Auckland poet, author and musician Dominic Hoey (aka Tourettes) has been reflecting on his losing battle with a degenerative bone disease.
Once a boisterous, physical live performer, he is now a prisoner in his body.
Hoey's new short film #Losing from Loading Docs on Vimeo is screening as part of the Loading Docs 2017 series on The Wireless.
In Hoey's new theatre show about his disease Your Heart Looks Like a Vagina, he uses his poetic talents to describe what it is like to suffer from ankylosing spondylitis.
What are the symptoms?
"I can't move my neck really and had really severe pains in my back and you get quite bad brain-fog, you forget people's names who you've known for years and things like that … but pain is the main one."
Hoey says he's currently in remission and his condition is stable – although not improving.
"It's very gradually getting worse, I'm shrinking. And my partner's six-foot, so she hates it 'cause I was already shorter than her!"
Ankylosing spondylitis is an autoimmune disease which inflammation.
"My body thinks my bones are a foreign body and is attacking them, it means my bones are fusing.
"Now I can walk around and sleep, which I couldn't do before, because the pain was really severe and you take so much opioids you're just high all the time. You don't really know what's going on... It would be hard to do something like this, for example."
He puts the remission down to a new drug he's taking and some lifestyle changes.
"I started taking Humira, a full-on drug. It'll quite possibly give me cancer later in life but it's stopped my body attacking itself. I also changed my lifestyle, cut out drugs and drinking and fixed up my diet … started doing yoga."
It has been a very creative time for Hoey. Since his ilness, he's published the novel Iceland and two volumes of poetry.
"I started the novel before I got sick and then was bed-ridden for six months to a year, so that gave me a lot of time to work on that. A lot of writers talk about how it's really arduous and painful, I really liked it."
While he was writing the novel, poems were also spilling out, he says.
"Poetry is like songs – if you don't get them out in a certain amount of time they kind of die."
