I first dabbled in writing a number of years ago. There was a story in me wanting to be told. It was the story of how I survived a brain tumor. Not mine. My son’s.
Matthew, our older of two boys, was 11 at the time he was diagnosed. No one knows exactly when or how the tumor began. What I know is that in 1994, at the age of eight, Matthew started to become, well, not Matthew.
It took three years to arrive at the correct diagnosis of brain tumor. Myriad misleading diagnoses, clueless doctors, and baffling behavior changes in my son nearly caused me to self-destruct in those years.
The tumor is medically benign, as if anything capable of such devastation merits that description. The tumor is also inoperable. Clinging to Matthew’s brain stem, it hides so deeply within fragile tissue that any attempt to reach it would have cause irreparable harm. It’s still there, which is why I refer to it in the present tense; so far it’s been 20 years.
Matthew will live with his tumor forever. I hope that’s a long, long time.
The pinnacle of the crisis was over in 1997 by the time I grasped that it was a story worth telling. Our family was in the midst of the downhill slide to recovery, and it was a bumpy road indeed. We believed and pretended we had returned to normalcy, but defining “normal” with a brain injury is tricky, if not impossible.
For many years after Matthew’s diagnosis, the tumor ran our lives. It was mischievous, like a playful poltergeist. Quiet and in hiding much of the time, it waited until that moment you forgot about it. Then, sneaking up from behind, THWACK!, it brazenly knocked you upside the head.
I’m here, I’m here, remember me? it mocked.
It toyed with Matthew’s memory, sense of time, and awareness of his surroundings. It toyed with me as well, and my equilibrium spun out of control like a wobbling top.
The stress took its toll. When my steadily declining health finally forced me out of work for two weeks, I had time to wake up to the truth of what needed to happen. It was so obvious, like being hit over the head with a 2X4. As the mom, it would be up to me to get my family back on track and I decided to leave my job to be a stay-at-home mother for a while. During my time as a “kept-woman,” as I jokingly called it, I would write my story. A memoir.
My writing skills were pretty decent, so I thought. But a whole book? What was I thinking? I signed up for writing classes and joined a writer’s group. It quickly became apparent that telling a story well and holding a reader’s attention for more than a paragraph was painstaking work. I felt it in my cramped fingers and my fragile ego. My writing instructor taught us to call our first draft our “vomit draft” because that’s usually how good it is. Anne Lamott, the best-selling author, says “shitty first draft.” Mine was more like a norovirus draft.
However, I was blessed to have an instructor who commended my efforts to get a jumble of words onto paper and read my work aloud, shaking with emotion as I did.
Part of the learning process in the subsequent years has been to try my luck at some smaller projects – personal essays – and I did manage to get a few published. Then I started my blog, TheWellNestedLife.com, which was great fun and honed my writing skills.
As far as my memoir, I didn’t finish it back when the wounds were still raw. There was a deep well of anguish that needed to be hauled up and spilled out onto the page, and the work was too dank for me. I left it suspended in mid-air before the rope unraveled completely.
That was about 15 years ago. Now, I am again in an unplanned career “sabbatical” and I have again decided to tell my story. You’ll see some of it unfold on this site as I pick up where I left off.
Spoiler alert: the story is uplifting in the end. Matthew will turn 32 in 2018 and is thriving beyond all expectations. You’d never know there was a problem. I would, but I know what to look for.
I want you to know because this is a story of survival.
Now, where was I…