What a labyrinthine chapter this has been. A viscerally stagnant, meandering, part of the journey that has felt like being lost in woods I used to know. A feeling of my life having fallen into utter purposeless on the surface and yet mysteriously purposeful underneath, in its confusing silence. I have spent the last 3 years immersed in the absence of knowing anything at all.
Living apart from the flow… The limitless stream of words that used to run through my veins… inaccessible to my reach.
Then today, I found an old journal, given to me by a friend years ago. It said,
Suzi,
“If you think you are too small to make a difference,
try sleeping with a mosquito.” Dalai Lama
Never stop writing. I love you sistar.

I scoffed thinking, “Yeah, I wish I still could,” and then felt the pang in my heart… that kind that one gets when thinking of a dear friend who’s passed on. That longing for something that once was.
I ran my fingers over the handwritten message and sighed. “Is this some sort of Divine Intervention? A nudge from the universe to get back on the horse? Who even knows.” I thought. I tossed it into the donation box, destined for Goodwill later today and went on about my Decluttering …
Over the last few years, amidst the snuffed out fire of my inspiration, there has continued to smolder a secret hope that I might, one day, reconnect with the creative force within. That free flowing breath of expression… That courageous fire to overcome…. That grounded assurance to remain steady amidst the winds of change and destruction… Those waters of emotions that once brought my heart to the world.
I’ve missed these things. The peace and purpose they brought to me. My place to process here.
But I haven’t known where to start. What to say. How to live and flow with the freedom I once did and yet bolster my heart enough to withstand the judgments and naysayers of the world.
Nearly 3 years ago, trolls found my blog, then my social media. The harsh criticism and judgmental words of a few, combined with the fracturing and infighting of the disability parent community, broke my heart. It triggered old childhood wounds of rejection and being misunderstood. It triggered early adulthood wounds of psychological fuckery and abuse. It illuminated so many fragile parts of me that, up until then, had been so neatly tucked into the recesses of my being that I didn’t even know they still existed.

So, in an act of self-preservation, I came to the logical conclusion that I was far too soft, too sensitive, too unhealed to be in the world as I’d been. I formed the belief that a necessary prerequisite of a person living on the public stage of the internet was obviously a bomb proof sense of self and adequately shielded heart. Neither of which, I possessed.
So I left. At first “just for a while.” And then, “for a little longer.” And ultimately I fell out of love with this way of sharing, believing that the world no longer wanted to hear my politically incorrect truths about the life of a medical parent and feeling clear that I was ethically incapable of telling only the parts of our story that were palatable and polite for the current cultural ideology.
Realizing the many pitfalls of living life aloud for all to see, I convinced myself it was a waste of time and energy that I didn’t have to give. And anyway, perhaps it had just been a selfish endeavor all along, A self-centered exercise in fortifying a mother whose grief was too heavy to carry alone.
She needed to be seen, supported and witnessed. She needed a purpose behind all the suffering. And so she created one.
And although all of those things are true, there was another side that I’ve only recently come to know. That the sharing gave an avenue for life to flow through me. Through my and Oliver’s little sliver of human experience… I found a way for my artist’s heart to connect with the world.

Without a channel of creation, and nowhere else to go, stagnation set in and stuckness began.
It was slow at first, the extra space and silence, the absence of criticism and self imposed obligation felt freeing. But little by little, I felt the light go from my eyes. I’d witness the sunset, but not take the picture bc “there was no one to share it with anyway.” I wasn’t going to bring the beauty to anyone else and so the image would just sit there on my hard drive, just as stagnant as my soul. The whole exercise seemed rather pointless when it was all just for me.
Next came the retreat of my heart, which slammed shut in protection and, over time, felt safer and more secure that way. I told myself I was protecting my family. The world was only becoming more uncertain and dangerous and I’d likely shared too much by now anyway. Maybe irrevocably so.
But the final blow was to my motivation to get Oliver out in the world. To find a way for my family to overcome our obstacles and claim whatever adventures I figured we could.
Making the videos of those adventures, silly little reels that took too much time and required technology that raised my blood pressure, in the end would make me weep tears of joy. Listening to the perfect song and watching the images, strengthened my heart and built motivation to overcome whatever challenges lie ahead. My social media feed was a digital scrapbook of a life fully lived, no matter how impossible it may sometimes seem.
All of this was my self-created life-line…

Over the last 3 years, in my den of reclusion, I’ve over-thought this topic to death.
This part of my journey has meant many things to me. It’s been a time to reflect on how much reliance I had on the external world’s approval. How much a cared what people said.
It’s helped me to see how many needless demands I placed on myself to perform. Feeling pressured by the fervent self importance that characterizes the social media world for many of us who, ultimately, give far more energy than we have for the carrot of stranger’s feedback.

It’s illuminated my pattern of over-giving and leaving myself behind, all in the hopes that people will value me. It’s been a time to rebuild wounds from a distant past. To begin to build a true self esteem that was never really there. And to remove the masks I so diligently created to hide my softest, truest self, from the world.
What a beautiful, torturous, confusing ride the last 3 years have been. And as much as I’ve hated them, I wouldn’t trade them for anything at all.
So here we are. I am utterly unsure of where I’m going. But every journey starts with one step and this is mine.

Ps. I took the journal back out of the goodwill box and decided to use it and it’s magic instead 🦋
Glad you are back at it. I care for my grandson who is named Oliver too and has quad cp and epilepsy. Always felt not so alone is this just by reading your blog posts.
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It’s nice to meet u Grandpa and Oliver! Thank you for your comment. I’m glad we could connect in this little corner of the internet and know that we are both not alone. ❤
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