The Shoulder That Led to Brain Surgery

I told everyone I injured my shoulder one afternoon while signing to my mum.

Technically, I was right.

That afternoon, about four years ago, changed the course of my life.

But it was probably never the whole story.

I’d been signing my whole life. Conversations with my mum could last for hours, and I’d never thought twice about it. Signing was just another way I communicated. There was nothing unusual about that afternoon until my shoulder started to hurt.

At first, I thought it was just a temporary injury. An incredibly annoying and painful one, but surely it would settle down with time.

Because it was my right shoulder, I was nervous. But I also hadn’t done anything particularly reckless. My best guess was that my body was reminding me I didn’t sign nearly as much as I used to. It made sense. I’d moved out years earlier, and most of my communication now happened through my AAC device. I figured my shoulder just wasn’t used to that much signing anymore.

It didn’t feel like a life-changing injury.

It certainly didn’t feel like the beginning of brain surgery.

Over the next few days and weeks, I just kept living my life. The shoulder hurt every time I transferred, used my communication device, drove my wheelchair or reached for something. It was frustrating, but it wasn’t stopping me. I assumed it would settle down if I gave it enough time.

I have an incredibly high pain tolerance. Living with cerebral palsy means pain has always been part of my life, so my threshold for what counts as a “real problem” is probably a little different to most people’s.

Pain wasn’t new to me. I’d already spent twelve years living with a dodgy hip, and I’d learned that pain usually ebbed and flowed. I assumed my shoulder would eventually pull itself into line and let me get on with things.

If it had been almost any other part of my body, I probably would have learned to live with it.

But this wasn’t just another joint.

My right shoulder was my independence. It’s the only limb I have useful control over. Everything I do depends on that arm.

At the time, I was living with as little support as I possibly could. I was determined to be independent. Most people with disabilities know how that ends.

It never really got a chance to rest. At most, it had a few hours while I slept.

That would be enough.

Right?

I grew up hearing “harden up,” and I took that lesson seriously.

For twenty-two years, that was my response to pain. You complained while it was unbearable, then you shut up about it because life moved on and nobody wanted to hear about it anymore.

So I did what I always do. I put my head down and kept going. Even when my shoulder was making me nearly cry, stopping and admitting that the life I’d built was no longer sustainable because of one little joint just felt weak as hell.

At the time, I was studying while trying to work full-time. I loved being busy. I’d finally built the life I’d been dreaming about for years, and I was only just getting started.

Losing the use of that arm was, and still is, simply not an option.

After a few months, it became obvious it wasn’t getting better on its own. So I started with massage and physiotherapy because that’s the sensible treatment order.

We already knew a massage therapist through our support network, so I started seeing him regularly. It helped temporarily, but never enough to solve the problem.

Then I linked in with a physio to strengthen my shoulder, hoping that would finally fix it. I’d commute my way to the gym, which put even more strain on my shoulder unless I decided to walk or catch a taxi. The walk wasn’t the safest route for someone in a wheelchair, and taxis are expensive. Getting there and back became an ordeal in itself.

Managing an injury on the only limb I can rely on is one of the many aspects of disability that almost nobody talks about.

Nothing made a difference.

Until then, it had never crossed my mind that my shoulder might stop coping. I’d relied on that arm for absolutely everything since I was a child. Surely, if it were going to give up, it would have done it years ago. This had to be temporary. I kept waiting for the day I’d move it just the right way, and everything would click back into place.

Wrong.

So very wrong.

I still believed I was dealing with a stubborn shoulder injury.

I didn’t know I was about to spend the next year in physiotherapy clinics, doctors’ offices and radiology departments, desperately searching for an explanation.

Most of all, I had no idea that the shoulder I thought I’d injured was about to lead me to brain surgery.

I’d been diagnosed with bursitis after an ultrasound, so I was put on anti-inflammatory medication and referred for a cortisone injection. Finally, there was an answer. It wasn’t a particularly exciting diagnosis, but it was something we could treat. I genuinely thought we were on the home stretch.

The anti-inflammatory medication actually helped far more than I realised at the time.

The cortisone injection, however, was the worst thing I have ever experienced.

The instructions were to keep my arm as still as possible for the next two days. For most people, that would have been inconvenient. For me, it was impossible.

My right arm wasn’t just my shoulder. It was how I transferred, drove my wheelchair, used my communication device and did almost everything else. There was no way to give it forty-eight hours off. Within a few hours, I was using it again because there wasn’t another option.

I remember thinking I’d probably ruined the injection.

Whether I had or not, it didn’t matter.

The pain never really went away.

So I kept going.

I continued with the treatments because I had to. I still had shit to do, no matter how much pain I was in.

After that, I just learned to live in constant agony.

Some days were manageable. Others weren’t. On the worst days, I couldn’t get through without a ridiculous amount of pain relief.

But I kept going.

I’d fought too hard to build an ordinary life. I was working and studying, just like the majority of people my age. I wasn’t about to let one shoulder take that away.

The problem was that nothing made sense anymore.

The bursitis should have been settling down.

It wasn’t.

Every treatment seemed to help for a little while before I ended up right back where I’d started.

Massage would ease it for a day or two.

The anti-inflammatory medication dulled the pain.

Physiotherapy made sense on paper.

The cortisone injection was supposed to be the answer.

None of it lasted.

Instead, I found myself collecting appointments instead of answers.

Physiotherapists.

GPs.

Specialists.

Scans.

Every time I walked into another appointment, I hoped someone would tell me what we’d missed.

Every time, I walked back out still in pain.

At some point, it stopped feeling like I was treating an injury.

It started feeling like I was chasing an explanation.

My shoulder became so fragile that one wrong movement could leave me in pain for days.

On New Year’s Eve 2022, I had an unfortunate incident that made me realise just how fragile it had become. I was out of action for two days because I was terrified of making it worse.

Over the next two months, my shoulder was killing me almost every minute.

But I was still going.

For my twenty-third birthday, the only thing I asked for was a break.

I’d spent the previous month working while studying at university, and all I wanted was to turn my laptop off on Friday afternoon and not switch it back on until Monday morning.

That should have been a red flag.

For the people who knew me best, it was.

The people around me during the day thought taking a weekend off for my birthday was perfectly reasonable. No one wants to work on their birthday.

But they didn’t know me.

I’d been on a computer almost constantly since I first gained the ability to use one. I had a business to run, university classes to keep up with and more ideas than hours in the day. Wanting nothing to do with my laptop wasn’t me taking a holiday.

It was my body giving up.

Mum saw it almost immediately.

After a long conversation, which I was far too sore to sign through—another massive red flag—we decided something had to change.

I couldn’t keep living like this.

I had been on track to get Deep Brain Stimulation before the pandemic.

Then I decided not to.

Then the world shut down.

Once the decision became entirely mine, I never followed through.

Now, though, my shoulder was forcing the conversation.

I was in so much pain that I could barely function, and I knew it wasn’t going to get better unless I had surgery on something.

The question wasn’t whether I needed surgery anymore.

It was where.

Did I operate on my shoulder and spend months recovering, hoping we’d solved the right problem?

Or did I finally address the reason my shoulder had reached breaking point in the first place?

Brain surgery was the only option we thought would let me keep functioning afterwards. I’d always known I’d probably have Deep Brain Stimulation at some point in my life, so if I was going to have surgery, it made sense to make it the one I’d always known was coming.

Looking back now, I can see that afternoon for what it really was.

I thought I’d injured my shoulder while signing to Mum.

In reality, I’d just discovered the first domino.

I’d spend the next year chasing answers, trying treatments, collecting scans and convincing myself that if I just found the right specialist, the right exercise or the right injection, everything would go back to normal.

It never did.

When I finally chose Deep Brain Stimulation, it wasn’t because I suddenly became brave.

It was because I’d run out of ways to keep pretending my shoulder was the real problem.

The surgery itself is a story for another essay.

I've already shared the story of how I decided to have Deep Brain Stimulation. You'll find it below.