to build. The young woman now seeking the world on her own, the terror visceral in my throat.

A decade of terrible loss more than can be described in these dark lines of written experience. 

The moment my life changed was a beautiful day; bright blue sky and warm fall air. A glorious moment filled with golden light. The joy of independence and a hopeful future. Pushing past the trauma that lay inside, squirming and slithering, ever rising to the surface to remind me of the chain I pulled behind me. 

The world spit its reality and a dream unfolded before me. A second of existence moving slowly, like frozen water, sliding across my field of vision. My body moved like a moving snake, twisting and turning with an elegant wave. A bright flash of pain. My mind was unable to fathom what had just happened. Months of a rush to find an answer, where none would be found. Of course it is a rare thing. No normal broken bones or damaged muscles here. The questions of purpose driven to the deep darkness of sorrow and a life potential unfulfilled. 

The alternate journey had been chosen by another, befalling on a simple heart, a gentle soul with a world of ideas to give; no longer in control of her body. A heart along for the ride with another driver at the wheel. There were many attempts to turn back the tide of this storm cloud that had followed every second of my days. 

Sigh…so there, there it is. 

The neverending cycle of questions and a purpose driven life, swallowed by the unexpected; a life crushed under the weight of sepia tones, hollow and in shadow. The moment was still weaving in and out of my day to day existence. The scene playing on a forever computer loop. Suddenly, I felt as if I had no more purpose than the autumn burgundy, red and orange leaves gathered at my feet. 

This is my story, not unlike many souls throughout humanity, but most are unable to speak to the nature of their brokenness, and achingly slow recovery. 

I’m in the fall of my Life’s journey and never have felt so complete. My Nerve Dystrophy will continue progressing, each day taking bits of my ability. The pain is ever present, recalling the moment of the crash of the car into my body. But, finally there is a sense of ground beneath me. Though the wind does blow against my shivering skin, and my body leans back and forth, I have come to understand the many arms, unseen as they may be, are there to catch me when I fall. This is survival at its core. 

The recognition that there are times in our path, that we feel the desperation of loneliness, and feel powerless to change what’s happening. All it takes is one step forward and we get there with a million, million souls behind us that went through the same heartache, and some…much worse. We carry those burdens in our very DNA, not even realizing it’s there until Gaia decides to throw a branch on our car. 

Screamin, crying, curled in a fetal position, became my safe space for many years, but the light always, and ever, has pulled me forward. The tiny spark of hope that drives the human condition to seek something better than what they have.