Have you ever seen Twin Peaks? If you haven’t, you should stop reading this right now, and go binge watch the whole thing. It’s on Hulu right now. Once you’ve returned, fully in love with Kyle McLaughlin, resume reading. You’ll also probably be a little bit like, what the fuck? David Lynch does that to people. If you come back after only two or three episodes, you’ll likely come back pissed, and saying, what did you just make me watch? That’s a fair question. David Lynch, man. David Lynch. It’s an acquired taste. But, it’s delicious.
Anyway, my point is coming. I promise.
There was this girl, Lotje, in England. She had a massive stroke one day. This is terribly sad and tragic, as she was quite young, relatively close to my age. This is also something that makes people uncomfortable, as it suddenly occurs to them that things that can happen to anyone, at anytime. She was a healthy, strong adult, with no risk factors for such a thing: healthy weight, diet, age, etc. Guess what folks: brain injury, trauma and malformations can happen to anyone. Including you.
She could’ve died, but in the midst of her stroke, she stumbled from her apartment, where she lived alone, and made it to the street, where she managed to find her way into a hotel lobby. Someone called for help and she was admitted as a Jane Doe. Thankfully, her family figured out where she was, and surgeons were able to “repair,” the life-threatening damage.
Repair, in terms of brain surgery the subject of a fascinating documentary that she creates about herself, with the help of her favorite director, David Lynch (see, I told you a point was coming, involving him), as a producer. I wanted to see this documentary, as soon as I heard about it.
I started watching it one day, home alone, when I heard that it was out on Netflix. That was a mistake. I get anxiety attacks when I see images of brain surgery, or even suggestions of brain surgery, so I had to stop, right away. I waited for Bryon, and he sat close, held my hand, and we watched together. And, I squeezed my eyes tightly shut during the surgery images.
While Lotje’s injuries and surgery are quite obviously more severe than anything I’ve gone through, or (hopefully) will ever go through, it’s shocking how similar every brain patient is. Her emotions, her sense of loss, her feelings, and even her symptoms parallel mine in almost every way.
For example, she completely lost much of her ability to write. At almost a year out from my first surgery, I’m at what most suggest is my “permanent” point for recovery. That means my recovery won’t improve much from here, cognitively. I have lost the ability to spell, and organize syntactically. This is not immediately (usually) apparent, in my writing because I’ve not lost the ability to recognize it, and return to it, in editing. Without autocorrect, and a lot of patience with myself, I’d sound like a second grader, learning phonics. She’s recovered some of her ability, and through repetition and continuing to force myself to write, I hope to recover more of mine. (But, for example, part of that last sentence, before re-writing it, through backspace, was: “to force myself to rite, I hope to rekover).
She also has trouble finding words, in speech. I’m continuously plagued by this, and have often avoided conversations altogether, because I’m afraid of sounding stupid. I have become more isolated because of it; a personality shift that makes me uncomfortable. There is a scene in the film where she knows that the word for a female relative is “niece,” yet she keeps mixing it up in her head with “nephew.” She she transposes, and even replaces the sounds, repeatedly, visibly frustrated, and calls a girl, in a photo “mephew,” even knowing there’s no “m.”
The number of times this has happened to me has almost permanently closed my mouth. For example, yesterday I was trying to tell my husband an anecdote about how I believe police need more training, to help recognize children, and adults, with autism. I couldn’t remember the word for police, and the sound “m,” was blocking my way to the word for “police.” I was stuck. By the way, what’s with the sound, “m”? So, this is how the conversation went:
Me: I’m stuck, and I can’t get the word. I’m stuck on mmmmm; but it doesn’t start with that.
Him: (so patient). Calm your brain. Just try describing it.
Me: (visibly frustrated) Okay, but it doesn’t start with “m.” It’s good guys. They help people. They have guns.
Me: No! Good guys! (At this point I make finger guns, and fire from the waist). And it doesn’t start with M!
Me: What? No.
Him: Oh! Police!
This would be funny, and it was, if it weren’t real. I mean, that’s actually a little hilarious. However, can you imagine if that happened to you, several times a day, a week, a month? This isn’t “senior” moments; I’m 37. This isn’t forgetfulness. This is my life. This is nonstop. This is why I don’t talk at the store, because I’m afraid I won’t remember my name (it’s happened). This is why I don’t talk at social gatherings, because this is humiliating. The woman who can’t remember the name of the presidential candidates at a dinner party, yeah, she’s a moron. This is why I don’t talk when I go to events at my son’s school. And, this, this, is why people think I’m an anti-social bitch, or a snob. This is why I’m “weird.”
She also describes visual disturbances. Yeah. It sucks. Everything out of one side of my vision, it’s like it’s been smeared with Vaseline. When I have bad flares, it’s like someone turned up the volume on everything. Everything is thousands of times brighter, and louder, and just more. It hurts to even be near brightness because it pulses. Things swirl and move, even though they are still. Smells become sounds, and sounds and colors blur. The brain can’t separate anything anymore. Lynch does an excellent job, in his editing, of capturing exactly what it looks like, so much so, that it made me cry to see it presented, to see it on film.
This is why watching Lotje, in her documentary, you can see pain. This is why when she sobs and says she just wants her life back, you can see every brain injured patient. I will likely never work, at least full-time, again. Would you trust an English professor, who gets up to the board and spells every other word wrong, then goes back and erases it? As an English professor, every part of my personality, or a large part of it was tied up in reading and writing, and so much of that got taken away from me with brain surgery; I want my life back too. I want me back.
I know that I’m lucky that so little was taken. I can read, but it takes me about 20-30 times longer to read a book now, than it did before. Some types of titles, books I’d easily read before, are still out of my reach. Lotje had to practice for weeks to read a simple magazine article. So, I try not to feel badly that it took me several weeks to read a trashy romance novel, and I had to go back and re-read several chapters, because I got confused. Or, had literally forgotten what I’d read the day before; my mind just didn’t hold any of it.
I’m trying, but if I think about what I can’t do now, it breaks me for the day, and I’m sad. I read easy things for practice, and I read constantly to stretch my reading muscles, all in the hopes that those out-of-reach titles, will be in reach again some day. Still, I fear that they are gone forever, and part of me is lost. Gone. The same goes for the rest of it.
Imagine waking up tomorrow, a large fraction of who you are, just missing. You can still do some of it, but not all of it. There’s no way to pretend that you’d be grateful, like so many people like to say. “Oh, aren’t you lucky to be alive!” Or, “Isn’t it great that you can still do those things!” Yes, it’s great that I can still do the things I love, but it certainly sucks that I can’t do them. Imagine your favorite thing: close your eyes and imagine it: now imagine you can only have half of it. Forever. Not a bit more. Are you grateful for half of it? Truly.
I honestly don’t think that a person who has not experienced profound loss, can answer that. Because otherwise you get trite, greeting card answers like those above. “Gee, it could be so much worse, right?” Certainly, I am grateful, but not a day goes by where I don’t try to be a little more, where I don’t try to regain more functionality. I’d be crazy not to. Lotje, a formerly independent woman, was now stuck, living back at her mother’s house, bereft of her fast-paced career that she loved. It’s painful to see that. I’m essentially at the mercy of a 10-15 mile radius of my house (which is only just now allowed – I used to not leave at all); and everything else I need a driver. It’s shocking how much independence you lose.
The thing that people don’t realize is how much of who they are is tied into the things they do every day. I was a teacher, a reader, a writer, a runner, a mother and a wife. Then, I was suddenly none of those things. None of them. Now, I can do a few of those things, but I can’t do them half as well as I used to, so who am I? Even the most important things on that list, mother and wife, I’m not half as good as I used to be. So, who am I? The sense of loss and grief is so profound, there is no way to describe it accurately.
I strongly recommend watching this documentary. Watch Lotje’s tears. Watch her sense of wandering, aimless. This is what a brain injury patient feels like. The jilting camera angles, the confusion, even the aimless sense of plot, this is our life. Every day. We have no idea what the fuck is happening to us, when or why. Oh, and tomorrow? It might get worse, or, it might get better.