Studying My Way Through Recovery

What do you do when your life is turned upside down by a brain injury? When you’re still running a household, caring for two kids, trying to eat well, finding time to rest, and somehow keeping up with a brand-new puppy?

Apparently, you go back to studying. It sounds absurd when I write it all down, but that’s exactly what I did.

About a year after my stroke, I started seriously thinking about how the brain works. At first this was mostly me wondering what on earth was going on in my brain.  In the first six months I hadn’t even been able to read at all, so the idea of really getting into the nuts and bolts of the brain and its workings felt faintly farcical. I was still learning my new limits, and whether they were the sign of a bad week, symptoms that would one day disappear completely, or just my new state of being.

But at the same time, I was increasingly interested in building digital tools for stroke survivors. I wanted to create practical things. Useful things. Real resources that could be helpful on the road to recovery.  The tools I had needed but couldn’t find.

The problem was that every conversation I had about this idea stalled at the same point. Who were the experts? Where was the clinical backing? Who had the credentials?

Apparently, having had a stroke didn’t count as expertise. Neither did actively rehabilitating my own brain. My lived experience was definitely interesting, compelling, even, but not what was needed. I was firmly rebuffed at every turn.  While my intentions were admirable, I needed an ‘expert’ on board to give this any kind of credibility.

So I decided to become one.

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This definitely wasn’t a decision made lightly, or with particular bravery. It pragmatic rather than heroic. If credibility was the barrier, then the simplest way through was to get some for myself. I was already fascinated by neuroplasticity and had been spending an inordinate amount of time reading research papers that I only partially understood. Formal study was the logical next step, even if it was also slightly terrifying.

And I can report that neuroscience isn’t easy. It’s dense and unashamedly academic. The research is vast and the language is impenetrable. Even with a technical background, I’ve spent plenty of time staring at papers wondering who exactly they were written for, because it clearly wasn’t anyone in a hurry, fatigued, much less dealing with a brain injury.

What struck me early on wasn’t just how much research already exists, but how inaccessible most of it is. There’s an enormous amount of hopeful, genuinely exciting work being done, yet very little of it is readable by the people who would most benefit from knowing it exists. As a stroke survivor wading through dense academic prose is a little like wading through treacle.

But learning about neuroplasticity has changed how I think about recovery. Like many people, I’d erroneously absorbed the idea that the brain has a short window for healing and then closes up shop. That whatever you have after six months is what you’re stuck with. But the research tells a very different story. The brain is constantly adapting and reshaping. It’s unpredictable.  There is hope there for those of us suffering brain injury.

I’ve studied this – but I’ve also see it in real life. Some of the things that didn’t work in the early days have slowly returned. Other function seemed to be affected later in my recovery, and usually when I was tired or overstimulated. I’ve learned that progress isn’t a straight line and it certainly didn’t follow the timelines I’d been given. Studying neuroscience didn’t make any of this easier, but it did make everything make more sense.

When I set out to earn this degree, I knew it would only be possible online. Fatigue is ever-present in my life. Being able to manage my time, my energy and my surroundings can make all the difference. Finding an accredited course through King’s College London was a massive plus, as was the fact that I already had a maths degree. That technical background meant I wasn’t starting from absolute zero.

So, here I am.  I’m doing it.  Yes, it requires constant juggling. Study balanced with advocacy work, family life and the general unpredictability that comes with a brain injury is no easy ask. 

What keeps me going is the reason I’d started in the first place. I want to help close the gap between the science and the people it affects. Between research papers and real lives. Between what’s known in theory and what’s experienced in practice.

I’m not trying to turn anyone into a neuroscientist (except maybe myself!), and I’m certainly not offering medical advice. I’m interested in making the science clear and accessible. 

There’s still an extraordinary amount we don’t understand about the brain. But there’s also some really interesting science that can help stroke-survivors to understand their recovery.  Often it’s hidden behind jargon and academic convention, so all I want to do is open a small door into that world.

I don’t know exactly where this will lead, but I do know that stroke recovery is full of uncertainty, and too much of the science that could help is locked away from most of us.

I want to help bridge that gap - to translate research into something usable  and relevant to real lives. Not to offer answers to everything, but to make the questions easier to live with.