When Karen’s legs began to fail, she moved from denial to despair. In this personal essay she reflects on diagnosis, spinal surgery and the slow work of recovery, and the unexpected parallels between physical healing and learning to live after grief.
Losing my partner of 36 years had recently taught me something about how life can work. Sometimes, from nowhere, the worst thing happens and there is no getting better from it. Some things simply can’t be fixed, but you still have to get up and keep moving.
Which is perhaps why, when my legs began to fail earlier this year, my mind would eventually drift to the darkest possibilities. But that came later. At first there was denial. I told myself it was nothing.
I was spending a few weeks catsitting in Berlin, as part of my search for what my personal future might hold. It was the beginning of January and the streets were thick with compacted snow, the beginnings of layers of ice. They were gritted of course, but I noticed that my anxiety levels when walking on them were heightened in a way they never had been before. I blamed the increasing numbness crawling up my legs on the cold and kept plodding on, aware that a slip could lead to something no one over fifty wants: the dreaded fall.
But the trek up to my second-floor flat was undeniably becoming more of a struggle by the day until by the end of my two weeks there I was barely leaving the flat. The simple act of lifting my legs had become an almighty chore.
My return journey to England felt like some horrible endurance test, that peculiar state where you know something is deeply wrong but you still have to keep going until the journey reaches its natural end.
So I made it back and three days later I spent 40 hours in the local hospital A&E undergoing a series of tests. I had become something no one wants to be: an interesting case.
When I arrived, I was exhausted to the core. My body simply wanted someone to look after it, and I had clearly failed at the task, so I was ready to hand it over to the professionals.
By this point I could still walk short distances with what might have looked to an outside eye like confidence. A couple of hours later my balance was already starting to go, leaving me more than a little lurchy.
Possible diagnoses were being thrown around almost at random. The main symptom, the numbness, had begun in my right foot and worked its way up to the knee before beginning the same pattern on the other side, eventually reaching my upper left thigh. By this point it was moving at pace, and terms like Guillain-Barré syndrome were being floated with increasing seriousness.
In between seeing doctor after doctor, I sat in the airless neon-lit waiting room, Googling and texting in no particular order. Other patients came and went. By 1am I was exhausted and just wanted to be tucked into the bed they had promised me at about eight that evening.
By 2:30 I was finally under a slim cotton blanket in a room full of recliner chairs, noise-cancelling headphones on and beyond grateful for the cup of tea they eventually brought me before catching a few hours of sleep.
I’d made a buddy out of our shared trauma during the wee hours, and as we wiped the sleep from our eyes we smiled and shrugged in dazed bewilderment across the now-full room. A tea trolley bearing various familiar cereals appeared, and the porter pushing it was greeted like the best kind of old friend.
Over the next 24 hours I had an MRI, an ECG, numerous blood pressure checks, blood tests, and a nerve conduction study, the one where they send small electric shocks through your nerves while reassuring you that it won’t hurt. That’s as impossible as it sounds.
I have an existing rare degenerative neurological condition which complicated matters but ultimately proved unrelated. And so, still in the clothes I’d arrived in almost two days earlier, I was finally called in to see yet another serious-faced doctor. The MRI, which I’d had to be sedated for to avoid the claustrophobia, had solved the mystery.
My spinal cord was trapped between two vertebrae, inflamed, and deteriorating quickly. I needed surgery soon or things would get worse. The words “spinal surgery” and “double incontinence” don’t leave much of a choice.
So that’s what happened. I was swept erratically into the slow, initially baffling, frustrating but ultimately solid and effective system that is the NHS.
The next day I was an outpatient at a hospital fifty miles from my hometown, sitting with a young Greek surgeon who assured me his name was too incomprehensible to share, so I should just call him Harry. He talked me through the nuts and bolts and screws he planned to plant in my back. I asked for the idiot’s version, and he produced the model of a torso. I would never go through airport security without causing a fuss again.
He told me I’d be in surgery by the end of the week. The next day, having spoken to his boss, he called to say they were going to try a simpler procedure first: a laminectomy at T11/T12 to correct the stenosis causing the problem.
I became oddly protective of my poor little spinal cord as he described how inflamed and compressed it was in such a small space. By filing down a piece of bone and increasing the room around it, he explained, they could stop things getting worse and perhaps even make them a little better.
Again I was quizzed about my control of bowel and bladder, which added to the sense of urgency. This time I was told it would be two weeks, and to keep an eye out for any deterioration. By that point I knew exactly what that meant.
In reality the decompression surgery came four weeks and one day after that first visit to hospital. One operation was cancelled during that time because I had not been told of the importance of stopping blood thinners seven days before spinal surgery.
I tried to relax into the waiting period, using it to settle into my new house and turn it more fully into a home. In reality, though, much of my time was spent poking at my legs. How far had it spread? Was I numb here? Was I numb there?
Google, Google, Google.
The NHS machine had properly kicked into action and I received phone calls almost every day keeping me informed. I went for a pre-op assessment. I spoke to physiotherapists about what might happen afterwards and what help they could offer. My GP was only an app away.
At first I was still trying to walk, but my stamina declined quickly, my balance was shot, and apart from the occasional three-minute trek around the block I became increasingly housebound.
Housebound, anxious, and watching your nervous system misbehave is quite a combination.
I live alone, and despite having family nearby the concept of time began to blur. I slept on the couch, waking each morning to a largely numb lower half and then prodding and pinching to see what feeling I still had. When I was awake I wandered around the house making sure everything was at waist height to minimise the need for bending after surgery, packing and repacking my hospital bag like an overeager expectant mother.
I read every horror story online, haunted the relevant forums, and studied statistics like a mathematician. Having already had one operation cancelled, I assumed it would happen again. Throughout that month-long waiting period it rarely crossed my mind that things might actually be okay.
I’m now on day 18 after the surgery.
The call eventually came, despite my quiet conviction that it would somehow be cancelled again, and the system that had felt so slow and uncertain suddenly moved with surprising efficiency. I spent two nights in hospital. The operation itself went smoothly, I’m told, although at the time I was far too busy surrendering to anaesthetic and morphine to form much of a judgement.
The first few days afterwards were not elegant. Dignity disappeared entirely and pain became a fairly dominant feature of daily life. But morphine and exhaustion have a way of smoothing the edges of things, and before long I found myself in that curious territory that follows any crisis: the moment when you realise you have survived the worst of it.
Recovery, it turns out, is a strangely tentative business. Improvements arrive in small, almost suspicious increments: a little more strength here, a little more feeling there, a walk that lasts a few minutes longer than the day before.
Some days I test my legs the way I once poked at them in fear, checking whether the numbness had spread. Now I’m looking for something different – signs that things might be returning rather than disappearing.
Grief taught me something difficult about life: sometimes the worst thing happens and there is no getting better from it. That knowledge doesn’t disappear simply because a surgeon has created a little more room for a struggling spinal cord.
But day by day, almost imperceptibly, things are shifting. A little more strength here. A little more feeling there. For now, that seems to be enough to keep me moving forward.
Bardo Burner 