Mining the Nerve
Today I'm writing about telling our story, because this is an important moment in my journey with James.
We had a very emotional day yesterday. I was writing about that day, the dramatic “inciting incident” of our story. It’s how I want to begin my book. Between bringing tea and turning on his computer I mentioned what I was writing about and, without intending to, I introduced information which was newly traumatizing for him.
This was the day in July of 2019 when we brought him to the Emergency Room, unable to stand up, 113 pounds at 5’10” and too weak to do anything at all. He was crashing badly, and that was a term and a symptom we were not aware of yet. He spent the night after they ran all kinds of tests on him, mostly so they could observe him and give him IV fluids for being dehydrated. I am writing about this day first, because this is when I realized, James looking near death without any medical support, that I would have to care for him.
What he had never known, that I assumed we had shared that day, was the doctor’s suggestion to send him for a week or two to a psychiatric hospital.
Like a miner finding a vein of ore in a mountain, I had discovered that I didn’t really know the information I needed to write that day accurately, and we started to follow that vein together. What I remembered. What he remembered. His memory is so much better than mine. That memory is galvanized for him, was everything to him. But to me it was on top of a million other details. I was still working full-time as I slept on an air mattress in his living room. I was figuring out how to get him to the hospital, getting caregivers to come to his apartment so I could work. My mind was overwhelmed, which meant I was not remembering the important details of that day’s events accurately.
Yesterday I unintentionally struck such a nerve, that lightening bolt of pain that sends you reeling, because I had assumed he had heard this information that day.
We each drilled into that traumatic memory. An accurate timeline and objective facts needed to be exposed. The vein in the mountain was a raw nerve again for both of us. My feeble hugs did not seem sufficient yesterday. An electric pulse shot through our joint hearts.
He forgave us for considering something that could have done him irreparable harm. And he considered that, had he heard this news that day in the hospital, it would have sent him over the edge, causing the kind of mental breakdown they were already accusing him of.
I cried walking Jasper. James was in his room alone, traumatized enough by unearthing memories of what actually happened, and newly traumatized by what could have happened to him. He will try to write to me, share how he remembers that day, but not right away, while still reeling from newly horrifying information.
Writing this book is the hardest work I’ve ever done—and I raised six kids alone while working full time and freelancing. I am exposing James with his permission. His worst moments. And I’m exposing myself in my most humiliating light, as I struggled to come to terms with derailing my own life to care for my adult son, full time, in my sweet little house down south. This is where I was supposed to be retiring to draw and write children’s books. Making James my number one priority was not a pretty journey. But I have to share it. I have to write the New York Times Bestseller that will pull on heartstrings across the world and get Severe ME people like James support. James and I are privileged. Others are not surviving.
You might see me now as a confident caretaker fighting for my son, fighting for strangers at the same time to get the help they need. I look heroic. Scratch that. Look back. In the rear-view mirror of my book you’ll see that I was as confused and selfish as anyone faced with Severe ME, the ruinous, debilitating disease that still lacks medical awareness and is treated with devastatingly harmful advice.