[00:00:00] Brooke Trotter:
Hiya and welcome to Brain Injury Bites, where we provide help and advice for people after a brain injury. My name's Brooke and I've lived with a traumatic brain injury since 2007.
[00:00:12] Ashwini Kamath:
Hi, I'm Ashwani and I'm a Trustee at Headway Warrington. I'm also a Senior Associate Solicitor focusing on catastrophic injury, including brain injury.
Thank you for returning to listen to part two of this interview.
[00:00:26] Suzanne Guest:
And I think it is still a real shame that most people who don't work in brain injury don't really know what a brain injury looks like. Though, there is the statistic that every 90 seconds somebody is admitted to hospital with a brain injury.
[00:00:43] Brooke Trotter:
Is that worldwide?
[00:00:44] Suzanne Guest:
In the UK.
[00:00:45] Ashwini Kamath:
[00:00:46] Suzanne Guest:
Yeah. So that could be concussions and this, but you know, there is a lot of people out there who've got brain injuries to varying degrees and I think we still don't really know as a society what that looks like.
[00:01:00] Ashwini Kamath:
I suppose though as well and we've discussed this previously that you see a brain injury, you see a brain injury and everyone presents differently. So there's that element. It's the hidden disability element. And, you know, it's not as obvious, you know, as opposed to somebody who say is missing a limb, but it's a, it… the impact is huge, absolutely.
[00:01:19] Suzanne Guest:
Yeah. I mean, the number of people who I've met with brain injuries who’ve said it would have been easier to lose a limb because people would have understood that. Or, you know, if I was in a wheelchair, people would understand that. People can't see how exhausted I am.
[00:01:33] Brooke Trotter:
There's also, you don't understand it as well.
[00:01:35] Ashwini Kamath:
[00:01:36] Brooke Trotter:
You're trying to explain something that you don't fully understand yourself.
[00:01:39] Ashwini Kamath:
The amount of times I've dealt with family members or other people associated to clients where it's like, well, you know, but they're out of hospital, they're better. Why aren't they better now? And it's kind of trying to explain that it doesn't work that way. It's a brain injury. It affects the brain permanently.
[00:01:56] Suzanne Guest:
There's a really interesting video with Richard Hammond and Sterling Moss, and Sterling Moss also had a brain injury from racing. And Richard Hammond was talking about, he was saying, I look back and I thought I was okay then, but I realised there was still problems, but I'm okay now. And then six months later, he would look back and say, oh, do you know, I thought it was okay then. But, and that kind of…
[00:02:22] Brooke Trotter:
I can really relate to that. Someone bought me… that's a similar time as Richard Hammond had his injury in 2006 and then mine was in 2007 and I think he’d got the book out when I was in hospital or very soon after, and somebody bought me it to read in hospital.
I remember trying to read it, like, I had double vision and I was reading it through one eye. And, um, you know, you read five lines, you forget what you've just read and stuff. It was, um, I think I got through it, but yeah, I don't remember any of it.
[00:02:54] Ashwini Kamath:
We'll see if we can find a link for that video that you mentioned. If we can find it, we can certainly put it on the footnotes. Because I think that would be quite interesting to see, especially as you say, if it's sort of every six months, how that insight changes, but yeah, actually things are still not, um…
[00:03:09] Brooke Trotter:
You don't see yourself every day though, do you? I mean, sorry, you do see yourself every day, so you don't…
[00:03:14] Ashwini Kamath:
But you don't see the progress.
[00:03:16] Suzanne Guest:
Yeah. Because I think Richard Hammond was initially saying everything's the same. Is it, I like celery now or I don't like celery, there's something about celery and that was his only issue. But obviously, you know, he very publicly went on his journey, you know, which I think sometimes we don't give celebrities the confidentiality they need around their injuries.
[00:03:38] Ashwini Kamath:
No, I mean, I suppose it's double edged sword in a way in the sense that, yeah, he should be allowed to have that privacy, but then if he's chosen to and actually, it can sometimes help to put that spotlight on for the reason that we were saying before that people don't understand brain injuries. So having somebody in the celebrity sphere who says, actually I've had a brain injury and this is how it's affecting me, might then help other people to go, oh yeah, okay, I understand that, you know, you might find it harder to do this or to remember that.
[00:04:08] Suzanne Guest:
Yeah, I've got a lot of respect for the celebrities that do sort of share their difficulties. I suspect maybe earlier on we should be a little bit more protective is my thoughts.
[00:04:17] Ashwini Kamath:
Yeah, but I suppose he made that decision, so...
[00:04:22] Suzanne Guest:
But had he got capacity?
[00:04:23] Ashwini Kamath:
Well, oh, oh, let's not get into that minefield!
Another thing that I wanted us to cover it, and I think this has been covered with you, Brooke, I think in season one about, you know, the importance of pacing yourself and not trying to run before you can walk.
[00:04:40] Brooke Trotter:
Which I still mess up on.
[00:04:42] Ashwini Kamath:
I think, yeah, and it's natural as human beings, I think, that we want to, we want to get somewhere, you know. But I think particularly following a brain injury and, you know, someone… I see it time and time again with clients where they just want to get back to work and more often not that is a primary driver, I just want to get back to work as if you can just walk into work tomorrow and pick up, you know, from where you left off, log in and get on with it. And, you'll know that that's not necessarily the case. And I'm sure when you hear that, there's probably a bit of a wry smile going on, going, okay, let's see.
But just talk to us about how you manage your clients and employers through that in terms of the pacing, the phased return element of it.
[00:05:25] Suzanne Guest:
Yeah. So I would do a phased return to work, which would be… I'm more of a fan of little and often rather than trying to do longer days. Some companies already have phased return to work plans, but they're the same, whether you've broken your leg or had a severe brain injury. So somebody who's been off work a long time would need a much slower return to work, but that's not just looking at hours. I think sometimes we look at, oh, well, you do this number of hours and you increase to this number of hours.
There's also looking at the tasks that are involved. So it could be that you're working with supervision. It could be that there's certain tasks you know you can do really well and others are a bit of a challenge. So we have to increase the tasks as well as the the hours. Sometimes there'll be people who can work a lot of hours, but actually they're only doing half the job because they're not doing, doing the full job.
So it's important to get that graded return in terms of A, hours, but B, the tasks and potentially C, the amount of supervision and support that goes along with that.
[00:06:34] Ashwini Kamath:
Do you meet resistance from employees when you said that your preference is little and often, but you might have employees with set plans? Do you meet resistance? Because presumably it does also take a lot for employers in the sense that, you know, that at the end of the day, they're missing somebody's service, their employment, and I imagine there'll be extra resource involved in terms of having a buddy, a mentor, a supervisor working with that person to phase them back in, so it's additional resource on the employers side. Do you find that employers can be resistant or are they helpful in that regard?
[00:07:06] Suzanne Guest:
There's a mixed bag. I've never done any proper research on this, but my gut reaction often is that the people who were really well liked before they had their brain injury are the ones who get support when they go, they go back.
So I have had ones where the employees have been a little bit resistant maybe, and then one of them say, you know, he wasn't particularly well liked before he had the injury, so when somebody's coming back before they, you know, coming back maybe with social problems and a bit disinhibited as well, um, there is resistance to that.
But you know, some employers have been absolutely amazing. And I've had ones that they've already kind of thought about how they can do it and made their plans and really want to support that person. And again, I think it does go back to what I was saying earlier around, they did get that phone call out of the blue to say their colleague was in intensive care and they're shocked by that and they do want to help.
[00:08:01] Brooke Trotter:
It comes down to individuals, doesn't it? What's that boss like as a person, is he caring, is he willing to put the effort in to understand, or is he just, you know, want the person back.
[00:08:10] Ashwini Kamath:
Yeah. I mean, I suppose at the end of the day, it's humans, isn't it? But you're right. And it's interesting what you're saying there about, you know, I appreciate it's not official research, but I suppose there is that human inclination to help those that we like, that's one of us or whatever and question whether that's actually fair, but you know, human behaviour is what it is.
Can you sort of think of any particular success stories that resonate for you and with all the clients that you've worked with over the years?
[00:08:41] Suzanne Guest:
There have been, people who, you know, gone back to the original job. So the guy who ran the London Marathon, he ended up going back part time, but actually worked really closely with his employers, found a job within, a slightly modified job. It worked for him, it worked for his family. And, you know, he contacts me every now and then and just sort of lets me know. I discharged him years ago, but, you know, sort of keeps up to date with how things are going.
There was a man that I worked with a long time ago who got him, it was a new job and he's still in that role. And every now and then there is little hiccups and it's usually around work changing and sometimes I go back and offer a little bit of support, but he's been able to maintain that role.
[00:09:32] Ashwini Kamath:
That's good. And I suppose success doesn't have to be defined by going back to the same job, does it? It can be, as you, as we started off by saying at the beginning of the discussion about finding something meaningful.
[00:09:45] Suzanne Guest:
Yeah, I do also think sometimes the sort of the sadder part of my job is supporting somebody to leave a situation with dignity.
So, you know, sometimes it isn't working and I do think that is really important to support that person potentially to make a decision to leave and to support through that decision. And it's something that I hate doing and I normally go home and cry a bit, but it is one of those situations that again, we often paint the employer as being the bad guy and often in those situations, they're gutted too. So we would normally have some sort of final meeting that they have to have for their legal situation, but, you know, they've wanted it to work as well. Sometimes somebody is too injured and it just, it isn't the right environment for them, but I think there is sometimes trying to give that person the feeling that they've had some choice and some control over leaving the work.
So on paper that might not feel like a good outcome, but if somebody has been able to leave a situation in a way that's a bit more dignified, I think that is still a success because it cuts ties and allows them to then move forward. And that could be looking for different work or it could be filling time with hobbies and voluntary work or other things like that, that are positive for that person.
[00:11:08] Ashwini Kamath:
And I guess the benefit of your input there as well is that that exit wouldn't come as a shock, it would be very much a managed process again with potentially the input of other therapists in the mix to help support that person with those decisions. But, um, yeah, as you say, if it's the right outcome overall, then it's not a failure, it's just, it's a different direction.
[00:11:32] Suzanne Guest:
Yeah, I think this is one of the things that we often look at the cognitive side around brain injury but we sometimes miss out on the social issues that potentially, and I think people, employers are actually really happy to support around diaries, but if somebody is quite disinhibited, that can be really quite problematic within a workplace.
So one of the things that I often use if I'm doing any sort of training with people is a clip from the film Imitation Game. And I think this is how you know that your life is just got really, really sad, when you sit in the cinema and you're watching a film, and you think that's going to be great for training.
And it's a bit in, in fact, it is on YouTube, so you'll be able to link it in the description, but there is a bit where Alan Turing, who, you know, amazing guy who helped develop the Enigma machine, but was, you know, socially quite awkward. And one of his colleagues says, ‘Oh, we're going for lunch’, and he carries on working and they say, ‘Alan, we're going for lunch’. He carries on working and they say, ‘Alan, do you want any lunch?’ And he's then this conversation just descends where he's saying, ‘Oh, what you're having for lunch?’ ‘Oh, I don't like sandwiches.’ And it's this whole conversation that they're just almost having two different conversations. And he said, ‘Look, you know, we've just asked you three times, do you want to come for lunch?’ And Alan Turing says, ‘No, you didn't. You said, I'm going for lunch.’
And it's that one of those things of just understanding that somebody with a brain injury might find those little subtle bits of conversation really challenging.
In my first job, I used to work in a brain injury rehab unit and Howard Jackson, who was my boss, used to say, say what you mean, mean what you say, and that is those silly little things of saying, I'm going for lunch rather than do you want to come for lunch is really important. And that's often where difficulties occur at work rather than just being the pure cognitive problems, which, you know, is around cognitive inflexibility, isn't it? That somebody wouldn't understand those things.
[00:13:46] Ashwini Kamath:
Yeah. And I think, yeah, it's interesting because I think the English language is full of examples, not that I can come up with another one to mind but we've got so many examples of things where you say one thing, but it has a completely different social meaning and by and large, people understand that. But when you take somebody who is now thinking in a very black and white, rigid way. I totally see that and that can then cause friction between people – unintentionally so. But, um, yeah, it becomes harder to manage and potentially I wonder whether that could then lead to isolation within the workplace as well.
[00:14:26] Suzanne Guest:
Yeah. So I think that, you know, you can see people will say, ‘Oh, we don't want to say things to him, he'll take it the wrong way.’
I always think the word fine is one of those things. Because fine can mean, yeah, fine. Or it can be fine. They mean very different things. You know, the second one, things aren't fine, but yeah, so those are, I think often the bigger problems and the cognitive problems that happen within, workplaces.
And it is just about getting somebody who, um, I worked with a woman, she was volunteering in a cafe and it was around… we called it ‘sandwichgate’, but there was issues because she'd learned how to make a sandwich and when you're working in a professional environment, they have their, they want their sandwiches to be consistent. So they were, the way they made sandwiches was quite, was slightly different to how she made a sandwich. And that created a big row because nobody'd actually talked to her about, okay, that's your sandwich and that's fine. But in this workplace, this is how we, you make our sandwiches and she felt like she was being attacked and they felt like she was being awkward and… so it can often be the tiniest of things, but if somebody doesn't understand that that person thinks in a really black and white way then, you know, it appears to be awkward and it's actually often anything but.
[00:15:50] Ashwini Kamath:
Yeah, yeah, and again, I suppose it's the importance of brain injury communication, brain injury education, sorry, but also someone just perhaps almost objective coming in and just taking that overarching view of, What's the process here? What's the missing link? Where is it falling down?
And it can be as simple as that sort of tiny chunk of communication that's missing. That's, yeah, it's very interesting and it makes you think how many situations could have been handled differently, how outcomes could have been very different if actually communication was improved. So I guess you are a communication facilitator as well.
[00:16:29] Suzanne Guest:
Yes, guru, I think maybe.
[00:16:32] Ashwini Kamath:
So thinking about, um, meaningful employment, meaningful activity, and also the idea that, you know, we've talked about how if you see a brain injury, you see a brain injury and people are impacted in different ways. So I think, Brooke’s mentioned in the past that, you know, there are certain hours of the day when he's more awake or, you know, and I also see this as well with certain clients, you know, that you just wouldn't do anything with them in the afternoon or if they've had, um, you know, if they've had a particularly gruelling psychology session or whatever it is, you know, something that might've taken a cognitive toll.
And then I suppose you look at that with what somebody's work expectations are or what, um, their employment requires of them. I guess you'd try and work out when is somebody functioning optimally and perhaps Brooke, you can talk to us about some of your experiences.
[00:17:25] Brooke Trotter:
First of all, something that I've discovered recently is cold showers. As brutal as it is on the morning, three minutes in the cold water really really does wonders for you.
[00:17:34] Suzanne Guest:
Wow, Wim Hof!
[00:17:35] Ashwini Kamath:
[00:17:37] Brooke Trotter:
That's what I tell myself I am when I'm shivering under the cold shower!
[00:17:43] Suzanne Guest:
You're tougher than me, Brooke!
[00:17:43] Brooke Trotter:
Generally, on the morning, um is the best time and I tend to fade towards the end of the day. But, um, you know to do anything in the late afternoon is generally, you're not getting much out of me.
So it's, I guess, trying to find the best ways you can be employed because I found that sometimes I can be good and I can be quite creative, but then other times I can be terrible and really affected by my brain injury and it's finding those best times and they're not always going to be like in, to fit in a work schedule.
So I think what I did this to start with, because I was just bored at home and I wasn't doing anything was I started writing and I taught myself to type. I had this, my dad bought me ages ago. It was a Mavis Beacon Teaches Typing. And I remembered that, and I downloaded it on the computer and I did that and I taught myself to touch type. And then I started writing silly things. I'm writing blogs down and putting them online and then people started liking them, and that was what I did for the start.
But I mean like, I’d do some writing then I'd just be exhausted and you know, come back to it finish it later, you know, it's like a couple of pages of work would take me, you know, a couple of days to do. And you just think you'd constantly be comparing yourself to people in like the professional you know, professional sphere, like, you know, how easy it must be for somebody to just sit and write, you know, professional person to sit and write that down – maybe half an hour, and it's taking me two days. And that of course has an impact on your self-esteem.
Then I guess I found this idea that I wanted to do public speaking. And the first thing I did was to Headway at Scarborough and I got, I think I, well, I don't know how many people came, like 30 people came or something like that, but it was… I remember when I'd done it, it was, it just felt really good that I'd actually done something and like the, it's the first time in years I'd actually contributed something and it felt really good and that's something I'd continued to do and I found that was suiting because at home there wasn't a rigid schedule that I had to stick to a plan this. I could plan it when I wanted. And then, you know, the delivery of the talk itself was only like… Well I did used to waffle on… It used to go for an hour and a half sometimes but it was about, you know, less than an hour. And I remember just, you know, coming back from that.
And I used to do it with the emergency services in North Yorkshire at the start. And coming away from that was… it just felt, it was really good that I'd contributed something and, um, you know, I hadn't put the amount of hours in, but I just thought, you know, I've, you know, I really have contributed something.
I've spoken to kids about the potential dangers of, you know, the potential consequences of driving without due care and attention. So, um, yeah, I did feel good about that.
[00:20:36] Suzanne Guest:
Yeah. And I just think, I'm listening to you talking, thinking, well, actually public speaking is one of the biggest fears that people have, so you’ve smashed that.
[00:20:44] Brooke Trotter:
That was, that was a reason for it really. It was just like, what can I do with my life? And I had this limited energy to work with. So what can I do with it?
[00:20:52] Suzanne Guest:
Yeah. And you know, you say, I know, it was only about an hour, but actually an hour of public speaking… That's actually really, and I noticed you were going only this, only that, but actually doing really…
[00:21:03] Ashwini Kamath:
Yeah, give yourself more credit and stuff.
[00:21:04] Suzanne Guest:
Yeah, I think sometimes listen to the way you talk to yourself.
[00:21:07] Brooke Trotter:
Which is something my psychologist has continually said to me.
[00:21:11] Suzanne Guest:
Be kinder to yourself. Yeah. But I think also interestingly, when you're saying about, you know, you're better in the morning than maybe the evening, that's when it is good to look at if people are going back to work, looking at the graded return.
So for some people, if they've got a lot of pain and maybe need to take painkillers and things like that, then an afternoon start or a bit of a later start might be better. If somebody has got a lot of anxiety, then if they start in the afternoon, they just spend all their morning dreading going to work.
So there is that actually trying to look at the times.
[00:21:45] Brooke Trotter:
And that itself can be exhausting, anxiety.
[00:21:50] Suzanne Guest:
And then, you know, sometimes work isn't, or paid work isn't always the right thing for somebody. So it could be that, you know you've got skills, you know you want to make a difference, but it could be that you do something… I mean, I have to say, Brooke, you've shown amazing initiative. The fact that you started a blog is really good and, you know, I think I just want to go and do some public speaking and then go carry it out.
[00:22:12] Ashwini Kamath:
And then I'll just run a marathon or two.
[00:22:14] Suzanne Guest:
But, you know, it could be that you find an outlet for yourself, or it could be that you join an organization. So some people would join different classes. It could be that they go salsa dancing or join choirs - I know you're very into choirs, aren't you, Ashwini?
Or it could be that some people go and find groups associated with their disability, like their local Headway group. Often, or most of the Headway, I think if not all of them have survivors of brain injury on the committee, so they can help run the group.
So there is different ways of contributing that isn't just paid employment. It's volunteering, it's going, having hobbies and interests, doing different things with family.
[00:22:54] Brooke Trotter:
On that salsa dancing thing, I've been recently trying, #trying, to learn Argentinian tango. No, no, no, you see me dancing Argentinian tango and you would not say wow!
But I've been going. Obviously, my girlfriend is from Ecuador, she speaks Spanish, so I'm trying to, you know, she was, we were at the Spanish Cervantes in, um, the Spanish Institute on Deansgate in Manchester, and there was like an open day. And there was a guy there doing, um, like tango demonstrations and I've been learning Spanish, but I just found it was, I got to a point where it was, I'd had like, I'd missed four lessons. I had two lessons a week, went on holiday and missed two. And then I come back, and I had COVID so I had to have another week off. So I missed four lessons and I just really struggled to get back to the class after that.
So I made a decision to have a bit of a break, but in that time, we decided to go to tango lessons. They were at half six at night and it was just, you know, people, I suppose people without brain injury, it was, you know, they were finishing work and it was a nice thing to do on an evening. But to me, there was like, my brain was exhausted trying to learn these steps and then you're like, you come the next week and you've forgotten it all, you know, going back to what we did last week. And it was just, yeah, I really sort of struggled with it.
So I wasn't quite strictly come dancing, but the guy did actually say to me, it was, um, he'd had some experience with brain injury and he said, uh, two of the best things to do for a brain injury is to A, learn a language and B, learn... well, he said tango, but I guess it's learn dances, learning the steps or something that's keeping your brain active. But I suppose it would be better if you had the lessons in the morning. Yeah.
[00:24:46] Ashwini Kamath:
How are the Spanish lessons going, incidentally?
[00:24:47] Brooke Trotter:
It was, um, because of that, I was struggling with it so I took a break. So I'm on a bit of a cycle from it, but I'll go back to it, yeah, I was enjoying it. It was just, I just missed too much out of the lessons and then you go back and then these people have learned things that you haven't learned, and it was yeah… I'm going to go back to it because I did enjoy it.
[00:25:06] Suzanne Guest:
Yeah, and I think that does go back to little and often whereas trying to pick up something on a weekly basis is really difficult. Whereas if you do shorter periods of regular activity it helps.
[00:25:18] Brooke Trotter:
Which is why I did the two lessons a week. So I was learning Tuesdays and Thursdays and it was, I was enjoying it until I got behind.
[00:25:25] Ashwini Kamath:
But I suppose it's also finding the balance between little and often to get that habit loading, but also not cognitively overload as well because yeah, it can be, I suppose it's trial and error in some ways, isn't it? Just finding what the right balance is for somebody.
Well, thank you, Suzanne, that's been really interesting. I think both of us have, uh, really got a lot out of that discussion, and I'm sure our listeners will have done too. And of course, we will put the links to the resources that we mentioned in the footnotes to the episode.
Suzanne, if you've got your social media contact details, by all means, please do…
[00:26:00] Suzanne Guest:
So I'm on the Twitter or X as it is these days, so it is Sue's guest, which is S-U-Z-G-U-E-S-T, and I'm also on Instagram, and TikTok and YouTube as ‘Have I got Suz for you’. So at the moment, my TikTok is full of my sourdough. I've made a sourdough starter and it is my entire personality right now!
[00:26:26] Ashwini Kamath:
I love the handle though – ‘Have I got Suz for you’. I think that's genius.
[00:26:33] Suzanne Guest:
And my website is workingmind.co.uk
[00:26:37] Ashwini Kamath:
Thank you. Thank you very much again for coming in and talking to us today.
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