All I can do is keep my eyes shut and hold my body straight as sea water crashes and roars around me.
I’m bodysurfing with my partner, Gem, at a small beach on Australia’s east coast. My technique isn’t great, and I tumble into the shallows. Shakily, I get up, and through stinging eyes catch sight of Gem, still riding the wave, her blue wet suit glinting in the sun, and pinkish-white feet drifting sideways in the water. On and on she goes, graceful, almost weightless, the ocean seemingly at her command.
Gem pokes her tongue out at me when she’s finished, and charges back into the surf. I admire her. Not long ago, Gem couldn’t walk. Struck down with crippling chronic pain, she could barely even feed herself, let alone bodysurf. She had developed neuropathic pain, caused by the demyelination of her peripheral, central and autonomic nervous system.
Demyelination can be imagined as the body attacking itself. Myelin, Gem explains, is a sheath of fat around nerves, “like the plastic coating on an electrical wire”. When myelin is stripped away, electrical signals that normally travel along the nerves escape, creating the sensation of pain.
Gem started experiencing the pain in her feet. Soon, pain spread to her legs, hands, arms and the rest of her body. “Everything was agony,” she says. “If I was at rest it was agony because my muscles were locked and there was constant pain from nerves sending pain signals all the time. It’s very hard to walk and move because your muscles are being traumatised, basically.”
Gem came close to being bedridden. Typing on a computer was impossible. Phone conversations were brief. Running and cycling, two of her favourite forms of exercise, so important for stress relief and spending time with friends, gone. Bodysurfing, loved since childhood, something she no longer even thought about.
Fast forward five years later, and after much dedicated physical therapy and rehabilitation, Gem has regained most of her health. And now, like many other people enjoying the warmer weather, Gem and I are talking about exercise.
Social media streams fill with ads about fitness, gyms and healthier eating. But the ways exercise and health are talked about, usually in overly simplistic ways, leave us feeling cold. For Gem, it’s a reminder of what she can no longer do, of her pain experience not being understood, of the lonely path she’s lived to survive chronic pain.
In Australia, 1 in 5 people experience nerve pain, back pain, arthritis, migraines or other forms of chronic pain. It is common and frustrating, generally lasting more than three months, and in some cases for years. Pain often persists after injuries like those from car crashes or playing sport. Changes in the nerves and nervous system of the body lead to sensory and other information continuing to be processed as pain – even if the person’s original injury has healed.
Everyone experiences chronic pain differently. Evidence suggests, however, that a multidisciplinary approach helps. For Gem, therapy required working with a team of health professionals, and slowing down. It was crucial to have a careful and measured pace in many parts of her life, including walking again.
They said, ‘The first thing we’re going to get you to do is stand in a hydro-pool’. And I could do that for ten minutes.”
Once Gem could walk a little in water, she progressed to doing a few squats a day in the pool, then began slow movements underwater. The exercise was important for recovering from chronic pain, but it was only increased carefully, with small, incremental steps.
The very first bit of exercise I did outside of the pool was I put my road bike on an indoor stationary trainer that I had. I put in on the easiest gear and I was able to pedal for two minutes. I nearly fainted afterwards.”
Listening to Gem describe the long period of slow and steady rehabilitation, not just to exercise again, but for getting through each day, the rhetoric of fitness-speak and marketing not only sounds empty, it starts to feel offensive. Chronic pain is an issue for many people yet there are not enough pain management clinics with help available.
I can book a fitness class or gym session with ease on my smartphone. I turn up with little notice for a work out where I’ll lift dumbbells or box until I’m stuffed. All I need to cope with are sore muscles and feeling tired afterwards.
But my partner, and so many others, need something different – to work with people who understand what they’ve been through. People who know that learning to cope with basic activities like walking might be the best goal. And I don’t think I’ve ever seen a Facebook ad promote help for putting one foot in front of the other.
I help Gem whenever I can with the management of her nerve pain. Driving Gem to work or to the local pool for a quick swim doesn’t take much effort on my part, but helps prevent pain by reducing the strain on her body. We ride our bicycles together when it’s warm, not for long, and lazily. A long walk in the bush is all we need to find respite and feel active after a long week.
What I love most though is when we hit the surf together. Gem has spent years building her confidence in the ocean again, and her passion is infectious. “To some degree I always carry this condition with me, but I don’t when I’m in a wave. It’s gone from being worried what the wave will do to me, whether it will cause me pain, to total freedom.”
I always thought bodysurfing was a poor choice compared to riding a surfboard. Watching Gem slide quickly down the smooth blue crests of wave after wave, unrestrained by pain, and home again in the ocean, I stand wonderfully corrected.
• Ben O’Mara is a Melbourne based writer and health worker