In 2011, my brother and I almost lost our mother to several severe brain haemorrhages. She was in a coma and on life-support, with hardly any information being given to us in Intensive Critical Care, we had no idea what to expect. It ranged from “She could die any minute”, “She could be paralysed”, and “She may just dislike rice now, or suddenly like chips.” We had to go through discussions of turning off the life support machine… I’ll never forget the day when I was by her bed side and the nurse handed me her wedding rings. Passing them over to my father later that day completely ripped my heart to pieces.
Over a series of months, we watched my mother gradually (thankfully) wake up, being paralysed and not understanding the world around her or being able to communicate. We prayed for her to be able to get her memory back, and I’ll never forget the moment when I walked into the ward and for the first time she recognised who I was. We saw her learn how to talk again, how to walk, how to climb stairs, how to understand the world around her.
Now, it is hard to tell she has brain damage. Or that her skull has a giant crack in it the shape of a question mark from her cranium all the way down to behind her head and down to her ear. She struggles with pain in her arms, dizziness and emotions. But otherwise, she is practically a living miracle.
The fact that she survived, given her age and the odds against her, is mind blowing. The neurosurgeon, physicians and doctors had no idea what would happen, how the spectrum of her life and death was so vast, no one could say or promise anything. How one minute during her coma she seemed okay, the next minute, she was on death’s door, and back again. Her life-line was a rollercoaster, and to come to where she is now — a virtually ‘normal’ state, is incredible.
During this time, I was working a lot with young people with terminal illnesses, and specifically one girl, Becky, who had a brain tumour really helped me through the process. I was teaching them filmmaking and post-production, and gave them the opportunity for them to create short films about their lives for their families to keep.
My brother, was working on his Phd, and researching into cancer data, (for example, HeLa) and matching their individual genetic data, with a possible route cause.
Today, my mother is on the other side of the world. She travelled by her self to go home to Malaysia and Singapore and has even taken a holiday to Vietnam. She currently resides in Malaysia with my family.
My brother, now a Doctor, is working on the recently announced Human Brain Project.
The convergence between biology and ICT has reached a point at which it can turn tthe goal of understanding the human brain into a reality. It is this realisation that motivates the Human Brain Project – an EU Flagship initiative in which over 80 partners will work together to realise a new “ICT-accelerated” vision for brain research and its applications.
One of the major obstacles to understanding the human brain is the fragmentation of brain research and the data it produces. Our most urgent need is thus a concerted international effort that uses emerging emerging ICT technologies to integrate this data in a unified picture of the brain as a single multi-level system.
And that’s where my brother comes in: he is recreating a human brain… With a super computer.
The research is vital to help us understand so many things about us as humans, ways to help, brain surgery, brain cancer, Alzheimer’s, mental health, dementia, everything.
If you’d like to read more about it, are a budding scientist and want to get involved in the research, they are open for collaborations.
Go into the arts. I’m not kidding. The arts are not a way to make a living. They are a very human way of making life more bearable. Practicing an art, no matter how well or badly, is a way to make your soul grow, for heaven’s sake. Sing in the shower. Dance to the radio. Tell stories. Write a poem to a friend, even a lousy poem. Do it as well as you possibly can. You will get an enormous reward. You will have created something.
Soooooo, here goes at my first attempt at writing about something I actually feel.
I’ll go straight in there: I recently discovered I have a tumour growing in my womb. It’s pretty common… apparently… and for those of you lucky ones who haven’t had the pleasure of knowing what this is like, it’s sort of like that scene from Alien where the alien starts bursting out of the guy’s body… Except it’s not an alien with claws and teeth. Instead, it just hangs out inside of you, but feeling like it’s clawing its way out of you, being annoying, painful, and causes you to loose a hell of a lot of blood. I’m on three different vitamin and iron supplements and three different medicines. I’m not one for taking pharmaceuticals and prefer to take a herbal remedy, but annoyingly these pills do a little something that help but I’m not wholly happy about it. A close friend I confided in advised me to take Blackstrap Molasses which is high in iron and has been known to reduce tumour sizes… God knows if it’s doing anything but I’m shovelling this tar-like substance down like there’s no tomorrow.
I’ve had this lovely tumour for a while without knowing it and am going in for surgery to get it removed, but me being me, I’ve not told many friends about it… The friends who probably would tell me off for not telling them, have no idea. And a tiny handful of friends in my life know. And of course, I’m sort of kicking myself for not being able to talk about it. I spent the first 2 months freaking out and worrying, not sleeping, and spending most of it going for long walks with one of my best friends. Now I’m sort of burying it or not addressing it and generally coping with the day to day constant fatigue and energy draining anaemia that this bitch of a growth has given me. It’s put a strain on my job, where I have to push my little nagging worries and tiredness down with a massive garbage crusher, and pack everything into a tiny little space in order for the enthusiastic happy energy ball Teacher mode to work.
My evenings result in me coming home from work, doing yoga (pain permitting), and eating out an ice-cream tub in front of the TV. As one of my friends says, “You’re in the ice-cream phase of life most days”. Usually the ice-cream phase is mostly entered when you’ve broken up with someone, and all you want to do is curl up on the sofa in your pyjamas watching God awful TV, eating your sorrows out of a tub of ice-cream and/or frozen yogurt. Irrespective of the fact you’re lactose intolerant. We’ve all done it. For example, a friend of mine has recently split up with his girlfriend and has gone into a morose recluse of constantly playing the drums. His guy friends decided to help him out with the male form of the ice-cream phase, which is essentially made up of meat and beer. We’re talking primitive meat eating here.
So whilst I pretend I’m not thinking about my surgery day (I’ve never had surgery before and have no idea what to expect) I’m attempting to divert my attention everywhere else. So I work. A lot. And end up in this catch-22 of complete exhaustion. For someone who’s incredibly energetic and physical (I love exercise), it’s super frustrating.
Thankfully, I’m blessed with having the coolest handful of awesome close friends who are supporting me like the epic legends that they are to the end of the Earth and back. I’ve no idea what I’d do without them, sounds cliche, but I honestly wouldn’t have them to be able to see on the weekends when I’m half asleep and drag my butt out of bed at 8am, head into central London and catch up with their beautiful faces over a hot drink and a walk. They’ve offered to see me after work when I’ve got the energy, hanging out, inspiring each other and reminding me of what life is all about. Strength. Love.
The night before my surgery we’ve even decided to have a party. My mate Andy is having a gig in the city, and some of us are going to go to celebrate, dance, forget the next day is happening whilst also being very aware that the next day is happening. I’ll be in the operating theatre at 7:45 am. I’ve got to fast the night before, so I’m guessing by 9pm I’ll be asleep on the dance floor and people will be dancing around my comatose body. Carpe Diem! These same friends have also decided to tag team taking care of me when I come out of surgery, which is simply awesome, as I have to be monitored for 24 hours by a wonderfully mature adult. Given that we’re all border-lining 30 (or past 30), you’ll find there won’t be an essence of maturity about this. Which is a good thing. Because I want this to be as comical as it possibly can be. The way I see it, is my mother, who survived 3 major brain haemorrhages and paralysis, is currently back home in Malaysia having an incredible time reunited with our family and functioning like normal again. You’d have no idea she even has brain damage and that her skull is fused together with glue. If she can overcome being at death’s door, I can overcome this bullshit tumour! But I honestly don’t think I’d be able to do it without the greatest bunch of people I know, who have been there all the way.
I just need to figure out how to talk about it… Because I can’t. It’s like the hardest thing ever. This one thing that currently resides in my body is like this unsaid, whilst my brain is screaming “I NEED REST! BUT I’M BORED OF BEING EXHAUSTED! OMG LET’S GO RUNNING! YES! WHAT A GREAT IDEA! I KNOW, LET’S WORK FOR 10 HOURS A DAY! YES! YOU’RE A GENIUS!”
If all insects on Earth disappeared, within 50 years all life on Earth would end.
If all human beings disappeared from the Earth, within 50 years all forms of life would flourish.
There’s no sugary cliche, most folk don’t even know who are, what we do, or how we do it, let alone want to pay us for it. I never want to take this for granted, so I try and make motivations simple, real and positive. If I only scrape a living, at least it’s a living worth scraping. If there is no future in it, at least it’s a present worth remembering. For fires of happiness, and waves of gratitude, for everything that brought us on Earth at that moment in time to do something worth remembering with a photograph or a scar. I feel genuinely lucky to hand on heart say I love doing what I do.
Your work is to discover your work and then with all your heart to give yourself to it.