When we put out the call for “In Our Blood” stories, we expected letters, memories, maybe a photo or two. We didn’t expect to be having a phone call from Alberta with a man who’s spent decades turning his life with hemophilia into music.
He reached out after reading about the project in the newsletter. He didn’t think he had a “story” in the traditional sense — but he had an EP, written and recorded in his basement, devoted entirely to what it means to live with a bleeding disorder. So, we picked up the phone.
Check out his EP! The link is included at the bottom of the article!
Cleaven’s Story
He’s 42 now, living with severe Hemophilia A. He’s been through nearly every era of treatment there is — cryoprecipitate, the early factor products, and now the newer prophylactic therapies, and his joints carry the evidence of all of it.
He grew up in a small town in British Columbia, far from any specialized care. Getting to clinic meant a long trip into Vancouver. During his youth, his nurse would drive the kids down across the border to a camp near Seattle for an annual that trip was often the only time he was around other people who understood what growing up with a bleeding disorder was like.
“It was very isolating,” he told us. Camp was really it. That was the extent of his community for a long time.
That changed as an adult. He’s since started a family, moved to Alberta, gotten involved with their chapter and now sits on a blood supply safety committee — experiences he says have completely shifted how he sees his own condition. Getting involved in the community, he said, has been amazing.
How the Guitar Found Him
The music started almost by accident. His dad bought his mom a guitar when he was around 16. She never picked it up — he did. Lessons followed, then the slow, awkward process of trying to write his own songs.
It took him almost a decade, he says, to understand why he was writing. Even in just the last five years, that purpose has kept shifting. Now he describes songwriting as an exploration of life itself: his own life, why we suffer, why we experience joy, all of it. It became a form of therapy, much like keeping a journal.
His newest EP leans into themes of aging and acceptance alongside his bleeding disorder, looking back on choices he made when he was younger, and making peace with them.
These days he records in a home studio he’s built up over the years, running Logic Pro and a collection of gear he’s pieced together over time. A few years ago, he finally built a proper soundproof studio in his basement. His influences run from Jon Foreman of Switchfoot to the fuzzed-out guitars of Smashing Pumpkins he grew up on with a soft spot for Canadian artists like Matthew Good, Feist, The Royal Foundry, and Afternoon Bike Ride.
The Moment It Clicked
For a long time, music and his hemophilia ran on separate tracks. That changed in 2018, when he attended the World Federation of Hemophilia’s World Congress in Glasgow, Scotland. There, he met other people with bleeding disorders from around the world, including a fellow guitar player from Victoria, BC. They talked, he sent him some of his songs, and that connection has stuck out to him ever since.
That might have been the moment, he says, when he realized music could actually be his way of telling this particular story. Not just writing about life in general, but specifically about this life.
He’s quick to point out what makes his songwriting possible: he’s not trying to make money from it. “It’s helpful when you’re not trying to make money — really just doing it for yourself,” he said. Writing without worrying what anyone else thinks, he’s found, is where the real creativity lives.
The Songs Themselves
He can’t pinpoint the very first song he wrote about hemophilia, but he knows it has been part of the journey that shaped everything that came after. One of his earliest attempts, written as a teenager, was a track called “Born to Bleed” — later reworked and released on an album of the same name in 2019. It includes a line about getting a thumb bleed from playing video games, a small, niche, specific detail that a lot of youth in the community will recognize instantly.
For this most recent EP, the first song he wrote was called “Limper” — about the connection he feels with others who live with a bleeding disorder. It ends with a line that’s become something of a thesis statement for the whole project: “the missing parts are all of me.”
“The missing Factor VIII has defined me in so many ways that I’m only beginning to realize now,” he told us. Writing that song alone was enough to convince him there was a lot more to say, and he’s already planning a second volume of the project.
He’s also touched on the topic of Hepatitis C and HIV — subjects that carry heavy weight in this community, tied to Canada’s tainted blood era. We didn’t push on the details, but its presence in his discography speaks to how much of the community’s shared history has made its way into his writing.
What He Hopes People Hear
When asked what he hopes someone else with hemophilia takes away from his music, his answer was simple:
“I hope they get something from it. I hope they can find some sort of shared experience and companionship — that there are others out there working through the same issues. That there’s a sense of hope.”
He’s aware that a lot of his writing comes from a hard place. “A lot of times when I write about hemophilia, it’s often something bad, and I feel it’s sometimes through a negative lens,” he admitted. “But I try to include some hope that things are going to be better, and the future is going to be better.”
For a long time, he says he wanted nothing to do with his hemophilia. He wanted to ignore it. Getting involved in the community changed that. It’s shaped who he is, and he says he wasn’t ready to accept that for a long time. That struggle for acceptance, more than anything, is what these songs are about.
His EP (as well as the rest of his discography) is free to stream, listen to, and download! OK LIMPER | Cleaven Pagani
