Mitch Crews’ Belt of Pain
Words by Ali Klinkenberg | Photos by David Troyer “At the time I didn’t want to make a fuss, so I’ve never really spoken to anyone about it like this.” Mitch Crews sits on a hazelnut vinyl couch, downstairs in Stab’s Gold Coast mobile office. It’s a muggy March night and Mitch and I are […]
Words by Ali Klinkenberg | Photos by David Troyer
“At the time I didn’t want to make a fuss, so I’ve never really spoken to anyone about it like this.”
Mitch Crews sits on a hazelnut vinyl couch, downstairs in Stab’s Gold Coast mobile office. It’s a muggy March night and Mitch and I are digesting a healthy, but substantial meal we shared at one of his regular haunts, and talking about a shared illness. The conversation was already flowing from a fun and breezy dinner, and one thing that’s undeniable in Mitch Crews is his vitality. Every word that skips out of his mouth appears to have his complete backing, and honest insight isn’t hard to come by.
Mitch was 19 when he woke up one morning with what he describes a “dead arse.” The pain proceeded to spread to various joints in his body and it was the excruciating pain in his wrist that forced him into surgery, and forced his doctors to find answers. They found ankylosing spondylitis (AS), a form of arthritis. It acts like any other form of arthritis, by causing the body to think something’s attacking from within. The body then creates white blood cells to counteract the intruder and sends them off to work.The only thing is, the body is perfectly healthy. When the white blood cells have to attack, they turn on the joints of the body and start attacking cartilage. It feels like your joints are stuck together with super glue, and every millimetre of moment evokes dull, lingering pain. You feel fragile, stiff and frail, and, permanently exhausted. How do I know? Because I was eight years old when I woke up unable to walk.
I’d come back from skiing in Austria (ah, the decadence!) and my family thought all the skiing falls were to blame. After a month of serious illness, I was diagnosed with juvenile rheumatoid arthritis in my knees, ankles, toes and my neck. I also suffered from uveitis in my eyes, which is an associated condition that sees white blood cells floating around your eyes doing damage. Most people think arthritis is an old person’s disease, and for the most part it is. It effects single joints in a mild form, and gets degenerately worse as time goes on. But when you get juvenile rheumatoid arthritis you get sick. Really sick, really quick.
The first five years after diagnosis was a smorgasbord of drugs and pain. I took high doses of the steroid Prednisolone, which caused me to put on weight, and cooked my immune system. When it was deemed unsafe to continue, I was forced to try other drugs. Methotrexate, that they also use to treat cancer, made me vomit religiously after weekly injections, and I eventually settled on Cyclosploren. Plus, I slept in custom-made leg splints, to stop my knees from seizing up over night, like Forest Gump. Constantly having to be goalie in soccer is a very lonely and degrading pastime. As an adolescent living with a serious illness you’re merely limping to keep up with the pack, and worrying about the consequences later.
Now, I’m medication free. And, I can surf. But I’m plagued by the damage to my joints and eyes. And, when the inevitability of old age does kick in, my joints are going to be fucked. Mitch and I are exactly the same age and at the same stage in terms of illness, and therefore are bound together in the rarity of unspoken understanding.
AS targets the joints of the spine, particularly the sacroiliac joint where the spine attaches to the pelvis. If left untreated it can cause the base of the spine and the pelvis to fuse, rendering the patient void of lower back moment.
“Think hunchback of Notre Dame,” says Crews. “When you see old people who are all bent and hunched over, chances are they’ve got AS.”
“The pain in my wrist was just unbearable, and the scans showed that there was almost zero cartilage left, it was just two bones grinding away.”
“When I was first diagnosed, the doctor’s bedside manner was just fucked. They didn’t understand what it meant to me as an athlete. I was like, ‘What’s the deal, can I surf?’ And they said, ‘Surfing!? What are you talking about? You’re going to be lucky if you can even work a proper, physical job.’”
As a kid, you’re not thinking about what this ailment’s going to mean for the remainder of your life. You want to know what you can do now. Can I surf? I’m supposed to be playing cricket this weekend, can’t you patch me up?
Traumatic experiences are, at the time, all about hanging on. You constantly hear phrases like, “You’re being so brave,” or “You’re such a fighter.” And it’s nice and all, but it means nothing, because in your mind you’re not being courageous. You’re just, well, hanging on; an instinct, of basic human survival. The young professional athlete, hobbling to a contest just to keep a “sticker on (his) board,” the school kid standing between the goal posts trying desperately to be an effective goalie, just so he can join in. It’s just survival, and at the time it’s tough, but it doesn’t necessarily hurt like you’d think. At lunchtime I’d get blood tests and injections in secret, petrified of my friends finding out something they wouldn’t understand. But that’s not the worst part. Hindsight’s what gets you.
Looking back and thinking to yourself, “You know what? That was a completely fucked part of my life, I wouldn’t wish it on my worst enemy,” is a very sobering experience. Crewsy remembers with vivid clarity the events that took place over the Christmas break of 2009 when his illness kicked in, and what it meant to him. In the middle of his junior career, right where futures (and contracts) are determined, Mitch was bed-ridden, unable to walk to the shops for a carton of milk.
“I just broke down,” he concedes. “I’d dreamt of being a pro surfer since I was a little kid, and had aspirations to be on the world stage… All of a sudden I was bed-ridden and didn’t leave my room. Mum and Dad were freaked out and worried. I sat around watching TV and played X-Box all day.”
Burying a rail this deep takes a considerable amount of strength. Doing it while battling a rare form of arthritis, as is the case of Crews, is a Herculean accomplishment.
Crews was referred to a specialist research clinic in Brisbane and put forward for a new drug trial. “The Prof said, ‘Look, we have this trial drug called Humira. It goes into your immune system and blocks out the proteins that cause the inflammation in your joints. It’s $20,000 a year, but if you take part in this three month trial then you’ll be able to do it for free for at least a couple of years if it works for you. For the first three months you’re not going to know if it’s the real drug or the placebo.’ So, I was paired up with someone else in the country, same condition, same age, and it’s literally a flip of a coin to see who gets the drug and who gets the placebo. That was at the end of 2009, and at that stage I’d had that many attacks that I was just fucked. I was like, fuck, sign me up, I would have done anything to just get things back on track. Or at least just get my life back on track, not necessarily even surfing, but just not to be living in pain.”
This brings to light the devastating reality of some medical treatments. The more cutting-edge the drug, the higher the cost. And for something new and shiny like Humira, the cost was through the roof. Crews was fortunate, but many aren’t. I too was lucky in that the NHS (National Health Service) in the UK administers free medication to everyone under 18. But the thought that only rich people can afford to beat an illness just seems wrong.
The term ‘miracle cure’ is a horribly problematic cliche, especially in the case of non-curable diseases, but Humira changed everything for Crews. “After my first injection I knew I didn’t have the placebo. I had a whole day of moving around, walked to the store, went for a swim and did all this stuff. At the time, I had the brace on from my wrist operation, too.”
“Every two weeks I’d have to go back up to the hospital to get my injection. I’d gradually feel better and after the third one I felt well enough to surf.”
“The doctors said, ‘Look, we can’t tell you whether you’ve been getting the drug or not, but just look at you.’”
The ability of modern medicine to get you back on your feet is remarkable. But the absence of pain doesn’t necessarily amount to the absence of disease. I’ve experienced the phenomenon with cortisone injections. I’d hobble in, the doc would shove a bloody great needle in behind my kneecap (the older you get the less anaesthetic you’re permitted, last time, poor moi, it was zilch) and once the initial pain subsides I’d bounce out in full swing. But, it’s not a cure, it’s just running repairs. Humira got Mitch back on his feet, but the side effect was that it butchered his immune system, and infection became a problem.
“Humira goes into your bloodstream and blocks the proteins that cause the arthritis, but it also blocks the healthy proteins. I had a cut that just blew up into this boil, I kept getting the flu, and was just unwell. My body didn’t know how to deal with this new medicine. So I was trying to battle these weird infections.”
Mitch entered the first two pro juniors of the following season, “just to keep a sticker on my board.” He was still struggling with infection and being generally unwell, but found momentum. “I got a second and a third in the first two events, and that was three months after my diagnosis.” In between fortnightly trips to get his Humira shots, Mitch won the Junior series.
A constant source of entertainment and inspiration, the good-natured positivity of Mitch has proved to be downright infectious to the friends he surfs with and the people he sees when receiving treatments.
He’s become the drug’s poster boy, and gets the shots delivered, Mr. Freeze-style, in a sealed frozen box to wherever he is in the world.
With age comes perspective, and illness forces you to grow up prematurely. What Mitch and I are left with is the daunting prospect of what our future health holds. “Lately I’ve been really conscious of it,” says Mitch. “Last year I made the tour and I struggled physically. I’m only 24 and I want to live like a 24-year-old. You know, I wanna party and drink and do the things that young people do. But that shit really takes its toll on me. Now I’m in a place where I’ve achieved so many of my goals that I just want to be happy and healthy overall, for myself. I’ve been thinking that I really need to set the wheels in motion on a serious plan to prolong my health. To make sure that when I’m 30 or 35, and I’ve got a little grom, I can keep up with them and surf and play footy or whatever. It’s a matter of keeping dedicated, and this is the year.”
“I’m just doing the majors this year and obviously, I want to be back on tour, and I believe that I surf well enough to be there, but it’s not my only priority. I want to be confident enough in my surfing to know that when I re-qualify I’m going to make heats and stay on there for a while. My maiden year on tour was such a shock. You go from surfing three-foot slop to 10-foot Chopes and you’re in a 30 minute heat and you’ve just got pounded, and you’ve got another one coming at you and you need a score. The adrenaline and emotions just fucks you. You’ve got to be so fit, even more so for me.”
Morning time is the worst for anyone with arthritis. Mitch wakes up with a “belt of pain” in his back and up the middle of his spine and is short of breath. He needs a steaming shower before he does anything, which can be an issue when he’s away on trips and getting hassled for the morning session. “I have six-month check ups and all the other people who I see in the clinic look at me and think I’m this amazing inspiration,” says Mitch. “They’re struggling just walking up stairs or opening a jam jar. They look at me and say, ‘How do you do it?’ That really puts my own situation in perspective.”
I visited my doc for one of my far too infrequent check ups. After entering into what I thought was a powerful monologue about the woes of living with this pain, the doc offered me a dose of retrospect.
“Well, Ali, you’re a success story.”
“50 years ago, children with your condition ended up in wheel chairs. Without the early detection and the new drugs that you’ve been given over the years you wouldn’t be walking into my office.”
Reality bites hard when she hits, and she always hits eventually. Hospital waiting rooms are a fine place for a good dose of perspective, and so too is a couch on the Gold Coast. Considering we’d just surfed all day, it was an easy nightcap for the conversation to realise things could be a lot worse. While the future of our health remains uncertain, one thing that cannot be denied is the efficiency of modern medicine. The prospect of having to be injected with Humira every two weeks for the rest of his life is not ideal, but the ever optimistic Crewsy has faith in the lab coat sporting wizards of medical research. “They’ll find a cure in the next 10 years for sure.” His hope is contagious, and while I can’t shake the inherent pessimism that lives in my heart, it’s sure nice to dream.
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