By Andrea Cranfield –
Everyone who knows Alan Gustafson knows him as a nice, honest, hard-working guy; a quiet fellow who buries himself into his work and keeps mostly to himself. He is kind to those he meets and is always willing to lend a helping hand.
So when he was diagnosed with Amyotrophic Lateral Sclerosis (ALS) at only 38 years old, those who knew him were devastated.
Alan’s best friend, Peter Joynt describes him as the most genuine guy you’ll ever meet. “He’s got a real soft way about him,” say Peter. “He’s kind and nice and he’s patient and he’s quite a big guy; he’s well over six feet and a super-strong guy.”
Upon reflection, Peter corrected himself. “Or he was a strong guy,” he says with a sigh. “Sadly his strength is not what it was, but he’s one of those gentle giant types.”
ALS, sometimes known as Lou Gehrig’s Disease, is a degenerative neurological condition in which the bodies’ neurons, or nerve cells, are no longer able to function.
Essentially, ALS causes a person’s muscles to waste away. There is no cure for ALS and the average life expectancy after diagnosis is three to four years.
Since his official diagnosis in July, Alan has lost most of the strength in his arms and legs. It’s difficult for him to move around, and even simple things that most people take for granted – such as getting out of a chair – have become difficult for Alan.
He first noticed something was wrong in November 2014 when he felt a weakness in his right hand and arm. He became convinced that he had a hernia in his neck because he’d previously had a hernia with similar symptoms. An MRI revealed there was no hernia.
His file was transferred to the neurology department in May 2015. The initial findings showed that Alan’s symptoms were suspiciously similar to ALS. That’s when Alan was first informed that he might have the disease. All he could do was hope that it was anything but.
“There isn’t a single test for ALS, how it’s diagnosed is the process of elimination,” says Alan. “So basically from that point they began testing me over the span of about two months: blood, urine, MRIs, CT scans, trying to rule out any potential tumors or Lyme disease or lead poisoning, HIV, the whole gamut of potential neurological diseases.”
Peter and Alan have known each other since elementary school. They still live in Kitchissippi and have stayed close over the years. Alan was even a groomsman at Peter’s wedding. So when Alan confided in Peter that he had ALS, Peter was devastated.
“He had been keeping this secret for two weeks trying to come to grips and this was the moment where he was like ‘OK I can’t keep it in any longer’ …We basically sat on my front porch and he told me through heavy tears that he’s been diagnosed with ALS and he did not have long to live,” recalls Peter.
The official diagnosis was delivered on July 2, just one month before Alan and his wife Jess’s son Harvey was born. Since then their lives have been completely turned upside down.
“Our life is basically the complete opposite [of what it was]. It’s a full role reversal, a 180 degree change of direction,” says Alan.
With all that’s going on in Alan and Jess’s lives right now, and with things seemingly spiraling out of control, they look to their son as a source of inspiration and shining light.
“Having the baby makes the situation more complicated, but he’s a huge bright spot in all of this and we’re very lucky to have such a healthy baby,” says Jess, snuggling a squirming Harvey in her arms.
With a seven-week-old to look after, Jess isn’t working right now. And when the ALS would no longer allow Alan to work, he was forced to shut down his business. He is in constant discomfort with joint pain and muscle spasms.
Alan had been a welder; it was his passion, his life, his world. It was where he felt comfortable and he was good at it too. He’s created many art pieces and signs that hang in restaurants and bars in town. He welded a centurion shield that sits outside the Ottawa Senators change room, memorial altars in the Hall of Honour – which is part of the Parliament Buildings, and a brass installation at the Bank of Montreal building on Sparks Street.
With his father teaching and guiding him, Alan has been repairing and building things since he was a child. He’s worked with his hands his whole life. In high school, Alan did his co-op placement at a welding shop and immediately knew that’s what he was meant to do with his life.
“The last 20 years I’ve focused on one sole trade, and that’s metal working,” says Alan. “I just loved it from the moment I tried it, from that moment I knew exactly what I’d found and I thought it was the best thing ever, such a good use of your energy.”
Eleven years ago Alan opened up his own business, a metal fabrication shop attached to his house called Gusto Metal Fabrications. In those 11 years, Alan worked seven days a week, never taking a day off.
A looks of frustration crosses his face as he sits further back in his chair.
“Losing all strength in my hands and arms to begin with and not being able to create in a medium that I’m familiar with feels kind of like you’re choking basically,” he says quietly. “You have stuff you want to get out there but you have no avenue to express it. You have no avenue for output.”
Alan says that not being able to work has been his biggest upset since getting ALS.
“In the 20 years that I’ve been welding, I’ve basically wanted to keep going from one thing to the next,” he says. “Welding and work was my one true love for sure. Just go, go, go, I loved it. I was making money and I was creating and the shop is right there… And I’m not doing that anymore.”
Being dependent on others instead of being to do everything himself has been tremendously difficult for Alan. Sometimes his friends come over and Alan instructs them on how to weld different projects while he watches.
“I can be the creative mind and they can be my hands,” he says.
With no money coming in, no occupational insurance money, plus a new baby to look after, Jess and Alan were struggling to stay afloat.
Peter decided he needed to do something to help his friend. He filmed a candid video of Alan speaking about how ALS has affected his life. He relayed some of his struggles, including how he can’t even lift up his baby son.
As someone who is humble and subdued, it was difficult for Alan to shoot the video because he’s never been someone comfortable with being in the spotlight.
“I’ve let my work speak for me my whole life, and I’ve never wanted to be in the limelight, so I was reluctant of Peter’s initial request but basically, as the video says, I’m in need of some help from my friends and that’s where this real idea of community and rallying around someone seemed so appealing to me,” says Alan.
Peter shot the video and posted it online. [You can also watch it below]
“That was to be Al’s kind of coming out to the world about his diagnosis because he’d been sort of reluctant to share it and I said ‘you have got to share this story’,” says Peter.
He also launched a fundraising page on youcaring.com. $50,000 was raised in the first week. Both Alan and Peter were shocked by the results and how the community rallied together to help out this struggling family.
The video was shared on Facebook and Twitter and word of a local family going through a hard time spread like wildfire. After two weeks, almost $65,000 has been raised from about 400 supporters.
“People dream of a response like $50,000. It is incredible,” says Peter. “People heard [about Alan] and they all jumped in. There are local artisans that are donating a percentage of their sales to Al and his family. There are people that don’t have a job right now and they still donated, and there were people who didn’t even know Al and were still moved by the story that they donated. I’m just blown away by how many people care so much about this guy and his family.”
Alan says he’s glad he shot the video, not only for the assistance that the money has afforded his family, but to be able to see all of the love and support surrounding him during this difficult time.
“I think it’s fantastic… how many people have reached out to me and expressed such love, I had no idea that their expansive love was so wide,” says Alan.
“The video and the campaign has been very well-received, easing the burden of our bills and perhaps allowing us to create some fun or fond memories for Harvey and Jess,” he says.
“We wouldn’t be here without the support of our community and our friends and our family,” adds Jess.
Peter says he is going to keep raising funds for the Gustafson family. He is planning some fundraising events involving the Kitchissippi community in the New Year.
Alan’s fundraising page can be found at youcaring.com/alan-gustafson-427086.