Could you please cut open my brain immediately, sir?

The good news: I’ll get to spend more time with this little baby.

The bad news: It’s because I need brain surgery.

I’ve doubted if I should share this for a long time. On the one hand, this story is extremely personal. On the other hand, this story has a very big impact on my PhD – and whatever is left of my social life. Apparently, the latter is more important to me.

As some of you may know, I have a chronic illness. This illness causes me to develop (usually benign) tumors on my nerves. Most of these tumors are no problem at all. They only become a problem when they grow too big and are on the wrong nerves, like my brain or my spinal cord. In that case they become as problematic as voting for Brexit and must be surgically removed – if only we could surgically remove Boris Johnson, am I right?

When I had my first big surgery, I was 17 years old and finishing high school. I was dreaming of going to uni in a ‘big’ city and escaping my small town (yes, I watch too much TV). Then they found the tumor in my spinal cord and told me there was a realistic chance that I could never walk again after the surgery. At this time, I had no idea about disability movements or rights or even met a person in a wheelchair. I had grown up in an ableist society and internalised every ableist belief. Two months I had to wait for the surgery. Two months I was left alone with my thoughts and believed that life as I knew it would be over and I should forget about my dreams of moving to a big city. All this time people expected me to just carry on with my life: I went to school every day, did my homework, even prepared to have notes for the weeks I would miss school after my surgery.

I barely remember anything about that surgery. I don’t remember the week in the hospital or the physical pain the months after, but I do remember the waiting. I might have used up my whole life supply of stamina just to get through those two months.

My new surgery is planned for the 30th of March. At the time of writing this first part, the waiting time was five weeks. I originally wrote a very dramatic ending for this blogpost – I tend to have a flair for the dramatic, as you have probably noticed in the previous paragraphs. (The Boris Johnson joke was also funnier at this time, remember partygate?) However, writing this blogpost made me realise that I’m being dramatic about the wrong thing. Someone asked me if I was scared of the surgery and I was completely taken by surprise by this question. No, I’m not worried about the surgery. All I have to do is sleep - if I had any responsibility in this surgery, that’s when I would be worried. (Yes, I tell this joke to literally everyone.) Then why was I being so dramatic? Mostly because I’m just tired. Scratch that, I’m T-I-R-E-D – never too tired to be dramatic though. The past few years I was a high school or university student when I had my surgeries. This meant that I had no time at all to take time off before or after my surgery. The rat race kept on going and I kept falling behind and having to catch up. (Once, I did an exam with brain fluid leaking from my spinal cord lol).

But this time, for the first time, it’s different. I’m not a regular student, but a PhD student *hair flip*. I can put the rat race on hold and my university gave me permission to do so. So, for the past few weeks I have been doing almost nothing and it has been absolutely great. Can you imagine having time off without having the pressure to enjoy yourself? I have a brain tumor, I can cry if I want to, I can take naps if I want to, I can bingeread Sally Rooney if I want to I, I can stop functioning if I want to. You get the picture: I wanted to, so I did. Sex is great, but have you ever ignored all your responsibilities without consequences?

And also, I’m not afraid to become (extra) disabled anymore. I already am disabled and I’m fine. (Internalised) Ableism has caused me way more harm than all my disabilities taken together. (Still hating my body? In this economy? No, thank you.) There’s nothing like collecting disabilities to unlearn your internalised ableism – although maybe try less drastic measures first.

(I think we can all agree that I should get a diary instead of sharing my trauma online.)