I met Tonye Aganaba, Vancouver’s own queen of soul in 2015, when I was a stressed out nursing student who had forgotten about her artistic side. Aganaba’s powerful voice floated towards my tender graffiti artist heart like a force, saying “girl, you need to wake up! Your soul is dying! Draw!” I was spending all my time studying anatomy instead of drawing. I began drawing her portrait on brown craft paper. This quick study became one of thirteen sketches to better understand people who live or play on the street: my first act of using art to understand other humans’ experiences. Tonye’s voice transforms pain into something beautiful. Her new album Something Comfortable is “an intentional and devotional endeavour inspired by her battle with multiple sclerosis (MS)”, a demyelinating disease of the insulating covers of nerve cells in the brain and spinal cord. She is chronically ill and chronically creative because of it. 

She now knows that everything she does is informed by pain, and takes her body into account before doing anything. Before she was sick, she felt like she was always hustling, but not always for the right reasons. It left her feeling empty. Living with MS means that everything can change from day to day. Some days she gets neuropathic pain, like piercing face pain, cluster headaches, or double vision. Those days, she chills in bed and watches loads of Star Trek and thinks about what the world would be like if she took it over from the comfort of her bed. 

The beauty in pain for this queen is that it gives her fuel to create with, and more importantly, grounds to disengage from certain things. When she was going through her diagnosis, she began unpacking what and who makes her truly happy and feel authentic. “It’s changed the content of what I make, because I started caring about different things and realizing what’s fundamentally important to me.” 

I concur fully with her opinion to not pity us because we are supposedly lesser. My practice of using art to unpack life challenges began on that summer day five years ago. A lot has changed for both of us since: we both now live with chronic conditions that can cause widespread pain.  

Tonye lives with multiple sclerosis, and I live with fibromyalgia and depression. Our shared power is how well we can both translate difficult experiences into soul-filled art with heart. For her, it’s music. For me, it’s graffiti. There is a certain beauty in pain; it transforms an artist’s soul. It forces you to grow and to own up to past trauma and just be authentic. Musically, Tonye has mastered transforming her life challenges into a vulnerable presence on stage that I can only liken to sitting in her living room, hearing her very essence compelling our limbs to groove, while passing a joint around if you so please. 

Tonye and I chatted about struggling with imposter syndrome as disabled humans, and how hard it is for others to feel for us, because no one can see the actual pain. People make remarks like “your life must be so difficult with chronic pain,” or “how can you even work, if you can’t walk some days?” I’ll always be able to think and draw, even if can’t walk! The nature of my pain is that some days, I can dance, but others I can barely get out of bed because of widespread nerve pain.

My practice as an artist took an interesting turn when I started my career as a mental health nurse in the Downtown Eastside. I began using art to unpack nursing challenges alone at home after shifts. When working with mental health clients as a student, I noticed art equalized the power dynamic between nurse and client. Creatively we could just sit, draw, talk, and build trust. I could ask difficult questions like, “can you draw the visual hallucinations you see for me?” or “are these visions nice to you or not?”

In 2013, I began writing and drawing daily after a case of systemic bullying and injury as a nurse left me completely floored and lost. I also was diagnosed with chronic pain and depression that year. During that time, art was the only thing I could trust, because I barely trusted myself or my body. I had lost all confidence because I was chasing something that wasn’t authentic: working three acute care jobs in three different hospitals to get ahead in the rat race. When I look back to my sketchbooks from that time, I now see my power: I was able to draw and write poetry from my darkness. It taught me to have more empathy. My art has taken me to places like Kenya, where in spite of living with excruciating overall pain at times, I spray painted stories about mental health with some of the most talented graffiti artists in Nairobi. We talked honestly about mental health with youth.

For me and Tonye, there is something universal about pain. It fuels our creativity, albeit in different but also very similar ways. Tonye invites you into her very being when she sings. You feel how she uses the universal experience of pain to build community: be it her experiences with racism in Vancouver, or how somedays her legs just go numb and don’t work. Your ears dive deep into the delicious sounds that her pain has informed. In September, I spent some of my last few days in Vancouver struggling with constant pelvic pain and feeling very low. I told her about that drawing from five years ago, and how I can still hear her sing on that summer day on Granville Street. I told her how I hope to film her story for a web series called Beauty in Pain. What we’ve both realized is, there is so much beauty in the world, even if it hurts to get out of bed. Tonye aims to “still show up in the world with her medicine.” That medicine is her music. I invite you to make it yours too, for whatever ails you. I guarantee you’ll be inspired. 

Listen to Tonye’s new record, Something Comfortable. Get tickets for Tonye’s upcoming performance at the Shadbolt Centre on November 28.

Karen Chan is writing a comic book and film based on her experiences with mental illness and chronic pain in Canada and Kenya. Please consider funding this Asian-Canadian storyteller and activist.