Moving Forward with Veronique Theberge
Show Notes:
Brain injuries can occur in a number of ways, but the pathway to recovery can often look remarkably similar. Our guest today, Veronique Theberge, is a French Canadian living in New Zealand and is an encephalitis and brain injury survivor. Veronique has written extensively about her experiences on her blog Weird Wonderful Brain, where she provides resources for other survivors and promotes awareness of encephalitis and brain injuries through her articles. In our conversation, Veronique recounts how a rare case of encephalitis (which causes swelling in the brain) resulted in her Acquired Brain Injury, and how being misdiagnosed worsened her symptoms and prolonged her recovery.
She goes on to recount her story of recovery, including a major setback after her first brain injury, when a highly uncommon reaction to general anesthetic caused her to relapse. Veronique also reflects on the physical, as well as mental, challenges she has had to contend with, and what it has meant for her to remove the word failure from her vocabulary as she learns to live with her brain injury.
We hope you’ll join us for an encouraging conversation on healing, recovery, raising awareness, learning how to ask for help, and taking things one day at a time.
Key Points From This Episode:
Get to know our guest, Veronique Theberge, and her experience with contracting encephalitis.
The relationship between meningitis and encephalitis.
Veronique’s first trip to the hospital and why doctors thought a severe sinus infection was the cause of her symptoms.
The symptoms Veronique experienced before she was diagnosed with encephalitis, like extreme headaches, panic attacks, and anxiety.
The evidence that encephalitis caused her original brain injury.
How Veronique was finally correctly diagnosed and the treatment she received thereafter.
The positive progress Veronique made during the 20 months after her brain injury.
Veronique’s experience with general anesthetic, her rare reaction to it, and how it set her back substantially in her recovery process.
How the recovery pathways for those healing from brain injury are remarkably similar, despite the wide range of ways that brain injuries can occur.
The importance of raising awareness around brain injury symptoms and recovery, including mental health.
Why it was so challenging for Veronique to ask for help.
The importance of getting the help you need rather than trying to push through your symptoms.
How Veronique eliminated the word ‘failing’ from her vocabulary, and instead focused on what she could control.
Some of the techniques Veronique uses to support her mental health, especially when she is having a particularly difficult day.
Check out Veronique’s website: https://weirdwonderfulbrain.com
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[INTRODUCTION]
[0:00:05.2] BP: Hi everyone, I’m your host Bella Paige and after suffering from post-concussion syndrome for years, it was time to do something about it. So welcome to The Post Concussion Podcast, where we dig deep into life when it doesn’t go back to normal. Be sure to share the podcast and join our support network, Concussion Connect. Let’s make this invisible injury become visible.
[DISCLAIMER]
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.
[INTERVIEW]
[0:01:15.0] BP: Welcome to episode number 90 of The Post Concussion Podcast with myself, Bella Paige and today’s guest, Veronique Theberge. Veronique is an encephalitis and acquired brain injury survivor who provides an honest insight into the challenges linked to living with a brain injury.
She’s contributed to various projects led by national and international brain injury associations such as Brain Injury NC, Synapse, The Encephalitis Society, Sane You and the World Health Organization. Through her advocacy work, she aspires to initiate changes that will allow for timely diagnosis, treatment and adequate support, once the patients get to go back home.
Welcome to the show Veronique.
[0:01:55.8] VT: Thanks, thanks for having me, Bella.
[0:01:57.8] BP: Yeah, well thank you so much for coming on. So Veronique’s experience is a little different than our typical guest but do you want to tell us a little bit about your brain injury experience?
[0:02:07.8] VT: Yes, so just a little over five years ago, I contracted meningitis, which then turned into viral encephalitis. So meningitis is an infection of the membrane that surrounds the brain, where encephalitis is when it gets through that membrane and gets into the brain. So there, you’ve got different types of encephalitis and mine was from a viral source, still don’t know to this day how I contracted it.
Their best guess is that my body was fighting some sort of infection that would have migrated in my bloodstream and from the bloodstream to the brain and then crossed the blood-brain barrier. So yeah, there are quite a few steps I suppose to get that sort of viral infection. So whether I’m been very unlucky that all the criteria aligned on the day, yeah, who knows?
[0:03:00.8] BP: Was it scary? Like had you ever heard of encephalitis and meningitis before you experienced it?
[0:03:07.3] VT: I had heard of meningitis, never of encephalitis. I just didn’t understand what was happening to me, to be honest. You know, one minute I was perfectly fine and the next, like, just, it started as a very intense headache, so that very intense headache kicked in. I was actually vacuuming the lounge after the kids had gone to bed as you do and it felt like if someone had hit me with a baseball bat behind the head.
So that’s how the headaches started. I thought, well, things had been a bit stressful at work so I thought, maybe I’m stressed, maybe I’m tired. I’ll just go to bed because I wasn’t prone to having any sort of headaches or migraine. So yeah, I put it down to fatigue, went to bed, woke up the following day just feeling very, very average, still that intense headache but at the time, we had contractors coming from overseas for a project I was leading.
So I still went to work with you know, a double dose of painkillers and so on and then it’s really when I came back from work that day, the drive was only a five-minute drive back to my house and I just couldn’t register what was in front of me. So the way I describe it is as if I was driving to a mirage, not really understanding what was in front of me and from there, my situation degraded pretty quickly.
So eventually, I went to the hospital, they were screening me for stroke because I was presenting a lot of the symptoms had crossover with stroke I suppose and then they didn’t really see anything beside like massive inflammation of the sinuses. So yeah, I was given lots of pain killers, morphine to try to just manage the pain and eventually, I was released on the basis that I was probably just having a very, very bad sinus infection.
So I got back home. In the following days, that’s when you know, I realized that a lot of the usual stuff was just not right at all. Things like my speech would start to slur, I wasn’t able to read anymore. I was having massive panic attacks, which was very uncommon to me. My peripheral vision would disappear, you know, just lots of… a huge range of symptoms and I was like, “Something is definitely not right here.”
So I went back to see my GP, I was given a week off for stress and eventually, things just kept getting worse and worse. So I went back to the GP, rang the hospital and that’s when they noticed like, to my lumbar puncture result that yeah, I had a high white blood cell count in my spinal fluid and I had tested positive to something that’s called enterovirus. So that’s when they realized that, “Ooh, hang on, we’ve missed something here” and that’s how I got to my diagnosis. So that’s how I guess the original brain injury occurred.
[0:05:57.9] BP: Yeah.
[0:05:58.9] VT: I was making steady progress in terms of recovery as far as someone recovering from encephalitis as encephalitis goes and then I think it was 20 months following, encephalitis, I had to have a general anesthetic for a surgical procedure. Again, I’m one of those very lucky person with that very small percentage that gets a brain injury from or not getting brain injury from a general anesthetic.
So that pretty much brought me back in time 20 months, so I had to start from scratch all over again, the recovery process. Only this time around, you know, I wasn’t recovering as well, the symptoms were all a little bit, you know, a different threshold. So it was pretty hard, you know, knowing how hard I had worked the first time around and now that I had to start all over again.
[0:06:50.5] BP: Yeah, that’s hard. I see that a lot with brain injuries, concussions from mild to severe as well, where you get reinjured and your first injury maybe, you noticed you were off for a little bit and then that second injury or third or fourth or there’s always one later that’s like, “This one changed my life” and it’s really hard because you’re like, “Well, I’ve already been doing this.”
For you, 20 months, that a long time but you’re already been recovering and working towards getting better and then you get set back and I think that’s where the crossovers of brain injury are so large, where your injuries were not… or your illness was not related to hitting your head or anything like that but it didn’t matter. A lot of your symptoms were the same, the brain is ill and it is I think so fascinating but scary at the same time how the list of symptoms are things that are very similar.
I always tell people that a lot of times, traumatic brain injuries and ABIs can be very severe at the beginning and they start out worse but then they end up with a lot of the same things that mild traumatic brain injury and concussion injuries end up with, where the light sensitivity and the mental health and all these different types of symptoms continue to affect everyone on the different spectrum of injuries.
[0:08:15.9] VT: Oh absolutely. I’ll always think that to categorize a brain injury, it’s important for the diagnosis to understand how it occurred to potentially mitigate the following risks but the recovery pathway it’s very, very similar regardless of how you acquire your brain injury and that’s something that I’m quite passionate about because encephalitis is rather rare and therefore, very misunderstood, not a lot of resources available.
So most of the resources that I’ve come across that have really helped me throughout my recovery, just falling on their brain injury recovery as very generally. So yeah, I’ve got a lot of information and resources just through communicating and getting involved with the brain injury community.
[0:09:05] BP: And I think it’s wonderful that you are. I think the more people that get involved with it, the better because it just needs so much more awareness and a big part that we talk about here a lot is the mental health factor that often gets really missed somehow. It kind of blows my mind because I think that at this point, people would realize that it’s just as big of a part of the recovery as the physical aspect but how has the mental health experience been for you?
[0:09:30.9] VT: I’ve always been someone that’s really strong. My mom likes to say that when I was really young, I was always saying, “I can do it, I can do it. I don’t need help” and that’s from a very young age. So I guess as an adult, I was very much the same. In the end, you get a brain injury where you have to rely — not only you can’t rely on your own brain for a lot of stuff, you got to rely on a lot of people to help you and help the family get through, you know, a very hard time and I wasn’t one to ask for help because could do it myself all the time, you know?
I’ve spent 29 years being able to do it all and all of a sudden, I couldn’t. That has been a big adjustment for me. I think it led me to thinking that I was failing all the time because I had to ask for help and that feeling of failure has really played with my mental health a lot. So I think that was probably the first bit of how my mental health was affected and then obviously, because your body and your brain aren’t working properly anymore, it just creates a whole cascade of effects that can also affect your mental health.
So you know, you’ve got the mental health itself but the way I described it is your physical health can affect your mental health just as much as your mental health can also affect your physical health so it’s all intertwined. So because my body wasn’t functioning properly, releasing the right hormones, et cetera, et cetera, it did eventually, you know, have an impact on how my mental health would hold up.
[0:11:04.4] BP: Yeah, I really like how you said that because for myself, the mental and the physical were very connected. So the headaches caused the mental health and the depression and a few other things that I wasn’t able to do but then the mental health, like the stress and anxiety and that tension in my body, also caused extreme headaches.
So, it went back and forth and actually, when my headaches went away, my mental health didn’t get better, that I’ve talked about on the podcast before like I expected it to because in my brain, it was like, “That’s how it works, the pain is causing the illness and when the pain goes away, the illness will go away” but it’s a lot more complicated than that and so, it is very connected.
I know for myself, even to this day, because my head is more sensitive if I get really stressed or anxiety or something as just spinning in my brain, my headaches will start to appear again and it doesn’t take much for me to start feeling them and so it is amazing how connected it can be and that asking for help was a big thing for me as well and a lot of it was just I was really stubborn
Like my whole teenage years, I think that’s kind of normal but I was probably extra stubborn in comparison to my siblings and so I kept wanting to keep going. I didn’t see a reason why like, my illness had to stop me but what that would do was cause my symptoms to get way worse and everything to get really severe all the time.
I just kept getting on a cycle where like, I would get things improved but then I would push myself so far that then I would be starting all over again and I would do that again and again, and again and so it took a long time to be like, “How about we ask for help? How about we don’t rush into things and we’ll see how we do trying to get through this.”
Because there’s nothing easy about it and I think it’s really important to realize that it is something you have to take and do one day at a time to get better.
[0:13:03.3] VT: Yeah and that’s fatigue management, you know? But I remember having had no information about how to manage the fatigue and you know, all the symptoms that can be associated with it as well for a long, long time. So by the time, unfortunately, you start figuring those things out and accepting that you got to manage things differently, a lot of the damages already started to occur.
One of the things that I can remember like really vividly is I was someone who would have the usual stress but I wasn’t someone who was stressed or definitely not anxious and I remember once going to get my kids from school. You know, at the end of the day, all the kids gather in the quad and there’s lots of noise, lots of… and I remember, all of a sudden, getting a massive panic attack from something that is you know, fairly simple that I had done thousands of times before and those were all, I guess, feelings and symptoms that I was not used to.
I sort of could, I think, I could sort of explain them and understand what was happening but I still couldn’t understand why I couldn’t control those feelings and again, the feeling of not having any control over what was happening, you know, was really destabilizing and make me feel, again, that sense of failure, “Why can’t I just do this? Why can’t I just take a deep breath and be able to go and get my kids from school without having a panic attack?”
So those were things that were foreign to me that I, that you need to get your head around and again, you know anxiety is a symptom that many people having had a brain injury are all of a sudden, exposed to. If you don’t know where it comes from and how best to manage it, it is very scary.
[0:14:50.5] BP: Yeah, it really is especially when, like you said, it’s something you’ve done so many times. Like, “Why now can I not do this?” or “Why is my body freaking out?” depending on your type of panic attack as I do. I have experienced mild panic attacks to severe. I have to sit down or walk away because my whole body is shaking and they can be very different but it is always kind of like in your brain.
In the back of your head, you’re like, “Why is this an issue?” or “Why can’t I control how I’m feeling?” and all that can be really tough and tools to kind of work with your brain injury and move forward I think are really majorant to learn, especially the mental health aspect but we are going to take a quick break, after that we’ll get to that.
[0:15:37.2] VT: Cool.
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[INTERVIEW CONTINUED]
[0:16:53.5] BP: Welcome back to The Post Concussion Podcast with myself, Bella Paige, and today’s guest, Veronique Theberge. So what I wanted to get to next was kind of moving forward with your brain injury and I like to say with because I don’t really think they don’t always go away in the way that we want them to, in a way that there is not symptoms. I could just go back to how I was living two years ago, five years ago, ten years ago, however long it’s been.
But I do think you can move forward in a sense of like how I have, where I am very symptom-free, I know my triggers. I live with my brain injury but I can consider myself not ill anymore. So do you have any useful tools for mental health or any aspects we’ve talked about today to really help someone hopefully feel a little better?
[0:17:43.1] VT: Yes. So often side, there is no magic wand and I guess looking after your mental health, there is nothing that is rocket science about it. You just got to start somewhere and then do it consistently, right? So one of the things that I have found very helpful when I was in a very, very dark place was always to say, “Okay, today you just need to do one percent better at something.”
So it didn’t matter what that one percent, one percent was. It could have been drinking water, I just need to drink lots of water today. It could be I need to read one page of a book, it didn’t matter what the one percent was about but it was just giving me a very small and achievable target to get me going through the day and then the following day, while I had to build on that and do another one percent better.
So that is something that I found really helpful when you are at the rock bottom I suppose to start you know, getting you out slowly of that dark place so that you can start feeling better about yourself and about life and so on. So that is something that I always keep in my mind. Another thing that was really useful for me is to understand that I was not failing and cannot fail if you have no control over something.
You know, you are trying your best. So taking that word failure out of my vocabulary was a big things because I was truly thinking that I was constantly failing at everything I was attempting regardless of what it was. So it was just reframing. Well, do I have control over this today? No, you don’t. What can you do? What can you control and how can you move forward with what you’ve got basically?
So another thing that I used to do a lot is always compare my new self with the old self and come a point in time, I really realized that that was more detrimental to me in order to move forward. So yes, there are frustration, there are still frustration in what I can do now compared to what I’d used to be able to do but you know yesterday there’s stuff I could do that I could do now.
So you know like just build on what, again, you can control and what you can do in the present moment. So I guess a good way to be reminded of that is just the whole mindfulness tools that are available and there is a wide range of tools when you think of mindfulness, you know? Whether it’s breathing, whether it’s grounding, meditation, yoga, there’s lots to pick from and you just got to try them.
You got to see what works best for you. When I was in social settings, I used to get really, really anxious and once the anxiety would take over, all my symptoms would resurface and it would drain my brain battery in a matter of seconds once the anxiety got into the mix. So acknowledging that anxiety was present and then how can I just get on top of my anxiety, something that worked really well and still works well for me that I do is, okay, look around you and be present and look at five things you can see around you.
You know, it could be five things that have the colour red, five noise you can hear, just those type of grounding technique has been so helpful. The trick and the hard part is to remember all the tools that you have when those moments do happen because when you get caught up in anxiety or depression, it’s so easy to forget all those tools that you actually, you know, the other, you’ve used them before they work but you tend to forget about them.
So again, the whole mindfulness helps you not push the panic button and think about, “Okay, what can I do now? Okay, I’ve got these tools, how can I use them? Which one might be the most appropriate in XYZ setting?” and work on that. So those are some of my tools I suppose that my go-to. Another thing that was really important for me is making whatever I was going to do to work on my mental health, head to be sustainable.
So you know, a way to make things sustainable is to make gradual changes and have realistic expectations. So my end goal might be to climb Mt. Everest but before I climb Mt. Everest, I got to do all those little mountains first. So it is a little bit the same I suppose, so sustainable changes and then again, that is something you can gradually build on and that links back to the one percent better every day.
[0:22:20.9] BP: Yeah, I really like that. That consistency is so important and don’t get mad at yourself if you miss a day because that is part of it too and I really like your comment on not feeling, I don’t think anyone said that on the podcast yet. That’s crazy because we’re on episode number 90. So I really love it, the idea that you are not failing because you don’t have control over so many things anymore.
It takes time to learn how to control those things and what triggers them and how to prevent them from controlling your life but it is really important to realize that you can just take it one day at a time, you are not failing and that’s okay and the not comparing yourself to your pre-ill injured self is very difficult. I know a lot of people really struggle with it. For myself, I like to compare myself to my injured self instead because I have made progress.
So now, I could do that. For example, you mentioned reading. I can read a book now but if you went back a few years, I couldn’t read a book or I went to my first outdoor concert this year, without needing headphones during the entire concert to hear it muffled and those types of things. So I could walk into a crowded people and not feel like I needed to leave because the risk of my head getting hit by somebody was always so high and so nerve-wracking.
So sometimes comparing yourself to your ill self can be helpful. You see like small changes even if it’s like, “I did this.” There was something a little while ago with friends and I was like, “My memory, look at that” or even just I used to, you know when they send you a code on your phone to get into your email or something?
[0:24:11.1] VT: Yeah.
[0:24:11.3] BP: You can’t copy and paste it because it is not on the same device? So you have to enter one number at a time?
[0:24:17.9] VT: Yeah.
[0:24:19.3] BP: Well, even if it was six numbers, I used to have to go back for each number. I’d be like, “One, four, okay four, five, okay five, okay seven, okay seven… wait, what number was it? Okay, eight, eight.” Go to the computer, “What number? Oh, eight, okay, got it” like I used to have to go back and forth through every single number.
[0:24:38.5] VT: Yeah, same.
[0:24:40.0] BP: It was so much, where now I’m like, “Okay, one, two, six, five. I got it, one, two, six, five, okay. Okay, I could do it” and then I enter it and I’m like, “Look at that” that is something. Like it’s so small but it was so significant to realize that my memory is actually existent now in the short term and for small things like that, I was so excited and so it is really important to realize little things like that.
It is hard because all of these mindful techniques are so important like the breathing one is huge for me but remembering to use them as you said is very difficult. So something that I actually used to do was keep a list in my phone in my notes and it was just like ideas. It was like breathing or count one-two-three or whatever exercises you love that work for you because then if I was panicking or out in public, I could just grab my phone and be like, “Okay, okay, okay, okay, which one? What can we do? What can we do? What can we do?”
Because sometimes, when you are trying to just come up with it on the spot, until it’s a habit, it’s really hard to just naturally start breathing in and out in a slow counted rhythm went out in public.
[0:25:50.8] VT: Yeah and that’s the thing, the more you put it into practice, the more it becomes second nature but you got to start somewhere, right? You got to, yeah, and reading lots about it I think. Yeah, to me like you know, even though it’s phrased differently, it is the same thing, same gratitude for example but everyone will approach gratitude slightly differently and the more you read about it, the more you remind yourself of what it is about and the benefits of it and the easier I think it becomes to be inclined to use them when appropriate as well. So reading, repetition.
[0:26:24.6] BP: Yeah, it’s so important and that’s how you actually don’t have to think. It just naturally happens and then what I love is that when you do get good at those types of things, everything will last for less time and going back to your one percent better, it goes back to you have a panic attack for one percent less of a time and then it goes less time and less time and you can just control it and get to the point where you get those emotions but you can actually calm them down before it even becomes a full-fledge anxiety or panic attack.
So that’s not overnight, that might take months, that might take a few years to get but you can get there and I know you can but you have shared some great tools and insights on brain injury, sort of life and after that. So is there anything else that you would like to add before ending today’s episode?
[0:27:15.0] VT: I guess to look after yourself and just remind yourself that things do change in time and if something is not quite working, change it up. Change it up and keep exploring because the most improvement that I’ve noticed is in my last year. So from year four to five is where I was fed up with being told by the doctors that there is nothing else that could be done. I was inquiring about different ways of healing and they weren’t giving much credit to those ways I suppose.
I came to a point where I was like, “Well, what have I got to lose, you know?” So keep trying different things and you might be surprised, you know, the impact. It might be just taking you out, getting you out of a plateau or it can lead to a significant change and for me, a lot of those small incremental changes that I have applied throughout the last year and a bit have led to significant change.
I’ve gone back home this year after the whole COVID, so I live in New Zealand, right? But I am originally from Quebec City, Canada and not seeing my parents and family in three years. So the last time they saw me, the Veronique they saw was very, very different from the Veronique they got to see this time around and many people and friends that had seen me, they just could not believe it. “What have you done?”
Well, there is a lot of things that I changed on, I worked on and that I implemented. So never give up, don’t leave a stone unturned. You know, even if people tell you, “Oh well” or try to dissuade you from looking into different things, it is your life. It is your health. It is your quality of life and a lot of the time, you’ve got nothing to lose. So give things a go and have realistic timelines and goals as well.
[0:28:56.9] BP: I love that and I love the change it up because it is so important because what works for you isn’t going to work for the next person. So you have to just keep trying to find what clicks.
[0:29:08.5] VT: Yes.
[0:29:09.2] BP: And sometimes you try something and it helps you for a bit and then it stops, so try something else.
[0:29:13.8] VT: Yeah.
[0:29:14.4] BP: Because hopefully, trying all those things will improve you in any way and so thank you so much for joining us today and sharing some of your useful advice.
[0:29:25] VT: Oh my pleasure, anytime. Thank you very much for having me. It’s been a pleasure.
END OF INTERVIEW]
[0:29:33.3] BP: Need more than just this podcast? Be sure to check out our website, postconcussioninc.com, to see how we can help you in your post-concussion life. From a support network to one-on-one coaching, I believe life can get better because I’ve lived through it. Make sure you take it one day at a time.
[END]
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