Whitney rolled over in bed this morning to say,

Another year with us.

 

Yep, not dead.

 

I replied.

There’s an internet meme that shows a swear jar, but the caption says, “Drop a quarter in the jar when you bring up death inappropriately.” That is definitely an A&W thing. We also curse a lot. A lot. So, maybe we need two jars. Frankly, I’m not sure we have the loose change to keep us accountable, so I don’t see our profanity-laced death talk going anywhere anytime soon.

Apologies to our social network. We recognize that what we share as light-hearted topics are actually conversation stoppers.

It was December 26, 2014, that I had my first seizure. We, of course, didn’t know that’s what it was at the time, but like a lot of brain tumor patients, we didn’t diagnose seizures until I was put on an anti-epileptic drug and the dizzy spells stopped—or least slowed down. Seizure management has been one of those pesky issues in my brain cancer experience, but we’re pretty well locked in now.

We sold that condo where I had my first seizure, shortly after my diagnosis and so, in time, in place, and in knowledge of the disease, that first seizure this time of year a decade ago feels like a completely different life.

The tough thing to understand for those outside of the brain tumor community is that we report on our experiences like the pre-game commentators go over the injured reserve list before kickoff. Most folk knee-jerk to sympathy mode, but I think for most of us, it’s not sympathy that we’re after; we’re only reporting. We want to say it out loud because speaking it brings us all into the same, shared space. I want you to know that carrying an existential stowaway is a persistent threat; we’re always waiting for the boarder patrol guarding the thin line between this world and the next to find us out. Death is a secret our doctor’s whispered to us, but they didn’t share the encryption key. We know we’ve got classified information, but the knowledge of what and the knowledge of when are not for us to know. Knowing too much would torture us, so we’re spared the pain of counting our days through the bliss of ignorance.

I suppose saying it out loud keeps us in a ready state for the future, even if we have to drop a quarter in the jar. So it’s another year together, and we continue to pull ourselves through it. A decade after my first seizure, eight years after diagnosis, one year after recurrence… Yep, not dead.

This blog post was published by Glioblastology on December 25, 2024. It is republished with permission.