A “not so” Hero’s story
Hydrocephalus sounds like a made up word to a lot of people, most people in fact. To me it sounds as though it could be an ancient Greek hero, up there with the likes of Hercules or Achilles. When people think of these heroes they think of strong and brave individuals, practically infallible apart from one weakness or one event that changed everything for them.
Achilles had one weakness which was his heel, and Hercules was perfect until he was cursed and killed his wife and children. While not as minor as a bad heel and not as major as a curse that leads to murder, Hydrocephalus, or hydro as some call it, is sort of similar to these mythical characters. Let me explain…
I was 28 years old when my entire world was turned upside down. My fiancé, who was my boyfriend of 6 months at the time, and I were just getting ready to leave his flat. I had said I would go to the bathroom before we left. This wasn’t uncommon at the time. I had been diagnosed with a nervous bladder and was always at risk of being caught short. I walked to the bathroom and stretched out my shaking hands, for which there appeared no reasonable medical explanation, to open the door. I walked in and went for a wee.
Thankfully, there was no lock on his bathroom door. He heard a thump. Being that out relationship was still very new he was unsure what to do. Despite risking embarrassing me he decided to open the door when I didn’t respond to his call. The door only opened half way as it was blocked by my lifeless body on the floor. I had fainted and possibly hit my head – to this day we don’t know exactly what happened. The only thing we can be sure of is that it was caused by a severe head rush. Again, these were not uncommon for me.
He managed to wake me and sat me up. I mumbled something about a head rush and he attempted to move me to the sofa. To do so he stood me up. Looking at him on very unstable feet panic filled my body: “who are you?” I said. He thought I was joking, I wasn’t. He told me to go to the living room, I had no idea where this was, where I was or who he was. He told me to stop joking or he’d phone my dad. I thrust my mobile into his hands and begged him to call my parents. Retrospectively, had I genuinely been kidnapped by a stranger, this was not a sensible decision but fortunately for me he wanted to help me. This story could have been a very dark one if the situation had been different!
He called my dad who calmly instructed James to take me to hospital. We took a taxi and my fiancé spent the journey trying to get me to remember that I was literally days into a new job and 6 months into our budding relationship. It was no good. The only thing I could remember was a fish pie I had made with only one egg but that “it was still really rather good.”
At hospital he told me he loved me and that I’d be ok, my response was that he “seem[ed] nice but I’m not quite sure.” Devastating for the poor lad I’m sure but we had more urgent things to worry ourselves with so he kindly forgave me and let it go.
I was rushed into a CT scan and put on to a rapid review ward (or whatever they are called) and we waited. My parents arrived and they joined my fiancé’s attempts at trying to convince me that he was in fact my boyfriend and that I shouldn’t be afraid. By 11pm my parents had gone home, my fiancé was dozing in the chair next to me and my memory had nearly completely returned. “Thank goodness” I thought. I called over a nurse who explained a doctor would be coming to see me shortly. The doctor arrived and I explained that my memory was now fine and that I’d like to go home.
There was an awkward pause. “You aren’t going anywhere. You have a large collection of fluid on your brain and we need to transfer you to a specialist hospital. We’ve never seen a case like yours and we are surprised you are functioning at all, let alone living a normal life. I’m sorry.” And with that, the doctor was gone.
The days that followed saw me transferred to the National Neurological Hospital, which contains stuff of nightmares, where a bolt was inserted into my brain to measure the level of pressure that I was experiencing on a daily basis. The figures that came back after a week of being connected to a laptop via this bolt were dumbfounding. No one should have been able to survive the pressure my brain had been under for 28 years. 29 really, given my birthday was 10 days later…
As my stay continued it was revealed that my behavioural problems, namely a very nasty temper, my essential tremor, my “nervous” bladder and my chronic depression were likely all linked to this condition called Hydrocephalus. I would have to have a VP Shunt inserted into my brain to control the level of fluid and alleviate the symptoms.
That sounds great right? They will get rid of my depression, anger and stop me from peeing my pants? Great until you let those words sink in: a VP Shunt inserted into my brain to control the level of fluid.
We aren’t talking about a prosthetic limb here, we are talking about the one part of my body which controls everything else and we are talking about shoving a foreign object into it permanently. I had lived 29 years of my life thinking I was perfectly healthy but I never had been. I’d always been ill and I probably wasn’t even the person who I thought I was. The chances of my personality changing with this operation were huge, and later proven, and I had to accept it in order to save my life. If I did not agree to further brain surgery… BRAIN SURGERY… I would die.
So like Achilles, this was my heel, only to be discovered when you least want to discover it. Like Hercules, this is my curse. So having an ancient Greek sounding name seems fair. It is a curse. I’m not normal, I’m different. I feel normal, but I’m not. It doesn’t run my life or make me sad though, I just deal with it. Just like people with glasses get used to wearing glasses I have got used to having this weird device in my brain that buzzes from time to time and only I can hear it.
The device will fail – that’s the curse – and I will need to have further surgery to replace it. More than once too. A lot of the people I’ve met with my condition have had to have over 20 surgeries already and they are only in their 40s… it’s terrifying! So I choose not to think about it.
Instead I choose to be my own hero. I know that my device has everything under control until it fails and then it will be replaced and that device will have everything under control. Everything is under control so hopefully, it will not be hydrocephalus that kills me. Because I know this I’ve taught myself to let go. If I spent every day wondering why I hadn’t heard my shunt that day, or why I have my fourth headache of the day, or why I can see flashing lights that no one else can see, I wouldn’t have a life at all. These are all part of the curse, they are all part of my Achilles heel. I’m pretty sure Hercules and Achilles carried on saving damsels in distress despite their worries and weaknesses so I choose to do the same. I’m not saving others though, I’m saving me, I’m the damsel. I choose not to worry as I want to live.
I might be different to you, but I look, speak and sound the same as anyone else. Unless I told you, you would have no idea that my head is a map of scars and holes from the many surgeries and further surgeries from the complications I experienced in my 29th year. I’ve been told I’m lucky to be alive 3 times, 4 if you count the unrelated car crash but that’s another story! And I am lucky to be alive. Until the 1960s, when there was a marvellous medical breakthrough, hydrocephalus was a death sentence. Everyone is lucky to be alive and healthy, and I am incredibly lucky to have been born into an era where it’s just another condition that can be managed.
So perhaps I’m not like Achilles at all, it is a bit of a curse so I cannot rule out Hercules, but Achilles was defeated if his heel was compromised. If my brain is compromised I am not defeated, I take some codeine and get on with it. So really, my shunt is a curse I can live with, not an Achilles heel. I spend every day feeling grateful for it. It changed my life. I’m a better, nicer person with a much stronger bladder and a very steady hand now, all thanks to my curse. It was just a pretty rocky and terrifying road to get here even if there were no mythical beasts.
