Cerebral cavernous malformation, huh? Yeah I know, I’ll get to that part in a bit. Stick with me, I’ll make it worth the read for you.
Well, hopefully I will.
This is a very personal post for me to write, in fact one of the hardest.
It covers a period in my life when I thought everything I loved to do came crashing down. Serious, right?
I’ll start by saying I’ve always been reasonably healthy. Reasonably.
Even during my travels when copious amounts of local alcohol were drunk that leaves every other hangover in the dust, I still managed to walk it off and do some hiking the next day.
I still get deep chills when approaching people in remote places, as generally they like to greet you with some local brewed alcohol.
The alcohol could however be interpreted as meaning petrol.
Yep, it can be foul.
Anyway, I have digressed.
But going slightly of topic when rambling away is my thing. Some of my favourite comedians are experts at it.
Anyone who knows me understands that I have a lot of things to say about life, and regularly go on tangents away from the main storyline.
Actually in life going on tangents is what makes things more exciting.
One of my favourite pop art pieces is the one with Marilyn Monroe and the phrase “Being normal is boring”.
That doesn’t mean (for me anyway) that if you have a regular job, children, a stable life, that you are boring.
Not at all.
What makes things boring is if you don’t strive amongst all that to try new things. It doesn’t matter what it is, just anything to make you think of new things.
Hell, apart from playing the trumpet when I was a teenager for a while I have no musical talent. But I want to buy a saxophone and give it a go.
I like jazz/blues music so saxophone makes a good choice, I figure. I might end up being totally bad at playing it, but I don’t know until I try.
The whole point of buying it is to always look for something new to do.
I don’t ever want to hear the word boring.
Get on with it!
Anyway, yet again I have digressed.
I have a way of saying “The hell with it”!
And just do what you enjoy.
But I will get onto the the “hell with it” part later on, as it has an especially deep meaning for me.
Let’s get to the main topic at hand.
It’s a rather longish story.
A quick bit of back story first.
I was in India in early 2007. In fact I had been there for a few months by then.
I was meditating with buddhist monks in monasteries in the Himalayas.
I had turned vegetarian and was doing lots of mountain running and hiking.
I had quit drinking alcohol and stopped smoking cigarettes.
I was feeling good and healthy, while exploring the full on and beautiful country that is India.
It was a spiritual journey into myself, and thoughts on the world around me.
Watching people going about their daily lives and thinking about the meaning of it all.
You get the idea.
Then one day while meditating on a beach as the sun set in the southern state of Kerala, everything changed.
In a flash.
The entire left side of my face suddenly turned numb.
The initial thoughts were rather stupid ones:
“Hmmm that’s not normal”.
“I haven’t done drugs in years”.
“What drugs would do that anyway”?
“What the hell did I eat for dinner”?
Ok, not the last one.
It was a vegetarian curry in case your curious. Curry in India? Well no surprise there.
Either way, as pretty as that sunset was, I figured I should get to a hospital to ask about what was going on.
I stood up, walked maybe ten metres, then the entire left side of my body went weak, and I collapsed to the floor.
I lay there fully conscious with no power in my body for what felt like an eternity, but in reality was only several seconds.
I was in total shock about what was happening to me.
Then the pain came.
It’s hard to describe the pain. Just writing this I shiver at the thought of it.
A slowly developing pain came into my chest until it was unbearable.
My left arm shot into the air, you know like you see when people have heart attacks in movies, and I had no control over it as the pain shot through my arm.
This was it I thought.
End of days.
Being an atheist most of my life I figured if god was real I was royally screwed.
You know people say their life flashed before their eyes when dying? Well for me that was total rubbish.
The reality is the pain took over most of my thought processes. I was just trying to think about the things I had loved in life, and the things I would miss out on doing.
I wanted to eventually finish the travel lifestyle I had followed for decades.
Fall in love.
Maybe have a family.
My mum and dad came to mind in that moment as well (tear to eye).
Hell I even tried to squeeze my sister into the mix, despite her giving me a bloody nose as a kid. I forgive you sis!
But then maybe it’s different for everyone. But it felt like an eternity.
Either way my body went into convulsions and my head started turning in ways it shouldn’t. The scene from the Exorcist movie comes to mind.
Then everything went dark.
The next thing I know I was waking up surrounded by dozens of Indians looking over me.
I woke up with amnesia. No idea who I was. Where I was.
Amnesia is a weird thing as your memories slowly come back, until you remember everything that had happened to you.
But I stood up, pushed my way through the crowd, and started walking even though I felt weak.
And by the way, if you ever see someone in a serious medical condition lying on the floor, give them some space. Trust me.
Then one of the weirdest feelings I’ve ever had in my life came. I couldn’t walk anymore as I had no idea where to walk to.
I didn’t know anything.
A tourist policeman came and said I had blood coming out of my mouth and something serious had obviously happened to me.
He asked my name and I couldn’t tell him, I had amnesia. I didn’t even know what was that.
The policeman started walking with me to get some help, and after several minutes of this I had my first flash memory.
I saw a couple sitting by the beach and I thought I recognised them.
I walked to them and asked if they knew who I was. They gave the expression of “How many magic mushrooms had I taken”?
But the policeman explained the situation to them and the couple told me I had been chilling with them on the beach earlier, but they knew nothing about me. Not even my name or where I was from.
Anyone who travels may think that’s a miracle as “What’s your name?” and “Where are you from?” are normally the first two questions that get asked.
The couple then joined in on the quest to figure out who the hell I was.
The policeman took me to a pharmacy to get me some paracetamol. Even in my messed up state I knew that I needed something more that.
Thankfully the couple confirmed my suspicions.
We then headed to a hospital, where the three of them said goodbye and good luck.
It was a simple little hospital, but it was something.
I’m going to try and get on with the story a bit now and skip over some parts, otherwise it will go on forever.
What happened next was my memory slowly came back over the course of 24 hours.
I was taken to a better hospital in the main city of Kochi, where they CAT scanned me (no, not a curious kitty, but the mechanical machine), and found blood spilled on the right side of my brain.
That is why everything happened to me.
They performed tests.
They pumped cold and then hot liquids into my body to check out my veins. One of the most sickly feelings ever.
And being in hospital I couldn’t do anything.
My mum and sis came out to help. I think it was partially because my sister wanted a holiday somewhere hot, and my mum wanted to see an elephant.
But I’ll give them credit it was for me.
Although I think my sis may regret it as she had a bad stomach for weeks afterwards. Shouldn’t have eaten the fish.
Eventually I was flown to Delhi where I spent one night before being flown back to the U.K.
The health insurance came good on this one, as I had a first class seat with my own private doctor until I got to my parents house.
A Cerebral Cavernous Malformation? Come Again?
Back in the U.K. I saw a neurologist who said I needed an MRI scan to get a better picture of my brain.
It turns out I have a blood clot on the right side of my brain that had hemorrhaged (leaked, exploded, wtf, whatever) and messed me up.
Well technically it’s a “collection of small blood vessels that enlarge and go weird, and sometimes may leak”.
“Severe brain hemorrhages can kill you”.
Something like that.
Anyway I believe telling people ‘blood clot’ is a lot easier
It’s called a cerebral cavernous malformation (I know,).
It also turns out I’ve had it since birth but it only affected me from that point in India onwards at the age of 31.
Apparently quite a few people get these things, but some never even know about it as it does nothing to them.
Of course I had to get one of the worst case scenarios. Actual leakage of blood on the brain and a transient ischemic attack (basically a stroke without the after effects).
A what a what attack?
Medical terminology was not a strong suit I soon discovered. ‘Cerebral cavernous malformation’, say that once and try remember the next day.
Actually they shorten the term ‘cerebral cavernous malformation’ to CCM. So let’s keep it at that from now on for both our benefits.
I felt annoyed that I had decided to get very healthy in India before this thing happened.
The neurologist said the CCM was in such an awkward part of my brain that it was best not to operate on it.
He said I should take medication for the rest of my life to control the seizures. The seizures being caused by the CCM putting pressure on the part of the brain that it’s located in.
Fat good I figured the medication would do if it decides to pop again.
You seriously have to be kidding me!
The next thing that happened sent me into a deep depression for months.
I explained my lifestyle to the neurologist. About travelling the world, having adventure, partying with new people I was always meeting.
Living life to the fullest.
He then destroyed my dreams. Everything I had loved he told me not to do. Even the simple things.
I had lived in Amsterdam and loved riding my old city bike around the place. He told me I shouldn’t ride a bicycle anymore.
I loved free diving with sea gypsies in Indonesia. He told me I should have nothing to do with the sea ever again.
Even simple swimming. But I loved the ocean.
Going out drinking with my friends and meeting new people. Nope I was told not to drink alcohol anymore.
You have any idea what it’s like being around drunk friends sober knowing you can’t join in? It sucks.
He went on and on, and I took him seriously. He was the expert after all.
This lead me into deep thoughts about how my lifestyle had changed.
The Hell With It!
Back to one of the statements made towards the beginning. “The hell with it!”
After a few months after learning what was wrong with me I decided I needed to travel again.
Easy travel to start.
A train journey across Europe, into Turkey, and then onwards to Syria.
A slow progression towards adventure again.
I had started to get out of the neurologist comfort zone set for me.
Before I knew it I was hiking by myself in the mountains of Norway. The thought of what might happen if I had a seizure while traversing a tricky ledge is always at the back of my mind.
Whenever alone in the wilderness exploring now I have the feeling I would be totally screwed, as there would be no-one to help if something went wrong.
Riding my city bike in Amsterdam? Hell yeah!
I mean seriously, not riding a bicycle? Come on.
The cyclist I saw riding his bike through a national park full of lions in Kenya is much more likely to get messed up. True story.
Then I stepped up the things I wasn’t supposed to do.
Flying a microlight over Victoria Falls? Yeah that could have gone seriously bad.
Snorkelling off one of the best reefs in the Philippines? At least I would drown with all those pretty fishes around.
Horse riding into the mountains of Kyrgyzstan to stay with nomads? Falling off a horse without a seizure almost happened anyway. Multiple times. Bloody horse.
Starting to enjoy a few craft beers out with friends? Definitely! Although for general health keeping it to a minimum.
The point I had chosen to make was a simple one:
Was I going to follow the rules laid down for me? Or live my life and follow my dreams?
I had almost all of my teenage and adult life tried whenever possible tried to break away from a ‘normal life’. I had been expelled from two schools doing that when I started to rebel against a ‘normal life’ at the age of 14.
I simply decided that I had to stay true to myself. Even if it meant dying early (something I don’t want, but accept may happen).
But I was going to live.
What I’m trying to say with all this.
I’m trying to say to those people who made it this far (congratulations, the internet has a short attention span) is that bad things happens in life.
You may be lucky and have no health things happen to you until old age. I’m happy for you.
And there are plenty of people who have it way harder than me. Way harder.
My personal point is that you should always try and follow your dreams.
No matter what. Don’t wait. You never know what might happen.
And if bad things do happen then get up and keep going, and never give up.
People who know me think I’ve had this fun life of just travelling, but I’ve seen darker days. I’ve suffered depression.
I still have the possibility of this bloody (pun intended) CCM bursting on me again.
I get partial seizures even with the medication.
You know how annoying it is being in the middle of a conversation then having to stop for 30 seconds until your face stops being numb?
Especially when the person(s) have no idea what is wrong with you.
When you’re waiting ten minutes on hold trying to get in touch with customer support and as soon as they answer you have a facial seizure and are unable to talk.
And they hang up on you.
It’s weird to think that if I had behaved myself in my teen years then I would probably have ended up a scuba diving instructor, as that’s what I wanted to be.
And if I had, then when this CCM transient ischemic attack happened I would no longer be able to scuba dive anymore.
Funny how life works.
But travelling and meeting so many new people along the way is part of what makes me happy.
Having good times with new people on the road, while making some longer term good friends.
I picked up a couple hitch-hiking along the Tajikistan-Afghanistan border and we ended up hanging out for a few days.
Over the years since then we have met in various parts of the world, and have become firm friends.
That’s just one of many examples.
Even meeting people for just 20 minutes has turned into a proper friendship later on down the road.
That’s part of the joy of living.
You never know.
And try and make others happy and you will yourself in the process. Yeah I know it sounds cheesy, but it’s true.
Listening to the song “Mad World” while driving past one of the worst slums in Africa.
Watching young children in absolute poverty living on a trash pile just trying to survive.
That makes everything else come into perspective.
No matter my problems there are plenty of people having it a hell of a lot harder. I always think of them.
Most people reading this will be from first world countries probably. We have much better opportunities to follow our dreams than many others.
Go for it.
Live Your Life
This is the most emotional post I’ve ever written, and surprisingly one of my favourites to write.
Because at the end of the day I wanted to convey a positive feeling out of a bad situation.
What I’m trying to say is I didn’t write this long post (again congratulations if you’re still here) for any kind of sympathy.
I wrote this because I wanted to share something deep and personal with you, and hopefully maybe inspire someone who has felt this way.
Even if just one.
This post is dedicated to my parents, David and Jean, for helping me through my most difficult times.
And thanks to all my friends out there for keeping me going with a huge smile on my face.
Now where the hell is the shop with the saxophone.
This post was originally written in 2015 but I am updating it now as things in life have changed.
As they are prone to do.
I’m now happy to say that I have fallen in love and she has fallen in love with me.
We are engaged and getting married this year (2019).
We also both want to have a child and start a family in the future.
Just goes to show, you never know what life may bring.
Through the stages of depression, happiness can come again.
Never give up dreaming.
Adventures With The Cerebral Cavernous Malformation Stuck in Me
And now we have reached this happy end, if you’re curious about some of the more fun adventures I have gotten up to since having this thing in my brain, then these are some of the best:
And so many more which you can discover on my destinations page.
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