Personality Shift with Eva Shaw
Show Notes:
The role of community in healing is essential. Our guest, Eva Shaw, has found comfort and validation in both the digital and in-person community on her journey of recovery. In today’s episode, she shares her history of twenty concussions and tells us about the various tools and structures that she has found beneficial along the way. Eva tells us why she didn’t immediately resonate with the list of symptoms that describe Post Concussion Syndrome. She goes on to tell us about the physical, emotional, psychological, and cognitive repercussions of her injuries on her daily life, and the role of the various treatments at Cognitive FX that have supported her progress. We dive into the effect of the injuries on Eva’s mental health and how hearing the stories of similar experiences has brought relief and comfort to her. Eva aims to offer the same reprieve to brain injury sufferers that she has found through people who advocate for those with brain injuries, and even through this podcast! We hope you join us to hear her story today.
Key Points From This Episode:
● Eva shares her history of multiple concussions with us.
● Why Eva didn’t resonate with the list of symptoms related to Post Concussion Syndrome.
● The main physical symptoms Eva has experienced: eye strain, neck tension, and headaches.
● Emotional, psychological, and cognitive repercussions of Eva’s injuries.
● The types of therapy Eva underwent at Cognitive FX: cognitive, visual, and vestibular.
● Meditation and cardio as healing tools.
● Eva’s experience navigating post-concussion symptoms in high school.
● How Eva manages the strain of having to work on a screen all day.
● The impact of the injury on Eva’s mental health.
● How Eva has experienced feelings of isolation.
● How finding community has brought comfort on Eva’s journey.
● The role of gratitude in developing a coping strategy.
● How relationships have changed following the injury.
● A final word of thanks from Eva to those who advocate for brain injury sufferers.
Transcript - Click to Read
[INTRODUCTION]
[0:00:05.3] BP: Hi, I’m your host Bella Paige and welcome to The Post Concussion Podcast. All about life after experiencing a concussion. Help us make the invisible injury become visible.
The Post Concussion Podcast is strictly an information podcast about concussions and post-concussion syndrome. It does not provide nor substitute for professional medical advice diagnosis or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition.
Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. The opinions expressed in this podcast are simply intended to spark discussion about concussion and post-concussion syndrome.
Welcome to today’s episode of The Post Concussion Podcast with myself, Bella Paige and today’s guest, Eva Shaw. Eva was recently diagnosed with polycystic ovarian syndrome, seven years after her initial injury. This life-altering injury has forced her to make changes in her daily life. She has been undergoing rehabilitation and therapy throughout the past six months and sees signs of healing. She wishes to speak to those who are also suffering with brain injuries and wants to join the ever-growing PCS community.
For Eva, finding this community was the most positive part of her journey as a PCS survivor.
[INTERVIEW]
[0:01:39.6] BP: Welcome to the show Eva.
[0:01:40.9] ES: Thank you so much Bella.
[0:01:42.2] BP: To start, do you want to tell everyone about your injuries and what occurred?
[0:01:45.9] ES: Yeah, my first initial impact was seven years ago, it was in volleyball practice. It was my senior year of high school and I got hit in the left temple. I didn’t pass out and I didn’t think it could be a concussion but then I ended up going to the doctor’s and they said I have a concussion and to sit down and be in a dark room, no screens, so I did that, I got re-evaluated two weeks later and was feeling a lot better. My next practice back to volleyball, I got my second concussion.
My coach dove onto my head. I got two consecutive concussions, healed that one, thought I was okay and then yeah, went on with my daily life and then I start to notice that I would get symptoms when I would get any bump on my head. The first one was just hitting my head on a low ceiling. Throughout those years, I just kept getting these concussions from little impacts, which didn’t happen before.
I didn’t know what this was, I honestly didn’t release it back to my initial concussion. I thought, “Yeah” I just had no idea on what was wrong with my brain. I just kind of lived with it and I would just sit out and try to heal while I was concussed and then I’d feel better and go back to my daily life. Recently, I got four concussions in a time of two months. It was really hard for me, it was just from – one was from driving and then my last one was the hardest one I’ve ever had.
I’ve counted 20 concussions throughout my life now and it was definitely been hard. The last one was the hardest for sure and this is when I felt a lot of the symptoms coming on. Yeah, luckily, I found a rehabilitation center called Cognitive FX. They’re located in Utah and I immediately started therapy and this was my hope to my recovery. Now, I’m five months post recovery and I’m still recovering, I think it’ll be a lifetime of therapies and exercises and management but that was kind of my concussion story.
[0:04:12.6] BP: Thanks for sharing and yeah, it’s amazing how sensitive your head is, sometimes after concussions, a lot of people deal with it, mine was like someone would touch my head and it would hurt and things like that.
[0:04:23.9] ES: Yeah.
[0:04:24.9] BP: It would make you panic.
[0:04:26.1] ES: Right, it’s really interesting and whenever I would look up post-concussion syndrome or any head injury, it would never come up with sensitivity to impact and it would always say, “Oh you just have headaches or dizziness or nausea” and I didn’t really relate to that when I wasn’t concussed. I would just turn away from that diagnosis. Yeah, I’m really happy to have a diagnosis now and kind of go towards the healing process but yeah, it’s definitely a big one for a lot of people.
[0:04:57.6] BP: For sure. Well, what type of symptoms did you have if you didn’t have like the dizziness and things like that?
[0:05:03.0] ES: My main symptoms are eye strain, neck tension and then with that comes headaches. It turns out that my visual processing part of my brain was damaged so my eye strain is – and how my eyes interact with my brain really caused the pain and the neck tension comes from that. I also have had experience with light sensitivity and noise sensitivity.
Over stimulation and brain fog are my other two. Just being in a lot of, in a room full of people, I can only last so long. I normally try to just go to the bathroom, take breaks to just get away from that for a second to regroup and then my other underlying symptoms that I didn’t really realize were symptoms from my brain injuries, mental health related, so depression-anxiety and then I also had a shift in personality.
I used to be more mellow and laid back and I totally went to the type-A fast-paced lifestyle and I realized that shift happened after my impacts. Also, hormonal imbalances, I’ve noticed which I believe are related to my brain injuries.
[0:06:20.3] BP: Do you have anything that helped in your recovery? I know you said you did – you’re in the process of doing Cognitive FX, have you done anything else that’s helped?
[0:06:29.8] ES: I did cognitive therapy through Cognitive FX as well as visual and vestibular and that’s where a lot of my problems are. I am seeing a visual therapist regularly. I do those exercises, basically, every day, I’m trying to manage that. Also, cardio. High-intensity cardio really helps my symptoms. On the days where my neck tension and my eye strain are pretty bad, that usually, getting the blood flow up there really helps the pain and then finally, mediation has really helped me just kind of calm that system down, get out of that high stress mode that I kind of went to after my brain injuries.
[0:07:12.7] BP: Yeah, for sure. Well, how do you find cardio, what type of cardio do you do? Does it cause symptoms because my headaches, things like running were a really bad idea? What do you do?
[0:07:23.9] ES: Right, yeah. Actually, I used to be a big runner, I would cycle. I was really active but with my brain injuries, I can barely run anymore and that’s something I’ve heard on your podcast before about – that’s one of the hard things and I actually invested in a spin bike so it’s stationary and I just close my eyes on it and I just get my cardio in. That has saved me because I can get to that high-intensity cardio without getting high symptoms.
Luckily, my symptoms are mostly from movement and visual stuff and not from just the cardio itself. I can still get to that place of high-intensity cardio.
[0:08:08.9] BP: Yeah, well that’s great, that’s one of the nice things about spin bikes is you’re not moving, you don’t have the up and down movement, right? There’s lots of exercises that are possible when you’re post-concussion or post brain injury but you have to kind of figure out what works for you. There were some things, one thing that was really recommended to me was swimming because you don’t have a lot of, like depending on what you’re doing, you can be quite calm in the water and still get exercise in at the same time.
It was one of those things like on a spin bike, you’re not going up and down, up and down. That was the running thing for me or things like burpees and lots of that kind of stuff. I get really dizzy, I feel like, “Whoa” or everything would go black and I’m like, okay, I need to not do that but it’s great because I find it helps with your endorphins too, especially with the mental health if you can exercise, so that’s really important.
You found a few things that helped and something you were in high school when you got your first one, how was school? How was high school, how was after, how have you dealt with all of that? Did you have to deal with symptoms when in class? How did that go?
[0:09:23.1] ES: Yeah, for my experience, I didn’t really have these symptoms every day. It was more like when I was concussed, I would take time off. Luckily, I remember taking time off in high school throughout my college years, I was able to get through without taking time off. Somehow the concussion just landed on weekends or holidays and yeah, I don’t remember taking too much time off in college.
Recently, with my last concussion, my work, I had to take almost a month off, so that really affected me. Luckily I was living at home and my work was really accommodating to my needs, they told me just to rest and come back when I needed to. I’m really grateful for that. Now I’m in my master’s program for architecture. I’m working a lot on the computer and I’m also working part-time on the computer.
Doing that all day can be a lot for my brain. I take a lot of breaks, a lot of eye massages and calming for my eyes and then yeah, just making sure I stay grounded and mindful and breathing really helps me get through those times.
[0:10:42.3] BP: That’s awesome and I get that because of the podcast and everything else, I now live on the computer it feels like between social media on my phone, answering people and then on my computer. Sometimes my eyes are just like done, it’s been a long time, when you add it up like between school and work, it’s like, “Whoa.”
[0:11:06.0] ES: Yeah, it’s really hard that now, everything is virtual, especially since the pandemic. We’re kind of forced to be on the computer but yeah, taking those breaks and also just little naps throughout the day also helps a lot for me.
[0:11:22.5] BP: Yeah, well I’m a huge nap fan, I’ve mentioned it before, take one every day, almost. How my naps work is it depends on what I’m doing, it kind of depends on what I’m doing that night. If I want to do something that night, say after 6:00 that I need my brain function doing work, doing a podcast, writing something, anything involved with high-brain function, then I need that nap.
Otherwise, I can go without that nap if I’m just going to go hang out with friends and just kind of do nothing, I can survive without it but I find, if I go to try to work without it, my brain just doesn’t work. I’ll just stare at the computer for like an hour and be like, “Okay, yeah, I needed to sleep today, I can’t” there’s nothing left, there’s nothing left to give. It kind of helps me restart my day, I’m a huge nap person.
[0:12:14.7] ES: Yeah, I agree. I was never a napper before this but now, it’s like, to get to that last couple of hours of the day, I really need to just lay down and rest and then I feel re-energized.
[0:12:26.4] BP: Yeah, it makes a big difference. With that, we’re going to take a break make sure you stay around to hear our discussion on mental health and relationships.
[BREAK]
[0:12:39.5] BP: I just wanted to say thank you. The podcast is just over six months old and I couldn’t be happier with the response. If you truly love the podcast, please consider leaving a tip in our support the podcast tip jar down at the bottom of our episode description. All tips are greatly appreciated and help cover cost of the show.
[INTERVIEW CONTINUED]
[0:13:04.2] BP: Welcome back to The Post Concussion Podcast with myself, Bella Paige and today’s guest, Eva Shaw. Something that we’re going to get into that you’ve mentioned is mental health, which is also my favorite topic. How is your mental health been affected throughout your concussions and then now?
[0:13:21.0] ES: My mental health has been greatly affected by my brain injuries. Before my brain injuries, I noticed I was a pretty cheerful person. I didn’t really experienced depression or anxiety or any of those mental health situations but since my brain injury, I’ve noticed a deep depression comes from the pain. I feel like it’s directly related for sure, the days that I have more pain are the days that I struggle the most with my mental health.
It mostly comes with feeling not myself. I don’t feel like I can go on a run or just be outdoors or be around people all the time, so this really affects me and I know it affects many other people who are in the same situation, so yeah, definitely still something that I struggle with but something that I am working on through mindfulness and self-care.
[0:14:17.5] BP: Yeah, it’s hard and I get the pain thing even like to this day, I don’t have a headache every day anymore. I don’t get headaches that often and usually, I kind of cause them from things that I did because I know what triggers them but those bad headache days, some days my head starts spinning and things like bad thoughts come back and I’m like, “No, no, you can get through this.” I know nowadays I can push them away within a second not like before, they didn’t go away.
Once they started they didn’t stop and I get it because it is a lot of pain and there is something about chronic pain but then there is also something about pain in your head and I feel like a lot of it is because your ability to think also goes away. If your hand really hurts, you can still think. Your thought process doesn’t stop, your memory doesn’t disappear, when you have a headache all of a sudden sometimes you can’t remember things.
You can’t do anything like watching TV might hurt, reading a book might hurt, so all of those things that people recommend for you to do and relax with you can’t do, which is really frustrating because I always remember people being like, “Why don’t you do this? Why don’t you read a book? Why don’t you do that?” and it’s like, “I can’t do any of those things that you just recommended to help make me feel better.” I used to get told to do a puzzle and now I love puzzles but before my head was in so much pain.
I was like, “This isn’t fun. I’m causing more pain” so I find that’s a really big issue where the headaches connect to the mental health for sure. Something else we go through as concussion survivors, like as you said, your life has changed a lot and who you are has changed a lot and sometimes we feel really isolated because of this and also because going out the front door can be really hard. How are you affected by the isolation feeling?
[0:16:11.7] ES: The isolation was definitely one of the hardest parts of my experiences with my brain injuries, specifically when I didn’t know my problem and my diagnosis, I was just as lost as everyone else. It is also such an internal illness so people can’t see, “Oh she has a headache” or “Oh, she’s not processing what I’m saying as quickly as the normal person and she’s overstimulated here in a cloud.” It was really hard for people to relate to me and I kind of lost myself for a moment because I was even like, “I need some answers. I don’t know what’s going on with my brain.”
My brain is who I am, you know? You’re not your brain, you’re not yourself, you’re not your personality. Yeah, a strong feeling of isolation for sure and that really affected me. I felt unheard, not understood but then I also yeah, just didn’t want, like, people to feel pity but I wanted understanding. It was a fine line and I even got comments from some of my closest friends saying like they think this is all psychological or one friend said, “Shouldn’t you be dead by now if you’ve had 20 concussions?”
Those comments did not help my recovery process. They really pushed me down and my mental health as well. Once I got my diagnosis and I found this growing community that really made me feel heard. Even finding this podcast, listening to other stories I was like, “Wow, this is real and these other people experience it.” As much as I don’t want other people to experience this, having that community is just something that really saved me and I couldn’t be more grateful for it.
[0:17:59.6] BP: Yeah, I get that. Actually, there was something on Facebook about that that I was talking to someone about it today, how it’s a different kind of comfort. You’re not happy that someone else is going through it but you’re happy you’re not the only one in the world because that’s what it feels like, so there is a strange comfort in knowing other people are going through what you’re going through. Do you have any tips for others feeling isolated or the same way? How did you get through it?
[0:18:27.9] ES: I guess when I didn’t have this community yet, a lot of it came from myself. I know that something was wrong with me internally and I needed to listen to that and listen to my body and my mind. Finding that self-care and that self-love really guided me. I knew that I was my only support, so to stay true to myself for sure really helped.
Also, gratitude really helped me with this experience. On the hardest days, I would just think what am I grateful for even though I’m in this chronic pain or I’m experiencing these things, what can I be grateful for and there is always something to be grateful for, so that really helps me keep my head above the water.
[0:19:12.9] BP: Yeah, for sure. Well, thank you so much for sharing. Something you kind of already talked about was your one friend who was horrible and some nice people made comments. I think it’s a lot of a time it’s like you said, they can’t see it and because it’s invisible, they have a really hard time comprehending something they can’t see so they just don’t believe you, not that that’s an excuse to ever say something like that but I find that that is a really common problem.
These people look at you like, “Oh, you were fine yesterday” “Well, no I wasn’t fine yesterday but I was good enough that I could smile through it” like you know, there is lots of those days that people aren’t realizing like you had mentioned. How are your relationships affected like with your friends other than the mean friends and family?
[0:19:59.1] ES: I took those comments personally but I really tried to understand where they are coming from as well, so like they didn’t go through or they have an experience to brain injury so they really don’t know. Yeah, I tried to separate the two but it definitely affected my relationships and an example of this is with my boyfriend. He has always been my number one supporter and through the past years, my head injuries got worse and, I got, impacts way more.
There were a lot more times where he was with me just seeing me go through these hard days and you know, he told me he just feels helpless and I said, “I do too, you know? I don’t know how to help this” and he didn’t either so that really strained our relationship and some of the days, we’d have plans to go out and then I’d have to say I can’t and I’m in bed in the dark room in the middle of the day, so he felt like he had to be there with me and so it really does strain relationships.
With my family, they have been pretty understanding. I’m really grateful for them and my mom has been the most understanding through this experience. At first, she had troubles understanding and yeah, she just didn’t see me. I was off in college and so when I came home and have these impacts and these injuries, she saw how much I was suffering and said, “Okay, obviously something is wrong.” She’s actually the one who found the rehab center for me, which was amazing.
She went there with me and now, she’s been my biggest support through this so I’m really grateful for her and I feel like when people understand that’s when they can really support.
[0:21:44.5] BP: Yeah, well that’s great and yeah, the relationship thing is hard and yeah, you’re right. You both feel like you can’t fix it and you want to fix it as a partner. I always remember my brother and I were talking about how we apologized to our partners about things going on in their life that we have no – we’re not affect by it. We didn’t cause it but you’re like, “Oh, I’m so sorry” you’re so sorry and they’re like, “You don’t need to be sorry, it’s not your fault” but at the same time, you don’t know what else to say because you don’t know how to fix it and they can’t fix it so you’re just sorry and you are.
That’s how it goes and it’s a hard situation to be in and I get the like you can’t go out because you have a headache that day and your schedule probably changes a lot more frequently when you have headaches than most people expect like even with the podcast, there’s day where I’m like, “Oh no. I got to cancel because I can’t think today” so podcasting isn’t going to work because I need to be able to process enough to answer a guest and there’s lots of that but I’m really glad that your mom has been so supportive and it makes a big difference.
I find with a lot of guest and others that I’ve talked to, when someone else helps find you places to get treatment or finds a therapist for you because sometimes, when you’re going through this you don’t have a lot of energy and you don’t have that extra push to do it. If someone else does it for you, it’s like, “Okay, yeah. I can go to therapy” and then they set it up for you and you’re like, “Okay, I can really do this” rather than, “Okay, now I need to find a therapist. Now I need to book a time and now I need to get there.” It can be really helpful if you have someone else to do that with.
[0:23:29.8] ES: Totally. Yeah and that’s how I experience my recovery, so it definitely helps having that shoulder to lean on and just someone to kind of support you through it because with brain injuries, you are kind of a step backwards sometimes or some days.
[0:23:47.1] BP: Yeah. Well, is there anything else you would like to add before ending today’s episode?
[0:23:52.1] ES: I personally just want to say that I am really thankful for this podcast and I think it really helps a lot of people and finding this community has just changed my life, so just really grateful for the people who advocate for brain injuries and that’s part of the reason why I wanted to come on here and tell my story is because I just want even it affects just one person, I would love to help someone through this and be that voice and that listener.
[0:24:23.5] BP: Yeah, well thank you so much for joining and sharing your story post-concussion.
[0:24:28.2] ES: Awesome, thank you so much.
[END OF INTERVIEW]
[0:24:35.0] BP: I just wanted to say thank you. The podcast is just over six months old and I couldn’t be happier with the response. If you truly love the podcast, please consider leaving a tip in our support the podcast tip jar down at the bottom of our episode description. All tips are greatly appreciated and help cover cost of the show.
Has your life been affected by concussions? Join our podcast by getting in touch. Thank you so much for listening to The Post Concussion Podcast and be sure to help us educate the world about the reality of concussion by giving us a share and to learn more, don’t forget to subscribe.
[END]
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