Clunky title. Kind of like the dull, monstrous bang of a car thundering into another car, stopping dead. Today is the 23rd anniversary of that sound times three. Twenty-third. That’s an unreal number. It seems absurd that I’d still be suffering from a brain injury, that the number of my years as an adult with brain injury exceeds the number without.
That year, Y2K aka 2000, I had plans. Last year, I had plans. Different plans but nice ones. Both years, and almost every year in between, my plans went awol. There’s a passage in James that resonated after I received what felt to me the melodramatic diagnosis of brain injury:
Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.
James 4:13-14, NIV (New International Version)
Or perhaps The Message translation speaks the opprobrium and futility better after life has sublimated you into a mist.
And now I have a word for you who brashly announce, “Today—at the latest, tomorrow—we’re off to such and such a city for the year. We’re going to start a business and make a lot of money.” You don’t know the first thing about tomorrow. You’re nothing but a wisp of fog, catching a brief bit of sun before disappearing.
I brashly announced in 1991 I was writing Lifeliner: The Judy Taylor Story. A middle-aged male driver, the kind who drives a boat of a car with his pinky, drove right into the back of the car I was in 3 months later. In 1997/98, I put down my foot. I will write Lifeliner and will make a lot of sales in 2000. Bwahahaha! Actually, it did become my best selling book…in 2007 and 2008. No other novel or non-fiction I’ve written has exceeded it. Well, except for Aban’s Accension on Wattpad — because it was free. And it did resonate with hundreds of thousands of young women, whose comments buoyed me up.
My plans to heal my brain injury by zealously following rehab, doctor, and lawyer instructions, failed year after year. My plan to heal my brain injury through brain biofeedback — to be like Judy, the first one to carve a path in the field and prove the case — for her, it was to live without eating on artificial feeding; for me, it was to prove neurostimulation works to heal neurons — my plan succeeded yet failed. It only began the healing.
My plans to recover my reading comprehension failed year in, year out until it succeeded 2018, when I drained my accounts and my energy, and borrowed to pursue a long shot. Until I got my pneumonia then shingles vaccines.
Didn’t see that regression coming! I’ve had vaccines since younger than 3 months old. Worst thing I ever experienced was a painful arm (you don’t know a painful vaccine until you’ve had the smallpox one!). But I didn’t know brain injury and, in particular, treating it changed the game. If I hadn’t been treated effectively and regained so much function, I probably wouldn’t have noticed any change. But I think I had enough damage remaining that my microglia responded to the vaccines by returning to injury baseline. Took me months to get back on track and longer to return to my Lindamood-Bell-restored reading. I’m still not back, for I still struggle with reading philosophy and neuroscience unlike at the end of the 2018 training. It’s all so disheartening, a constant pulling yourself back up, one step at a time.
My plans to make 2012 a medical year then return to working on my functionality stretched into year after year of prioritizing medical while I struggled but failed to maintain the writing routine I’d built up with my therapist in 2010-2013. I learned so much about brain injury, on various treatments, the trauma and grief, but OMG, by 2019, I was sick of it! How many years must I devote to medical appointments because brain injury care is fractured into separate non-communicating clinics and doctors offices‽ Every clinic makes a huge difference but only in one part of my body. My whole brain being damaged meant I needed integrated care. Well, you might as well dream of soaring into the clouds through thought power alone as finding good, effective integrated brain injury care. My suggestions to expand their boundaries landed with a respectful clunk.
I managed to write a manuscript every November until 2022 during NaNoWriMo (National Novel Writing Month), but I failed to edit or finish editing never mind self-publish them. With one exception: my revised memoir in 2017. For that, I received the kind of community care a person with brain injury needs to get something done. In-home support to get me to do the research, keep plowing through the fatigue, have someone calm my overwhelmed brain and get functional again. But the fucking government, like the medical system of non-treatment, essentially believes anyone with brain injury will never be productive so a waste of money helping them beyond literal survival of the extremely impoverished (you know, cooking and cleaning). That help was only for that book. Concussion Is Brain Injury: Treating the Neurons and Me done, help vanished.
Anyway, the pandemic stopped me spending days on medical. Yes! Virtual appointments only suck up their time, not the entire day like in-person ones. In-person requires fatiguing travel, waiting and navigating unpredictable people, preparing to be in public (no, I don’t stay in my PJs for virtual — get dressed, feel better). 2020 saw me finally work on the brain injury website I’d been wanting to do since 2012. Then I worked on finishing those NaNoWriMo manuscripts. I practiced my reading. I suffered a blast injury. Oh, hell no, that was not in my game plan!
Another uphill climb to where I was. I was fortunate that I had home devices and access to help over the phone on how to use the home photobiomodulation therapy device to heal my poor, insulted neurons again. But I had to figure out which sessions, how often, were best for the audiovisual entrainment and cranioelectrical devices, and how to integrate using the devices. Can I say how tired I am of having to figure these things out on my own‽
Last year I was going to replace my dying furnace and focus on plants, indoors and out. Bring green into my life. Bwahahahahahahahahaha!!!!!
God’s plan to bring in another kind of green was a fucking nightmare. God’s plan ended up with better heating, a more comfortable home, and grant money that may finally get me that central air conditioning I’ve coveted for decades. God’s plan popped in the idea for writing Brain In Injury, Trauma, and Grief: How to Heal When You Are Alone, to both help me heal the grief and write a book, then God’s green plan derailed its launch. I mean, really!
Anyway, I could never in a million years have foreseen what happened last year. So this year, I have no plans. Not even itty bitty ones. I’d like to finish reading Written. I’m doing the exercises, transitioning to a new writing routine. Maybe I’ll clean up a couple of pseudonymous novels. Maybe I’ll get that air conditioning. Maybe not. I still have a portable AC unit, and now that I have solar panels, I can run it when I need to as it won’t cost me a penny. Maybe God will allow me to buy those plants. After all, the couple I bought in 2021 are still miraculously alive. But then maybe again something very unexpected will happen. My neurodoc vanished into an ongoing medical emergency. Maybe he’ll return. Maybe not. Maybe the 8 years of waiting for a case manager will bear fruit this year. Yeah, OK, let’s put that one in the closet. The unfettered virus is decimating health care, either by sickening and disabling the workers or burning them out. And our stupid governments are clinging to pre-pandemic ideology as if that will solve health care’s collapse. While everyone focuses on panicking hospitals, they don’t see that care in the community has disappeared into a black hole.
As I enter into my 24th year, I make no plans.
