End. And beginnings.
This night, we took a moment to reflect on how far she’s come.
What have you been up to since the election?
If you’re in a circle like mine, you’ve been connecting to likeminded folx; drinking lots of kava or chamomile tea and coffee, alternately; and prepping, complete with outlines for Plans B, C and D. Me too. All that, and reflecting.
My daughter and I were reflecting when we photographed the portrait above. Watching the Portland crows fly by, barely lit by city windowlight, we sipped warm drinks at Caffe Umbria on Madison, letting ourselves feel what, in recent years, we so often shelved. We’d been so busy: She, clinging to simply surviving her two 2019 traumatic brain injuries (TBIs) and the cascade of health downturns they caused; me to finding medical providers who actually knew how to help her.
(“Why don’t you just go to the doctor?” asked the perennially grumpy checker at our local Natural Grocers, somewhere in year two of watching us haunt that store’s naturopath, who eventually gave up on us, still with her same cheerful smile. We were probably a dozen doctors in, just by then.)
As we sat there, watching flock after flock winging it in the early night, my mind kept returning to some of our darkest times, on our bathroom floor. We spent no few hours on that floor. Now, she remembers little from that time. I remember it all - including the laughs. Daughter has a high pain tolerance (TBI teaches lessons like this). If she could make a joke through whatever latest symptom her body threw at her, she would. That’s how I knew when she was Really Not Okay.
It’s a weird time in the world. Climate change is taking off at frightening speed; horrific genocides are being live-streamed and mainstreamed; and marginalized communities are bracing for the US’ dumbest experiment yet - voted in while most folks were foolishly sleeping on their right to vote, it seems.
(“Sometimes you have to take a break from saving people from the swamp, to keep yourself from getting sucked in, too,” said one of daughter’s earlier knowledgeable doctors, in front of her (!).)
But for our little family, the latest in strings of diagnoses, therapies and lifestyle changes, researched and teased out detective-style (Long story: I’m writing a book about it.), have ushered in the brightest era we’ve had in over five years. It’s jolting.
I’ve got big ideas and plans for photography and writing, both. Implementation is on crip- and end-stage capitalism time, but it’s happening. I’m hopeful nicotine patches will bring an end to crip time for two in our little family. I think I’m glad my late smoker-apologist parents aren’t here to gloat about this one. Something in my body’s changing, but it’s too early to tell exactly how much. I’ll keep you posted.
I’m just glad life now grants space to dream about writing, photography and an expanded tribe for me; and for all my kids dream for their lives, for them. LongCovid in two of us and TBI in the third hasn’t left us lots of room to dream. Plenty of time for it, but not much room.
(So. Much. Judgement. From all in our former “communities,” who’ve never even remotely been here.)
Oh, there are still hard times. There are still plenty of tears, particularly for daughter. Turns out short term memory is kinda important. Short term memory, good health ... so important! This girl, now almost 18, continues to pay a way heftier price for participating in two kids’ camps at age 12 than a just world would allow. Trusted leaders behaved in Most Untrustworthy ways, to great damage to her.
On a more material note, I recently had cause to calculate just how much I have spent, out of pocket, on my daughter’s TBI recovery thus far. In five+ years, I have spent over $58K on that alone - not counting the lost car, lost wages or anything else. For perspective, in a year, my fixed-income family makes just over $55K.
Whatever the logical takeaway from those numbers is, my takeaway is: “Damn. I kept us afloat through that.” I’m pretty darned proud of myself.
As I write, the US Department of Education as we know it is on the chopping block. Daughter just transitioned (miraculously!!) from homeschool to public high school, under the necessary protection of a vital 504 plan.
I’ve been bracing for what’s next in daughter’s TBI-compromised health for five years now. Do I really have to keep bracing for what’s next, US government? Really?
Maybe our last five years was good preparation for the road ahead.