Episode 38: A Personal Perspective from a TBI Blogger - Michelle Munt

[MUSIC] Thank you for joining Mind Your Brain. The mission of this podcast is to improve the quality of life for those affected by brain injury. The Mind Your Brain Foundation is devoted to providing help and hope during a brain injury survivors' road to recovery. Today's episode is a survivor's story from England, outside of London. Enjoy this warm and transparent discussion with Michelle. So my name is Candace Gantt. I am a traumatic brain injury survivor and founder of the Mind Your Brain at Penn Medicine conferences, and the executive director of the Mind Your Brain Nonprofit Foundation. I am also proud to be on the board of the Brain Injury Association of Pennsylvania. Michelle was in a car accident in December of 2014, which caused a diffuse, axonal brain injury, which wasn't diagnosed properly for over a year. She left her career in recruiting and training as a result of her injury, and had very limited rehabilitation offered to her. Michelle then started a blog, as she knew almost nothing about brain injury before it happened, and occurred to her that there must be thousands of other people just like her, who didn't understand what it was reasonable to expect of a brain injury survivor. Her mom died at the end of the same month she had her accident, and within three months her dad was diagnosed with Alzheimer's. He lived two and a half miles an hour's away. Oh my goodness, two and a half hours away from Michelle, and did her best to support him as his legal guardian, even going through the pain of putting him into a nursing home when he wanted to stay at home. Oh, that's heartbreaking. And then he passed away three years ago. So Michelle has experience of being both a survivor and a caregiver. So Michelle, I want to first, I feel like we have so much to talk about, but first please accept my condolences for the loss of both your parents during your struggle to recovery. Thank you. Your story is heartbreaking and filled with triumph. So welcome to the Mind Your Brain podcast. Thank you. Thank you for having me. It's a pleasure. And we're loving your accent. So we're going to have you talk a lot so everybody can hear it. Okay. So could we start with your accident and then we'll move right into why you believe your brain injury was not diagnosed right away. So tell us what happened. Sure. So my accent was a car accent, which happened on what we call a jaw carriageway, which basically is like a small highway, it's like just two lanes, literally just on my way to work. So there's a road that I knew very well. And it must have been that there was, it comes up to around about, I know, not all states have roundabouts, but there are these strange things that we drive around. And it seems that there was a lot of stationery traffic up here because of the roundabout. And I was hit from behind by a small truck. It happened because a buzzard, which is, I don't know if you have moved there, but a small bird of prey, swooped down, must have seen something that it thought was good for its breakfast. And it hit his windscreen, smashed his windscreen. And he couldn't see, I'd started breaking for the traffic ahead, plowed straight into the back of me. And my car kind of spun a little bit. I think it hit the central reservation or the crash barrier. It was only a little smart car that I was driving. So one of those really tiny short little cars. And, but if you see the actual damage to the car, yes, you can see it's clearly been rear-ended, but it actually doesn't look that bad. If I drove past that car, I would have thought, okay, they've probably got whiplash, but otherwise they're probably okay. So I was actually airlifted to the Royal London Hospital, which is a trauma centre, that's what they specialize in. And the initial notes that the EMTs wrote on site showed that they thought I had a brain injury. One of my favourite lines from it is that I had a very inappropriate stare and was drooling, which sounds absolutely delicious. And that's why they were thorac. Yes, it's an example for. So that's what made them think it was probably a brain injury. And I was in hospital for 10 days. They knew there was a bleed at the base of my brain, but it did stop by itself, so they didn't have to perform any surgery or anything. And yeah, it was running up towards Christmas, so they sent me home after 10 days. They didn't bother to really give me any advice. At this stage, they hadn't even told me there was a bleed at the base of my brain. That they didn't tell me that until three months later. Oh my word. So they did a fantastic job at dealing with me as someone who they needed to stabilise in the moment. And for that, I'm extremely thankful. But what they weren't so great at is what's going to happen to this person going forward. There was literally nothing, nothing joined up. Any help I did get was only because my partner James fought so hard and asked for referrals. Otherwise, they were just basically going to ignore me. And did you have deficits? Did you recognise that you had a brain injury or your partner? Did I recognise? Yes, and you know you're having trouble, like something's not right here. So it was weird because I managed to make excuses and come up with reasons for everything. So things like my phone and my handbag were with the police. So my partner got me a different phone. I normally have my phone. He got me just a cheap little smartphone so that I could contact him throughout the day. Now in my mind, it was just because I like to use an iPhone that I couldn't cope with the cell phone. He still has some of the texts I tried to send. I didn't even manage to put forward. So it really wasn't anything to do this phone. It was just the fact that I couldn't do it. So it was things like that that I managed to, I managed to convince myself I was fine. There's one thing that you do have to do when they do think there's a brain injury or they make you do hear anyway. And they, because here in the UK, it's going to sound so quiet too, with so known for drinking tea, right? And literally we do it with, it's just second nature to us. You don't think about how to make cup of tea you just do. So that's one of the things they make you do because it includes things like hot water and, you know, there's some hazards and things involved with actually how you do it. They make you make tea. First of all, I couldn't even turn the kettle on. And, and then when I did make the tea, I was making the tea for me, my partner and this woman who was assessing me. And she asked for black tea. Well, here in the UK, we have tea with milk, right? It's just, it's an absolute given. So of course, I made tea with milk for everybody. As you asked me if I thought I'd got it right. And I said, um, no, I do know now that you asked for black tea, but that's not my file. It's your fault because nobody asked for black tea. Why would I make black tea? And we always want to prove that we don't have a deficit. You know, what I'm saying? Yeah, trying to cover our tracks and tell people, okay. Exactly. That's exactly what I was doing. It's a dialogue. Yeah. Yeah. And I believed it. I fully believed that I was, I was, I was, K, but it wasn't until you start to recover enough to get some insight that then you start recognizing actually things aren't right. Yes. Yeah. It takes it takes some time. Yeah. And lots of mistakes. Yes. Have that self-actualization that something's not right. Yes. And so how did it go? When did you finally recognise the needed help? How did you get that? - So one of the things that my partner thought really hard for was speech therapy because I, yes, I could talk, but I could only squeak at you. It was exceptionally high pitched. And part of that might have been because they anticipated me and it might have cause some inflammation and bruising, but also it could have been because I was traumatised and that makes you hold onto all these muscles and the muscles in my throat was so incredibly tight, so I needed speech therapy to be able to talk properly without squeaking, also effective my swallowing and my eating, so because he thought so hard for me to get that, it was actually through the speech therapist, she recommended that I contact a charity here called Headway, who specialise in brain injury and they then introduced me to some local support group they have here and their occupational therapist started doing some brain training with me. They have a programme that they use called Cogmed, I don't know, you guys see very much in there, but so it does lots of different things with you in terms of like your critical thinking, your maths, your attention, all those kinds of things. And then it tracks it for you so you can see your progression, which for me was really important because you spend so much time thinking these are things I can't do or these are things I'm not good at anymore, actually to be able to see you have made some improvement is really important because I would otherwise be thinking, oh no, I still did that really badly, but then this little graph would come up and show me actually how much I'd move forward. And then you'd say, oh, okay, so my efforts are doing something that's carry on practicing. Whereas I think if I hadn't seen that, I would just go, what's the point I give up? - I think people get discouraged when they don't see the progress and then they use effort, they're not interested. - Exactly, and I think that for me that was really important was being able to track it because if it's just your own observations and of course our memory isn't great often as well. So you don't necessarily remember that the last time you did it, you'd go on a better score or whatever. So unless you're having a way to track it, you might not realize how well you're doing, you know? So that was what was important for me, I think. - And did you also experience what you were talking about, the challenges you had? Did you also have emotional regulation and those type of? - Oh, hugely, hugely. I remember one time when I was visiting my dad and I, you know, I can't even remember what he was talking about, but he must have been asking me to help him with something, which of course is what the point of me being there. But for some reason I just snapped all of a sudden and I said to him, please shut up and walk away, otherwise I'm going to hurt you. And what was frightening was I meant it, but that's not me. I'm not that person, but he, you know, blessed me completely got his show in, so okay, fine, and walked wet and left me to it. And I had to eventually come back and go, I'm really sorry, I have no idea what that was. - I did too. - Yeah, you go through everything from, you know, you're crying to your gang angry. You know, I could be laughing one minute and I'd be crying the next, utterly crazy. - Yes, great. And oftentimes people think I'm losing my mind. I'm going crazy, I can't control any of the main, anything around me. - Yeah, everything is like so intense. And then I started using antitipressants and that's weird because everything goes so flat. So you go from everything's so over the top to you don't even enjoy things you would have enjoyed before because it's literally just trying to calm you down and it takes so long for it all to then balance back out for you to then kind of experience anything in a normal way. That makes sense. - Absolutely. And so how long did this go on without any help, without any therapy, without a diagnosis? - So I didn't get a diagnosis until about, it was just over a year later. And that only came about because of going through litigation that my lawyers sent me to a private practice 'cause of course here in the UK we do everything through our NHS which is our government month medical and through the private practice they had a more detailed MRI scanner which I think they called a T4 which was able to see more detail. And the biggest problem with my type of brain injury the diffuse external brain injury, it's not so much about the structures of the brain being damaged, it's about the connections. And diffuse external happens a lot in rotational forces. So whereas my card did a bit of a spin that is a massive rotational force on your brain. And so it breaks, it diffuses external so it breaks a lot of them all over the brain. So that's why it becomes a severe brain injury and it means that kind of everything is affected to some extent, you know, whereas some people might have a temporal lobe that's severely damaged and it's all concentrated on that. The diffuse external is a little bit more difficult to recognise because you're not doing everything in an area really badly, you're doing badly a little bit in everything. - Yes. - So unless they know you before, or they've seen an image of your brain before, they don't know what's different for you. So even when I started going to the support group, the occupational therapists kept saying to all, when you meet everyone else, 'cause, you know, their injuries are worse than yours. And I kept saying to you, you don't know who I am. You don't know, you're meeting me today and saying today you look quite competent, but you don't know who I was before. And I found that so incredibly frustrating even someone who worked with brain injury patients for saying this to me, right? - Yes. - Yeah. - And you know, this is awful. This is challenging for me. This is trying to make, I'm trying to dig my way out and then you'd recognise my struggles and then help me lift me up. - Exactly, exactly. So, yes, so that's how they found it was through this stronger MRI, but even then it's still a little bit of guesswork to be honest. Because we know so little about the brain, everyone's brain looks so incredibly different, that it's difficult to say what a normal brain should look like, you know? - Yeah. - So I imagine that that's probably true for a lot of survivors as well, unless you have an area that is clearly severely damaged. I think a lot of us probably don't get the diagnosis that we need or we're waiting a long time to get that diagnosis, which is a real shame because I think those first two years are really, really important. Yes, your recovery goes on pretty much forever, but those first two years are where you're going to see the fastest difference. And I think the more therapies that people can be involved in those two years, the better things are going to be for them, going forward. So the way that we're having to wait for these diagnosis and wait for the help, I do hope that medical science does keep moving forward and we do continue to improve. I mean, clearly things are, they're good. I don't want to dis anybody, and don't snare. us is do a fantastic job. And of course, they're not magicians and we're all human, but I do hope that they do continue to make progress with this. I think the diagnosis piece of it as you're describing, that's critical. That's so important that it is identified, your challenges are identified early on. So you can get right to the forward motion. And I know that some strategies cover a lot of deficits, but unless you are specific about the one or two or three areas and get right to the meat of it, I think that's what's important with the diagnosis. Let's instead of that broad umbrella, let's talk about specifics about this. My aphasia, I can't find my words or my emotional regulation or it could be vocational rehabilitation. I can't, my memory is poor. So you need to focus on those specific areas instead of that broad sweeping. Let's try everything and see if one thing works. Absolutely. And I think I don't know exactly how it works in the US, but here they work a lot on trying to work out what average intelligence is. And so above average intelligence is considered if you have a university degree. I don't have a university degree, not because I couldn't go to university because at the time, I chose not to. I chose to go to work and earn money instead and never felt the need to go back. But because I didn't have a degree, whenever anyone did any scores with me, I still scored as a normal IQ, right? And the normal range is humongous. 75% of the world's population sits in what is normal. Okay. So I might have been normal on this, but because I didn't ever bother to go and get a degree, I technically should have been seeing above what they're calling average. Yes, of course. And so there were some doctors, neuro-psychologists saying that they didn't think I had a brain injury because I sat in the normal range. So you're trying to convince them that you're not normal, which is really that's kind of counterintuitive. And it's awful because you sound like you're being arrogant, which isn't very British for us to have to shout for ourselves and go, "Whoo, check me out." For me, you don't understand. I'm actually quite clever. He's like, "Yes, fine. You're coming out normal. It's fine. Don't worry. I know you don't understand. I'm cleverer than this." I know. I remember when I left in, I was inpatient rehabilitation, and they released me. I said, "You have executive function." And I thought, "Oh, of course I do. That's so exciting." But what they didn't realize is I couldn't tie my shoes. Right. And then you realized that I'm not. I haven't recovered. Yes. This is the best thing that you can do. Yes. Yes. So yeah, absolutely. I think some of the, it's, I understand it's exceptionally difficult when you haven't met someone before. You don't know what their life looked like before. What the behavior was normal for them before. How do you measure what is the difference? So it is exceptionally difficult. However, they do need to listen a little bit better to what we're saying. Indeed. Indeed. And so, Michelle, tell me that you've been many years since your accident and you've had so many struggles. How did you come out the other end? Well, I know that you're a blogger now, and you can tell us a little bit about that. And then your involvement, I know you've been on podcasts. Tell us about your involvement with the brain injury community in the UK. So, because I had to, or I chose to leave my career quite early on, because I couldn't, my employer was a quite small company. There was more hairdressing academy and I kind of did the recruitment side for them. Because I couldn't give them a clear indication as to when I thought I could come back. As in, I tried to return to work, and it took me a half a day to write a two sentence email, because I could barely read or write. So, because I couldn't give them any directions as to how long it was going to take, at this point I thought, maybe I had a concussion, if there's even before I'd been told I'd had a bleed on the brain, that nothing else. So then I decided because my absence is having such an impact on them and my colleagues, I chose to resign. But it occurred to me that part of that happened because no one I knew, none of us knew what this was. Didn't really understand what brain injury was. My experience of what all my thoughts of a brain injury was, you know, it'll be that person has some kind of physical disability, maybe they can't talk at all. You might be able to see it on their face, maybe half their faces, you know, and someone has a stroke, half their face hangs. I thought it was that, or I thought the other thing where you see it on TV all the time, someone's been in the coma for ages and they wake up and then suddenly they're fine. They might have an easier but how it happened to them, but that's it. That's basically it. I always understand it to be. Yeah. So that was all I thought brain injury was and that's all everybody I knew thought it was. So there I was, this walking, talking, slightly confused person, but otherwise, okay. How do you ever tell anyone what to expect? And so that's what frightened me. I thought there were so many car accidents that happen every day. I know brain injuries happen in all kinds of ways, but even if you just focus on that and go, okay, whether there's millions of cars on the road, thousands of accidents happen every day and not all of them are horrendous. Some of them look not too bad, like mine didn't look too bad. How many people are coming away from this thinking, okay, I've got wood plash, but I'll be back to work on Monday, right? Exactly. And in employees, we check ourselves. We say, I don't look bad. Right. We do that self-evaluation and I look pretty good and I'm still talking. Yeah. And we don't know what's time, employees. Our employees quite often don't know any better than us and they're waiting for us to give them some indication of what to do. So that's why I thought someone needs to start talking about this a little bit more. And that was where my blog came from and I tried to write it in a way that it wasn't just open diary, you know, of my day to day looks like this because I thought how many people are really going to want to know what I'm doing in my life? Not that many really. What people are going to find more useful is to know about certain symptoms, certain conditions, what things are helping me. So I've tried to write it in a way that each post is focused on a particular subject around the brain injury. So whether it's a phasier, whether it's swallowing problems, you know, all the different things that you can go through the emotional vulnerability, there's articles that are focused on those rather than saying today I had a mental meltdown. I might use examples of things that maybe think about writing this post, but I've tried to do it in a way that's more useful for people. And yeah, and then the feedback you get from people, oh my goodness, it's like you're talking about my life. Brilliant, that's exactly what it is. How many lives? Yeah. Yeah, by telling your story and it's driving and being honest about it and transparent. And I think what's really lovely is when people say to me, you know, because it's not easy to describe and I'm really fortunate that I got enough of my language skills back to be able to describe some of these things. But then they will ask maybe a family member or someone that doesn't seem to understand to read something so then they can look, this girl's explained it, read this. This isn't just me having a funny moment and over exaggerating something. Someone else is experiencing this, read this, this is how it is. And then they go that it really helps because it helps them understand that because sometimes we do, sometimes we do as soon when someone says something there being a drama queen or something or over exaggerating, you know, so I think to read it from a third party it does help people connect better and get okay, you know, I do, I do see that now it's there not just being a little bit OTT with it, you know, and I think that when they find somebody that they can relate to and they're like that person, it helps them embrace, oh that is me, that's my experience and so it allows them to be and I'm okay, you're okay kind of relationship is that I'm in control, I'm not losing my mind, there's somebody else who experiences this and so you have a synergy with other people, I think that's comforting. Yeah, absolutely, I think it is such a feeling so ashamed of it because I think we don't know whether it's just a Western culture thing but we're very much kind of, you know, we've got to be the best we can be, we've all got to be achievers and we've all got to drive forward and be motivated, you know, all of this but then the moment that everything's been slapped down by you've had this horrendous injury, your life's been turned upside down and and you know nine out of ten of us go through depression as well and then you think, oh am I just feeling sorry for myself, right? And finally we'll kind of wait to blame yourself, but then I think then when someone else goes, no, I'm doing this is why and I'm struggling with these is well, it stops you from having to constantly feel the shame all the time that we put on ourselves. And having the pity party. Yeah, yes, yes, I think that that helps you realize that you're not alone. Yes, other people are suffering as well, but you see the recovery, you see that there's hope and I think that's what our talking about it, hopefully will provide our listeners today is that that we have recovered in our own ways and it's good about it that we're giving back to the community and we care about them when we're a voice. I think that makes us stronger as a yeah and I think I think also there's something really powerful about knowing that your experience whilst it's an negative one can do something positive. So when my dad first really started to come to terms with the fact that he was struggling with his Alzheimer's, at least I was able to say to him, do you know what, I understand what you're going through because a lot of the things that he was struggling with, I was as well at the same time. So whilst it was a pitiful situation of one hand, it meant that he could be more honest with me because again as we've said before, we tend to try to hide things, right? And I think especially in that kind of situation where it's your dad, you know, he's used to being the man, he's the, you know, he's the man of the house, whatever to tell your daughter and him, his youngest daughter, by the way, that, you know, you're struggling with things is really difficult. I mean, it's difficult for anybody, but I think for a dad to his youngest daughter, that's really difficult. But so then I think then being able to know that that person can relate to it means that you can open up a little bit more and be a little bit more honest about, yeah, I've found this difficult today. Oh, I can't remember X, Y, Z, you know? Yes. And I think you're right, being honest with yourself. And so that you don't try to pretend it's not happening anymore, but to face it and saying, yes, I do have this challenge. And I need to get some help. And I think admitting it to yourself makes a, makes it powerful. Yes. Yes. And then once you find help, you know, and then you think, oh, brilliant. And then you can start engaging with things and then you start feeling like you're, you're taking back control again because you're doing something proactive. You are making a difference to yourself. So, whereas before this awful thing happened to you, it was outside of your control, you're taking back some of that control by being able to find what things are going to help. So, I think the whole thing of speaking up is so important because if people don't know what we're struggling with, they don't know how to help us. Right. Right. Well, well said. So, Michelle, I could just talk to you on and on. It's really great because I feel like we have a sisterhood now because I understand exactly all the challenges. And you have a, just a remarkable story of resilience and your upbeat and positive. I hear it in your voice and your words. So, thank you very much for sharing about your trials and your triumphs. It was really an enjoyable conversation. I thank you for taking the time with us. Thank you so much for having me. And to our listeners, I tell them, please subscribe to our podcast and share it with others. There are millions. That's what Michelle and I said earlier, millions that are still struggling that you could help by providing her blog, our link to the podcast and send it to everybody on your email list. So, you can be a part of Mind Your Brain and Join us by lifting up other survivors. And it's important too if you have, if you have a willing heart to do it to make donations to produce this podcast, to continue to reach the community that you're not invisible to us. We really, our mission is to lift you up and if need be, carry on our backs and tell you that we care about you and we can be on this journey together to recover. So go to our website and check us out at mindyourbrainfoundation.org. And I want to tell you again, thank you for joining us. Here's my virtual hug. You are not invisible to us.