Interview with Rick Polito

Kristin: Please tell me about yourself and you can start wherever you like.

I'm a journalist, a writer, a father, and a husband. I'm also a traumatic brain injury survivor. I don’t introduce myself that way, but if you’ve known me for very long, I’ve probably told you the story. I'm 61 years old now, but I was 25 when my life changed in that one day.

I was a newspaper reporter covering the crime beat in Phoenix. I was also a cyclist and in early December of 1988 I took off on one of my normal rides. I spotted another cyclist out on my route and we started talking. A few miles later, we decided to sprint to the top of a hill. I remember the first 50 yards of that hill and then nothing. It was Friday afternoon and all of a sudden it was Monday. I woke up with what I always call the worst haircut of my life and half of my head shaved to make room for a huge brain surgery scar scrawling a question mark shape on the left side of my head. 

The first weeks were scary. My short-term memory was shot. The painkillers made everything even foggier. Still, I went home five days after I woke up and I got back on my bike and rode up that same hill a month after brain surgery. When I was ready, two months later, I went back to my job as a newspaper reporter. I jumped right back into the pressure of breaking news and demanding deadlines, with everybody watching me the whole time to see if I was still the same person. I knew I had to show them, and myself, that I could still perform.

I came back strong. I was a badass reporter again. I won awards. But TBI is the gift that keeps giving: the doubts, the anxiety, wondering what I’d lost, what parts of me came back different. All these years later, it’s not that I just think about it every day. I think of it 50 times every day. Some days I think I need to live in defiance of my injury, like I have to be that person who got back on my bike four weeks later and rode up the hill, who came back to work and kicked ass. And then other times the doubts come back, and I wonder how much of me really did make it back. It's complicated. I'm always open to talking about it with people– needing to talk about it, really–but I don't know that people outside the survivor community would understand.

Kristin: How long were you in a coma?

I was out for three nights. I hit the pavement around 4:00 or 4:30 PM on a Friday, and I woke up at noon on Monday. I have a pretty clear memory of waking up, though I’m sure I was foggy at the time. I remember asking if anyone had told my girlfriend. She’d been there for three days. After that, I faded in and out for a while, but my memory has been fairly clear since.

Kristin: What's the nature of your injury and symptoms that you experience?

There’s an artery that runs alongside your brain called the meningeal artery. I always say that if you know certain medical terms, it means something bad has happened to you or someone you know. If you can name the meningeal artery, it means something really bad has happened. That artery started filling my skull with blood the second I hit the ground. 

I don’t know what happened. Hardly anybody wore bike helmets back then, especially not 25-year-olds who felt invincible. The guy I was riding with at the time—someone I’d met just a few minutes before and have never spoken to since—flagged a driver down for help. I was airlifted to Barrow Neurological Institute in Phoenix.

At the hospital, the doctors found a skull fracture and a severed artery pumping blood into a giant clot that shoved my brain against the side of my skull. They call that an epidural hematoma. The surgeon drilled through the bone and cut a large circle around the fracture to open it up. They stitched the artery back together and then pieced my skull back in like a bloody jigsaw puzzle. Finally, they stapled the skin back into place and waited to see what would happen.

I don’t remember any of this, of course, but my girlfriend, my sister, and some friends were there.  My sister told me she asked the surgeon if I’d recover, if I’d be able to come back to my job, to my life. He told her, ‘We’ll need to see if he ever wakes up again.’ The brain is a black box in that way. The doctors can make their repairs, but it’s up to the brain to heal. There’s so much mystery in there.

I did wake up, of course, three days later, strapped to my bed, scared, in pain. I was in and out of consciousness for a while, and my short-term memory was frayed. They put me on heavy doses of painkillers and the swelling was so bad that my left eyeball was practically popping out of my head. I saw a neuropsychologist and a physical therapist, but it was a waiting game to see what my recovery would look like.

Kristin: What was that uncertainty like for you?

People who’ve survived a TBI talk a lot about the emotional part of brain injury, but most people will never know what that means. People like me who can return to their career and their lives and live independently still experience the immediate trauma of the injury and then the lingering sense of loss. Growing up, I was known as a smart kid—a National Merit Scholar, gifted and talented, all those terms they used back then. I was also an asthmatic kid who wasn’t good at sports, which meant a lot of my identity got built around being smart and clever. When I thought that had been taken away, it was devastating.

In those first weeks, I didn’t know how much intellectual capacity I’d lost. I was foggy, sleeping 20 hours a day, and gobbling pain pills. It wasn’t until I stopped taking so much pain medication, that things began to clear up. I found my way back. When I returned to the newspaper, I could think on my feet, write well, and do it quickly.  But I couldn’t always concentrate as well unless I was right up against a deadline. Focusing on tasks became harder. Those challenges have evolved over the years and now  there’s probably some aging mixed in there too.

The accident happened 36 years ago. Today is actually the anniversary of the day I woke up. That doesn’t mean it’s over for me, not at all. The uncertainty doesn’t just end. There’s anxiety. There’s depression. There’s the fear that settles in every time I lose my train of thought or forget where I put my keys. How can I know how much of that is from the brain injury and how much is just part of who I was before? There’s no clear line. Other things are easier to tie to the injury, like remembering names and faces. The brain stores that information in the left temporal lobe and I know that mine is scarred from my injury. Unless we’ve made a close connection, I have to meet somebody several times before I can recognize them. Other times, I can tell you details about a person without being able to recall their name. 

Ten years after the injury, I started experiencing focal seizures, though they weren’t diagnosed until 16 years after the accident. If you know about focal seizures, you know it’s not the dramatic, full-body kind where someone collapses and their family calls 911. Mine are small seizures with a physical sensation on the left side of my body. I call it “epilepsy lite,” but there’s also a sense of dread that sweeps over me. I experience something called jamais vu, which is the opposite of déjà vu. Most people haven’t heard of it, but jamais vu is a feeling of unease, like something that should be familiar suddenly isn’t. I might be sitting with my dog in my lap and suddenly feel as though I’d never seen him before. Consciously, I know him the way we all know our dogs, but there’s this emotional sense that he’s a stranger. Or I’ll look around my living room or some other place I know really well, and feel like I’m in some fake place. That’s the worst part of my seizures.

Between the memory issues, the executive function challenges, and the seizures, it can feel like a fair amount to navigate, but I’ve held onto who I am. Brain injury is so much more complex than people realize. It’s not all or nothing—you don’t either become a vegetable or recover completely. You don’t have to be profoundly disabled to be affected by it every day. You can be, as I say, haunted by it. There are so many levels and variations, and I’m still trying to understand it all.

Kristin: You said you were diagnosed with focal seizures. Did it take a while for diagnostics to understand what was going on, or was that immediate?

Epilepsy isn’t always obvious. I started having these seizures, but I didn’t know what they were at first. It wasn’t until 16 years after my injury that I was officially diagnosed. Six years after I had brain surgery, in 1994, I fell off my bike again and there was a question of whether I’d seized. I went to a neurologist. They found abnormal brain waves but didn’t confirm seizures at the time. The seizures became more frequent and came with the physical sensation and that sense of dread. Eventually, I went to the University of California, San Francisco, a top hospital, and they did a sleep-deprived EEG and other tests. That’s when they identified it as epilepsy and put me on medication, which has helped control most of the seizures. I’ve been on anti-seizure medication for 20 years now.

Kristin: I’m super curious because it seems like, back in the day, diagnostics for this kind of thing weren’t as advanced.

That might be true. I’m not sure. For the EEG, they had me stay up all night. Then they flashed lights in my eyes to trigger any seizure activity. You can’t exactly schedule a seizure; they had to provoke it. The neurologist I saw in 1994 didn’t try that, but I can’t say that it was because neurology wasn’t as advanced as it was 10 years later. I think the most important part for people to understand is that everybody’s seizures are different and the ways they experience them are different. For me, the emotional piece is the worst. There’s this sense of dread, and when it’s over I feel hollowed out. It’s not fun, but I’m lucky it’s not worse. Sometimes I think it’s more disconcerting than dangerous.

Kristin: Today is the anniversary of your injury. Will you do anything different today?

I don’t have big plans. I’ll probably go for a bike ride, walk the dog, and work. I sent an email to my sister this morning. I do that every year. She was there for me when I was recovering, and I wanted to thank her. I was lucky in many ways—there was somebody there when I crashed, there was an emergency airlift system, a world-class neurological hospital, and my sister was able to take care of me for a few weeks. I’m grateful for all of that.

I threw parties for the 10th and 20th anniversaries, but this year, I’m just acknowledging it on my own. Maybe I’ll do something bigger for the 40th. But, like I said, I think about the injury every single day.

Kristin: What routines have helped you in your recovery? It sounds like you’re working and staying active.

Yeah, I got back on the bike and returned to writing. I was a newspaper reporter and went on to win multiple awards. Exercise has been huge for me—I’ve ridden over a quarter-million miles since the accident. There is evidence that you can grow new neurons with intense aerobic exercise. Writing, staying active, and trying to live fully have been key. I also take Omega-3s and try to stay mentally sharp. I read a lot. Still, I think about the injury all the time. There’s a dent in my head where they put my skull back together, and I find myself tracing it with my finger. It’s a reminder of what happened.

Kristin: You’ve shared what you’re thankful for—what other insights have you gained in your recovery?

The biggest thing is that a brain injury isn’t like breaking a leg. The brain is the seat of consciousness, of self, of identity. So, when your brain is injured does it change who you are?’ I used to think I’d made a complete recovery, but over time, I realized there are little pieces missing—like trouble with names and faces, memory issues, and anxiety. I grew up as the ‘smart kid,’ which made the fear of losing that part of my identity devastating. I’ve had to accept that some things don’t work as well as they used to, but I’ve also gained a deeper understanding of the world. I think about it constantly—am I part of the disability community? Does the fact that some things are harder for me mean I have a disability? Or does this give me a strength that others don’t have? It’s complicated.

Kristin: That’s such insightful reflection. Does any of this show up in your writing?

I was a newspaper reporter for 21 years and now work as an editor for a trade journal. I’ve also written fiction on the side—six novels, three of which are published. I’ve recently written a novel I’m going to title, Coma Boy, about a high school senior who comes back to life after a brain injury similar to mine—same surgery, same symptoms. It’s not a memoir, but it explores the themes of identity and recovery. I’m really proud of it. I’d love to share it with the brain injury community. Seven brain injury survivors have read it so far and if anybody sees this and wants to reach out, I am eager to share it. I don’t think there is any other fiction about TBI that was written by a TBI survivor and I don’t think TBI has been depicted well in fiction. We don’t all wake up with psychic powers, right?  

Kristin: I’d love to read it. Where can we find your other books?

You can search my name, Rick Polito, on Amazon. My favorite is Off Trail, which came out in 2021. The others are part of a mystery thriller series. 

Kristin: Is there anything else you’d like to add?

Just that I wish more people understood more about brain injury. Millions of people live with it, and for most of us it’s an invisible injury. I want people to know that you don’t automatically get better when the scars fade, but that you don’t stop getting better either. I want them to know that the emotional parts can be the hardest parts. I want survivors to remember that accepting a new version of yourself might be the most important step you can take, and that you might need to take that step over and over again.