Interview With Lindsay Caron Epstein
January 3, 2023
Emma: So to begin, I was just wondering if you could tell me a little bit about yourself.
Lindsay: I’m Lindsay. I am 44, I live in Seattle on a houseboat that I’m renovating at the moment. I've lived in like 10 different cities, and I've been into mountaineering, back country skiing, paddling and stuff. And …that's the most of it. Oh, and I was working in tech previously as a product owner that managed web developers. And before that, I was an actress and musician and a writer, working in a coffee shop to actually pay rent.
Emma: I was wondering if you could tell me a little bit about your injury, as much as you feel comfortable with, how it happened.
Lindsay: When Covid started we all went remote, so I went to Baja Mexico to go learn to kite surf, and I spent three months down there. Then when it was time to come back up, I was thinking about moving to California. So, I stopped in San Diego, and was there for about 10 days. I went for a little bike ride. Actually, not even a bike ride: I went to visit a friend and had to get my bicycle out of my car and take it round the back through the back alley to get into the garage. Since it was just that little distance, I wasn't wearing a helmet and an SUV hit me from behind. It was going over 40 miles an hour. It was a four-lane road in a suburban neighborhood: two lanes in each direction and cars parked on the side. It's legal for bikes to take up a lane. There was no bike lane, and the vehicle should have moved to the left lane and passed me but apparently, it didn't see me, and it just rear-ended me and then it drove away; a hit-and-run. My skull cracked open. When the ambulance came, and I had a Glasgow Coma Scale of three. I see from your expression you know what that means. Most people don't even know what a TBI is, let alone knowing what GCS is. So, on the Glasgow Coma scale, the lowest possible score is three. Apparently 89% of patients with a three die within 30 days, 7% permanently are in a coma and 4% permanently damaged. So, the doctors informed my parents I wasn’t going to survive. I was in a coma for several weeks. I had 3 brain surgeries, a ‘pinned’ pelvis (with a huge 6 inch screw), my pituitary gland was damaged so now I have hypothyroidism, and I acquired hydrocephalus. Most people don’t even know what that is, I didn’t know what that was before.
Emma: Are you able to explain what that is?
Lindsay: Yes, so we all have liquid in our brains: cerebral spinal fluid (CSF). If it stops naturally draining, that's hydrocephalus. Your skull doesn’t change shape, so your brain has to shrink to make room for the liquid, and if it’s intense and not treated it’s fatal, so now I have a shunt: a pipe implanted for life which goes from my brain down to my pelvis to remove the extra liquid. I previously had Lasik surgery and I didn’t need glasses anymore, and then I broke all these bones [around eyes] and one eye was kind of hanging out and the other one was indented, and the doctors told my parents I’d be blind. And now I’m not blind! But I do need glasses again.
I was in the hospital inpatient for a total of 5 months. My brain wasn’t functional much, so I don’t recall four of them.
Emma: Do you still experience any symptoms from your injury, other than your vision?
Lindsay: Not really. The shunt is a little sore. Like if I’m leaning against a wall, that is a little uncomfortable and I’ve got to lean the other way. And it recently was kind of sore for a couple days and I figured that if I’d just banged my elbow and it was sore... So what. But this shunt thing is saving my life, so I had to go to the ER to have a CT scan to get it checked out. Which after insurance covered, it still cost me like 700 dollars. Yeah, so that's where we're at.
Emma: Are there any steps that you’re still taking to recover from your injury?
Lindsay: First when I was discharged, the doctors said that I would always need a wheelchair and that I would always be on feeding tubes, and that I would always need an at home nurse. Fortunately, not accurate. And so, I went to live with my parents in Florida for 7 months, and I just returned to independent living on the other side of the country a couple weeks ago.
Lindsay: Thank you! So, I have to find all my new neuro doctors here and I don’t know who I am supposed to see when. And as I call them, they’re like ‘oh well you need a referral’. I’m confused. My new internist just got me a referral, but apparently I need to request 3 additional referrals, but…. Who do I need to see? Is there a resource guide? I don’t have a Neuro doctor yet, so where do I acquire this information? And the next appointment is in July. and I’m like what... How do… how often do I need to get this stuff checked? And by who? There’s not like a pamphlet. There really should be. When you get discharged from the hospital, there should be a pamphlet of all the doctors you need to see, and how often you need to get checked and what the next steps are. It’s possible I need relationships with a Neurologist, Neurosurgeon, Neuro-opthamologist, Neuopsychologist….
Emma: That must be overwhelming, trying to figure that all out.
Lindsay: I mean, I think it's overwhelming for everybody, and I am shockingly way better than most, so I can't fathom what it would be like if I were similar to most survivors who are still not really functioning well and trying to figure this out.
Emma: So how has living during covid times affected your recovery?
Lindsay: I don’t know that I noticed it; I was healing, I probably shouldn’t have done stuff anyway and there was nothing to go do. When I was in the hospital (and I don’t have a memory for 4 of those months), I recall realizing “woah I’m in the hospital? I’ve been here how long? How come I don’t know the other patients? We should all be a community. We should all be learning about this new TBI stuff together.” And they were like ‘oh we don’t think other patients want that.’ I was in awe. “That's silly how could patients not want that? We're all learning this new thing together.” And they were like “oh well… also covid so we don’t want you all in the same room.” Then they tested everyone. No one had covid and so they opened up the community room, and that’s when I met the other patients. From my perspective, possibly there’s the ICU, then Rehab and this was probably post-rehab inpatient, so I just assumed everyone was kind of in the same condition I was in, but instead: they were frozen in their wheelchairs, just staring blankly at a wall and not really speaking, and I was like woah…this is wild.
Emma: How do you think that affected your recovery?
Lindsay: I think it would have been beneficial had I been conscious longer. And I don’t even know what the word is: I was conscious, I was walking and talking, I re-learned to walk and talk but I don't have any memory of any of that. I think it would be incredibly beneficial if people are able to communicate with other patients and hear, ‘what's your story? How did you get here?’, and ‘what happened to you? How is your healing and recovery going?’ How about we bring in some panelists comprised of people that have gone through TBI, and are 5 years out: what’s been their experience? I believe had covid not been occurring it would have been possible to create those events. And it would have been helpful. I’m just getting into it now. Initially everyone was concerned: the brain and the TBI were the big issues. So I joined some TBI groups. Now I’m just beginning to get into these hydrocephalus groups and I’m like oh my, that’s another very serious thing I didn’t even know! So, I’m hearing their stories, what their symptoms are and what recovery tactics they’ve engaged in. Incredibly useful. And it’s also interesting,
When I got out of the hospital, I went to see neuro doctors and they said “you look like you’re in great condition. See you again next year.” I was shocked. I went from 24-hour care, to just one hour a year. And I don’t know what I’m doing. And now theoretically I guess I should go back to work. I applied for disability… was denied. Which is really weird given all that stuff that I went through. We appealed it and now they’ve agreed for a hearing and that is coming up in a couple months and I’m like ‘I need time to learn about my new disabilities and to figure out what steps I could take to heal them, or not get worse, and what doctors do I need to see when?’ I need to start relationships with them, and they don’t have a space open for 6 months. So, if there was a pamphlet, or if there were instructions, or you had more time once your brain came back to functionality to learn this stuff, that would be useful.
Emma: Who would you say are the people you’re the most thankful for during your recovery process?
Lindsay: My parents. Everyone should have awesome advocates, and most do not. And I think when I was in a coma and I wasn’t really functioning or speaking, the doctors were like ‘she can’t hear you, why are you reading her Shakespeare’. They were reading all this intellectual stuff and they’re joking and they’re playing all this music. And because covid they were only allowed to visit for 2 hours so they split it up instead of coming at the same time, so that I had 4 hours of company. They would make sure to read to me and play music and that’s awesome. Also… they are the reason that my hydrocephalus was discovered. Because they noticed that I was declining, and they were concerned, so they mentioned it to the doctors. The doctors replied ‘Don’t worry about it, TBI recovery had ups and downs’. My folks requested a CT scan and the doctor said “no she’s had enough”. So, my incredible folks found an external, outside of the hospital, neuro doctor of some sort, got a second opinion, went back and went to managers and supervisors and demanded a CT scan. And apparently, they begrudgingly responded ‘ok fine…’ and were like ‘woah hydrocephalus!’ and I had surgery an hour later to put in the shunt because it was pretty severe. The neurosurgeon was like “why didn’t we know about this ad fix it weeks ago?”
Emma: I could only imagine people who don’t have advocated for them.
Lindsay: Right. And it’s so interesting because I hear that story kind of often from TBI survivors who bonked their head and went to the doctor and they said “oh your fine”. Then weeks later still kind of dizzy and they go back to the doctor and they're like no you’re fine, and then months later they get tested and they finally discover “oh you had a TB!”. People should do more testing.
Emma: Yes, I definitely agree. Are there any important insights you gained from your journey of recovery?
Lindsay: First, I'm hoping I find a neuroscientist who wants to research why the heck I've done so uncommonly well. So that we can help others. Since I don’t know, I suspect because I was active and healthy and mostly vegetarian…? Most folks believe they should be fit so they are attractive. But… maybe fit helps strengthen your organs? A normal surgery is 3 or 4 hours because your organs can’t stay under anesthesia for so long. Yet my first surgery was 12 hours long because my kidneys and lungs just kept going. Maybe it’s because I was so healthy and active prior to that. Then there’s that concept that my parents reading to me and playing music even though I wasn’t functional was helpful. When I was discharged, I got out and I was told to rest, but really I wanted to go out and walk. And I always take the stairs: even when there are escalators and elevators, I take the stairs. It was really scary at first, but I was like “nope you’ve got to take the stairs, girl” and I think that probably helped elevate my healing. In my head, and (I’ve actually read about this a bunch) neuroplasticity is important, and I think most people just stay the same: they stay in the community they were raised in, maybe they move once or twice. They go to work, they come home, they sit on the couch and watch football. They don’t take any risks, and I’ve kind of been the opposite. I’ve moved to 10 cities by myself, I’ve been to 20 foreign countries by myself, started companies by myself, and I live on a boat. I do all these unique awesome things that, when you hear about excites folks.,Then there are these others, people who take risks and adventure and do the things that frighten them. This is where they grow and evolve, and in my head, that’s also maybe what’s helped me heal.
Emma: Have you been able to get back to any of the activities that you liked to do prior to your injury?
Lindsay: Yeah: everyone who has a TBI is not supposed to drive, and their licence is lost, and they have to wait a year to get tested via a Neuro exam to drive or to bike. They wait a year, rarely pass, and it often takes 5 or so years till they can return to it. So, I waited 11 months and I passed! I started biking and driving again. I pretty quickly returned to 40- and 50-mile bike rides. Yesterday I went skiing for the first time since my accident 2 and a half years ago. It was a ski tour. I’m doing everything, I can even start to run again. I’ve got a lot of work to do and I hope when I do that work, I can share it with other people.