Two Years Ago, Today
On October 19, 2015, I was in a car accident.
I know, I know: you’ve heard this story before. Don’t worry, I’m not going to make you relive it like a PTSD episode, although it is very exciting and I highly recommend you take a moment to read all about it. Okay, fine, it isn’t and I don’t, but it is a real life account of what it’s like to lose your mind.
This is going to be a little bit more about what it’s like to start getting it back.
Before we start, a warning for the concussed amongst us: this thing is way longer than anything I can read in one sitting. Too long, if you ask me. If I could really edit, I’d already be cured, and wouldn’t have to write it. If you are concussed or post-concussive and, for some reason, really desperate to know what I have written here, maybe get someone to read it to you, or summarize it for you, or stop at every gif for a walk or a cup of tea or something.
It would never — in my wildest dreams or darkest nightmares — have occurred to me that I’d be here, two years later, in a position to write this thing. I thought I would be better by now.
I’m not. I’m still suffering from post-concussive syndrome.
Unlike this time last year, I am no longer “suspended in pitch-black primordial silence, with only my reptile brain urging me toward the most basic form of survival.” I have — thankfully, if not gracefully — transitioned out of the constant fear and fight-or-flight with a much better grip on reality, and without having to look to those around me to constantly steady me.
I am alive and awake and aware and conscious. Of course, becoming “conscious” has been its own challenge: at least when I had no idea who I was, where I was, or what was going on, I wasn’t concerned. I wasn’t upset. I wasn’t frustrated.
Today, I am. Frustrated, upset. Not angry, but disappointed. Not every day. But some days.
While I am so much closer to the outlying version of normal that I was before the accident, the more that I get back, the more that I realize I’ve lost. The more that I remember, the more I realize I have forgotten. The more I improve, the more I realize how injured I was. The more that I push myself, the more that I realize I am weak. The more that I rest, the more that I realize I am exhausted.
And it’s that — not the doctors’ visits and copays, the pain, the nausea, the headaches, the weakness, the confusion, the complete lack of attention span or clarity, the inability to read, the memory loss, the lack of a constant grip on what year it is, how old I am, or what season it is, the fact that I often cannot recall whether or not I responded to an email or a text and by the time I remember that I might not have remembered I am too tired to go back and check and too tired to compose a response, the sleeplessness, or the Goop-style constant fatigue — that has made the last year so difficult.
The loss of the first year I handled — I wasn’t really there anyway. When I realized what was happening, I made my peace, quickly and fully. Happily, even. Pollyanna, clear eyes, full heart, to infinity and beyond, never give up, never surrender!
The loss of a second year leaves me less cheerleader, more player sitting out the game. Less Planeteer and more Inconvenient Truth. Less rainbows and more rain. Less series regular, more redshirt. Less angel. More special angel.
The thought of losing of a single day past today is… almost unbearable. And yet, tomorrow morning, I am going to have to get up and deal with it.
Because as difficult as it is to know that I will wake up and have to systematically and mindfully give up on things I could do, things I want to do, things I feel I need to be doing, turn my back on what little precious productivity I have in order to save some of it for tomorrow or the next day or the next week, ignore what is going on in the world because I am still not well enough to help, and place myself and my health above all else, I will have to do it. I will have to figure out how to define myself by something other than my output, my work, my contributions to those around me.
Because even though my mood, my personality, my ability to sit up and speak and listen and remember and be “myself,” continues to be dependent on whether I sleep until 5:45am or only make it until 5:30, walk for 36 and not 40 minutes, read and write four and not three emails, edit two and not only one picture, or spend eleven seconds on Twitter, this is no time for doubt or grief or even one minute of indulgence in unfettered wallowing, in games and fantasies about what could have been, in sorrow or self-pity.
Yes, I continue to miss the major milestone events that my friends celebrate or survive. In many cases, I am a full significant other, job, baby, festival circuit, birth, death, or nervous breakdown behind and am a little too embarrassed by that fact to reach out to congratulate them, send condolences, or just say “hello.” They know that I love them. I think. I hope so, because I have largely been the silent partner, now for two years. And, okay, it’s very possible that they find me easier to handle in very small doses, but I feel like I constantly leave people hanging, like I am constantly disappointing people.
And, yes, that is because I am constantly disappointing myself. Because I truly believed that I should be better by now.
But, I want to make sure I put this in perspective: I am so, so much better, and on my way back.
In December last year, I graduated from vestibular physical therapy, which means I can pretty much move in almost any way in almost any direction without getting nauseous, almost all of the time. HOORAY!
I am still in physical therapy (although currently discharged, to return as needed, i.e. soon), but “only” for whiplash, which is a real pain in my neck. Okay, that’s not a good joke. I’m sorry. When we fix the whiplash, we are really fixing the neck and back pain and semi-constant low-to-mid-grade headaches — not migraines, but enough to make life difficult. And fixing is good, because, as the brain associates one concussion symptom with the others, when any one of these fun symptoms pops up, it can sometimes bring with it the fatigue, fogginess, confusion, and daze. It’s like going to brunch, having a Bloody Mary and then having everyone who hated you in middle school show up and tell you about their new jobs and cars and babies and summer plans in the South of France and how difficult it is to find a good bilingual chauffeur. You just sit there, quietly, not totally following, but certain you’re the loser in the room, attempting to stay vigilant because any sign that you are miserable would surely be an indication that they have won. Never let them see you cry.
I started to drive again — slowly and only short distances. In August, after about 18 months of appointments, I drove myself to physical therapy, all by myself, for the first time. I spent the next day in bed.
Yesterday, I was officially discharged from speech therapy (also to return as needed). This is mostly because, thanks to two great speech therapists, I already know everything I have to do to make my normal, minimal existence possible, easier even. I already have all the tools, and — in many cases — it is simply up to me to use them. I already know, for example, that I have to start the process of going to sleep by 7:30pm, at the very latest. I already know that I have to do my work when I get up in the morning, and take breaks, at least once an hour, if I am going to do any amount of it. I already know that I have to schedule very few actual activities for myself in a one-day period, and all depending on their difficulty. I already know that I cannot do more than one thing at a time, cannot talk, or listen for too long, or think too hard, or do too much of any one, two, or three things, at any point. I already know that, if I am going to do something cognitively challenging, I can only schedule an hour or two of it at most before I have to abandon it and let my brain rest, fully, for the rest of the day.
Every day and every hour involves this scheduling and juggling and reconfiguring, all of which, of course, takes up its own amount of cognitive energy. In some cases, by the time I figure out how to manage my day effectively, I am too tired to accomplish any one of the many things I have so carefully laid out in a friendly, color-coded grid. At which point I have to stop myself, using whatever force I have available to me, and remind myself, “You won’t be able to do as much as you used to.”
At least, that’s what it says on one of the friendly sheets I have hanging on the board next to the couch to which I still so often retreat.
Sheets hanging there remind me that, “the brain uses more energy than any other organ in the body,” and “healing takes a tremendous amount of energy,” and “your reserves are almost nonexistent,” and “exhaustion will amplify all of your symptoms.” They try to remind me to “pace” myself, “check in” with myself, “listen” to myself, to “prioritize,” to do “one thing at a time,” to “rest,” “Rest,” “REST.”
As I said before, when I was writing about this a year ago, I had, although only just, come to terms with the fact that this was going to be a long-term healing process, after a year spent pushing myself to be better “by Monday.” I convinced myself to “REST,” fully, to do exactly what my physical and speech therapists told me to do, to give myself the time and space and enthusiasm and generosity that I needed to recover completely. I threw myself in with vim and vigor, 180%, and as much focus and effort as I was able to give. And, because I am incurably stupid, I told myself, “By the Fall of 2017, you’ll be better, and off on your next adventure.”
Which is why I started applying to grad schools and jobs in May and June and July. I assumed that I would be starting over in September — that was my goal, my self-imposed deadline. I was confident that I would meet it.
And then September was almost here. And then it came. And then it went.
I didn’t meet my deadlines. I didn’t make my goal. And not because I didn’t try. Not because I didn’t give my all, or make enough of an effort. But because, when it came down to the wire, I had to sit down and admit to myself that, due to circumstances outside of my control, I wasn’t ready.
I really hate that.
I hate limiting myself. I hate waiting. I hate the fact that I’m two years older with nothing to show for it except for significantly longer hair I can’t wait to chop off and donate.
I hate checking in hourly. I hate figuring out how I feel. I hate not being able to get by on denial. I hate taking care of myself. I hate having an inner monologue devoted to what I can and cannot do. Do I need to rest? Do I need to take a walk? Do I need to stop working on this and wait until tomorrow, or maybe the next time I have a full nine hours of sleep? Do I need to cancel the next event? Do I need to go to bed? Do I need to cancel everything I have already put off until tomorrow?
I hate having to say, “No, I can’t do that.”
Because, yes, even though I am so much better, and getting better all the time, and even starting to work on my very first project since the accident, even though I wasn’t shot or shot at or bleeding or lost under rubble or pulled from a fire or starving or drowning, or being chased by velociraptors or a demonic Prom Queen or Facebook invites to an open mic or a xenomorph whose DNA I carry in me, or anywhere actually close to dying at all, I still have to “pace” myself. I still have to “check in.” I still have to go slowly, one thing at a time, asking for more help than I feel is fair, and stopping and resting what feels like constantly.
I hate it. But, when I get out of bed tomorrow, I’m going to have to do it anyway. And when I get out of bed the next day, and the next day, and the next day, until I don’t have to say five words to myself like the most depressing mantra anyone ever made up as a punishment.
“No. I can’t do that.”
I should have made peace with it by now. If not in practice, then at least in theory.
I have not.
I think the major reason I am still having such a hard time, knowing I will have to say this, over and over again, every hour, every day, indefinitely, knowing that there is no concrete end in sight, that — for an unknowable amount of time — I may not be contributing in the way I would like to, is the fact that I don’t know if I can answer the following question: what am I, if not my work?
That question has led me to consider other questions, some of which I’m going to ask here, most of which I can’t answer, and to some of which I don’t know if there even is an answer. Most of which, of course, I have already forgotten.
Because, yes, I have forgotten, and will possibly still forget, so much. However, I do remember, I can remember, and while I may not remember the things or events or moments or details that I want to remember (like what kind of flowers my mother loves, the name of that director of that movie that I liked, the fact that I can’t eat cheese, or what Idris Elba smelled like), I do have the capacity to create new short-term memories, and I can access and identify long-term memories.
But, what about when I couldn’t?
This is about to get really navel-gaze-y, so, if you are as put off by activated cashews and finding yourself and the search for true meaning as I am, please feel free to scroll down to Jude Law. Back to the deep thoughts.
What can I point to to define myself, if not my accomplishments? And if I cannot remember my accomplishments? My intentions, my motivations? If I can’t remember them? Am “I” not defined by my memories? Am “I” not the sum of my actions, and — unable to work, move, or contribute — therefore, nothing? If the brain is left blank, as mine was for so long, do “I” no longer exist? For the months that I was nothing more than a series of evolutionarily ingrained, involuntary fight-or-flight responses, was I “me?”
Am “I” only what I am now, regardless of what I was yesterday? Is the definition of “me” changing, evolving, or is it stationary, set, known?
Who was it that was driving the vehicle that is my body while I was asleep, unconscious, unavailable for comment? Who went to those physical therapy appointments? Who was at my parents’ Holiday Party? Who finished editing my short and submitted it to festivals? Who sat on the filmmaker panels? Who read my texts? Who wrote this thing? Was it me crying every night at the dinner table because I was exhausted? Waking up terrified, hyperventilating in the middle of the night? Yelling and freaking out and browning out and lashing out and rushing to my mother’s arms, scared and confused after a PTSD-style meltdown?
I don’t know. I can’t remember.
If I lose my memories, do I lose my “self?” If my personality changes, am I still “me?” If I am incapacitated and I cannot do what I love, cannot recognize or interact with my family or friends, cannot speak or see or hear or walk or play the harmonica anymore, am I still “me?”
Are we — the athletes, and soldiers, and parents, and spouses, and children, and friends — still “us” after we suffer a concussion, a TBI, CTE, dementia, a stroke, Alzheimer’s?
If not, who are we?
Are we defined by our injuries, our disabilities, our mental health, our losses, the things that make us less or different than we were before? Will our lives forever be segmented into eras; B.I. (Before Injury), D.O. (Down and Out), and A.R. (After Recovery)? Will I be two, or three different people, based on my changed neurology? Would I be defined by other neurological phenomena? Am I my migraines? Am I the sadness I feel when I am tired? The happiness I feel when I eat half a bar of dark chocolate? The swirling pit of anxiety that opens like a trap door in my stomach when someone mentions Harvey Weinstein? Am I the adrenaline that rushes through me when I hear a noise I can’t identify? The excitement I feel when I think about working again? Am I the disappointment I feel when I have to go to bed at 5:30pm? Am I making any sense? Am I worried for no reason? Am I just screaming into the void? Am I even here? Is this even now? Are we in the Matrix? Because, honestly, if Keanu Reeves would just come and sit next to me, I think everything would be okay.
Where is the crossover between the physical body, the brain, the neurology and psychology of self? Where do the philosophical and metaphysical definitions fit? And, what about the Wachowskis’ definition? Do we have to count JUPITER ASCENDING in our research or can we pretend it didn’t happen except for the Terry Gilliam cameo?
If I did not think, was “I”, therefore, not?
What is the difference between my brain, my mind, and my self?
Where is my soul?
Can it be damaged in a car accident?
If you think this sounds like an existential crisis, you are probably not wrong.
All of these questions are crazy, and, even though I have been assured that I am not Tyler Durden, I know that I lost my mind. I can tell that I am getting it back, though only slowly, and often not in the right order. And, I’ll be honest, this whole process has been a little too J.R.R. Tolkien for me. Underground, in the dark, not sure of the way back to the surface. A couple of mountains, at least one dragon, pursued and hunted by sleeplessness and pain and monsters that I cannot see and am not even sure actually exist. I have found shelter and help and friends and miracles and magic along the way, but I can’t ask anyone to stick with me for the rest of the road, because it is only mine, and no one can carry the burden that I have been tasked with.
I am on my way to Mordor, but, of course…
I do not actually know the way, and I do not actually know when I will get there.
I do not actually remember the plot to The Lord of the Rings.
Don’t tell me. It’ll be a surprise.
My point is: I have been on a grand adventure, one I didn’t know I was going to go on, and one for which I was not prepared. Looking back on it now, I have many questions about what exactly happened to me, what happens and has happened to others, and, most importantly, how I can help other people avoid this type of adventure — especially the Tom Bombadil parts.
I have a stack of books next to my bed, and left lying around the house, that might be able to help me draw a map of where I have been, that might help me understand. Books by neurologists and experts on the human mind and luminaries in the fields of philosophy or psychology like Carl Jung, Oliver Sachs, Norman Doidge, Julian Jaynes, Plato and Carrie Fisher.
I can’t read them yet. I probably won’t be able to understand them when I can read them. I don’t really know what good it will do me, or anyone else, if I do understand. But maybe it’s just the next part of the journey, there and back again. Yeah, maybe this has all been more like The Hobbit. There are more meals in The Hobbit. Plus, the animated version has waaaay better songs.
Wait, do they go to Mordor in The Hobbit?
Wait, hold up, in this analogy I want to go to Mordor?
That can’t be right.
The point is, wherever it is I’m going, I’m not there yet. And, yes, I would rather have been walking the actual Te Araroa than running this metaphorical marathon (which has often been as boring as The Silmarillion) across Middle Earth. But, here I am, still running along. I suppose it would have been too much to ask to be a beautiful, willowy, shimmery, graceful elf?
I so seriously regret not going with a Harry Potter analogy.
The most important thing is: even though some days this whole thing, and the entire world around me, feels like a lost cause, unlike Frodo — or Harry or Katniss or Buffy or Beyoncé — the fate of the world does not sit on my weak, whiplashed shoulders.
I have as much time as I need. I have as much support as I could possibly ask for. Wherever I am going, I have the time and the capacity and the determination to find some kind of peace, whether it is along the way or at the end.
I still don’t know what the end is going to look like. Maybe I’m there and I just don’t know it yet. The hopeful, sunshine part of me would like to think there was a point to all of this. Today, I can’t even imagine what that could be. Maybe tomorrow I will. Until then, I have to go rest.
Wake me if Keanu shows up.