LIFE AFTER STROKE

‘My stroke is the best thing that happened to me’

Having survived three strokes and major brain surgery, Bill Gasiamis now runs the Recovery After Stroke podcast, which inspires thousands of fellow survivors around the world from his base in Australia. NR Times learns more about his journey to globally-known podcaster and soon-to-be published author, and why his traumatic experiences have helped him live a better life

Considering the huge trauma Bill Gasiamis has experienced as a result of stroke, the fact he hails it as a life-changing event in a positive way is something he admits is often questioned. “My stroke was the best thing to happen to me, definitely,” says Bill. “I’m looking at it from a post-traumatic growth place, because I’m not the same guy I was before stroke. “I’m a completely different version of myself - upgraded and enhanced, even though I have deficits and neurological problems as a result of what happened. “I think it comes down to mindset. I’ve always been a ‘glass half full’ kind of guy, even as a young kid, I found the silver linings and always believed things were achievable. “But when I had my stroke, I realised now I have a lot of problems, a lot of challenges to overcome, and if I start to think negatively them I’m probably a goner. “And that inspired me to discover my purpose - had it not been for my stroke, I would never have been doing what I do now.” And now, having cheated death three times in as many years since his first haemorrhagic stroke in 2012, aged only 37 - and surgery which left him having to learn to walk again - Bill is helping to inspire countless other people and families around the world who themselves have experienced stroke and are dealing with its impact. The Recovery After Stroke podcast has over 5,000 downloads every month, from survivors and family members in countries across the globe, all looking for somewhere to access much-needed information and support on stroke recovery and how lives can be rebuilt in its aftermath. “It's mainly about showing people who are going through the very acute phase of stroke, that there's a middle and an end to the journey,” says Melbourne-based Bill. “Even though you might have deficits, or where you might be struggling or your life has changed, there is still some way that life becomes routine and normal again, down the track. “While the podcast started off for quite a selfish reason, in that I couldn’t find the support or resources I needed for myself and my family, I never imagined it could have led to coaching and supporting people in the way it now does.” Back in 2012, being a podcaster based on his own traumatic experience and recovery from stroke couldn’t have been further from Bill’s mind. As an entrepreneur with his own property maintenance company, Bill, a father of two then-teenage children, enjoyed a busy and action-packed life. So when he experienced numbness in his left big toe one Sunday morning, he resolved to get on with his day. “I noticed the numbness, but it just went out of my head,” he recalls. “I had this routine on a Sunday morning, I would go to the gym and run on the treadmill for 5k. When I went there, I felt unstable on my feet, because by then the numbness had spread from my toe to my entire foot. “But I still didn't think anything of it, it was just a weird thing. I had a regular appointment with my chiropractor, because I was always doing silly things and lifting things the wrong way at work, so I spoke with him. “He said he couldn’t find anything from my spine or back that might be causing this numbness, but told me to keep an eye on it. I took an anti-inflammatory and went back to business as usual.” However, over the following days, Bill’s wife remarked on his new and ‘strange’ walking style, and by the Friday the numbness covered the entire left side of his body. While stroke and its symptoms have a higher profile now than back in 2012, Bill remained unaware such a thing could be happening to him. “I just got on with it, I went to work. I tried to get on a ladder but my left leg wouldn’t lift and stay on the rung. I thought the ladder must just be wet and slippy, so I picked up my leg and placed it on the rungs of the ladder. I proceeded to climb up,” he says. “I probably knew it wasn’t quite right, but when I went to the chiropractor for another appointment, he said I should go straight to the hospital. “I didn’t want to as I wanted to get back to work, and didn’t see the need, but my wife persuaded

me to go so they could confirm nothing was wrong with me.” Following emergency scans, a shadow was discovered on Bill’s brain, which required a tennight stay in hospital. On discharge, he was told to have complete rest for six weeks ahead of a follow-up appointment. However, at the six-week mark, Bill returned to work - and, unbeknown to him, the ordeal was about to get worse. “Suddenly, the room started to spin,” he recalls. “My wife came and took me to hospital, she dropped me off at the emergency entrance for me to go to triage, then she parked the car and met me. By the time she came back, I didn’t know my name, or what I was doing at the hospital. I blacked out. “When I woke, there was a lady at the end of the bed who said ‘Point to your chin’. I asked ‘Who is chin?’ She asked if I knew who she was, but I didn’t - I didn’t even recognise my wife.” Bill discovered the bleed on his brain had increased from around 1.5cm to more than double that, causing an array of problems for him in living his life. “I had memory problems. I couldn't write an email. I couldn't read,” he says. “I couldn't remember who came to visit me. I couldn't work, I couldn't drive. And I couldn't finish and start sentences sometimes. “But then, in November 2014, I had another episode where I was given permission to drive and go back to work and I felt a burning sensation on my left side while I was driving, it felt like sunburn. “I drove myself to the hospital and this time, my surgeon came to visit me and said, ’It has bled for the third time, we've got to take it out’. So a few weeks later I had surgery to remove the faulty blood vessel, which they then discovered was an arteriovenous malformation. “It was the first time they confirmed that that's what I was dealing with.” Intensive neuro-rehabilitation followed where Bill had to learn to walk again, having lost the use of his left leg and arm, with Bill committing to continue his recovery ever since. While he still experiences symptoms including fatigue and some cognitive challenges, happily he has regained the use of his limbs. However, while Bill’s determination saw him exceeding expectations and progressing in his recovery much sooner than expected, one area he immediately realised was lacking was the support on offer beyond the clinical environment. “My family were really good, really supportive, but they had never dealt with stroke,” he says. “We never knew anyone who had experienced stroke, and not at 37 years old. They were there for me in every capacity but weren’t capable of understanding and supporting a stroke survivor, because they’d never experienced it, and there was no support for them. “At the beginning, it was about trying to understand what a stroke is and how it impacts your life. I teamed up with the National Stroke Foundation in Australia to learn a little bit more about stroke, and the support they could give. “I discovered their funding is all about stroke awareness and prevention - but when it comes to life after stroke, what now? That was really lacking. “Survivors are left with finding their own solutions to problems that are really difficult. I got a little bit of funding for some outpatient therapy and rehabilitation, but there was no suggestion about psychological counselling, about how to deal with all my emotional trauma and troubles.” Inspired by the dearth of information or support for stroke survivors, Bill made it his mission to discover what was out there. “I read books, I listened to interviews, I went to YouTube, but I found there wasn’t a proliferation of places I could go to, to hear the kinds of stories that were going to ease my mind,” he says. “There were no stories of people overcoming and achieving great things after stroke, no-one talking about what it’s like to be in a spaced out mode for the majority of the day and have these neurological symptoms that you can’t explain. What information there was, was all over the place, there was nothing in one single location. “There was a big hole, a big gap. And that's why the podcast came to be.” Through the creation of Recovery After Stroke - at a time when podcasts were just beginning to become a widely-used phenomenon - Bill was able to share the stories of survivors around the world, who discuss their situation for the benefit of people with their own reality of stroke recovery, Bill included. “At the beginning, it was about me and getting those stories about recovery through my mind and in my ears, so that I could get encouraged, but it quickly grew - we now have a community of 5,000 people,” he says. “At first, I chose podcasting because reaching a large audience was really hard to do. Somebody like me would have had to pitch to a news station on TV or radio, it just wasn’t doable, so podcasts have been a great solution. “We get any stroke survivors who want to come on to talk about their experience and how it has changed them, what they've discovered about themselves what they've learned. “It’s about trying to find a way to get what’s in people’s heads out, so other people can benefit, and I think through chatting and communicating, that’s a really good way of doing that. “It’s a passion project for me. Each onversation is really necessary, people will listen and reach out to me. I want it to be a place where people go to get stories of recovery, and tips on how to overcome stroke, so it’s very positive and shows what they can achieve.” And in addition to Recovery After Stroke, Bill is now writing a book - ‘Stroke was the best thing that happened to me’ - based on his experience of how stroke changed his life for the better. He hopes to release it this year, to continue to redefine the limits many believe they face. “We will have chapters covering a range of topics, with conclusions to every chapter, so you can work through it and learn from the experiences of others. That’s a very exciting project and I’d love to do some speaking gigs and travel to help people understand, and probably freak them out by saying it’s the best thing that happened to me,” says Bill. “And with the podcast I’d love to do another 1,000 interviews and be the biggest database of stroke survivor stories in the world. “I feel like, through that lens, I can perhaps reach people who are going through the acute phase of stroke, regardless of their disabilities, and if they're able to find or discover where they're missing in their recovery, they can get to the next level of recovery. “And maybe at some point, they too will reflect back and go, ‘Well, stroke was the best thing that happened to me as well’.”