When Annie Liontas was 35, they got into a bike accident while riding without a helmet. They hadn't broken any bones, and there wasn't sign of significant blood loss, but something wasn't right.
Liontas, who identifies as genderqueer, and uses they/them pronouns, remembers calling a friend and not really understanding what he was saying — or the words that were coming out of their own mouth. They ended up at the hospital, feeling disoriented. It was as though "the world [had] started to sort of pull apart a little bit, like it almost felt like taffy," they recall. A CAT scan confirmed that Liontas had sustained a concussion.
Though Liontas seemed to recover from the initial brain injury, two fluke incidents in the year that followed exacerbated their condition. First, a baby car seat fell onto their head at a big box store, and then a pot fell on them while they were watering plants.
An author and writing professor at George Washington University, Liontas continues to live with the repercussions of the three brain injuries. "If I shake the orange juice too hard, that could lead to a migraine. If I tap my head on a shelf — and I mean tap — that can lead to a migraine," they say.
In the new memoir, Sex With a Brain Injury, Liontas describes how their concussion led to dizziness, memory fog and anger — and impacted their marriage and sex life.
"Nothing is unclaimed by this kind of injury," Liontas says. "Not only do you lose TV or music or reading, but even just being in your body in this way that is about connection, suddenly was not available to me for a very long time."
The strain from the concussion nearly ended Liontas' marriage, but ultimately, Liontas says, they have managed to find a "new normal": "[My wife] was worried that who I'd been was gone forever — and who we had been was also gone," they say. "But we also are much more honest in certain ways with one another, and can see and support one another, I think, with more fortitude and resilience now. We laugh at more things together — because you kind of have to."
Interview highlights
On experiencing three brain injuries in the span of one year
I was in a little bit of disbelief [when the car seat fell on me], like, no, this can't be another concussion. It wasn't like hitting my head on asphalt. It's just a box. I'm in a store. There's bright lights. Like, I have to be safe there. This can't be happening. And, sure enough, it was far worse than the first injury, which ... I had kind of come out of that OK. But that second injury happened, and the symptoms were compounding. ...
The third injury was also a bit of a fluke. I was watering a plant and the pot fell. In hindsight, now, nothing is allowed above my head anywhere. I mean, I'll go to a hotel and take the painting off a wall if I have to. I think this is very common for people who are suffering from head injuries that you become, at the worst of it, there's a kind of paranoia that can overtake you. But, at the best, you're quite diligent and aware. And, I should say, that that extends beyond me too; now my wife has an alertness, and my best friend has an alertness.
On blaming themself for the injuries
If something happens three times, you get hit in the head three times with a coconut, you're sort of like, why am I sitting under this tree? For me, I think, I've started to think that there's this unsolvable knot that we all have. And by age 35, 37, whatever you've been running from, evading, indulging, it kind of catches up with you. For me, some of it is just bad luck, but ... a lot of it was that I thought that I could get through life completely independently of everyone, including my wife. I could just keep taking care of myself. But, of course, humans are not built that way, and if you're injured or sick, you can't. You are in a completely new, vulnerable position. But the problem with head injury, mild head injury particularly, is that it's so invisible, we don't see it. We have no idea people are walking around with this condition. A lot of the people closest to me were worried that this was something else, that it was anxiety, that it was depression.
The problem with head injury, mild head injury particularly, is that it's so invisible, we don't see it. We have no idea people are walking around with this condition.
On a test in the hospital in which they were asked to draw a clock
It was so disturbing. There are certain aspects of your own knowledge that you just take for granted, even when you're unraveling. And that was one of maybe two or three instances in my recovery when I saw myself reflected back to myself. ... The practitioner asked me to draw a clock and just put the numbers where they should go. And they were all bunched up like I was a first grader, and I didn't even get the 6 right. ... That was the start to a pretty long road of recalibration.
On having a crisis of self because they could no longer read or write
I was grappling with this crisis of the conceptualized self. This is what the philosophers call it when you literally go from knowing who you are one day to the rug kind of being pulled out from under you. And for me, it was like, as a writer, as an active person, as someone who was strong in body and mind and spirit to be truly vulnerable and incapacitated, to not be able to write, to not be able to feel confident in front of a classroom, ... that really taxed me and it's something that I've been crawling back from and grappling with.
On relying on their wife in recovery
We do have a kind of cultural framework around cancer, to be able to respond to in a way that we don't have quite yet for conditions like traumatic brain injury. And so it was this big paradigmatic shift for us in our own private relationship, where suddenly the roles were shifting, or we had to be present for one another in ways that we hadn't been before. It was a real test. ... Even if you're starting from a really strong place, something like brain injury can really rock the relationship. ...
I'm grateful that I'm with someone who understands that love demands a kind of elasticity so that people can grow and can change. And, of course, in this context, in the context of the brain injury, that had to happen too fast. And that was the reason for the strain and the difficulty. But also, I mean, we just decided we're going to keep trying – and that does make all the difference.
On getting through a long interview
Just to be transparent, because I would hate to misrepresent the condition, I have a lot of notes in front of me, and I memorized parts of these answers, and I sort of treated this like studying for the boards. Mostly because I know that it's really important to get the information out there. But I also think it's important to be transparent about the fact that this does take a lot of work, this extroversion and relaying of this kind of knowledge. And I just want people out there who are suffering to know that I can appreciate that that's what they're going through.
Sam Briger and Thea Chaloner produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Diane Webber adapted it for the web.
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