Robbie Frawley 0:25
Welcome to Stories of Recovery. My name is Robbie Frawley and on this podcast I interview people who have experienced and recovered from brain related conditions such as stroke, concussion, chronic pain and traumatic brain injury. We'll discuss their story and highlight the things which have been most beneficial and most important in their recovery. This might be specific treatments or medical professionals that were most crucial. It could be books, knowledge or advice which they were given or which they found along the way, or even particular habits, attitudes, or practices that helped them the most. If you or someone you care about is struggling to recover from one of these or another brain related condition, the podcast was really made with you in mind, I want you to know that others have been where you are now and that they have gotten better. You can recover and hopefully in the interviews that follow, you will hear a thing or two which resonate and which help you to do just that.
So who am I? Well, I'm a young man who grew up in country Victoria, Australia and I've had a number of concussions growing up playing sport. After the last one, which was over seven years ago, now, I developed something called post concussion syndrome. I'd never even heard of this but it left me with ongoing fatigue, headaches, nausea, vertigo, cognitive fog, overwhelm, and sensitivity to impact. It had a really dramatic effect on my life and it took many years, much effort and great assistance from others to fully recover from it. And now that I am back to 100%, and again, have some surplus energy, I'd like to help you in any way I can to get you back to good health. My hope is that we can provide some light at the end of the tunnel for you and also give you some useful tips and tricks that might help you along the way. Now, one thing to remember is that the brain is a really marvellous thing....and you CAN get better. I've left in as much of the context, detail and information in these interviews as possible, which means they can be quite long. But they're split into key chapters to make it easier to listen and to help you to focus on what you need to hear right now and remember that you can pause and come back to the story in as many small bites as you need. Now, without further ado, let's jump into it. In this episode, I'm speaking with Trevor Barker, a former electrician and now support coordinator from north eastern Victoria, who following a minor workplace injury, developed and lived with debilitating chronic lower back pain for over 20 years. His eventual recovery came swiftly through education and he now works with some of the world's leading pain scientists and educators to share his story and encourage others to learn more and to make meaningful change in their own lives. Trevor has appeared on SBS's Insight programme, as well as contributing to various podcasts, radio and print media, and continues to share and champion recovery from persistent pain. This conversation took place in May 2021, at his home in Katamatite on the lands of the Bangerang and Yorta Yorta people of north eastern Victoria. I'd like to pay my respects to their Elders, past and present, and Aboriginal Elders of other communities who may be listening to this conversation. I wish you courage and energy on your own journey forward and I hope you enjoy this wide ranging conversation. Cheers.
Here we are Trevor. Thank you very much for having me. It's wonderful to be here speaking with you after quite a while now. We met just over 12 months ago in Geelong after you'd just given a pretty powerful speech about your experience living with and recovering from chronic pain. That had a real impact on me and whilst this podcast was still really just a thought in my mind at that point, I knew that your story was something that I wanted to delve into in more detail and that it was also something that needed to be shared more widely. So thank you very much for agreeing to speak with me and for having me here in your beautiful home. So to kick off, if you could describe to me what your life looked like before the initial injury. Paint me a picture of you know, what did that look like day to day?
Trevor Barker 5:27
Yeah, so I left school at about 15 and did an electrical apprenticeship. I was working in that trade. I had friends and I loved playing tennis, and playing the flute and other things. So I had a pretty pretty full life at that stage. And my first injury was while I was working as an electrical apprentice, and I was carrying a long extension letter, and from one location to another, and while I was halfway through that, carrying the letter, the top of it hit a beam on the roof. And I had to bend back to get a pastor boom stood up. And after three days, I started to experience quite a bit of pain. Now my response to that was to be quiet, not saying a thing. So I took some sick leave, went and saw the doctor who go miss and paracetamol and some anti inflammatories, and went and saw a physio back to work in a couple of weeks. And that was my first experience of low back pain. And really had an x ray, that stage an x ray showed a bulging disc really wasn't quite sure what that that means. But you know, it was, I don't know, 19. And all this, just wanting to get back to work. So I've got back to work, finished my apprenticeship and got married. And then I had two or three other jobs, and had a family had my first daughter. And then life started to get quite challenging for me. I started in my late 20s, I started to remember being abused as a child. And that put me in a, in a really difficult place of having to deal with a lot of psychological distress. And it was then I really got out of being employed, I had to stop work to deal with this stuff. And retrain and and got into attendant care work working with people with disabilities and acquired brain injury. And it was at that stage in my early 30s That I injured my back for the secon d time,
Robbie Frawley 8:16
Had you had pain...so the initial one was when you were like 18yo - 19yo. Had you had issues with your back in the intermediate period?
Trevor Barker 8:22
Yeah lingering through my 20's.
Robbie Frawley 8:25
But nothing that you were sort of concerned about?
Trevor Barker 8:27
No not not especially, you know, probably taking painkillers and adapting my lifestyle in a sense of not lifting as much or moving as much, just slowly starting to modify things at that stage and then in my early 30s, I had this incident where I had a client that was we're out in the community, and it was the day the Orrangatang got out at the Melbourne Zoo, and I happened to be at the Melbourne Zoo. And we were... my client was in a wheelchair and he was quite a large man. We we got herded into the back of the butterfly enclosure and to cut a long story short, we ended up having to leave the Zoo and go back to the hospital where he was living. The taxi that was transporting us broke down and I needed to transfer him out of the car into his wheelchair. And we're in Northcote and for people who know Northcote, it's got lots of blue stone cobblestone gutters. So the wheelchair was, you know, in a precarious position just jammed between the taxi and the gutter and my client who had just had enough at that stage gave up on the transfer and started to fall forwards. And as he did that, I grabbed him and pulled him back to regain the balance and pull him into the chair. I felt something go pang in my back. And at that stage, few days later, I was in a serious world of pain. Back to the doctor, X rays, anti inflammatories, Paracetemol, and referrals to the physio. And I've never really recovered from that injury. I had a third injury, when I went back... I ended up going back to work about four or five months later. There was a lot of pressure at the time around return to work and the fact that people with back injuries are much better off at work. And I went back to work probably 95% fit in order to try to regain my life. The very first shift that I had going back to work, client fell, bent down to pick him up and that was the end of me really. So we're out in the community and as people who do care work in the community understand, you don't have lifting hoists in the middle of a park. You've got to do everything yourself. So at that stage, I had started to try other treatments. I'd been trying physiotherapy, Myotherapy, Chinese massage therapy, deep tissue therapy and almost anyone that had therapy in their nameplate, I'd been there and tried it. And I wasn't getting any any relief at all.
Robbie Frawley 12:02
And were you still working now or were you off?
Trevor Barker 12:04
Yeah I was still working. I had a period of probably six months at that time where I stopped working as an attendant carer. I couldn't see myself doing that work so I retrained and probably had two years of retraining and looking for work as a social welfare officer or a family support worker, where I was still able to work with people but not do the hands on care and lifting work that was required. So I ended up in 1995 moving my family, by now we had my first daughter, my son, who was about four months old at that stage, we left Melbourne and went to Yarrawonga and moved house and I started working as a social welfare officer at Yarrawonga. I did that for 11 years. And during that time I had full time work and I was also in quite a bit of pain. So I would be sitting on one of those big exercise balls most of the time. Did a bit of moving at work and if I ever went on a conference or training I'd be lying down in the training room. I'd bring a hot water bottle with me and a pillow and I'd lie down.
Robbie Frawley 13:37
And just to be clear on timeframes... 18-19 (years old) was (when you had) the initial injury. Early 30's you'd had your second injury...
Trevor Barker 13:45
Yep and my third injury and then I re-trained and then moved to Yarrawonga.
Robbie Frawley 13:52
So by this point you are how old?
Trevor Barker 13:54
Ah well, I would have been 35
Robbie Frawley 13:57
Okay. Yeah, thanks. So you're still managing to work but you've just got some management strategies that you are utilising to survive?
Trevor Barker 14:04
Yeah I was getting weekly treatment from physiotherapy and massage therapy. I was nice... I'd added to my regime of treatment, I was lying down a lot with hot water bottles.
Robbie Frawley 14:21
Painkillers?
Trevor Barker 14:21
Painkillers yeah. Mainly paracetamol at this stage. Just all the time. Yeah, all the time. I had also been prescribed Valium, so dabbled in using Valium. Couldn't really work and use that at the same time and did a lot of lying down with hot water bottles and restricting my movement and restricting, doing anything that would exacerbate my pain. So I started to have a more sedentary life style at that stage. I worked through from 1995 until 2013. In that timeframe I was slowly reducing hours, I was having more time off work and towards the end of 2013 I was really in a lot of pain and by then unable to work.
Robbie Frawley 15:37
...and that's a long period...so nearly 20 years you're working and managing it, and you were now in your early 50s at that point?
Trevor Barker 15:43
Yeah and what was happening in my life at that stage was I was working for a Medicare Local, and I was having...I was based... my office was based in a medical super clinic. So I had daily access to doctors. And at that stage I was really trying to delve into why the heck am I still in pain? What else can be done, to wipe this pain out and give me a life. What the doctors were doing, was then adding Tramadol and opioids to the to the mix treatment mix.
Robbie Frawley 16:28
That's a stronger painkiller?
Trevor Barker 16:30
Stronger painkillers with an opioid base. And I was seeing a rheumatologist, I was having nerve pain, taking medication for that. So I was on about six pills at that stage and really seriously reducing my hours to almost nothing... to the point that in 2013, I lost my job at the Medicare Local. I was having a lot of stress in my life. It was quite a stressful time going through the breakdown in my relationship. I'd been married for 30 years at that stage. I ended up long story short, divorcing my first wife, and getting away from what was an incredibly stressful home environment. So walking alongside that increasing stress was an increasing reliance on medication and treatment and trying to find out what was wrong? And what could fix what was wrong. What was the source of my pain? And what are we going to do about it? And that really is a medical focus. Right through those 20 or so years, there was no real effort made to understand what else was going on in my life apart from what was wrong with my tissues, 'issues with tissues' were being explored with CT scans, blood tests, MRI scans, referrals to neurologists, and orthopaedic surgeons.
Robbie Frawley 18:30
And was that throwing anything up? Like was that giving any...
Trevor Barker 18:33
It gave me some diagnosis...
Robbie Frawley 18:37
I imagine how you see that now is different, but at the time, was it helpful?
Trevor Barker 18:44
Well at the time it was reinforcing...as I look back on that time, it was reinforcing the approach of let's find out what's wrong with you and let's see what we can do to fix it. Do you need some surgery? Do you need a new medication to attack that problem and deal with it, rather than what else is going on and understanding all of the stress that was in my life and helping me to get some help with that
Robbie Frawley 19:17
and pain in the context of your life rather than just...
Trevor Barker 19:20
So I was being looked at and viewed... and looking at and viewing myself as a person with something going wrong...that was causing pain... (this) determined a certain response. And so I was getting specialists to do lots of different investigations...and all they were doing wass ruling out what wasn't wrong rather than discovering what was not working. So that was how life was for me leading up to really examining for myself 'What is going on?'
Robbie Frawley 20:08
And just before you do move on.
Trevor Barker 20:10
Yeah, sure,
Robbie Frawley 20:13
You're not painting a very enjoyable picture there. What would you have rated your quality of life at that point?
Trevor Barker 20:22
Oh my quality of life was, it couldn't have got any worse really, I mean there was no enjoyment. There was no employment. There was a lot of distress, serious, serious distress,
Robbie Frawley 20:40
and you've lost your relationship?
Trevor Barker 20:42
Well, yeah, and I was working through, I that was trying to have a more effective marriage and went to four different marriage counsellors and some really good people
Robbie Frawley 20:52
So you're putting in the work.
Trevor Barker 20:53
I threw everything I could at it and it was a situation that was not going to be resolved. So I ended up walking away from the marriage, and seeing myself as a single person in pain. And it was so bad when you talk about quality of life, that I didn't have a job, I'd taken as much medication as possible without being comatose all the time. I tried steroid injections in my back, I'd had a series of three of those over 18 months. And the last one I couldn't get off the table. My legs just went like..., it felt like it was playdough. It was all rubbery and numb and the team that were doing that procedure were quite worried about what had happened and that adverse response. And so to sort of sum up, how bad it was... I was starting to develop a plan to sell up and go into a retirement village with a nursing home attached. So that I had this one bedroom unit with no garden to speak of, somewhere to basically lie down and 24/7 and watch TV. That's how I saw myself managing my pain...
Robbie Frawley 22:39
at 55?
Trevor Barker 22:41
Yeah, about 53 at that stage I was looking at that. I actually had gone to make inquiries about how to go through that process, only to discover that you needed to be 55, to qualify for that type of arrangement. So that gave me a two year window where I then started to question what else I could do, because I'd thrown everything possible medically at this problem, and I was in more pain, and in more distress than I'd ever been. I couldn't throw any more. I couldn't take any more medication without really seriously risking my life. I was having falls. And that's not a good career move for someone. I've got some bone conditions that are quite fragile. So I really had to take a serious look at, well, what am I going to do here? If I can't take more medication and what am I gonna do to have a life and have one where I can work and be different? Yeah. So that's, that's really that point in my life where I started to question what else can I do?