HemAware “Takes 5” with people in the bleeding disorders community and spotlights their efforts with just five questions. Here, we talk with Te Whainoa Te Wiata, who goes by the name “Whai” (pronounced “fye”). He’s a guitarist and singer for the popular New Zealand reggae band Cornerstone Roots. Whai, 27, of Auckland, New Zealand, has severe hemophilia A.
How did you get into music?
My family is very musical. I grew up with my grandparents, and my grandfather is quite an amazing guitarist. I was always around guitars and music. It clicked with me. The first style of music I got into was flamenco. I’ve been playing that since I was 14. There aren’t many people in New Zealand doing that, but it was just something about the rhythms and the discipline—and the rawness—of the music that really caught me.
My grandfather showed me my first three chords, and I just went on from there. When it came to flamenco, my cousin was mucking around with the style a little bit. He mentored me through the whole thing. I started gigging (playing gigs) at 14. Once gigs slowed down, I started looking into other genres of music. I started playing in cover bands as a singer. Then, last year, a mate who plays drums for me asked me if I wanted to join Cornerstone Roots as a guitarist. The band is known in New Zealand, and we’re slowly getting a name in Europe.
Did having hemophilia and being unable to play contact sports as a kid affect your decision to play the guitar?
Well, I never listened when I was a kid. Even though my cousins and my friends and I knew I wasn’t meant to play contact sports, I still did. The sport in the town I grew up in (Ngaruawahia, a small town just north of Hamilton) was rugby league. It’s a really rough contact sport. There’s rugby, there’s rugby union—what most people know New Zealand for—and then there’s rugby league, which is a little bit more confrontational. I spent a lot of time injured, with constant bleeds in my joints.
I would get bored. We didn’t have PlayStation® or Nintendo or anything like that back in those days. When my grandfather played on his guitar, I really enjoyed it. He was the main male figure in my life, and I wanted to be like him, so I picked up the guitar as well. It helped me get through a lot of bleeds, especially in hospital. I put my mind to it because it would take away the pain.
Cornerstone Roots released a new album in October 2010, Future Is Now. Tell me about that and touring with the band.
I only did a few songs on that, maybe two or three, because most of the album was already recorded by the time I joined. A lot of the stuff I’ve done with them is all live. We got back in September from Europe. We mainly tour in New Zealand and Australia.
Is your hemophilia affected by being a musician on tour and standing on stage all night?
A lot of the time, I sit down on stage. On a lot of cover gigs, I am the front man, and I sit on a stool and play my guitar and sing. Most of the Cornerstone gigs were only an hour long. I would move around a lot on stage anyway, so there wouldn’t be much pressure on my legs. I do plan ahead, though. There’s always a seat behind me just in case. Anything can happen on stage, so you need to be prepared for most things. I have three target joints—both my knees and my right elbow.
I have a real good shot at physio (physical therapy) this year. Before, I’ve kind of only done it halfway; I hadn’t fully committed myself to anything. I’ve left Cornerstone Roots temporarily—I’m still in it, for the odd gigs—but at the moment, physio is my focus for the year. I found when I was in Europe on tour, if I was a little bit fitter and a little bit more flexible and a little bit stronger in my legs, the tour would have gone a lot smoother. So, I had to make a decision.
I’m still in the band and playing with other bands, but Cornerstone Roots wants to go overseas for another nine weeks. It’s a bit too long if I want to focus on my body. I’m sick of limping. It’s constant. I’m sick of being on morphine. My focus is physio so I can go on and pursue music. I don’t want to be in a wheelchair when I’m 40. I want to be walking. I’ve got two kids. I want to go walking with them. I’ll never run again, but I think quality of life ends up being your drive when you get to the point I am at the moment.
What would you say to other young men with hemophilia who may get discouraged sometimes?
Listen to your doctor. I really suffer now. I’m just starting physiotherapy. Before this, I was on morphine constantly. All I needed to do was listen. It’s really easy to avoid this: Listen to the experts about sports; the recovery process after a bleed; if you’ve got a leg injury, the amount of time you should spend off your leg; how to manage a target joint; how to manage bleeds.
I don’t really like needles, but I still have to do the prophylaxis. When I don’t do it, when I do get lazy, my body feels it. You’ve got to weigh whether 10 years from now, you want to still be walking without a limp or whether you want to be walking on crutches or be in a wheelchair or constantly have to go to physio, like I am at the moment. You can really avoid that. It’s hard in a country like New Zealand, which is quite a confrontational country. The town I grew up in, either you fight or you move out. That’s just the way it was in our town; fighting is second nature to me. But it can be avoided if you drop your pride.
Cornerstone Roots at the 2010 Uprising Reggae Festival in Bratislava, Slovakia (Whai is in the purple T-shirt):
Whai and Cornerstone Roots share a little Māori culture with fans at the 2010 Uprising Reggae Festival in Bratislava, Slovakia (Whai is in the purple T-shirt on the far left):