This podcast was created and is hosted by Paul Burns, a young survivor of stroke. This podcast series is part of Stroke Foundation’s Young Stroke Project.
Smashing it after stroke
Episode 4, 7 June 2022 (Duration: 01:07:13)
Host: Paul Burns
Gustavo Zaera is a Spanish born, multilingual, Norwegian technology entrepreneur who has dealt with many challenges including a brain tumour in 2013.
In this episode we chat about his approach to life, dealing with emotions and how his early childhood experiences forged the resilience that helped him deal not only with his diagnosis and treatment but go on to continue to succeed!
Transcript
Announcer: This podcast was created and is hosted by a young survivor of stroke. This podcast series is part of Stroke Foundation's Young Stroke Project. Find out more by visiting youngstrokeproject.org.au.
Paul: Born in Spain. Lived and raised in Norway. Spain and Norway play football. Who do you follow?
Gustavo: Spain.
Paul: Spain.
Gustavo: Just because they're the best.
Paul: Hi there. My name’s Paul Burns. I'm a young stroke survivor and I am on a mission to talk to people that have suffered strokes and other traumas and have gone on to absolutely smash it in their chosen field. We'll chat about how they approach life, manage their shortcomings and get a few tips and tricks along the way. On today's podcast, I speak with Gustavo Zaera. Gustavo is a Spanish born, Norwegian multi-linguist who has an absolute passion for technology.
He has a Masters in Computer Science, has studied at the University in California, and is currently the Chief Digital Officer of a leading company that specialises in thermal batteries. We talk about his childhood experiences when emigrating countries, how that shaped his approach in dealing with a brain tumour he suffered in 2013, as well as other adversities that life has thrown his way.
So please enjoy this chat I had with Gustavo.
Paul: Going back through your story, you've lived a life. It's kind of amazing! So, you, I mean, obviously, you're born in Spain and you emigrated to Norway in the, sort of, mid-eighties-ish. How did that come to be? Was that…how did that happen?
Gustavo: First of all, thank you so much for having me.
Paul: Oh, no worries man. No worries.
Gustavo: It's my pleasure to be here. Absolutely. Yeah, so my story with Norway started. How do I keep this short? My mum met a Norwegian man. Norwegians are famous, infamous, I don't know, to travel down to the Canary Islands for holidays. So, my stepfather and a friend of his went down to Tenerife to have a long weekend or whatever it was, and then coincided with my mum being there. And I was six at the time, and they fell head over heels in love with each other. And a year later, they got married and we moved to Norway.
Paul: Oh, wow. Okay. So, how did you find integrating into Norway from Spain? Did you...I mean, I'm not sure exactly how young you were, but was it a challenge?
Gustavo: I was seven at the time and we moved in April 1994, and it was rough. I didn't know the language. I didn't know the culture. I didn’t know anything. I was a small kid. I was seven years old and right after we arrived in Norway, my mum gets hospitalised because she has celiac disease that she's unaware of, and in Norway you eat, and the culture is very surrounded around bread. So, there's a lot of gluten in the in the food. So, she got really sick just a week or two after we arrived and got hospitalised and was in the hospital for a month. During that time, I was with my stepfather who spoke, not very well, Spanish, and obviously I was somewhere I didn't know anything about. And yeah, so it was a rough start.
Paul: I can only imagine what you must be going through. I mean, how long did it take you to get your head around the language and the culture to become acclimatised?
Gustavo: I remember the first time I was able to go to the candy store and order stuff on my own. That was kind of a milestone for me, right? I remember some situations in school where I where I understood more and more and as far as I can tell, it was about six months and I was able to manage.
Paul: Wow. Six months. So, you obviously speak English better than I do. Spanish. I'm Australian – whether we speak English or not is largely open to interpretation. So, you speak Spanish. You speak Norwegian. How many languages do you speak Gustavo?
Gustavo: I mean, fluently, three. But I'm Spanish, Norwegian and English. I also speak French at a decent level, and I studied Japanese for a year. It's been many years now, so I can't really claim that I speak it. But at one point, I was able to manage. I managed to have conversations in Indonesian as well. I wouldn't claim that I'm a genius, a language genius in any way, it's just hard work and a level of immersion.
Paul: Yeah, sure. So, did you learn English in Norway?
Gustavo: I learned English here in school, yeah. But, I was never really good at it. I can remember being on flights to Spain as a kid and, you know, sitting there and, as the stewardess or steward was approaching me, I was kind of rehearsing in my head the one sentence I was going to say to get that Sprite or Coke or peanuts or whatever it was I was going to get. And that’s back to a level of immersion. So, even though we had it in school – my generation it was from fourth grade, in primary school – and all the TV shows and everything on TV here in Norway is, you know, original language and subtitles. And that's actually something that we are very fond of, because then you get to hear the nuances in the original language. And reading is something that you learn to do really quickly anyways. So, we learn to hear other languages in Norway and of course most of the media we see is in English. But I didn't become fluent until I moved to California to study.
Paul: So that brings me up to a question I was going to ask. How does a Spanish-born, Norwegian guy end up at the University of California to study his Masters of Computer Science? How does that even happen?
Gustavo: I’ve always being fairly ambitious. You can always find your way through. If you want something, there's always a way. So, I was studying in Trondheim, in the Norwegian University of Technology at the time, and there were some internships around the globe that you could apply to as part of the studies, where we need to have 12 weeks of the relevant practice for our method. So, I applied to some five or six or seven of them, and the one that I got was in Menlo Park, in Silicon Valley, so it was great. I just jumped on that.
Paul: That's going to be like the Holy Grail for computer science students, right? Going to Silicon Valley and doing an internship in the US?
Gustavo: Absolutely.
Paul: The sheer mechanics of being able to, you know, get over there and not only study, but again, integrate, start a life, find a place to live, work out what shops to go to buy clothes. How did you navigate? Did you just go, you know what, just jump in, jump in the deep end and start swimming and see what happens? Or did was there any kind of guidance from your university or it just like, ‘Nup, just get on with it’?
Gustavo: No, I had my safety net, if you like, was the job, the internship. And I was actually taking over for the previous intern, who was also Norwegian. So, we had an overlap of a week or so. He kind of showed me the ropes and showed me a little bit around the area and so forth. But I mean, Menlo Park is not exactly a very exciting place to live, at least not for me. This was in the summer of 2000. I wanted to live in the city. From Menlo Park to San Francisco, there's about 40 miles. So, immediately I started looking around for an apartment in the city and a week later I bought a motorcycle and I just...I had this Lonely Planet guidebook, where I basically just read stuff in it and just went out on my motorcycle.
I started driving around the city and I remember stumbling across a festival one day and stumbling across interesting stores the other day. And yeah, so it's just this strong curiosity and willingness, of course, to just put myself in situations where I'm on my own entirely.
Paul: I mean, that's an amazing sort of image. It's like, not only did you give the United States a go, you get there and go, That's it. I'm going to get an apartment in the city I'm buying a motor bike. I'm cruising around California.’ I mean, that is...most people would give their eye teeth for an opportunity like that. Man, that is awesome. That's an epic story.
Gustavo: I had a great time in California. Three years I was there. Absolutely.
Paul: Living the dream.
Gustavo: Yeah. Seizing the moment is something that I'm kind of good at. Seeing an opportunity and taking and making.
Paul: Have you have you always been wired that way? Have you always been...? Or is that something you've had to cultivate?
Gustavo: No, I think I think this comes from probably a darker place. Being, you know, uprooted from my Spanish roots, dropped in Norway, basically alone. At least the feeling was very, very lonely, of course. So, how do you survive that? Well, you basically just had to observe, see a possibility and take it.
Paul: Yeah. I mean, you've always been – you've mentioned briefly, just saying – you've always been an ambitious sort of person, but it sounds like you've got a real eye for opportunity as well. That must work hand in hand, to get you to, you know, meet amazing people, see amazing places.
Gustavo: Absolutely. I'd say that one of my skills today, professionally and privately, I guess, is exactly that – that I'm that I'm able to see in a greater picture. I’m able to identify something that is within reach and grasp it and then make the most of it. I considered tattooing Carpe Diem for many years, but then it's two cheesy, so I never did.
Paul: No, I can understand that.
Gustavo: It reflects the sentiment very well.
Paul: Definitely. Did you ever...? I mean, you mentioned you learned a little bit Japanese previously. Did you ever get to Japan?
Gustavo: Yes, I've been there several times. The first time was I was there was after my Masters. I celebrated by taking my backpack and traveling the globe alone. And one of the stops was in Japan, so I was there for about a week before I went to Fiji and then to Australia, actually, the only time I’ve been to Australia.
Paul: You've been to Australia. I had no idea.
Gustavo: Yeah.
Paul: There you go. Where did you come?
Gustavo: Sydney. I was visiting a friend who was studying there. I stayed for three weeks. Yeah, I enjoyed myself a lot.
Paul: Okay. Well, there you go. I mean, I had no idea you’d ever been down here, so yeah. Wow...
Gustavo: Just, back to Japan – so, I went there for a week. Travelled around. I was a tourist alone, so it was basically me and my camera. Since I was in my early twenties, I've been fond of photography, so I've been...I have an SLR and equipment and taking thousands of pictures...photographs would be more accurate.
So, the second time I went to Japan was when one of my good friends got married. I met him in Japanese class in California. And got to know his girlfriend, a Japanese woman. And then a few years later, they got married. I had moved back to Norway at the time. So, they invited me, and I was like, ‘Japan’.
Paul: Oh, really?
Gustavo: Yeah. And at the time, I didn't have family. I was single, you know, free and no strings attached. So, it was perfect. That second time I saw Japan in a whole different way. The first time was like a tourist, you know, walk around, see the tourist sites to take the pictures, get the t shirts and carry on, right?
Paul: Yeah.
Gustavo: The second time I was kind of their guest of honour because I had travelled so far. It was the one for the wedding. So, I got to spend the entire week and a half with the family of the bride, and we travelled around, and we went to their hometown, and into their parents’ house and... Oh, it was fantastic. I saw Japan in a whole different way. And of course, there's way more to see, so I'd love to go back.
Paul: Do I remember you saying, once upon a time, that you're also a karate practitioner?
Gustavo: Yes, that’s correct.
Paul: Did you did you train while you were over there?
Gustavo: No, see, that's one of the items on my bucket list, is to go to the Okinawa Islands and stay there for maybe a month or three and just train karate.
Paul: So, do you still train in Oslo? Do you still train karate?
Gustavo: No, no. I haven't done it for, for a decade. Kids, some work... you know, the hustle and bustle of everyday life. I intend to go back. Yes.
Paul: Okay. Wow. So, that just touches a little bit of the, I guess the personal stuff that you've had going on. But, just to chip into a little bit in your career, you've had an amazing career as well. I mean, you've had seven years inside a company that’s doing ITIL, which, if you're in IT you'll know what that means, but it's like IT standards of delivery. Because, you're a software developer originally by trade, aren't you?
Gustavo: My Masters is in Telematics. So, I studied the merging of the telephone networks and computer networks. Which, obviously in the nineties, was highly relevant, because we still had two physically separate networks in the world. Today, we don't. They have been merged and everything is data driven. So, that was my studies and, as a part of that, you have to learn how to program, right? And I worked as a software engineer, as a software developer for a couple of years after that. And then I've done all the steps in the digital side – I went from software developer, to system administrator, to instructing people to get their certification on Linux certification, so system administrators.
Paul: You've also worked in sales as well from what I understand.
Gustavo: Yes, yes. Back to this personal trait of mine, is that when I see an opportunity I take it, right? And also, I've worked in organizations of various sizes, and everyone needs to have, people that have a wide profile, that have understanding from technology but are also able to do other related work, like sales or customer development or strategic work and being a trainer, or whatever it is. Everything rooted in technology, but kind of the whole line of activities.
Paul: So, I guess having that background and being so open to understanding people, and their different cultures and the different ways they think and their agendas and all of that different mishmash of understanding really how people work, must have stood you in really good stead moving into sales. It probably makes you, what we in Australia would say, a bit of a unicorn really – being able to cross all of those different disciplines. I mean, would you think that's a fair statement? I mean, not about the unicorn bit, but about standing in you in good stead, I guess, all that life experience?
Gustavo: Absolutely, absolutely. So, this is also something of a personal trait or something that I've that I've been able to do since I was a very small kid was to strike up a conversation with pretty much anyone. I can always find a topic, a common topic and talk about and make friends, with pretty much anyone. I remember some of my friends in Spain always made fun of me because they said, 'Gustavo, you're able to make friends with a rock.’
Paul: Yeah.
Gustavo: But again, I think this comes back...a lot of it comes back to the fact that I came to Norway as a kid, alone, with no network. And how do you survive that? You have to go out, you know. You have to seize the moment. You have to talk to people. You have to. And so, I'm very extroverted and talkative, as you can notice. And in sales, it's all about the relationship, right? Being able to establish a good relationship as early as possible. So, it's definitely an advantage there. Absolutely.
Paul: Okay, so I guess, you know, wow – you were really on the path then and you were working for a company – Computas – at the time and you were really kicking goals, getting after it. And then, in 2013 you had some news that I guess was completely unexpected with being diagnosed with a brain tumour and going through all of that. When that sort of happened in 2013, I mean, what did the medical profession tell you of what that was going to be like?
Gustavo: First of all, the notification that they had found the tumour was handled extremely poorly, because this information came back to my doctor, my regular doctor, you know, the first notice when you have a cold or when you're your feet hurt or whatever it is, right? But she was busy when I stopped by to get the response from the MRI. And the girl behind the counter – sorry, the nurse behind the counter – she apparently didn't really understand what the what the letter she was holding in her hands were actually saying. So, she just handed it to me over the counter and I left the office and right here on my way home and broke down in between cars, in a parking lot between the medical centre in my house.
Paul: Mm hmm.
Gustavo: That was...that didn't make things any better. Again, on my own, alone, sitting between cars, crying my eyes out. So that was scary stuff. Later on in the process, I met this young doctor, at the radium hospital in Oslo, which is where you have all of the cancer patients of all sorts. And first time we met, she said, ‘Well, you know, you have a malignant tumour, and the way forward is going to be long and hard.’ I'm like, ‘Holy crap.’
Paul: Subtle, but to the point.
Gustavo: Yes, subtle. So, sigh. I couldn't believe my ears because, first of all, I had been told that it was a benign tumour and that this was going to be no problem. So, I come into this and meet her and she's basically telling me the opposite. I mean, it felt like the ground was disappearing beneath my feet. I had two kids at the time. I still had two kids. My youngest was six months and my oldest was three years old. So, I mean, you know, all the fears that go through your head in a situation like this, and then you have a doctor saying something as grave as she said – that was horrible. That said, the rest of the contact I had with professionals in Norway was great. So, I complained.
Paul: Yeah, I bet you did.
Gustavo: To her boss, and he took my case himself.
Paul: Oh, wow. Okay.
Gustavo: And he was a super great guy. So, from that point on, everything was...smooth is maybe overstating it a bit, but at least from the treatment side of things, the relationship, how I was met and handled, was good.
Paul: Did they set your expectation with what the process would look like?
Gustavo: Yes.
Paul: Oh, they did?
Gustavo: Yes.
Paul: And so you actually had that journey, that plan, sort of mapped out for you. Did it go according to plan?
Gustavo: Yep, yep,
Paul: Yep. Okay.
Gustavo: So, like any medical treatment, all medical treatment is voluntary. So, they say, ‘Well, you know, this is the situation. You have a tumour in this area. This is how we would proceed. We recommend you to do so, but it’s up to you.’ They didn't draw out the entire process over a year. They said, you know, ‘This is a huge situation now.’ This was in February. I got my surgery April 10th. So during that waiting time they explained to me how the surgery was going to be and what was going to happen the few weeks after the surgery, but not what was going to happen six months down the road.
Paul: Yeah. I guess it's probably impossible, in fairness to them. It's impossible to say. I mean, I've had the same experience...
Gustavo: Exactly. So, it all depends on how surgery goes. And doing a proper biopsy of the tumour, so they can see how aggressive it is.
Paul: Yeah, OK.
Gustavo: And based on that, they would, you know, apply the appropriate way forward. So, during that time, from February to April, I was basically waiting. I was waiting to get this surgery. And that was not in easy.
Paul: No, it must have been hell.
Gustavo: But you know, small kids at home, I had a work where I was doing well. And, all of a sudden, I get this notification, and then I have to go wait, kind of in this vacuum situation. I don't know what to do. Should I keep working? Should I pretend like nothing happened? Should I go home and cry myself to sleep every day? What do I do in a situation like this? So, what I did is...you know, in a situation like this you feel very out of control. Being out of control in your own or your own life, this gravity, is really uncomfortable. I guess it’s uncomfortable for anyone, but I can only speak for myself. It was definitely for me.
So, I figure, well, you know, I'm going to start blogging about this – doing a video blog – where I basically tell the world how this is going. And so I started recording videos, not on a daily basis, but almost on a daily basis, like every two to three days, and maybe a video that was between two and four minutes long. And I always thought, you know, what can I tell to the world, to anyone who's in a similar situation or is in the care for a person in a similar situation, what can they learn from this? What kind of value can I give to them given, my current situation? So that was my guideline and then I just started doing these videos. And I kept doing them from mid-February, until the last one was maybe three years after the surgery.
Paul: So, during that period of time, obviously you had a little bit going on, it's astounding that you still had the presence of mind to think, ‘I'm going to share this story with everybody’, because I guess not everybody would. It would be quite an all-consuming thing. How did the people in your circle react and relate to you? I mean, I've had experience where people don't quite know what to say when you've had this massive life event occur. I mean, how did how did people relate to you? Did they relate to you any differently? Were they cool? How did that work?
Gustavo: See, what I what I wanted to avoid was, I didn't want to have the awkward situation when you meet someone and they're like, ‘Yes, so I heard that you had something. Are you okay?’ I just didn't want that. So, if I post videos out into the world, people will probably meet me where I am at the moment instead of asking me, ‘How's it going?’ and all that. I mean, that's great that people care for me and ask me how it's going. But I wouldn't have to repeat myself so many times if everyone knows what's going on. So, it was great. It was fantastic. I mean, during this period of time, I got kind of a fan group, if you like, of something like 100 people, primarily through Facebook. And they visited me, they sent me flowers. I mean, people I hadn't seen for decades. So, it was absolutely only a positive experience to use social media to expose myself like that.
Paul: Wow. Arguably, you were one of your most vulnerable moments in your life. I mean, that takes a lot of...Did that make you nervous, making that decision to share that? Or you just went, ‘Nope. This is just me. Let's just get on with it.’
Gustavo: Probably the latter. Jump into it, you know, I'm kind of – I like risk and I’m also a little, ‘How bad can it get?’ You know, I'm kind of naive that way. Maybe even stupid. But, as a related story to that, the last day I had at Compitas, before the surgery, the guy who had the HR responsibility for me, he bought some cakes and he invited a bunch of people and we sat in a room, we were maybe 20, 25 people, and they were kind of wishing me luck and goodbye and, ‘Hope to see you soon again’ and all that. And he told me that, I mean, our common boss, who I had worked closely with, they told me later on that they had had a chat with the HR director and the HR director was concerned that – how would you expose someone that is going into brain surgery, how would you expose them like this to, you know, invite a bunch of people into a room and have a cake? And I said, ‘Well, you know, for Gustavo, this is this is the right thing to do, not for somebody else, but for him it is.’ And he was absolutely right. I mean, I felt so good after that.
Paul: That's amazing. So, going into the surgery and that time, you must have been, you know, having some symptoms and some things like that. And then coming out the other side of the surgery, what sort of after-effects did you have to deal with?
Gustavo: I think it was, after the wounds healed, I mean, even if it's a brain surgery, it's still, you know, just like a cut. So, after two or three weeks, your wounds are healed and then you can continue on with more treatment. So, after about, I think it was three weeks, I started radiation therapy, which was a total of 45 or 50 applications, one per day over the period of time of almost three months. Nothing in the weekends and then every day during the week. So I had to drive in to the radium hospital, put myself into the machine, get grilled and go back home.
Paul: Wow. So, did you have to deal with things like, I mean, I know in the stroke community we talk a lot about fatigue, and both cognitive fatigue, physical fatigue. Did you deal with similar sorts of issues?
Gustavo: Absolutely. The result of treatment one day – so, you go into the radiation machine, you go in, you feel well, you go out and it's like somebody hit you in the head with a hammer or you've been sitting in front of your computer for 20 hours straight without going to the bathroom. That kind of, you know, grilled feeling in your head. Your head is just like a balloon, right? And then it accumulates. So, the first day it's bad, the second day it's worse, and the 30th day it’s, you know, rock bottom. So, then it takes a while for the body to recover. Even after you stop getting radiation, so in my case, after something like 60 days, it takes a couple of months for the body to recover and to get your energy and your level of returning to normality, if you like.
Paul: Okay, how much insight did you have into just how fatigued you were? Were you pretty conscious of, ‘Yeah, I'm totally toast,’ or you think, ‘Now I'm fine, I'm going to work tomorrow. Everything will be great.’?
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Gustavo: A combination. Because, you know, one of the things every time I walked into the radium hospital and still when I go to my yearly check-ups, it's not a place for me. I don't belong. You know, I’m sure you can relate.
Paul: Yeah.
Gustavo: You know, I'm really not this sick. All these other people are sick and they need help. I feel for them, but not me. I need to get out of here as soon as possible. So, you know, I basically just run through the corridors and just get my stuff done and get out of there as soon as possible. So, it's that aspect, and then at the same time, I didn't deny what I was feeling. So, if I got tired, I would go and lay down. And stay down for whatever amount. I slept a lot during the day, but at the same time, I reconstructed my entire garden. So, I got like 11 tons of soil and new lawn and you know, yeah...I needed to do something that I felt progress on with my hands in real life, not just doing this.
Paul: So, when you're talking sort of fatigue, did people understand that? It was pretty well understood?
Gustavo: Yeah. And I think the explanation that I got, this comparison to being in front of a computer for way too many hours, most people will have done that in some way. Either binge watching a series on TV or working too many hours straight. So, I think they pretty much got the sentiment on how I was feeling. And of course, everyone is extremely respectful when it comes to any injuries inside of the cranium.
Paul: Yeah. Yeah. How long did how long did those symptoms stick around for? Do you still suffer with fatigue today or...?
Gustavo: It's hard to tell. I remember I was back at work after eight months, but just a day a week, or something like that. And then I kind of scale scaled it up, and I was fully back at work 100% after 11 months. And then after that I took on one of the most requiring projects of the history of the company. So I was definitely back, and was fine, after that. When it comes to fatigue and permanent damage, I was about to say, it's hard to differentiate what's what. So, I had small kids, I had this brain tumour and all the treatment that came along with it, I had a job, and I wasn't vicious and it demanded a lot of me, and I liked to work a lot. So, what of these these factors tires you out? And also, I got older, right? So, I went from from 35 to 36 to 39, 40, and now I'm 45. And so, what's what? I'm definitely more tired now than I was when I was 30. For obvious reasons, right? But one thing that stuck around was, I remember I was seeing one of my consultants. No. How do you say when you talk to a doctor?
Paul: You attended one of your appointments and spoke to one of your medical professionals?
Gustavo: Yeah.
Paul: Sorry. I don't think I helped there, Gustavo, at all. Like I said – English, my first language, sure.
Gustavo: So, in one of my meetings with the doctors, one of my check-ups, they always ask me and the moment I... First, I do an MRI and then a week later or so later I meet the doctor and they tell me how it's going. And the good news is always – nothing has changed. The MRI now looks the same as it did one year ago. That’s what we want, right?
Paul: Yep.
Gustavo: So, I mean, I go walk in the door and as soon as I walk in the door, they say everything's okay. And then we can talk about other things, right? So that's a nice way of doing it instead of me squirming around in the chair. He said, ‘So how are you feeling?’, and so forth. And this was probably a year after the surgery or a year and a half or something like that. And I said, ‘Well, you know, I'm more dizzy than before. I mean, I've done karate. I've been very active.’ I’ve always been very playful, if you like, and I have a fairly good locomotive control. So, I can I've done all sorts of sports and so forth, and I've never gotten dizzy. I would go on all sorts of carousels and stuff at theme parks and never gotten dizzy. Now, I could just turn around and I almost fell. So, I told them that you know, when I run down the stairs to catch my train and the stairway is kind of in a spiral downwards, I get really dizzy and it lasts two or maybe ten, 15 seconds and then everything is fine and then I can continue running. And the doctor was like, ‘So, you're running down the stairs are you? Yeah, I guess you're fine.’ I'm like, ‘Yeah, that kind of puts it in perspective of course.’
Paul: Geez. So, do you still get dizzy? Like you still get dizzy now?
Gustavo: Yeah, that's permanent damage. I mean, it's not something that bothers me greatly, but I do get very dizzy very quickly and it passes fairly quickly. So, it's not something that hinders me in doing anything, but it's something that wasn't there before.
Paul: Yeah, okay. Is that pretty much the only kind of long-lasting physical effect you've had?
Gustavo: Yeah. I I've been extremely lucky. The surgeons here have been so good. It's always dangerous to say the best in the world, but in my experience...yeah. So, my mum had the same kind of tumour. And my uncle had the same type of tumour. We're talking about an ependymoma in the fourth ventricle. It's a medical technical term, but it's basically in the back of your head – in the beginning of the spinal cord. So, it's very accessible. It's easy to get to. I suppose to having a tumour in the middle, in the centre of your brain, where you can't access physically. But this kind of tumour is very rare in grown-ups. And all three members of my family got it when we were grown-ups. So, I've participated in some studies, but they can't find anything. They can't find any explanation to why my uncle – blood-related uncle – my mother and myself had the same kind of tumour. Now, just going back to why I had been very lucky and I think that my surgeons have been the best in the world is because my mum has much more severe secondary effects from her treatment. The scar is ugly. She stumbles around like a drunken sailor. My uncle was kind of the same. So, of the three of us, I have been the one with the least amount of long-term effects.
Paul: Do you think your karate training assisted with helping with your balance and recovery, like that background that you had?
Gustavo: Could be. I don't know. Maybe. So, basically the back of your head and the secondary effects like that were at risk when I went into surgery, were losing my ability to swallow, losing my hearing and getting my balance affected. Those were the highest risks. And of course I was freaking out – imagine if I get out of surgery and I can't swallow. Oh, that would be a horrendous long-term effect, right? But that didn't happen. So, the first thing I had to log after the surgery, I'm still, you know, I'm basically waking up from the anaesthesia, and the first thing I do is that, ‘Okay, I can feel my toes, I can swallow, I can count my fingers.’ I’m like, ‘Okay, this is good.’
So, the balance is definitely something that could be affected. And in my case, it was very little affected, in my mother's case, it got effected a lot. And she was also older. And my uncle was also quite affected by it; his balance was quite affected. So, I've been lucky.
Paul: Yes. So, going into that situation, having those issues, getting that diagnosis, getting that that horrible experience of having a letter passed to you saying, ‘Congratulations, you have a brain tumour’, which I can't even begin to imagine. Gustavo, how did you stay so positive and so driven in that? I mean, that would be certainly understandable for a lot of people, that would just put them in the ground, as in, you know, mentally, how did you maintain such a driven mental space, for want of a better term?
Gustavo: From a very early age, I learned how to control my feelings. And this is a good tool to have in certain situations. But if it becomes an automatic response to challenges, that control leads to a debt, if you like. So, emotions and feelings, in my experience, they have to leave the body somehow. If you keep corking that up, you will have a bigger issue at a later stage. So, the debt becomes too big to carry.
I stayed positive by basically denying feelings. And I understood, you know, logically that, okay I am going to have to deal with this at some point. You know, I let my feelings out whenever it was necessary before the surgery, after the surgery, but when I was back at work 100%, I started going to therapy because I figure that this is such a big trauma and I haven't gone into it a lot. So, I started going into therapy, and started fixing up in that trauma and of course, other traumas that showed up. So, I guess that's my answer, you know, how did I stay positive? In the moment of crisis I ignored the feelings, but I understood that I had to deal with them at some point. And then a bit later I took it seriously. I went to therapy and I managed that way.
Paul: But I guess you had the presence of mind and the life experience to know you can fake it for a while, but you're going to pay for it later. So, I'll defer the payment, but knowing that I'm going to have to pick it up at some point because I guess, I'll freely say it, myself included, we don't always have that that level of level of wisdom. So how did you come to that level of realisation? That level of insight? Is that a culmination of your previous life experiences, where you put that together at some point? Because that to me doesn't seem like a natural, I mean, natural – that's the wrong word. I mean, an obvious thing. That takes a little a lot of insight that a lot of people probably wouldn't have.
Gustavo: Hmm. That's interesting. I don't actually. To me, it came fairly naturally because I'm a very logical guy. So, I thought, ‘Alright, having a trauma this big, obviously this is a big deal. And if I'm not feeling too much right now and I'm just stepping on the gas and moving forward, you know, with the video blog and with just getting through treatment and redoing my garden...’ I just logically understood that this is not right.
Paul: Yeah, okay.
Gustavo: So, I had to pick it up. Where that insight came from, I don't know.
Paul: That's an amazing thing. You've gone through that process; you've come out the other side of it. You seem to have, you know, I guess you always continue to deal with life experiences in your own way. And then you've gone, ‘Well, let's get into the startup scene and start coaching people through startups', and things like that. How did you get from that, from your cancer and recovery experience through to developing an interest in startups?
Gustavo: Well, when I finished my Masters, and after I did my little backpacking tour, I came back to Norway in 2004. This was before computers, before the tumour. So, in 2004, I co-founded a company and I stayed in this company from – it was called Free Code – and I stayed at this company from 2004 until 2011, where I went on to Computas. And 2013 is where I had the brain tumour, right? And back at work fully 2014.
So, Computas’ main customers are governmental entities. They do case management systems for, you know, the Food and Drug Administration, for the police, for all the courts. I mean, they do some really heavy and solid work on super critical IT systems and that's very exciting, but things move slowly.
Paul: That is a constant for governments in the entire world. It is exactly the same in Australia.
Gustavo: Yeah. And I mean, for obvious reasons. It's not my intention to criticise them in any way.
Paul: It just is what it is.
Gustavo: Yeah, exactly. I wanted to work in an environment where we had a higher level of speed, more dynamics, a higher level of innovation, if you like. In 2016 I was done with a large project as a project manager and I had completed a two-year board membership in Computas and I figured, ‘I have done everything that I can to get this company to shift focus towards digital innovation at a higher degree and they don't seem to be interested in doing it, so then I'm just going to go somewhere else.’ So, I left Computas in the fall of 2016 and without any plan. Well, that's not true, I had a plan, but it was sketches of a plan more than anything.
At the time I had 300 connections on LinkedIn, so not a very big network. The whole startup frenzy that is going on now, at least in Norway, started a little bit around 2016. So, we had some conferences and The Lean Startup was getting wind in its sails and it was exciting stuff. So, I left the company, I figured, ‘I want to work with these companies. How do I get there? I don't know.’ By going to conferences, start going to talk to people.
Paul: Doing what you do.
Gustavo: Yeah, exactly. So, so I landed a job a month later with a startup that had the toolkit to enable faster innovation for the digital product development. I think, ‘Okay, so these guys have made the tool to do what I want to help others do.’ Either do myself, working a company doing this, or help others do – improve their speed of digital innovation. And then I became the business developer for – Syncano was the name of the company. So, I worked for there for three years and met, you know, I don‘t know, 70 different companies. At the same time I went in, the whole startup community was starting to grow a lot in this time in Norway. So we had incubators and startup hubs and accelerators and all these type of organisations to help early-staged companies off the ground, which we have seen for a while in Silicon Valley. Now we were trying to import this and implement it in Oslo. So, I thought, ‘Alright, this is my chance, right? I'm just going to jump on it.’
So, I went and applied at a couple of hubs and they liked what I said and what I had to share, the knowledge that I had. So, that's how I became a mentor for early-staged companies.
Paul: Just again, those skills to just decide, ‘I've got an interest here. I'm going to go meet some people and see what happens.’ You know, I guess a lot of people would love to have that skill set. And now you've gone on to even evolve a little bit more as the chief digital officer of a leading Norwegian company that's on the cutting edge of thermal battery technology. Is that a fair statement?
Gustavo: Yeah, it is. Absolutely. Actually, I just posted on LinkedIn yesterday that McKinsey has done an article, a study here in Norway to see how we can replace the oil business. So, for anyone who doesn't know, maybe 80% of Norway's income is from oil. We have a lot of oil in the Northern Sea that we basically pump up and sell, and get very wealthy doing so. But it's not very sea friendly. It's not very good for the environment. It's not very good for a lot of things. So, there we have green shifts. We're in the midst of a green shift in Norway – internationally as well. There's a lot of focus. How can we invest this money to do the green shift? And they have listed ten areas where Norway can replace 70% of our current income from the oil and it's, you know, hydrogen and it's wind turbine parks and it's, I can't remember all ten, but battery technology is number three. When we talk about batteries, most people think of electrical batteries because that's what we have seen always, right?
Paul: Yeah.
Gustavo: But a battery on its own is just a temporary storage for energy. It doesn't need to be electrical energy. It can be any kind of energy, so the concept of a battery is a bit bigger than just an electrical battery.
Paul: I guess it's an amazing story. You've gone from where you've come from to cultivating those skills and that experience and then having that massive event in your life and then maintaining that mindset to deal with things when they need to be dealt with and then to continue just to have that ambition and that natural curiosity.
Gustavo: One of the secondary effects, or one of the consequences, of having of having the tumour in 2013 was that I got a higher sense of urgency in life, because something that big – and I'm sure I'm not the only one – but for me, it was something that big kind of made me remember that you might not be here tomorrow. You never know. You really never know. We take life for granted and we walk around and are happy and expect there to be next week and next year and then the decade after. Yeah, but it's not so. Life is much more fragile than that. So, after my sick leave and I was back at work, I made a three-year plan and I was like, you know, ‘Hell, I'm going to make the most of life. And this is what I'm going to do. I am going to have a job where I work with innovation, because that's what I want to be doing. And I'm going to begin this, give it a try at my current company for two years. But when those two years are ended and I don't see clear indications of the company moving in the direction that I want to be working in...’ most jumped ship, and that's what I did.
So, on the good side, a higher sense of urgency, more focus, I don't waste my time doing stuff that is not taking me to where I want to be. On the bad side, it's a bit stressful to be that conscious of everything you do at all times.
Paul: I can imagine!
Gustavo: Okay, so now that it's been almost ten years since my surgery, it's actually nine come April this year, I've probably relaxed a little bit on that and I'm not that focused and so extreme on measuring everything I do.
Paul: I've got a final question I want to put to everybody that I chat to, because one of my primary drivers for having chats with people such as yourself is, I remember when I woke up after my event, lying on a bed, having doctors tell me things, my future being very uncertain and not really knowing what's going to happen and what my capability was. In fact, everything that everybody told me about my capabilities were, ‘Your capabilities are going to be greatly reduced.’ So, what sort of advice, or is there one or two things that you would tell that person lying in that bed in the early stages of recovery from whatever, what would you tell them? I know that's a very open question, but you know, what would you have done differently, if anything? What pieces of advice would you offer?
Gustavo: I think maybe that acceptance is the key. Because if you accept your current situation, and I mean really accept, not on a theoretical level, but really feel it and accept it and come to terms with it, I think that's got to be the first step of leading a good life because I was super lucky. I'm not trying to relate to anyone that has had long term effects that are much more grave than mine. But I think that in my case, I think I would have had less pain if I accepted my situation earlier than I did.
So, we all have an idea of the life we want to have. You have an idea of the life we currently have. And when that is taken away overnight, so to speak, you're allowed to feel sorry, you're allowed to grieve. It's the life you wanted, or was trying to get, didn't turn out as you planned or as you wanted. And it's okay to be to be sad and sorry about that and take your time to grieve properly. Because then you can accept easier the current situation and, just because your life didn't turn out to be the way you wanted, it doesn't mean that you're not going to have a good life. There are so many variants of a good life, and it doesn't need to be one way or the other. It doesn't matter what you do. What really matters is how you feel. So, it's more inwards than outwards, I'd say.
Paul: So, would you say that acceptance process... because, hands on heart, it's something I still struggle with today, and then I go, ‘Yep, I've got this now. Got it.’ And then, then I don't.
Gustavo: I do too. I... I'm not saying that, ‘Hey, I got all the answers.’
Paul: No, no, no.
Gustavo: On a theoretical level I can talk about it and think about it and how far I have gotten in this is... I'm not 100% done either, by all means.
Paul: Is that acceptance a continuous process, do you think?
Gustavo: I think it might be, yeah. And then, of course, life will serve you more challenges.
Paul: Every day.
Gustavo: Because, I mean, that's life, right? It's one challenge after another. And I think that accepting the changed situation and the change capabilities alters a lot of things. But I think it's kind of the route of the way forward. From my perspective, the acceptance that I had a brain tumour, that's what it was and that has affected me in some ways. For me, that's kind of a finished part. But at the same time, I do go walk very quickly through the radium hospital when I'm there on one of my yearly check-ups. So, it's not 100% done, the acceptance and...
Paul: Yeah. And I don't think anything like that could be. I mean, it's a case of... look, I hate hospitals. I refuse to go usually, even just for incidental things, I don't want to see the inside of that. Something like this is always going to stick with you. You know, it's like any life experience. So, I guess part of that acceptance process – I think you hit the nail on the head before – maybe part of it, because I don't know the answer either, part of that acceptance process is to understand that emotionally you're going to pay for this somewhere down the line. So, you’d better be prepared to pay the debt. Acknowledge that the debt's there, be prepared to pay for it, because that's part of the deal.
Gustavo: Accepting what has happened. And then the therapy afterwards has been crucial to be able to move forward. Because I did a video of me, I filmed a session of radiotherapy. I talked to them, I was allowed to do it and so I did so. And just hearing the sound of the machine, sounds kind of like a train. This electrical sound, right? This, ‘Eeeeeee’. I showed the video to one of my... Hearing it is something that really sticks with me, because you're strapped down, you're completely... you can't move, right? And you get this radiotherapy and then you feel bad afterwards, day after day, after day, after day, for 60 days, right? So, I remember showing this video to one of my cousins in Spain six months after I was done with radiotherapy and I just broke down in tears. That's from the sounds of the machine. And this was in Christmas of 2013. I pulled up this video and watched the same video maybe half a year ago, and I felt nothing. It was fine. I can remember it as a memory, but it didn't break me the same way. And I think this is thanks to therapy. The type of therapy that I've been doing is going in deep into traumas, get a hold of the feeling and just cry it out.
Paul: Wow. So, do you call that trauma therapy? Is that a special kind of...? Because I don't know a lot about it.
Gustavo: It's called Emotion Focus Therapy. Have you ever seen the movie Fight Club?
Paul: Yeah.
Gustavo: And you remember the scene where the main character, Edward Norton, is crying his eyes out in the breasts of this other man.
Paul: Yeah. Wasn't that Meatloaf? I think it was! I think it was Meatloaf! Yeah, yeah, yeah!
Gustavo: So, it's kind of the same. Of course, it's a bit funny in the movie. But it's the same concept. It’s taking a stuck feeling that you have inside and the way of getting it out is like small kids do, they cry it out, they spit it out, they kick it out. A two-year-old child is an expert in getting traumas out – they get it almost on a daily basis. Their life is turned upside down pretty much all of the time. Well, it’s a figure of speech.
Paul: Yeah, of course.
Gustavo: But they are really good at not bottling it down. But as we get older, we’re taught that, ‘No, you can't show emotions here.’ Or, ‘This is not okay.’ Or I mean, ‘It's not happening everywhere, at all times.’ But you know, 4 years ago in Spain, this was the way to go. You have keep control of your feelings, bottle them down and move on. And so the type of therapy that I've been doing for the last eight years is basically, go in, get a hold of a feeling, get a really good grasp on it, which is difficult on its own when it's been bottled down for years and decades. You might not feel anything. I mean, you might have to go four rounds of therapy before you even start feeling anything, and then you get a hold of it. And then, all of a sudden, the trauma comes up and then you just get rid of that nasty ghost that is in the basement. And when I’ve been doing this over and over and over again, especially with the example of the sound of the machine, the feeling is not as scary anymore, so it doesn't trigger me the same way. And that's what I basically prove to myself when I watched the video half a year ago, and it was okay.
Paul: That's an amazing tip, I think, for anyone out there in that fresh position to start coming to terms with, not just the pure facts of what's going on, but the emotional impact. Because you’re right, we are taught to just, I mean, in Australia, it's very much a ‘harden up and get on with it’ culture, particularly if you're a guy.
Gustavo: All over the world it is. I mean, that's nuts. In Norwegian, a small child falls, you know Norwegians are really good at skiing?
Paul: Yes.
Gustavo: They fall down and get back up again. It's impressive. I'm proud of being part Norwegian. But when you teach small kids to ski, you know, they fall down and they hurt themselves. And that traditional way of dealing with a Norway would just be, say, in a very cold way, ‘Get up!’ You don't you don't validate the feeling that it's frustrating, that it's bad, that you might have been hurt. ‘Just shut up, get up and let's move on.’ Today we don't do this. Parenting these days is very, very different. But this is the traditional way. Spain, the same thing. I mean, this is how we humans have taught our kids to move on. Life is, ‘Don't feel too much and just carry on.’ And from an emotional perspective, that's not the best way of doing things.
Paul: No, definitely not. Definitely not. Particularly dealing with those big situations, most definitely. Gustavo, again man, thank you so much for your time. I really appreciate it. You've given me a lot to think about, if I'm perfectly honest. So, I'm going to go away and have a little bit of a think. Have a chat to a few people I know. So thanks, man.
Gustavo: Thank you so much.
Announcer: This episode is part of the Young Stroke Podcast Series created by Stroke Foundation's Young Stroke Project. Find out more by visiting youngstrokeproject.org.au. You can listen to dozens of other podcasts on our Stroke Recovery website – enableme.org.au. StrokeLine’s Allied Health Professionals can help you manage your health and live well. StrokeLine is a practical, free and confidential service. Call 1800 787 653, Monday to Friday, 9a.m. to 5p.m. Australian Eastern Standard Time, or email strokeline@strokefoundation.org.au. The advice given here is general in nature. Discuss your situation and needs with your health care professionals. The Young Stroke Podcast Series is presented by Australia's Stroke Foundation and funded by the Australian Government Department of Social Services.
