William (TBI): Chapter 3 - Returning home & key learnings

Episode 1:  Chapter 3 - William Cole - Recovery from a farm motorcycle accident which resulted in a Traumatic Brain Injury (TBI) - Returning home. William's main recovery learnings.

In this third chapter of the episode, William has just been discharged from hospital and has arrived home. In this chapter we explore what has been most beneficial in his recovery.

Transcript and show notes are available for each episode on the podcast website: storiesofrecovery.buzzsprout.com

Shownotes:

• 00:35 - William describes shearing a sheep after arriving back home. For those who are unfamiliar with this term you can get a good description here. William explains that this highlighted for him some areas which needed more focus in his rehabilitation,
• 04:04 - Playing video games can help (see here), as it did for William. (Note: During the 48 hour period immediately following an injury this is not the case. During this period - absolute physical and mental rest is strongly encouraged by medical professionals),
• ^05:00 - Don't compare yourself to before the accident/injury/event. Instead consider...what 'might' be possible. What 'might' I be able to do? (in a positive sense),
• ^08:15 - Set small challenges and build up, and REWARD YOURSELF,
• ^08:41 - 'Back yourself', in a mature but positive way,
• 11:39 - William thanks the TAC (Traffic Accident Commission) who have provided great financial and emotional support, encouragement and advice during his recovery,
• ^13:08 - William discusses the enormous value in developing a good relationship with a neuropsychologist, and working through the challenges of living with and recovering from a neurological condition such as a traumatic brain injury together. This was William's 'knight in shining armour' and my own key takeaway from this interview,
• 19:10 - Helpful quote: "Your body is the best instrument you'll ever own and your mind is the best map, so nurture them" - William's quote inspired by Baz Lurhman's song 'Wear sunscreen',
• ^20:11 - Exercise, do things that you enjoy, be in places that make you feel good,
• 20:52 - Helpful quote: "Love many, trust a few, but always paddle your own canoe",
• 21:32 - Helpful quote: "As soon as you wake up, try to make someone smile",
• ^21:51 - Book/Movie recommendations: Something that you are excited about. For William this was Lord of the Rings and Harry Potter (with subtitles) in rehabilitation,
• ^23:11 - Book/Movie recommendations: TED talks on brain injury survivors.

^William's main tips

Transcript

Robbie - Introduction: 0:10

Welcome to Chapter Three. In this chapter William shares his main recovery learnings.

Robbie - Host: 0:31

So after the three months, did you come straight back here then?

William Cole - Guest: 0:35

Yeah, I came straight back here and it was this time...2018. No 2017, 2 years ago. Yeah, so we were shearing at home and I came straight back home and stupidly enough, I, uh, when the shearers were on their hourly break, I jumped on one of the hand pieces and shore a sheep. And that was my rehab. I remember my dad walked in and he said, oh, is this your resting? Is it? And I was like, ah... I've just got that mindset that I cannot sit still. Like I have to be doing something. So I thought it was a good, easy challenge. It was only a lamb. So it was a good, easy challenge to go up and try to shear.

Robbie - Host: 1:17

How did you go?

William Cole - Guest: 1:17

Yeah I got it shorn. It was a bit slow... but it was quite nice to be, you know... that feeling of being in hospital all the time and sitting down and having to follow orders from the doctor and your neuropsych, and get fed at this time and could only eat puree food because my jaw was wired shut. But then to be at home and I was like shearing shape, you know it was like nice freedom.

Robbie - Host: 1:42

It was just a normalcy?

William Cole - Guest: 1:42

Yeah. And even though it was a bit of work, but you know I didn't really think of the work. Like it was nice to have that freedom again and to be doing something and yeah, it was nice to come back home. I told my neuropsychologist this because she did ask how have I found it, transitioning back to home. And a lot of people... I understand from the research that they do, with brain injuries. Don't... Well they find it completely different when they come back to home a) because they might have a bit more of a severe injury and not be as independent, you know, requiring carers and stuff and then b) but a lot of other people who found themselves to get bored a lot and stuff like that. But for me, I just loved to get back home and I feel like I can go back to my old self in a way with my meaning because I was taking a walk and, um, there was an old fencing line that I'd been working on and it was all up and there was all the wires, but we were tying some of the droppers on and the droppers were like part of...like we drilled through and put the wire through. So they were just hanging there, but I hadn't got finished off tying the top and the bottom dropper...

Robbie - Host: 3:00

So it's like you finished this task?

William Cole - Guest: 3:00

Yeah, there was a bit of wire hanging there and it was sort of just a trip down memory lane. But funnily enough I was like, oh yeah, I thought, oh yeah, that's what I was doing, you know? Oh, you better get back into it and keep going. And yeah, it was just a four, five month holiday from finishing off(tying off) those droppers...

Robbie - Host: 3:21

'Holiday,' being...a very positive term! So then....we're two years on now... where do you think you were, if you rated yourself, percentage-wise when you initially returned back to the farm? What would you have... how would you have rated yourself?

William Cole - Guest: 3:39

When I initially returned, I was probably like 50-55%, pretty slow. My head was still very swollen. I'd sleep a lot of the day. I'd sleep probably about 14 hour days. Um, I'd get up and not do much...

Robbie - Host: 4:03

And be very tired?

William Cole - Guest: 4:04

Yeah. And just, yeah, just feel low. Well, my brother was a legend and bought a PS4(playstation 4- gaming console) and I just, you know, took the ride. Cause I was back from hospital and played a lot of PS4, which is quite all right.

Robbie - Host: 4:18

Would you we recommend that to people?

William Cole - Guest: 4:20

For the right amount of time, but don't, um, don't go becoming like a crazy gamer. Like it's good at times, when you just need to sort of chill out and rest. So I did that a bit, but then also I was going....I guess I'm very lucky in terms of being a farmer and having a supportive family, as obviously home is my workplace. Dad and my brother were working on the farm and if I wanted to get involved, sure, no worries. But they could easily cater things around me and I could cater myself around the farm so yeah. I wanted to get out there, but yeah, I could only go out for about an hour and I found my focus and motivation was a bit lacking. Like the motivation lacking because I knew I was running on you know, a quarter of a tank, half a tank, and I wanted to be able to do it, but I just knew that I had to, had to wait.

Robbie - Host: 5:19

Were those the big things? So fatigue... I imagine you still had some sort of cognitive fog and then low mood? Was that something that was an issue?

William Cole - Guest: 5:29

Well, not really... In terms of...I guess the trip was of comparing yourself then(like at the time of/after the accident) to who you used to be.

Robbie - Host: 5:46

Sure.

William Cole - Guest: 5:46

And sort of when you went back into that environment that you're used to and familiar with, you know what you're capable of, but you can't do it. So you started being angry at yourself compared to who you were sort of thing, because you don't want to be that unproductive person, but you have to just learn to accept that well...that's me and you're still here. So just listen to yourself, like listen to your body and take it easy and yeah rest when you need a rest.

Robbie - Host: 6:17

Let's explore that because that's something that you mentioned on the phone to me, and you credited with being quite a turning point... I think you said at the time that you kind of had this realisation in yourself and then things became a lot easier and you talked about this acceptance. Are you able to explain that a bit more?

William Cole - Guest: 6:36

Yeah, absolutely. Um, when I met my treaters, like making it a friendship rather than the worker, or the carer and patient relationship. Just having a mentality to see the positive side rather than... because I didn't want to view them as my doctor or something. I wanted to view them as someone who was here to help and, you know, look out for you and stuff like that. So I always sort of thought in those ways, but yeah, like out in the paddock, when I was realising that I was getting quite lowly motivated, I started thinking about that like about who I used to be and just took a step back and realised... was able to understand that I was getting upset because I was comparing of that. So the only way to move forward, because I didn't want to keep getting upset, was just to be able to accept that and to be able to accept that that was me at that time, but that me's still there, like, you know, because I'm still here, but I may just have to work on some things to be able to get back to that.

Robbie - Host: 7:55

As opposed to sort of being hard on yourself and not being able to do them straight away, do you mean or?

William Cole - Guest: 8:00

Yeah. And then getting sidetracked and then, you know, just thinking up in your head that, you know, your self worth is a bit lower than... You know, not getting too hung up on all those thoughts, stuff going up, up in your head. And it started, it made me like set myself challenges, you know, let's try and go out to work for like an hour and a half, then two hours and make slow increments, but really reward yourself, you know?

Robbie - Host: 8:27

What did a reward look like for you?

William Cole - Guest: 8:27

Just, just self-love I suppose, like being like"good on you mate", like pat yourself on the back and"you did that" and just reinforce positivity within your own head.

Robbie - Host: 8:41

Yep.

William Cole - Guest: 8:41

And yeah, it really helped. I remember going back for my driver's license and this was just another mentality that I took with this new doctor that I had. With my old doctors, she was from the St. John of God, this new doctor, but all my old doctors were at the Epworth who I'd spent a lot of time with. I was, you know, quite chummy with them and I always had a smile on my face and talked about something else before we had to chat about the injury stuff. But this lady who worked at the St John of God, like she was great doctor, but she was just a classic doctor. Um, and this is few months out of hospital. I was going back for my driver's license and she was just being the classic doom and gloom"here's going to be so many distractions. You're not going to function like you used to...you know, you have to steer and you have to read all the signs coming on and there's oncoming traffic and there's white lines. There's a lot for your brain to take in". I just remember thinking in my head, I was like, ah, can you just please(stop)? Yeah. I know how to...I know what the driving atmosphere is like. Yes I understand you're doing all the doctor crap, but damn I want to prove you wrong so bad. And just being able to say that to myself. I was like'I back myself' and I have to keep backing myself in a mature, but positive way, I suppose. Just the goal was from comparing myself a t 50% was to really drive up to 100%, but be able to pick up the 1%'s and really work with the people I needed to work with to understand it, or think about it in a, you know, outside the box way or listen to other survivors.

Robbie - Host: 10:22

Sure. And where do you kind of rate yourself now, do you think?

William Cole - Guest: 10:28

Um, probably I'd say, well, quite high up there. I'd probably say around 85 to 90%.

Robbie - Host: 10:37

Yep. So you've still got some things you're kind of working towards?

William Cole - Guest: 10:39

Yeah, yeah, absolutely. A few things with my neuropsychologist, a few things in fitness because I dropped... well in that nine day coma I lost about 17-18 kilos.

Robbie - Host: 10:53

Wow.

William Cole - Guest: 10:54

Which is a mammoth amount of weight. And I still haven't returned to that weight, which I'd like to. I guess I lost fitness, but like health and fitness... I'd say they were about worth 2% if I got them back up. I'd say it's more, it's more of the brain stuff that I want to really work with and really understand. Because in the end of the day, you know, I want my brain to be working for as long as I am, and I really want it to be working well, especially with a brain injury.

Robbie - Host: 11:27

Totally. So what does your work look like at the moment in terms of improving that? Like, are you still working with the Epworth or with different hospitals or you just doing stuff yourself?

William Cole - Guest: 11:39

Yeah so I'm doing stuff myself now. But, well a massive shout out to the TAC(Traffic Accident Commission) because I go on their system and I've got a care support coordinator and I can just get in contact with them and I sourced a neuropsychologist myself. I got in contact with them myself and built the relationship beforehand before contacting the C...TAC, not the CFA. And the TAC happily fund it and just sort of keep tabs just to poke along. But I've finished from them having to always ring me up and be like,"Hey, how are you?","Rate this out of 10" and"How do you feel?" and dah, dah, dah. And I'm working with...I do a few things with the Epworth and the Royal Melbourne in terms of just like questionnaires for their research programs. And I had the Victorian Trauma State Registry call up and had to do a few questionnaires with them. And yeah with the Epworth, a few questionnaires with them, but also I have to go into them. I went in last year and I'm going to go in again this year. And then again in five years, 10 years, 20 years, yeah and meet with my treaters and they throw some questions at me and yeah just a general checkup really because they want to observe what's going on through the years past with the brain injury.

Robbie - Host: 13:08

So I'll just touch on the neuropsych. You've mentioned neuropsych's a few times in this conversation and I imagine everyone who kind of has different injuries, um, physical or otherwise, you know, there's probably particular people that they bond within their sort of treatment team, but talking to you previously it sounded like you had this fantastic relationship with your original neuropsych at the Epworth and then it sounds like neuropsychologists have been an incredibly sort of valuable tool in your kit of recovery.

William Cole - Guest: 13:45

Absolutely. Like a builder with a hammer.

Robbie - Host: 13:48

Yeah. Is that something you're able to talk about and I guess, talk about what it is they've been able to do to help?

William Cole - Guest: 13:58

Absolutely. Yeah I really struck gold with my neuropsychologist. She was an amazing lady, a heart of gold who was just selfless and would help...She helped so many people and she just had an amazing life and story to tell. I just remember meeting her for the first time and she was always just one of those people that stuck in your head, like you always sort of wanted to be around them or you know, have them in the room, so you can go up and chat to them or something because they were just always full of energy and yeah, so much happiness and love and friendship and everything in them and you felt that often. But she did, or we did a power of work together and we went through all the initial brain function tests and things that we had to do and paperwork and stuff like that. But we became really good friends and she sort of was, I guess a psychologist, but she was also explaining about how the brain has changed through all this because of the shock that you've had. I got really close to her because she was really easy to open up with and tell(things). I would say, oh, I'm finding this hard or this hard and she'd really break it down and spend the time. She'd go home and look up something for two hours specifically to try and help you with that problem, so she could come up with an answer.

Robbie - Host: 15:34

Can you give an example of something that you were at some point having a problem with(and which she was able to help)?

William Cole - Guest: 15:40

With comparing myself to my previous self and she broke that down in terms of how you will feel anger... I cannot remember her exact response cause this was about eighteen months ago now...but she was pretty much saying that it can be quite a natural thing for a lot of people to do. And that was from her understanding. She helped me make myself believe that I wanted to put things in place to not be able to do that, just through listening to my words, but she'd sort of re-jitter them and then say that back to me and prove to me that I'd already said it in myself. And then she'd go on about that for a bit. And then just sort of cement it in your head. Like really, if you had the idea she'd really give you the artillery to help you really get it out there.

Robbie - Host: 16:38

Yep

William Cole - Guest: 16:39

And those thoughts and that natural...she knew that I really wanted to obviously get better, but also I wanted to really understand it. And she took a really good grip on that with the research that I could see that she'd do firsthand and the notes she'd take. And, you know, there was a lot of scribbles on there that must've been garbage for her, but I'm sure it was all great stuff. But yeah, she did an amazing amount of work for a lot of people as well. So I was very, very, um, very grateful to have her. I guess she was my Knight in shining armor of the whole...my whole rehab team.

Robbie - Host: 17:27

And then... I know she's, I'm sorry to sort of talk about this, but I know she's passed away now and otherwise you'd still have her very much in your corner. But then it's interesting I suppose to me that you've then sought out another neuropsychologist that you're continuing to work with. So obviously there's something about that profession?

William Cole - Guest: 17:45

Absolutely.

Robbie - Host: 17:45

And particular people in that profession who have a really positive impact, especially with traumatic brain injuries. What do you think...what is that for you? What do you think it is that they provide that helps?

William Cole - Guest: 18:02

I guess they'd be the best ones to understand, and the best professionals to address the understanding of people's issues, I suppose. I just thought it was amazing because they were, they felt like, you know, they were like a big brother that had been there...but they hadn't been there. They just understood everything like...

Robbie - Host: 18:30

They understand how the brain works?

William Cole - Guest: 18:30

Yeah, absolutely, and it was just really fascinating. I just sort of got fixated on, you know... I never thought a brain injury would affect me, but when it happened I was quite fascinated to examine it I suppose. And well they just knew a lot. And just the way, because I had about three different neuropsychologists, but how all of them would just address themselves and be so calm and be patient and...they're a wonderful profession. It's a wonderful profession and there definitely needs to be more of them because they're just really, really good people.

Robbie - Host: 19:10

Do you have any particular, um, mantras or quotes? You know they may have come from people such as your neuropsych that have been particularly helpful during your recovery?

William Cole - Guest: 19:26

Well I've got one quote that stays in my head a lot. I've made half of it and copied half of it from Baz Luhrman. He's got this song"everybody wear sunscreen", which is this classic seven minutes of him just talking. I've written it down... well his his quote is"your body is the best instrument you'll ever own". I love that because it truly is like, if you look after it, you can play a lot of tunes or you know, you can do a lot of things. Yeah, so"Your body is your best instrument and your mind is the best map". So I yeah..."Your body is the best instrument you'll ever own and your mind is the best map, so nurture it".

Robbie - Host: 20:11

Yep.

William Cole - Guest: 20:11

And so they're two very important things in one's life. So being mindful of your mind and being respectful to your body is what really matters to me, I suppose, like to know your limitations in what you can do physically, but what you can do to get enjoyment and happiness such as going for a run and having that...exercise so your natural endorphins can kick in, but then also looking after yourself mentally....being in places that you want to be in, watching the movie that you want to watch and stuff like that. As long as you're not offending or hurting anyone else just keep beating in your own stride.

Robbie - Host: 20:51

Yep.

William Cole - Guest: 20:52

And there's another saying which is a classic saying, which I heard in the shearing shed once and it's...

Robbie - Host: 20:59

Haha, all wisdom comes from the shearing shed!

William Cole - Guest: 20:59

Yeah! Of all places...but it's"Love many, trust a few, but always paddle your own canoe".

Robbie - Host: 21:10

That's good.

William Cole - Guest: 21:10

Yeah. It's a good one. It just rhymes off it. I just heard it. It was just one of those things. I think he(the shearer) was on the phone or something. This older shearer, just sitting down there on, smoko and he was... Well all the shearers, unless they're chatting to each other they sort of crawl into their own chill out world. Well, he was just on the phone and I just heard that...and just never got it out of my head. I suppose another mantra I had/have is when I wake up and as soon as you, as soon as you wake up, try and make someone smile and you know, some stuff like that, it's focused on the good things and fun things in life.

Robbie - Host: 21:51

Do you have any books or movies or podcasts that were...you'd really recommend to people? If someone had just experienced what you'd experienced, is there anything you'd gift them?

William Cole - Guest: 22:09

If I knew a book that they...something that they've always been wanting to do, like...if they were a builder, but they wanted to become a vet,(I'd get them) a book about veterinary science or something, just for an example. Just something that they can have their excitement on it, but then the information is there. So it is up to them to be able to get it from there(the book), into there,(their head). Something that they're really motivated or keen on but in a book format or a documentary format. Like with movies, I was obsessed with Harry Potter and Lord of the Rings. That was just fun to watch.

Robbie - Host: 22:56

Before or after the accident?

William Cole - Guest: 22:56

Oh no after the accident. Yeah. Like just cool effects and just, you know, the storyline and everything's just something different and fun to follow. I did watch a lot of Ted talks, and a few...just in my own merit just went on YouTube and would'search brain injury survivors'and stuff like that, and listened to a few talks of people talking about their experience. They were pretty much sort of doing what I'm doing now, talking about the differences and the shift and from them to now.

Robbie - Host: 23:42

And were they helpful to you?

William Cole - Guest: 23:44

Yeah, absolutely. Yeah. It was reassuring to know that you're not alone you know? There're other people out there. Because a big thing that really affects people is the isolation of brain injury.

Robbie - Host: 23:57

Totally.

William Cole - Guest: 23:57

Yeah and again, that motivation...for some people it's just motivation to get out of their bedroom can be quite a hard task. And yeah again, that's why we need more neuropsychologists because they can really break and work those things through with those people. They just really need to know that there are helpful hands out there.

Robbie - Host: 24:17

Totally.

Robbie - Outro: 24:28

That's the end of Chapter Three. In the final chapter William talks about new habits and perspectives.