Photography by Patient Voice.
Photography by Patient Voice.
Photography by Patient Voice.

Nick's story

Polycystic kidney disease

Patient Voice sat down with Nick Ashawasega to talk about the intersection of intergenerational trauma, mental health, and chronic illness.

Hamilton, ON

My parents divorced when I was six months old, and I bounced around 13 different schools before I was even in grade seven. My childhood was a storm of trauma, anxiety, chronic illness, sexual abuse, and uncertainty about my own identity. My mother is Indigenous and my father is Persian, so I’ve been marginalized on both sides, called a drunk Indian in one ear and a terrorist in the other.

Looking back at all those trials and tribulations now, though, I’m grateful for the resilience that they taught me. Every challenge was an opportunity to grow and learn, whether I succeeded or failed. And I’ve succeeded more than I’ve failed. I’m only 34 years old, and I’ve worked my butt off to get where I am, but where I am is amazing.

I work full-time at the CBC and I also work — almost full-time, it feels — at NationTalk, Canada’s largest Indigenous newswire. I have a wife and two kids, and I own my own home. It’s hard, sometimes, to think about how I got here from the days when I was living in hotel rooms and putting water on my cereal because we couldn’t afford milk.

“The truth is that I’ve gotten to where I am because when things get hard, my trauma response is to work even harder.”

I think about my polycystic kidney disease and how disproportionately burdened Indigenous communities are with such chronic illnesses. I think about my ongoing mental health challenges — ADHD, PTSD, depression — and how entangled they are with intergenerational trauma. 

I think about these things, but I too rarely talk about them. Outwardly, I look like an effortless success story. Someone once said to my face that my success is proof that systemic racism doesn’t exist. That’s hard to swallow when there are still days that I look in the mirror and hear a voice saying, ‘You’re a piece of s--- who deserves nothing.’

The truth is that I’ve gotten to where I am because when things get hard, my trauma response is to work even harder. But working through trauma is hard, no matter what shape it takes.

I don’t want any young Indigenous person to ever look at me and think that their mental health struggles will prevent them from succeeding like I have. We succeed despite our challenges. We persevere through our trauma.

One day, when I was five years old, there was a bit of blood in my pee, so my mom took me to the hospital. When they diagnosed me with polycystic kidney disease (PKD), it was a surprise to everyone. There wasn’t really a playbook back then for raising a little boy with chronic kidney disease, especially in the Indigenous community.

It didn’t make things any easier that my living situation, like many Indigenous kids, was chronically unstable. We were always moving and it was difficult to maintain a routine around anything, let alone diet and health care. My one point of stability was SickKids. Whatever was going on in my life, I knew that I could always show up there and see a kidney specialist.

As a kid, I tried to hide my PKD. It was a source of shame, another way I was different. I saw people in my family deal with kidney issues. I remember my grandmother being on dialysis and then getting a transplant and being so ecstatic after, telling me, ‘I can finally pee again and it’s one of the best feelings ever.’ But then, a few years down the line, she was back on dialysis. Seeing outcomes like that, and dealing with my own mental health issues, I did a lot of thinking — but little healthy processing.

This is ubiquitous in Indigenous communities, not just with kidney disease, but with all kinds of chronic health conditions. There’s a lack of access to testing, a lack of education about these illnesses, a burden of trauma that makes it difficult to seek care, and persistent systemic racism in health care that makes it difficult to get effective treatment.

It was my mother and stepfather who helped me get my head on straight regarding my health journey, who taught me to plan around my PKD and succeed. Now that I’m a parent myself, I think a lot about how I can pass on my own knowledge. Indigenous people are storytellers, and I hope to inspire change by sharing my story.

I had a friend tell me about his grandmother with PKD. Told me how she lived to be in her 90s with no dialysis, no transplant. Now that’s my new benchmark. I’m gonna go for 100 — for my kids, for myself, and for my community.”