A single moment was all it took for our world to be seismically changed for ever. In 2008, my husband, Simon — a relentlessly, even irritatingly, healthy 38-year-old musician and part-time construction worker — fell backwards off an unsecured second-storey scaffold on to a stone floor, suffering catastrophic injuries to his brain and spinal cord.
Rushed to hospital by air ambulance, the head neurosurgeon later told us that when Simon had arrived in his operating room he was ‘half way through death’s door’. Placed in a medically induced coma, his parents and sister joined me in rotating four-hour shifts at his bedside.
After three weeks, Simon defied expectations by waking from his comatose state.
Doctors had removed the bone on the left-hand side of his skull to make room for the swelling in his brain and, while we waited for the swelling to diminish, it was stored in the hospital freezer until it could be replaced.
That wasn’t all. Simon had severed his spinal cord roughly in line with the bottom of his ribcage — meaning he experienced no movement or sensation below his waist, and had no control over his bowels and bladder; his left arm was weaker than a newborn’s; he had no hearing in his right ear — and had trouble swallowing and sitting upright for more than 30 minutes.
Kara Stanley with her husband Simon, who in 2008 fell off an unsecured second-storey scaffold, suffering catastrophic injuries to his brain and spinal cord
At the time, Simon and I had been married for 17 years and our son, Eli, was 16. Our world had been shattered. It was immeasurably difficult to imagine picking up the pieces and re-assembling our fractured lives.
So it might shock you to hear that Simon’s paralysis was not the worst consequence of his accident.
In reality, the hardest thing was his pain. A chronic, constant, spasming pain that, even after a decade, saw him wail in agony through the night and made him reliant on opioids — specifically hydromorphone, generally only recommended for long-term use for pain caused by cancer.
Yet even with these potent painkillers, a simple touch of my hand or my head resting on his shoulder was often too much for him to bear. His broken nights and resulting fatigue severely limited his ability to work. Having dinner with friends was generally more of a commitment than we could make.
We both despaired. After one terrible bout of pain shot through his body, Simon told me: ‘When it’s this bad . . . It makes me think it’s nature’s way of saying I should never have survived my injuries.’
Simon is not alone. A conservative estimate suggests 20 per cent of the global population live with chronic pain.
Yet sadly, most people will be treated by physicians who do not have specialised training in pain medicine. The average number of hours dedicated to pain for the average medical student is just 13 in the UK.
Little wonder then that, while we eventually negotiated a kind of peace with the many permanent consequences of Simon’s injuries, we were lost when it came to addressing his pain. We felt locked in a soul-grinding cycle of failed interventions — from intense physiotherapy and acupuncture, to using a TENS machine diligently and three separate nerve blocks (where anaesthetic is injected into nerve roots to numb them).
When Simon’s spinal cord was severed his nervous system began to adapt, becoming more reactive to any perceived threat
However, accepting the pain was unsolvable was equally complicated: surely a prerequisite of getting better was a belief you could get better.
So we set ourselves a task: a year-long experiment where we hoped to conquer Simon’s pain.
Everything was on the table: from more traditional medical interventions such as nerve ablation (where nerve cells in the lower spine are burned away), to essential oils and dietary changes. When I suggested this project in 2019, I knew Simon wasn’t keen. After more than 20 years of marriage, I could tell what he was thinking: ‘Your big plan will mean a boatload of work for me and a lot of flaky stuff like guided meditations and increasing our daily dose of fermented foods.’ But we had to try.
In the process, we found that his pain’s ‘cause’ was highly complex. Given the extent of his injuries, it’s reasonable Simon would be in some pain. When the accident first happened, we were hopeful that, as he continued to heal, it would fade.
For those first few months out of hospital, it seemed that hope was not unfounded. Back home, Simon had weekly physio sessions. Slowly, the ability to play guitar with his sleepy left hand returned. Sleeping ten hours every night, he woke every morning stronger than the day before.
Pain was an issue, but just one of many. Simon coped with it, aided by small doses of hydromorphone.
Then, a few weeks after we marked the first anniversary of Simon’s accident, a procedure at the podiatrist led to his right big toe developing the flesh-eating disease necrotising fasciitis, which was turbocharged by the antibiotic-resistant superbug MRSA. After three months of IV (or intravenous) antibiotic treatment for this infection, Simon’s pain suddenly escalated. While I was cooking a roast one Sunday, across the room, he cried out, a baffled wail that increased in pitch and intensity. His hips and lower back were racked with pain.
Urgent scans revealed nothing. When months later the infection resolved, no concrete medical problem existed for doctors to fix. But still the pain raged.
Our GP suggested a higher dose of hydromorphone, which helped, but only minimally. Simon took it at night, when his pain was worst. His dreams became hallucinatory. Convinced that painful electrical surges in his hips were related to various electrical devices, he would wake me, requesting I check his computer or stereo, believing their circuitry was shorting, causing his pain.
You might wonder how he could feel pain in his hips if he was paralysed from the waist down.
Doctors now know this type of pain is a potential outcome of spinal cord injuries. But it’s complicated because it’s a creation of arguably the most complex thing in the universe: the human brain.
Initially, Simon was affronted when I brought this basic maxim of current pain research to his attention, violently rejecting the idea that his pain was somehow imaginary.
But saying pain is a creation of the brain is not the same thing as saying it’s imaginary.
Instead, it means that pain is your nervous system — your brain, brainstem and spinal cord — alerting you that something is wrong. Different parts of your body are constantly sending alerts to your brain for interpretation. If your brain decides there’s a credible threat of harm, it will create pain. Real pain.
This is true even if your brain is being bombarded with faulty or inaccurate information.
Overloaded with danger signals — whether caused by excessive stress, prolonged fear or inflammation — the brain will amp up a pain response, even in the absence of actual threat.
So pain, for Simon, was no longer a symptom of an underlying physical problem, but had become the disease itself, the consequence of a damaged central nervous system wildly misfiring after being strained by so much physical and mental trauma. When his spinal cord was severed, changes occurred within his entire nervous system, not just at the original site of injury.
When this pain storm didn’t stop, his nervous system began to adapt, becoming more reactive to any perceived threat — and when a certain path is travelled frequently within the brain, it becomes more automatic. ‘It’s like my pain pathway used to be a dusty, barely travelled country lane,’ Simon said. ‘Since my accident it’s become a busy motorway.’ The challenge in ‘unlearning’ pain is to block that traffic.
Backed by research, we embarked on a plan to reduce the ‘pain traffic’ in his brain by consciously countering episodes of pain with a non-painful stimulus that promoted a sense of safety and/or pleasure.
It sounds feeble, but listening to pleasant music, deep breathing, and focusing on happy memories when in pain can all help slowly ‘rewire’ the brain.
Kara and Simon pictured before his fall. At the time of the accident the couple had been married for 17 years and their son, Eli, was 16
First stop, we invested in a device called the iom2 — a ‘biofeedback’ device similar in size to an iPod, costing around £300.
It connects to an online app that provides a series of mindfulness prompts, accompanied by vivid images of landscapes, while a sensor attached to an earlobe or fingertip measures something called heart rate variability, or HRV — the lapses of time between beats of the heart.
This physiological measurement gauges the overall resilience of the nervous system, indicating how easily a person can move back and forth between ‘fight-or-flight’ mode and a calmer state. The lower the HRV score, the more stressed the nervous system.
Simon was fascinated to discover that he improved his HRV when intentionally focusing on his breath. He began employing this breathing technique in painful moments.
At night, we started using a diffuser with peppermint oil, as the scent has been shown to help block substance P, a brain chemical associated with pain.
We bought a Dreampad, a pillow that hooks up to your phone or iPad, costing around £100. Gentle vibrations accompany music being played through the pillow, triggering a relaxation response in the nervous system.
We picked our bedtime music with guidance from Dr Michael Moskowitz and Marla Golden, co-authors of Neuroplastic Transformation: Your Brain On Pain, who write: ‘One beat per second is the frequency nerve cells use to slow down and stop constantly firing.
‘One beat every two seconds is the rhythm used by nerves in the part of the brain known as the hippocampus to release GABA [a brain chemical that produces a sensation of calm] into emotional circuits to calm anxiety. One beat every three seconds is the speed at which nerve cells fire when at rest.’
‘Oh boy,’ Simon, ever the musical connoisseur, said when he first heard the low gong of Tibetan singing bowls. ‘All those sounds are in [the key] F. I don’t know about this.’ Despite his apprehension, we both slept well.
After Simon stopped taking painkillers he was able to play the guitar for more than an hour and even gave virtual music lessons
Surprisingly the most effective tool to interrupt the pain was . . . maths! I would ask Simon to solve random double-digit multiplications sums. We discovered that, no matter how bad the pain, Simon can’t not answer a maths challenge. Although it didn’t take the pain away entirely, we were both impressed with how effective it was immediately — if briefly — in turning the volume down.
We adopted an anti-inflammatory diet, increasing good fats, leafy greens and nutrient-dense, plant-based foods, as well as reducing processed food and sugary treats, after I discussed the topic of inflammation with Tor Wager, the director of the Cognitive and Affective Neuroscience Lab at Dartmouth College in New Hampshire.
‘It’s a hot topic these days,’ he told me, explaining some of the interesting correlations linking inflammation to trauma, pain, depression and chronic illness.
An anti-inflammatory diet helps to reduce ancillary stress, the kind of stress that can easily accumulate and amplify pain. Every morning Simon wrote in his journal, noting everything from to-do lists to the level of his pain and its impact on his day.
For Simon, the prospect of a root canal was roughly as appealing as an exercise class. Still, the science was clear: exercise is good for you.
Regular movement promotes resilience in both muscle and connective tissue and circulation of both blood and lymphatic fluids, which in turn boosts the body’s healing and immune processes.
We started off just floating in a small pool, which caused an initial spike in pain. After a month, though, he was up to ten minutes of independent swimming.
He then embraced basketball, using the freestanding hoop we bought our son for his tenth birthday, and Qigong — gentle movements with breathing exercises.
Simon’s confidence was so bolstered he tried paddleboarding, using a board wide enough to accommodate his wheelchair, with side pontoons for stability.
All this helped — but eventually we had to ask whether it would all be more effective if Simon were opioid-free. In the short term, the hydromorphone helped Simon gain a small measure of control over a largely uncontrollable experience. But as time went on, the pills became less effective.
New research shows this isn’t uncommon — and that not only do opioids have the potential to prolong chronic pain, but might be key in how pain becomes chronic in the first place.
Studies by Adelaide Medical School and the University of Texas are investigating the premise that, when taken over long periods of time, opioids have at least two simultaneous and opposing actions: reducing pain via opioid receptors, but also increasing pain through pro-inflammatory pathways — meaning that over time the nervous and immune systems potentially become more sensitised to pain.
This felt at least partially true to Simon’s experience. So, after several months of trying other things, including a failed nerve ablation, he experimented with weaning himself off his painkillers — slowly, under his doctor’s guidance.
He also began talking to his pain: ‘Fake news,’ he said, speaking directly to the spasms travelling through his paralysed limbs. But it was hard work.
Ironically, the outbreak of the pandemic gave him the final push to make a powerful change.
Freed from the responsibilities of his job, Simon decided to stop taking painkillers completely.
The first three days passed in a haze. His sleep was erratic but, amazingly, there was no significant increase in pain. By the third morning Simon’s digestion wasn’t so sluggish, and he’d shed some of his grey pallor.
By day four he was back to his pandemic-style working day — online meetings, virtual music lessons and more. After five days, he said he felt he was waking from an extended dream state.
After a week, he accompanied me and the dog on a morning walk. It was 9am. He hadn’t voluntarily been out of the house that early in a long time.
A burning activity took over him. He played guitar for over an hour, sorted out old piles of paperwork, went for a swim and a second walk, and then played basketball with me in the garden. It was astonishing.
Today, while Simon’s pain remains, he no longer takes any opioids.
Optimistic and clear-headed, he has stuck to his routine of Qigong, journalling, music-making, movement and mindfulness. And both of us endeavour to keep this motto in our minds: ‘It’s what you know that cures; it’s who you are that heals.’
- Adapted from The Pain Project: A Couple’s Story Of Confronting Chronic Pain by Kara Stanley with Simon Paradis, published this month (Greystone Books, £15.99).
