When I was in 10th grade, a guy delivered an unforgettable presentation at our high school assembly. It was about the dire consequences of…something (sex? drinking?), which we were warned would stick with us FOR-EH-VER.
Over and over, he repeated it: FOR-EH-VER. FOR-EH-VER. I’ve long forgotten (and probably instantly forgot) the critical lesson, but the punchline has lingered, well, you know.
The issue with trying to convince people that something bad will last forever is that it’s impossible to understand the length of forever until we’re in it. We necessarily convince ourselves that good things will last forever and that bad things will eventually change.
It’s how we end up doing things like getting married or driving through Everett during rush hour.
After Luella was born, my brain glitched trying to compute “forever”.
At first, it came as a question: “Will it be like this forever? Forever ever? What about like, after forever?”
When it became clear that the impacts of Luella’s brain injury would be long-lasting, the answer came as a foreboding threat: “Yes. It will be FOR-EH-VER.”
And after years, it’s largely settled in as a reasonable, unthreatening matter of fact:
“Yes. This is forever.”
It’s this final approach that seems to be the most unnerving for others.
Periodically, people still hopefully ask, “Will she ever walk?” to which I’ve always truthfully (and a little brazenly) answered, “No.”
It’s not the answer people want. Or accept.
“B-b-but, brains are amazing! You never know! One day! IT COULD HAPPEN!!!”
Aghast at my hopelessness, they cheerily convince themselves that maybe forever isn’t FOR-EH-VER.
Nothing is actually forever, of course. There will be more or less medicines, different diets, changing doctors, more frequent or fewer seizures, etc., but the basic fact remains, that this is a permanent condition that will significantly impact Luella–and us–for her entire life.
I don’t wander into FOR-EH-VER very often but I periodically (and often inexplicably) find myself there. FOR-EH-VER is depressing, expensive, and UGH.
“It will be like this forever. FOR-EH-VER. FOR-EH-VER,” I repeat to myself.
And finally, when I’m like, “Why am I so SAD?!” I realize where I’ve ended up and I force myself to walk back into reality, into right now:
Happy, toothy-grinned Luella, laughing at the cat licking her hand.
Here, FOR-EH-VER is just forever, but mostly it’s just really not that important at all.
FOR-EH-VER may work as a threat (although it’s likely I immediately did whatever it was that assembly warned against). But now that I’m in it, I’d much prefer to ignore the vast, looming expanse of time ahead of me entirely, thankyouverymuch.
Instead I’ve found that sinking very deeply into Luella as she is, at this very moment, is my best bet.
Perhaps the lesson here is that good things and bad things sometimes last; sometimes they don’t. Shrug.
In fact, when I look ahead, I’d venture to say only one thing is totally certain. Poorly-executed, fear-based school assemblies? Those memories really will last. FOR-EH-VER.
Luella Health Update: Luella’s doing great! Since starting the ketogenic diet and adding another seizure medication, she’s much, much more aware and engaged. She’s very smiley and easy to make laugh. We’re just having the absolute best time.
She is not, however, sleeping. Which means…no one is sleeping. We’re not entirely sure why, but we think she may be hungry so her doctors just increased her daily caloric intake.
Luella’s muscle tone has been stiff–a common effect of cerebral palsy–so she just began a medicine to help loosen her up, particularly her legs. It comes with a slightly increased seizure risk so it’s a slow build to a regular-sized dose, but so far we haven’t seen anything out of the ordinary. It also comes with the possibility of drowsiness (I mean, not the worst thing given the “HI NO ONE HERE HAS SLEPT FOR 6 MONTHS” issue).