In my first life, I parked one word next to the other and they stayed where I put them. I wrote in the voice any particular client required about things I mostly didn’t see or do. This was called freelance writing and meant morphing so Martha would sound like Martha, Elmo would sound like Elmo, Oprah would sound like Oprah and Elle would sound like Elle.
I spent decades telling folks how to prevent everything bad, protect everything important, and procure everything good. All they wanted or needed to know, have, wear, buy, try, lose, use, read, see, hear, taste, sip, skip, slip into or out of. I was called an “outside creative.” Pretty creative, very outside. Then I got in a car and never came back.
One moment, I was a single mom—making dinner and deadlines all over the world, perking up headlines while picking up kids—and the next I was strapped on a board, looking up at the ceiling in an icy, airless room. I was afraid of the metal taste, the tilting room, the techs pulling shards out of my skin, the nurse with the booming voice in the beeping, blinding light.
There are more connections in one human brain than there are stars in the Milky Way. One hundred billion neurons (100,000,000,000)—with 100 trillion interconnections (100,000,000,000,000)—make us who we are, or were. The good news was I kept breathing. The bad news was brain damage. I had acquired the same injury former representative Gabrielle Giffords suffered when she was shot in the head.
I was called an “outside creative.” Pretty creative, very outside. Then I got in a car and never came back…One moment, I was a single mom—making dinner and deadlines all over the world, perking up headlines while picking up kids—and the next I was strapped on a board, looking up at the ceiling in an icy, airless room. I was afraid of the metal taste, the tilting room, the techs pulling shards out of my skin, the nurse with the booming voice in the beeping, blinding light.
The part of the brain that allows you to speak is about the size of a penny, as in a penny for your thoughts. Other spots just as small let you recognize your child, your mom, your home, your hand. Or not. At the beginning, I could raise a lid or tip a brow. Then I could raise two brows. That was improvement. Then I could put my tongue in place and produce an odd—and I mean odd—word every now and then.
One moment I was someone. Then I was someone else. There’s a song that says you don’t know what you’ve lost til it’s gone. With brain damage, you don’t know what you’ve lost cuz you’re gone.
The most common form of amnesia after a traumatic brain injury is anterograde amnesia, which means you can’t make new memories, like what you just saw or what someone just told you to do. In retrograde amnesia, the brain is unable to retrieve memories you made before, like the day your child took her first steps or said her first words. I had both. I also had aphasia, which meant I couldn’t understand what people were saying and they couldn’t understand me.
Once in a while, my swollen brain coughed up pieces of my past. Then something emerged which I could discern, while less often, something emerged which I could say. Amnesia can take away anything and make it disappear. It had. Aphasia can take away words and make them disappear. It did.
I couldn’t say “thirsty” or “bottle” or “water” or “drink” or “this hurts me” or “please pull up the blanket, I’m cold.” I pointed to a chair because I couldn’t say “chair.” I did the same with a shoe. I could have made a list of things to fix if I had words. You need words to make a list. There were no links to click, no legends to guide me, no calendar or compass I could comprehend.
My brain would get stuck wherever it was at that moment and my tongue would feel stuck to the roof of my mouth. Fyi, aphasia may well be the most common condition most people have never heard of. It’s more prevalent than Parkinson’s disease, cerebral palsy, multiple sclerosis, muscular dystrophy, and Lou Gehrig’s Disease (ALS) combined.
One moment I was someone. Then I was someone else. There’s a song that says you don’t know what you’ve lost til it’s gone. With brain damage, you don’t know what you’ve lost cuz you’re gone.
Probes punctured my scalp to survey my mind. Temporal lobe, occipital lobe, you name it; there was a probe for the lobe. I was asked questions like: Can you smile for me? Can you stick out your tongue? Can you hold up your arms like you’re holding a pizza box? Can you add 2+2? How about 2+3? Do you know what year it is? Do you know your address?
I was assessed. I was assessed a lot. I didn’t know what “assess” meant. I would see something. It would erase. I would hear something. I would erase. I would think something. It would erase, too. Every hall seemed featureless. Every wall seemed featureless. Every face. Every place.
I could barely read the left side of something before it disappeared—so by the time I got to the right, the entire left had “left.” I couldn’t read or understand TV, movies, headlines, books. My brain was in a constant state of temporary, which means my scores remained both very high—and very low.
They tested my verbal output, quantity of spontaneous speech, rate of speech production, plus sentence structure, ability to repeat a sentence and to follow commands. They would tell me three words, like dog, cat, hat, then ask me to repeat them one minute later, then two minutes later, then three minutes later. Sometimes I could. Things didn’t fall into place. They fell out of place instead.
Fyi, if you had a relatively high IQ to begin with, you don’t lose it. You just can’t use it real well. I couldn’t navigate the smallest space or the smallest thing. Not words or places or names or directions or signs on bathroom doors. I had acquired “frontotemporal lobar degeneration,” “frequent phonetic breakdowns,” plus “articulatory groping and phonetic disintegration.” That meant I could not name things. It might be a rock, a rose, a dress. A chair, a house, a mouse, a mess.
It’s hard to divine your deficits when they're constantly shifting. I had “more or less aphasia” combined with “more or less amnesia” at any given time. The boundaries between “able” and “disabled” are fluid, not fixed. Sometimes you’re able, sometimes you’re not. Experts in the field of brain damage, have, of course, never suffered brain damage. While we who have suffered brain damage, and will deal with it forever, will never be experts in anything.
When your brain breaks, so does your present and future and past. It’s like hearing a radio stuck on static most of the time, then finding something that comes through like it should. No, it's like being a radio stuck on static, then being someone who comes in clear. Your legs don’t know what to do. Neither do your hands or your feet. When I’m in an “improved” moment, I am lost at the end of a sentence. When I’m in a “not- improved” moment, I’m lost at the start.
I relearned to walk in a long, narrow, blue tube. A physical therapist walked directly behind me holding a leash around my waist. I was assigned three sessions with a neuropsychologist in case I had suffered trauma along with my traumatic brain injury. I thought that was why it was called traumatic brain injury.
Imagine two groups of people on any subject. One is the group of experts who know it backward and forward. The other is the group that “doesn’t know it at all.” They’re the same people, only they’re brain-injured now. One guy was hit by a bus. One was hit by a bullet. One was taken down in Fallujah. One was “taken down” while taking down his Christmas lights.
In our first lives, we were a fiddler, a farmhand, an FBI agent, a baker, a builder, a short-order cook, a college dean, and a skinny guy from Botswana with a great smile. We whipped up souffles and symphonies, grew stem cells, kale, or quarterbacks. A strange mix of genius, forensics, falafels, and cognitive disconnects which made us seem both very tuned-in and very tuned-out. You can't imagine the effort we made to put one foot in front of the other, to put one word in front of the other, to put one thought in front of the other, and not to look as dumb as we felt.
The strangest thing about the accident that ended my life was that I survived it. Which brings us to marriage. They say the first year of marriage is the most difficult. You’re learning how to live with a new person, as in what works and what doesn’t. Surviving a brain injury is like that, except the person you live with is you. I relearned how to see, how to hear, how to walk, how to talk, how to read, how to write, how to operate a fork.
Over the last few millennia, we’ve outsourced our memories. Think smoke signals, cave paintings, the alphabet, the printing press, photography, the phonograph, TikTok, Insta, What’s App. Or you can do it the old-fashioned way, inside your head, in which case pathways light up. My brain put on a helluva light show when I was shown a picture of Paris while lodged in an MRI machine.
The strangest thing about the accident that ended my life was that I survived it. Which brings us to marriage. They say the first year of marriage is the most difficult. You’re learning how to live with a new person, as in what works and what doesn’t. Surviving a brain injury is like that, except the person you live with is you.
Although supersonic jets are perfect for high-speed travel, you wouldn't want one to land in your head. But this is the impact most things make on my bruised brain. It took everything I had to meet my daughter for coffee, comprehend a huge menu of coffees, choose a drink, and carry it. Or everything I still had. I was auditioning for the part of “normal mom,” sort of like I was before. I wanted to walk like I did. I wanted to talk like I did. I wanted to think like I did. I was embarrassed by me.
Search how to save the world on Google and you get 7,350,000,000 ways to save the planet—and your mind—in trillions of easy yet elegant ways. Also how to make 7,042 meals in fifteen minutes or less. Plus how to be a person, how to be a good person, how to be open but not too open, how to have boundaries but not too many, how to think about the future, or, for that matter, how to think.
I am a token. I am a token composed of a string of digits and characters. That token travels with my email address. But I don’t. I don’t travel because I’m disabled. Disability is defined as a describable, measurable condition in which an expected specific human ability is curtailed or absent. In the case of brain damage, it could be defined as a condition in which an expected human is curtailed or absent.
I lost a few billion neurons and sometimes it shows on my face. It happens when I have to say something I can’t say or do something I can’t do. I still don’t know how much of me I will find or lose at any given time. Stacks of books I had loved might as well still be stacks of books I had never read. I don’t know if I’ve read them or not. Ditto if I’ve seen films or not, even films I loved. Ditto again, places I’ve loved. Sometimes my vision cuts out and that part of the screen is missing or that part of the curb or that part of a page or that part of my day or my life.
It seems that many would say, it’s not how long you live, but how long you keep your marbles, which bumps cognition ahead of longevity. This upends the trope: “He who wins has the most toys” to: “He who wins has the most marbles.” And implies that "cognitive" ability matters more than longevity to many or most of us. Which brings us to personhood. A cancer survivor might say, "You must believe you are a person worth keeping alive.” A brain damage survivor might say, “You must believe you are a person.”
About five years post-accident, I began painting birds. They have carved three-dimensional bodies and metal feet. Each one takes weeks to complete: a few minutes at a time over many weeks. They have countless layers or “feathers of color and light.” I apply color with a very light touch, then wipe it off or rinse it off, brush on again, wipe off again. Sometimes I even wash or sand paint down so as to be translucent and delicate, like specks of gold in sand. In my first life, I hadn’t seen the wing of a bird, a little bird, quivering. Or I’d seen it but hadn’t noticed. Now I do.
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Deep thanks.