Tuesday, March 31, 2015

What Do You Say To A Dying Person? One With The Most Tragic Story I've Ever Heard..

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I got a message from someone a few days ago. Someone who'd read my blog and wanted to talk... something. He didn't really say what.

Over the next few days, we chatted about random things - what I was doing, how I was feeling; this and that. He always seemed reluctant, or distracted. As if he was on the verge of telling me what was up. But he never really got to it. So I kept checking up on him.

The next day, he let slip that he was getting married.

"Married! Really? Haha I understand now why you're busy!"

"I'm so excited! But stressed with all the planning.. I'll talk soon dude! When I have time!"

He never did get to talk. Well, HE hasn't yet...

But I did get a message from his husband the other day.

"Andrew's in the hospital... and he told me to message you. He was vomiting for a while. And then he fell unconscious... they're watching over him closely."

"Oh no... that's horrible. I know he's going through pain right now... but I'm sure he's glad you're there to help him..." I messaged cautiously. Dread was almost palpably building up in my stomach, as it always does when someone messages me something like this...

"Well, he mentioned something about his legs having some issues... If I may ask, what's brought this on? Is he OK now? Are you?" 

No reply. Until the next day. When I got this message.

"Andrew had thyroid cancer. His forster parents didn't think it was an issue, they didn't take him to hospital... Until it spread so far around his body... that they had to amputate his legs. They haven't seen him since.

"And now, it's in his brain."

"The doctors aren't telling me much... he's getting weaker and weaker..."

"How am I feeling about this? Well... I don't know, really... He's my everything..."

My dread was confirmed... I realised where this was heading. I knew what that meant. And when I read his last post on Google Plus, it was confirmed. Andrew was dying. 

And this development meant that he may not have much longer...  

 What do I say to that? How could I ease their pain? Their struggle?

They're star-crossed lovers... Through and through.

His dream was to get married to the love of his life...


He DID manage to make and conduct his marriage. In fact... it was the day before his husband messaged me about his hospitalisation...
He'd fulfilled his dream.
But now what?

We see, and revere stories, of star-crossed lovers; staying by eachother til the end... we hold them up in high stead, their stories inspire us, and make us hope for love and joy such as that... But what we don't see in stories like Romeo and Juliet and The Fault In Our Stars, what we can never understand nor feel is the lingering pain felt for lifetimes by the mothers, fathers, children, friends and lovers of those who've passed.

Andrew's husband, like many around the world, is right now being forced to watch on as his loved ones suffers, and possibly dies, right before his eyes... How could I tell him that it'd be alright? How could I ease his pain?   

Andrew himself, though he'd made it, and fulfilled his dream of getting married to the love of his life, was still, in his own words, "terrified" of what was to come... And he wanted his friends to know that. Contrary to what people thought, he didn't feel brave or strong, but rather terrified. Who wouldn't be? In truth, most, if not all cancer patients are...

I tried for ages to write and send his husband some words that could ease both their pains. Some magical combination of letters and phrases that could absolve them of their torment, and bring about some relief... but... in the midst of this... tragedy... I couldn't think of any. 

I ended up sending him this.

"It sucks that good people have to be subjected to so much pain and suffering... But I read Andrew's post today and I know that he's in a similar place I was and is handling it the same way I did. 

When I was diagnosed, I was given a tiny chance of survival. For a long time, I was down and out about it all... I was devastated tbh [to be honest]. But after a while I took a step back and looked at what had happened to me... As if it had happened to someone else. And when I did that, I realised I shouldn't worry about what I couldn't control - the pain, the treatments and everything horrible to come but rather what I could. And that was just focusing on just being as healthy as possible, inching my chances up that much higher... And just being happy wherever and whenever I could.

I did the same thing - I took a step back and realised, when I relapsed, and was initially given a death sentence like Andrew,  that in the end... I could either think of it in this way... that I have six months left to live...  Or that I had six months left... TO LIVE. To feel. To love. To learn. To discover. To help.
Andrew's attitude, his resolve to enjoy his time on this world, despite the fact that he's still suffering and still in pain is one that's made him, and most importantly, those around him, happy. His marrying you is just the pinnacle of that happiness, the thing that's made him and his life that much more whole, that much more complete.
This may not be the end. And I hope it isn't. But I want you and Andrew to know that what he's done isn't just getting the most out of his life and love, but the most out of everyone who hears his story."

That's the best I could do. I tried reminding them of Andrew's own attitude,  in the hopes that they'd try to smile and laugh in what could be their last few days with eachother.  I reminded them of how his struggle wasn't in vain; how it was leading to something special... something larger... something that was going to inspire everyone who hears this story.

I know it's not enough to erase Andrew's pain, and terror of what's to come. Of his husband's inconsolable loss of his 18 year old partner... 

But if you're reading this... the best way you can honour Andrew's life is to learn from him. 

I know it seems clich├ęd, but just because it is, doesn't mean it's not true.

Try and live every day like it's your last. It's sad to say... but for many it is.

Don't assume that others are brave, or fine, or strong, or anything for that matter. That thought itself torments too many. In fact, that's the post through which Andrew found me in the first place.

Andrew also said on his Google Plus page that he wanted to start a blog - to share his story - to make people see what it's like for people like him... to let them see what he's going through. To hopefully learn from him...

I hope this post has allowed him to achieve something close to that...
Do share this so that he can achieve this goal too.

 What did I tell his husband? 

The sad truth... That nothing could ease the pain. It would be hard... especially the next few months.

But that despite that - Andrew would have wanted him to be happy. 
And that Andrew still lived on, through him, and through how he's changed the world of those around him... and hopefully those of you reading this too. 

Along with my remorse for their loss though... I feel... some anger. I've seen too many people, young and old, suffer now. I've seen too many people die... 

I've been thinking for a while now about a novel, new way of treating cancer. One based on the concepts of immunotherapy, but one applicable, a system transferable, and able to target many types of cancer. I'll explain more as I flesh out the details and conduct further research into it to see if it's plausible, but click here for a thread I had early on as I started thinking it up. But I hope I'm right and hope that this can become a game changer. If not... I hope that immunotherapies of all kinds can improve further and hit the markets quicker so less people have to go through experiences like this...

Friday, March 20, 2015

The "Yellow Car" Game Done Wrong. Humour in Hospital #8

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I've said it a few times in previous posts - you should definitely check out the other Humour In Hospital posts to see why - but my father was one of the best assets to have in hospital. 

My mother was an angel. The perfect personification of the concept of motherhood. She'd make sure I never had to eat hospital food (unless I wanted to), she made sure I never  had to spend 1 night in hospital alone (she'd sleep on a too-small couch by my bedside every night) and she made sure that when I was in pain, I'd never have to move an inch more than I needed to.

My brother - he was the rock. The one who kept the family going. He somehow, on top of studying for the most imporant exams of his life and running around after his sick brother, managed to inspire my parents to be strong. 

But it was my father who kept me smiling, even during the tough times, when I, and everyone around me, couldn't see anything to smile about. 

He's done many hilarious things to get me through pain - a few of them I've already talked about here before, more I'll be sharing later -  but there IS a fine line between funny and annoying.

And today... he crossed it again. 

Over the last few weeks, I've been getting this treatment called Extracorporeal Photopheresis - the long name behind a very interesting treatment (read about that here) - that essentially requires me to stay out of all sunlight for 24 hours after each treatment. 

I've been getting those treatments twice a week now for the past 12 weeks and because the hospital I've been getting it at is about 45 minutes away by car, I've had to cover up fully on my way to and from hospital. 

To keep outta the sun in the long drive home, I'd lie in the car in a blanket so no rays would hit me. 

My brother hated how, when he stopped at lights and I'd speak, he'd look like an idiot talking to a blanket. Naturally, I ensured he was engaged in conversation every time we'd slow down at some traffic lights. 

The past few weeks though - Dad's been driving me back from treatments. 

But the smug bastard's been taking advantage of my being blinded. 

My dad, brother and I play a game called "Yellow" when we're driving. 
It's a simple game... one you may well play if you have a few boys in your family... 
If you spot a yellow car, and call out "YELLOW!" first, you're allowed to hit your opposition. Wherever, however, and as hard as you want.

Dad's usually the worst at it. Not only was he driving most of the time (meaning he couldn't inspect side streets and front yards for potential YELLOWs), he's Red-Green colourblind too... so in the precious milliseconds it took him to squint and figure out whether a car was yellow, orange or light red, we'd already have called out and claimed our God-Given right to a punch.

But after the treatments... considering I was stuck under my blinding blanket... I was at a CONSIDERABLE disadvantage. 

Yet that didn't stop Dad. He'd still keep calling out yellow and claim his punches... giggling as I cursed in frustration from under my blinding covers... 

I guess it would seem funny to you reading on... but YOU don't have bruises and red spots all over from his slaps and punches.  

But today... I got him back. 

When he initiated the game (Because of course, I had no way of picking out the first "YELLOW") - I was ready. 

I had this loaded up and ready on my phone. I showed it to him, Called out "YELLOW!" and let fly. 

And, by God,  his winces of pain, punctuated intermittently with laughter, were Glorious.

Wanna play Yellow again next time, Dad? I bloody dare ya. 

Tuesday, March 3, 2015

Our World Can Change. In Time. What Justin Timberlake's Movie REALLY Meant.

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 I just watched In Time the other idea. If you guys don't get it the movie, the world depicted in it, is pretty much synonymous with our world.

The movie is based on a world where time is currency. It's engraved into your skin. Once you turn 25 you have a year of time to use as your "money". That money is used to pay for everything, and as pay for everything.

The world is divided into different districts though. Factory workers, labourers and the like in the furthest 'district' out. The richer, cleaner, at the highest, decadent areas in the middle. The people in poor regions are stuck in debt, labour, poor security, and live life, literally, by the day. The rich, who benefit off the lower levels, less so.

To get into the next district though, it costs you money. It takes time.

But it's nearly impossible for most to move up into the next level. The struggle to keep your clock running makes it near impossible to move to the next one. 

It's depressing. But in our world, it's not so different. 

We spend our time at work, we get our money for that time we spend. Then we spend that money, those hours we spent working instead of having fun, on things we want and need. This movie shows us... time really is money.

Yeah, but it's not exactly the same, you could say. Yeah, we have various intricacies and tools out there to make our time(money) go further, to make it grow without work. Yeah we have welfare (if you're lucky enough to have a computer and see this your country does) so not everyone suffers... It doesn't seem all that bad, right?

But it's the world's poorest billions, both in our nations, but mostly in developing ones, who put in their time so that we may live the life we do.

Some of u worked hard, some of us studied hard for our money/time, yeah. But we couldn't have even studied, or afforded to live, if it wasn't for our parents. Mostly, it's where we were born.

Those at the bottom, the "ghetto" districts in the movie; the sustenance and barely over sustenance farmers, the street hawkers, the rubbish pickers, in our world - they can't possibly think about anything beyond the next day or the next meal. Just as this boy can't...

This will depress you. But it's the way of life for millions of kids in our world...

But there are 2 differences in our world and theirs. The first is depressing; the second, more hopeful, I think.

The first; unlike In Time, in our world, the clock doesn't start at 25. 

It starts at 0.

6.3million children died before 5 in 2013. 215 million children work right now. Children by the way doesn't mean under 18s. It means, "working prior to end of compulsory schooling". Many nations only have compulsory schooling til 12 or less. So that number is probably higher. So, if anything, the world depicted in In time, is better than ours.

But the second difference between us and them is that unlike theirs, our system won't fail if we share around our time and money. 
In fact - it'll thrive.

Where In Time, when Justin Timberlake's character shared his time around led directly  left the world's systems rocked, as everyone stopped working when the system of reliance broke; our world doesn't have that limitation.

Companies, the world over, are slowly recognizing that the world's poor are not just filled with people we can exploit for cheap labour, but potential markets.

In fact, by 2050, 2/3 of the world's wealth will be owned by people in developing, third world countries; a complete reverse, as today we hold 2/3 of that wealth.

Microsoft have realised this already, as have many companies in the technology sector; their investments into research into third world markets extend so far as to slums (I'm not kidding - Microsoft funded large research projects looking into the sales structure of mobile phones in the world's poorest slums! People who can't afford food, or shelter beyond a makeshift, cardboard/wood roof have phones!)!

The internet is realising it. One of the biggest sites on it; Facebook, recently announced the introduction of Internet.Org

Mark Zuckerberg wants to connect everyone in the world to the internet. Our world's economy is no longer resource based; it's KNOWLEDGE based. Knowledge is power. Around the third world; people are forced to reinvent the wheel, sometimes literally, as the example in the video of the farmer "inventing" the windmill so he could collect water more efficiently shows perfectly. Indeed, it's happening in the "developed world" too - with countless universities, foundations and governments investing millions into research that's already being done by other organisations! Some, like the Cure Brain Cancer Foundation, are trying to change this. They're creating huge, efficient, interconnected systems to make sure research is never duplicated. 

But for the world's poorest - that challenge is MUCH easier. Simply connecting them to the internet, in any small way, gives them access to knowledge and education that we take for granted.

But this isn't just philanthropy from Facebook. It's great business too. Its primary business model, based on advertising, either requires you to make your users use Facebook more; requiring billions of dollars of investment in research, new products, and infrastructure, OR Increasing Your User Base. 

5 billion people don't have access to the internet right now. What better way to increase your user base than to get them connected and hooked? 

The same is starting to be realised all over the world. By many industries too. The vast majority of companies aren't, but transnational corporations, governments and individuals are starting to see the developing world as emerging markets rather than just a place to outsource labour.

Because our world is so interconnected, because our world isn't bound or restricted like the world in "In Time", our world's circumstances can change without requiring anarchy inducing revolution.

It's not to say that growing and increasing the world's standard of living can occur limitlessly, without side-effects; the rate-limiting factor here is how much our environment can take; how many resources our world has to share. But technology, as well as an already increasing awareness of ecologically sustainable development in the not-for-profit, AND public/private sectors can fix that... 

But though that idea, that shred of hope that our world and its injustices can be fixed, is exciting, and though it is happening too... it needs to happen quicker.

Some businesses and some governments (for the latter, nearly all of them) know the benefits of developing the world's poor. They do exist,and they do make human development a great investment, both in the short andlong term (read about that here for economics and for the environment by clicking on the links). 

But we can either outline those, put research behind them and put a dollar figure on 'giving' and speak the only language they know; money, and HOPE industries and investors will follow (what I suggest in the above posts). 

Or we can FORCE them to.

If the Mountain won't come to Mohammed, Mohammed must go to the mountain.  

We need to incentivise businesses directly and give them a way to give where they not only get recognition for it; but something in return too.

And I have a GREAT Idea for this that is under development... If it takes off - if could be a world-changer. I'll be sure to outline it and begin a kickstarter or other platform to promote the thing on the blog, or on my YouTube. Make sure you're subscribed to both.

My idea, it'll happen, In Time (pun intended). But til then - here are some great links, ideas and ways you guys can make an impact without the sacrifice associated with charity and revolution:

  • A MicroFinance site - where YOU become a bank and loan money to poor, potential business owners. You fund people, who you fund is your choice, who have no collateral to secure a loan, and they pay you back over a 6 month - 2/3 year period. Their repayment rates are higher than our home loans, you can make money and interest off some loans and you literally get all your money back to withdraw or lend again! http://www.kiva.org/ 

How Microfinance works.
  •  A MicroFranchise organisation; an extension of the microfinance idea, which, though helpful for many, and effective in raising household incomes still leaves many working long hours - microfranchises reduce the work required in running a business while doubling the income of their microfinance peers. And remember - MicroFinanceers are much better off than millions stuck in the cycle of poverty!

    This site allows you to INVEST in them! A minimum investment of $5,000 is required, but you get a very good return! You can literally make money and save lives at the same time...
    Find out more here: http://microfranchises.org/investor

    Businesses are getting on board quickly - achieving global success and establishing their brands in populations that are about to explode; all the while giving jobs to the world's poor and spreading goods to them too. One cool example - Nestle, starting microfranchise style stalls in the Dominican Republic!
  • Buy from Social Enterprises. Companies which operate as a company should; for profit - exact their profits go directly back into the poors' pocket. They exist solely to give back to charity. Companies like ThankYou (who sell water, muesli bar/cereals and body care product), Pollinate Energy (sell solar lights, and electricity plans which help provide environment friendly, healthier for the lungs, cheaper lighting to slum dwellers) and HeroCondoms (every condom bought = 1 life saved) exist solely to benefit their poorer stakeholders; not rich business. So if you're gonna buy something... why not buy from them? There are many of them around by the way! Look one up near you!

    These are but one of many ways you can do good on top of the amount you donate to charity already! If you've got money around #WhyNotDoIt?