I Wasn’t Ready for Brain Surgery
But it was the best decision when I (kinda) was
This week marks the three-year anniversary of my transformation into a cyborg.
At least, that’s the fun way to say it.
Really, a team of neurosurgeons drilled into my skull, implanted a couple of electrodes deep inside my brain, and ran a pair of wires to a battery pack in my chest. A day later, it was switched on and started sending electrical pulses into the parts of my brain responsible for movement.
“Cyborg” is shorter and a lot more fun.
On June 8, 2023, I underwent Deep Brain Stimulation surgery. The goal was to reduce the dystonia caused by my Cerebral Palsy. However, at the time, my primary motivation was much simpler than that.
My right shoulder hurt. And that’s the only body part that works.
Years of involuntary movement and constant use had left me with bursitis that was making everyday life miserable. I wasn’t lying awake dreaming about reducing dystonia. I just wanted my shoulder to stop hurting so I could get back to living my life.
Looking back, it’s tempting to tell this story as though a shoulder injury eventually led to brain surgery. That’s certainly part of it. By the time I underwent DBS, my shoulder was one of the biggest reasons I wanted it.
But the truth is far more complicated than that, and my story begins years before that day.
I first heard about DBS when I was about to finish high school, I think. Maybe it was earlier?
I’d known of a woman like me for years who had undergone the surgery and achieved incredible results, although I hadn’t met her in person yet.
I finally met her in 2017 at a conference and saw how much control she had over her body.
In late 2018, I was in the middle of my first very hyper dystonic period and no one knew why or how to stop me. My legs were stiff and I had no clue how to control them for longer than about five seconds. The workers I had at the time were older women who had back problems and all those lovely health issues that come from caring for people for years.
I was eighteen and trying to make decisions about treatments that I knew could eventually lead to brain surgery, with very little information and even less understanding of what those decisions would mean for my future.
I was not ready.
Looking back, I’m fairly certain I was just going through puberty while also putting my body through an unreasonable amount of stress, and I had a support network of people who were quick to react and didn’t really understand Cerebral Palsy. No judgement here, though, I’ve only just started understanding it myself.
When I was starting to think about treatments for my dystonia, I first wanted to try CBD, knowing that it would have been the easiest and least invasive treatment.
Luckily, my GP was sceptical of CBD and instead wrote me a referral to my first neurologist.
I went to my first neurologist appointment, and he basically laughed at the CBD idea, saying it was just going to be a detour from the inevitable surgery. Instead, I was put on a medication called Artane.
Boy, oh boy, if we thought my body was uncontrollable before that appointment, we sure as shit were not prepared for this medication.
Artane was supposed to reduce my involuntary movements, but for me, it did the exact opposite.
After about a week on Artane, my movements worsened to the point that the tricks that I’d used to kind of control my body for the last eighteen years had no chance of working.
The fun thing about being young and stupid is that doing things to keep certain people in your life seems like a rational decision.
The person I loved most in the world started really struggling to provide my care because I just never stopped kicking. Every change became a wrestling match that ended in tears or yelling or her turning away from me because she just couldn’t do anything without getting hurt.
Since the CBD was a no-go and the Artane had just made things worse, the only option left was Deep Brain Stimulation.
My local neurologist quickly referred me to a more specialist team to discuss and begin the DBS process.
I remember sitting in one of the appointments where we were talking about DBS in a serious way, and it hit me. This was no longer a hypothetical question; we were talking about brain scans and surgery.
There is a surprisingly huge difference between knowing that I was considering brain surgery and knowing I was considering brain surgery.
Even though I’d dragged my mum and worker to Sydney for one of my last neurologist appointments before getting surgery, and we were meeting the doctor who would be performing the surgery, it suddenly hit me. I was about three appointments away from letting them cut my brain open, and I didn’t actually want that for myself. I was going to be doing it for other people.
To this day, people still don’t understand how I didn’t realise it was brain surgery. The concept itself is way too easy to understand, but once you start to actually understand what it means, it’s fucking terrifying. Especially when your brain is your most important asset.
At eighteen, I was terrified the surgery would change who I was and affect everything I was doing. The kid deserves a gold medal because she was right in one sense. DBS does change you, a lot more than you’d expect, but not necessarily in the ways an eighteen-year-old thinks it will. My personality, ambition, and everything like that did not change, but everything else did. You no longer think certain things are important, and you value and prioritise very different things.
Unfortunately, DBS is one of those surgeries you need to want for yourself, because getting through everything that follows requires a level of commitment I didn’t have at the time. At eighteen, I didn’t understand this, but I must have had an intuitive sense, because that kid didn’t want the operation for herself, and once she was standing on the edge, she could no longer pretend it was fine.
I have no idea how I realised that, but thank fuck I did.
Going through the surgery and recovery and the endless programming and adjustments to life is not something you can do solely for the sake of other people’s benefit. I wish it were, that would have made the decision-making process a breeze and so much shorter than it was. But, thank god I had that intuition, because I was so not ready.
Then COVID happened, and we paused the process. From that point on, it would be up to me to decide if and when I wanted to revisit the discussions and choose what to do next.
Life carried on for a while.
Then, I fucked my shoulder at twenty-two. Turns out, that was my first actual decline. For a nonprogressive disability, Cerebral Palsy is a bitch.
Even now, I’m not entirely sure how to explain how a shoulder injury eventually led to brain surgery.
The simple answer is that it didn’t.
The surgery wasn’t for my shoulder. It was for the movement that had been slowly destroying it for years.
But even that feels too neat.
I’d already spent most of the past year and a half trying to fix my shoulder in the conventional ways. Massages barely made a difference. I’d been to a physio so many times we had a great relationship. Cortisone was useless because I couldn’t rest my shoulder. Painkillers had become my best friend.
By the time I finally chose DBS, I wasn’t just deciding on pain. I was deciding on independence, quality of life, the future, and what I wanted the next twenty years to look like.
For my 23rd birthday, all I asked for was a break. I’d been working my butt off studying and trying to work full time and my shoulder was literally a liability. If a worker moved my shoulder even a millimetre in the wrong direction, I could be in agony for days. On top of the unbearable pain that I was already feeling.
And I don’t say that lightly. I have an uncomfortably high pain tolerance, so if an injury is bringing me to tears more than once, it’s fucked.
It had gotten to a fork in the road, where I could either continue fucking my body while still doing everything I was doing, completely give up on my goals and accept a life I didn’t want, or give up a few things, make a few adjustments to what I was doing, and get brain surgery.
Brain surgery was kind of the only choice that let me have a chance of living the life I wanted.
None of that necessarily negated the fact that brain surgery is terrifying. I was still fucking terrified, but it had gotten to the point where all of the alternatives were just as terrifying and the idea of operating on my brain was no longer the scariest part.
Within two days of making that decision, I’d dropped out of university, booked a tour of a local day program and made an appointment with the final neurologist I had to get approval from.
When it was finally time to bite the bullet and decide to go ahead with the surgery, I couldn’t get on the operating table soon enough. Little did I know that DBS is usually a last resort decision for almost everyone, when they’ve had enough of whatever symptoms are destroying their lives. That was exactly where I was.
My body was destroying my life. Literally.
When I returned to the process I’d stopped three years earlier, I walked into the office of the neurologist who would soon enough be one of my favourite people on this planet and said four words.
My shoulder is fucked.
Of course, there were many other reasons for getting the surgery, but that was the moment when the four people in that room understood exactly where we were about to head.
You know you’ve found the right doctor when they are genuinely seeing how much they’ll be changing your life and the difference they could make to you. My doctor heard that sentence and saw the state I was in, and was so excited to be able to help me in any way he could.
I soon came to understand that when doctors are excited, it means they have no idea what they’re doing and are really just excited to be challenged.
I was clearly not going to be an easy case, and we all knew this from the beginning. My dystonia was one of the most severe cases ever to be considered a candidate for DBS, at least in Australia.
However, since the main thing I needed to achieve was pain management, the doctor pretty much instantly approved me.
A few weeks later, I was back in Sydney getting put under anaesthesia for an MRI on my brain.
A few weeks after that, I was sitting in the kitchen on my first day at my day program on my laptop when the most important e-mail of my life came through.
I was getting brain surgery in less than three weeks.
In those three weeks, I had to stop taking the anti-inflammatories that were making my life bearable, and I was quickly reminded why I was going to do the thing I was about to do.
The surgery itself turned out to be the easy part. It was everything after the operation that ended up being the most difficult thing I’ve ever done.
I thought DBS was a surgery and that recovery from it had an end. Turns out that it’s a lifestyle.
Knowing everything I know now, I don’t think there are enough words in the English language to express how thankful I am that I decided not to get the surgery at eighteen or nineteen or a minute sooner than I did.
There is no way the eighteen-year-old would have been given the time and space to recover, go through all kinds of hell, get reprogrammed a bunch of times and learn to live in a new sort of life that looked nothing like it did before surgery.
She probably would have been expected to be back on the boccia court and working the second she woke up from the anaesthesia.
Instead, it took fucking years of adjustments, learning how to live with whatever new effects DBS threw me, a lot of time in bed and a lot of acceptance of certain facts. The operation lasted a few hours. Learning how to live afterwards took years.
Three years later, I’m finally in a place where I can say DBS was one of the best decisions I’ve ever made. The journey was one of the hardest things I’ve ever done, and my life will never be the same. But that’s exactly why I’m so grateful I waited until I was ready to choose it for myself.
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