In my very first post, I wrote that I didn’t want to forget any part of this story. With the help of photos, text messages, emails, and my imperfect memory, I wanted to capture every day of our fight against a disease that acted out in ways that were supposed to be nearly impossible. That goal hasn’t always been as easy as I’d assumed.
There have been (many) days over the last two hundred posts in which I haven’t been able to remember much about the day and the electronic record has been less than illuminating. During those posts, our battle had not yet escalated and the days blended together to form unremarkable blurs. Our (Matt’s and my) text messages revolved around our Saturday night plans, what we should have for dinner, or what activities G and H had scheduled over the weekend. To write anything about those days, I had to sift through a decade of emails and photos to find something worthwhile to say. After each rambling post, I told myself that soon enough, I’d never have a problem finding the story in the day.
I was wrong.
When I sat to write today’s post, I searched the photos, text messages, and emails for something to write. No emails, no photos, and the text messages reveal only a few relevant sentences—that Matt moved from red level to yellow level, which meant he was allowed more independence at Kessler. I searched my imperfect memory. And found nothing. Not a spark of memory. The story is certainly now into those days during which the battle had escalated, and yet, I have no story to tell. October 16, 2017 marks the first of a week long blank in my memory. I have no memory of hanging out with Matt at Kessler. How we spent the hours in between therapy sessions, how G and H adjusted to another week without their dad, how Matt felt about his recovery—all of that information is lost.
So, the question becomes why. Why didn’t this week leave any kind of impression on my memory? Maybe there are only so many stories and memories one mind can hold and between what I’ve shared already and what I will share, my allowance has been filled. It seems possible—although, H swears that he remembers every day of his life, including his infancy. (And sometimes, when he’s reminding me about an offhand promise I made months earlier, I almost believe him.) Maybe between Matt and the kids, between racing around to keep the house running in order and finding time to pop into a Bar Method class, I was spinning too fast to make note of the details of our day.
Or maybe, I simply believed our battle was done escalating. Like those easy June days that I didn’t know to appreciate, maybe I believed I didn’t need to commit every detail to memory. We were far from done with fighting back against an aggressive brain tumor—we still had to make a plan to treat the tumor in the left parietal lobe, understand the origin and cause of the sclerotic lesions—but maybe I started to believe the worst was over. We had poliovirus—which could still deliver on its promise of a miracle cure (in my mind). We had Columbia and doctors who were listening. We had the support of family and friends.
And most importantly, we had Matt back. Not completely. Not consistently. But enough to believe in a better tomorrow, a better next week and next year. Enough to hope that the darkest days were behind us.