Shifting Sands

Apr 28, 2024

Lately, I feel like I’ve been stuck on existential hold, with a recorded voice repeating the same words over and over: “Your life is very important to us. Please remain on the line, and your questions will be answered in completely random order, at completely random times.”

I suppose it’s some comfort that my questions are the sort that time will answer one way or another? They’re certainly not the sort I can ignore and move on from: the most pressing one is whether the antivirals I’m taking for Mollaret’s meningitis are going to be effective in preventing recurrences - or, if not quite that, then at least significantly lessening the severity of the meningitis ‘flare ups’ to the point where I can (hopefully) regain more or less normal functioning once my brain has an uninterrupted chance to heal and rewire.

If the valacyclovir works, then hooray! The next question is whether it would be a good move for me to have “minor” brain surgery (the neurologist always uses air quotes when she mentions this procedure and uses that word, which I think is adorable) to put stents in my lateral transverse sinuses to re-open the veins that have had ‘high-grade’ stenosis since the beginning of August 2023. (I was rather proud of having stenosis that qualified as high-grade until I looked it up. 80-99% diameter reduction of the veins primarily responsible for regulating my intracranial pressure? Yikes, brain!)

If the valacyclovir doesn’t keep the meningitis from recurring, then we enter medical ‘Here Be Dragons’ territory, so I try not to think about that too much. (What does one DO with a life that involves getting meningitis every 4-6 weeks for what may be three to five years, or may be longer, or may be forever?) The question of the venous sinus stenting surgery would be even more on the table, though, because every time the meningitis hugs my brain and spinal cord not too wisely but too well, I risk losing more cognitive function.

And of course, all sorts of other practical life questions hinge on these primary ones: what will my health insurance situation be after this semester? In Fall 2023, I got salary and benefits continuance for the semester, which was amazing. For Spring 2024, I was given unpaid leave with medical benefits, and HR is ‘currently looking into’ what will happen with my health insurance if I need to take more time off. So far, Andy and I have been able to handle the medical costs of ALL THE THINGS because my college’s health insurance is amazing - like the health insurance of yore, when going to the hospital for a week cost you a mere $5. (Andy’s insurance is decent, but it’s hardly my current “Another brain MRI? Just give us your $35 co-pay. Thanks!”)

Meanwhile, I continue to wait for a decision from the insurance company on my long-term disability benefits - which is totally cool! Not getting any pay at all for four months is awesome when you live in NYC! (My exclamation marks indicate excitement and sincerity!) And we have no idea whether I’ll just need those benefits until September, or January, or…

And then last week Andy finally had spring break, and so we rented a car and drove all the way to West Michigan with Torbjorn to spend time with family and friends and roll around in the fresh green grass. Andy and I only rolled in it metaphorically, but Tor was beside himself with joy at the chance to roll in it literally. (Also, I know native gardens are much better for the environment than lawns, but looooook! This was at a rest stop on Highway 80 in Ohio. Who has ever looked that happy on I-80?!)

It turned out that the timing of the trip was ideal - but for decidedly mixed reasons. Andy got a real rest-and-relax sort of break, and Tor had the time of his life because one of my bestest friends in all the world came up to share the cabin we’d rented for a few days and brought her two dogs, who are Tor’s siblings from earlier litters. I, on the other hand, unexpectedly spent a great deal of my time not at the cabin, but in Grand Rapids supporting David through the funeral and related activities for his Grandpa ‘Doc’ (my former father-in-law, who was a pediatric neurologist). There’s nowhere else I would rather have been, given the circumstances, but it was still a very heavy week.

So there we are! The manure monsoon continues, and I would freaking love to have a week or two full of joy and good news. But I get that this isn’t the time for that. This is the time for taking a deep breath, standing on the sand while it shifts beneath my feet, squinting into the too-bright-sun, and taking a photo that shows every single wrinkle my friend and I have managed to accumulate. Not because we think wrinkles are so lovely, blah blah, but because we simply do not give a rat’s patootie. We are alive, and we are amazing, and - cliche as it is - that really is enough for now.