Bjorn Formosa has had one hell of a year – he got married to the love of his life, faced losing the ability to speak, raised enough money to build a home for ALS patients, and now he’s moving into his own home with his wife. We sat down to talk to both Bjorn and Maria ahead of ALS Awareness month in May.
“It’s been two and a half years since I started getting the first symptoms,” Bjorn tells us, as we ask him about what he went through when he his condition first began to take over. “It started off with sporadic cramping in my legs, and continued with a very mild weakness in the legs. At first I attributed it to getting older, but I was 28. So of course it wasn’t that – it was the reality of the condition.”
Put anyone in Bjorn’s place – their body going through things they’d never felt before, feeling as though something was definitely wrong – and they’d likely want someone close to them to help assuage their fears. They’d tell someone. Bjorn didn’t.
“I started doing the first tests by myself. I went to the first neurologist and it all started from there. But I peferred going through this part alone.”
“I knew that I didn’t have much time left on my hands”
After a few weeks Bjorn’s symptoms started becoming more pronounced, and the reality of his condition more and more apparent. At this point, it was time to tell people.
“I told the whole island at once. I messaged a journalist from The Times of Malta, and since then everyone knew what I was going through,” Bjorn tells us. “I had read a lot about it on the internet, I had done my own investigating and I suspected that I could have ALS. I did my first interview before my diagnosis. I was so sure about my own condition that I knew that I didn’t have much time left on my hands. So I thought – I need to gain as much time as possible to spread awareness and do something about it.”
Bjorn says that when he first started becoming aware that he could have ALS it was catastrophic. “There’s nothing available to treat ALS – just a drug that prolongs life by a couple of months,” he tells us. “Apart from that and a bit of physiotherapy. Otherwise there’s nothing – you’re just waiting for something to happen, or something to get worse.”
“That’s what’s so frustrating about the condition. You get worse day by day until you reach complete paralysis and then you reach the end – and you can’t do anything.”
Despite the initial shock, when we ask Bjorn about whether he ever hated the world for what’s happened to him, his reply was genuinely calm. “Initially I was frustrated, of course. But I wasn’t angry,” he says. “You get a little bit frustrated with everything, and falsely hope that there’s some way to reverse the situation.”
The overriding feeling that Bjorn seems to have is – gratitude. He knows the reality of his condition, but he also appreciates how much it’s taught him. “I learnt how to appreciate life, do the things that I love doing most, to live life as I think it should be lived.”
“We were spending every day together – 24 hours practically”
Throughout our conversation Born’s wife, Maria, is by his side, giggling at jokes he makes and listening intently to a series of events she’s undoubtedly heard repeatedly – and also lived through first hand. We ask her when she knew she had fallen in love with Bjorn.
“I started to realise when I would leave him behind,” she tells us. “When I would go back home alone, or when we didn’t meet for a day. I missed him.”
Bjorn adds that at the time he would have never thought he’d start a relationship after being given a “death sentence”.
“Frankly, when you’re told you have ALS, you’re given a death sentence that expires in three years’ time. So I wasn’t about to involve someone in this ordeal to suffer with me. But then things started happening and it’s not like you can control that or be rational. So it developed and in a few months we were going out frequently, and spending every day together – 24 hours practically.”
Bjorn and Maria are now finally going to live completely by themselves, independently, in their own home. They’ve been living with their parents since their wedding a few months ago.
“We’ve finally had some time to furnish our apartment because we’ve been so busy with fundraising,” Bjorn says. “It’s not easy in our situation to live alone, completely independently. But we’re going to try.”
It’s clear that the couple are excited about this next chapter in their lives, but things have been far from plain sailing in the past few weeks. Bjorn explains how he faced one of his lowest points during his massive fundraising event for Malta’s first ALS home.
“Three weeks ago I was in hospital and things were really looking bad. I was told I needed another operation, and during the Xarabank show I was really weak. But then it all turned around.”
“When you look towards something, life is beautiful in every situation”
“This morning I was telling Maria how happy I am – that I’ve never been happier than today,” Bjorn tells us. He’s well aware that it’s something of a paradox for him to say, but he insists – “I really am super happy”.
“I’m living the time of my life. It’s as though I wasn’t even sick. When you look towards something, life is beautiful in every situation. You have to think positively. It might seem like a big cliché, and it’s much easier to say than to do. But for me it has worked out perfectly.”
It seems clear that what Bjorn is looking towards is his life with Maria, his friends and family. And also the continuation of a beautiful relationship he’s developed with the Maltese public. He talks to us about how grateful he is for the response he’s received to his very personal campaign.
“In one and a half years we’ve fundraised almost two million Euro for ALS Malta. Initially I had thought I’d maybe raise something like two thousand Euro, you know – create some awareness – and that’s it.”
“We fundraised all those funds by receiving a little bit from many people. We didn’t have big companies donating huge sums. That was the magic that made this happened. That’s how it should be – that’s what a voluntary organistion should do and what charity should represent. People giving their own selves to help their brothers and sisters.”
“In one and a half years we’ve fundraised almost two million Euro for ALS Malta”
As we reach the end of our interview with Bjorn and Maria, the discussion turns to the future. Their story, their campaign, and their spirit has captivated and moved Maltese people all over the island. We ask them what they hope their legacy will be, what impact they want to leave on the world. But they have no grandiose expectations.
“The most important in life is happiness,” Bjorn replies. “Nothing else really matters.”
“When I started my campaign, I probably had a clearer idea of what mark I wanted to leave on the world. Nowadays I just get things done – I try to live my life in the best way that I think it should be lived.”
“I just try to help others, and hopefully people think that’s good. I will leave it to the people to decide what I’ll be remembered for.”
If you would like to donate to ALS Malta, visit their website here.