Thursday, February 12, 2015

What's Going On. My Eye-Opening Experience. And How I Got Through It.

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Latest Updates at bottom of post. Video of this here:

So this morning, I left a weird status update on my personal Facebook. 

I know a few friends and family are worried about this, as some of you reading this may be, so I'll explain. An Ophthalmologist is an eye surgeon/doctor by the way. 

2 days ago, just before I slept, I started seeing red dots everywhere in my left eye's vision. You couldn't see it on the outside, later, I'd find out that was because it was deeper down in the eyeball, and I was just about to sleep anyway, so I fell into bed and slept. The next morning though, on the way to some treatment, I noticed it was still happening. 

The red dots were everywhere in my left eye's vision field. They're "dots" and "lines", not flashing or moving around. Similar to these "floaters" below that you may see sometimes, but bright red, usually shorter than the lines seen below, and there are thousands of them all over my eye - so much I could only see outlines out of that eye. Trying to read anything even centimetres away was impossible as the red dots would blur out the word outlines completely. 

So when I arrived at Royal Prince Alfred's Hospital for my treatment, I mentioned it to the nurses, and they agreed that before I get anything done, I should figure out what's up there. We postponed the treatment for the morning and saw an ophthalmologist. 

After a few scans and tests designed to look deeper into the eyeball, at the back of it, called the retina, he proclaimed that I likely had central retinal venous occlusion. What that essentially meant was that the back of the eye, the part responsible for picking up and processing sight and colour, had a vein being blocked by something inside it in the middle. 

Digital retinal scans of the back of the eye. Left one is normal, the right shows central retinal venous occlusion (what I have). The bright bit is the optic nerve, which takes signals from the eyes to your brain for processing. The darker patch in front (to the left) of it is the macula, the central part of the retina, the back of the wall, and the red lines around it are all blood vessels. 
In the right, diseased eye, as you can see, the vessels are more defined, they turn more and more on themselves and there's a little bit of bleeding there amongst them too as the blockage in the vessel causes blood and fluid to leak out. Below, if you're confused, is a basic outline of the vision. 

Some eye anatomy and terms in case you're slightly confused. The right is the eyeball side we see if you're wondering.

The eye and vision outside of the venous occlusion was fine. But the fact that it had happened in me, a young person with no other risk factors other than my graft versus host disease (from my bone marrow transplant), made it scary enough as it was. The treatment and outcomes for the disease, including blindness only made it worse... 

But the next morning, at 4am, when I posted that Facebook post, was even scarier than that. When I woke up then, the redness had, if anything, gotten worse, and there was a long black line of black in my left eye's vision too now. A stringy line followed by a ball on the end just above my central vision. My ophthalmologist had warned me that if it had progressed or if other signs had come up - go in and see them as soon as possible, or else, see emergency. And when I got there in the morning, they were concerned it was a retinal detachment; an acute emergency that would require immediate surgical intervention. 

When I saw the eye doctors, they gave me this much relief; it wasn't that.

But the central retinal occlusion was still there. If anything - it had gotten worse. Under scans, the macula was now swollen. And while I saw the specialist the second time, he explained to me the treatment and the outcomes there in more detail too.

First off - I'd have to get an angiogram - a scan which tracks the movement of blood through vessels - of the eye which'll show the extent of damage, and show if my retina was "ischemic", or "not getting enough blood to the point that it was dying" (blood = nutrients and oxygen, which almost all cells in your body need), in some regions. If it was, which, due to the swellings and progressive loss of vision in that eye, was likely at some level, then I'd have to get laser therapy (called laser photocoagulation) to "zap" and force any bleeds that may be there to stop; as well as reduce the progression of scarring. 
On top of that, injections into the eye (OUCH) of anti-VEGF (Vascular endothelial growth factor) - something that blocks the formation of new, in this case, dangerous blood vessels which can occur in some parts of the body if they're not well perfused with blood would also be required.

These therapies are pretty good at reducing the chances of progression and improve people's sights over months of treatment, but there is still a chance of glaucoma; a more serious, chronic disease that can cause blindness.

But the fact that I got it early means that I can likely avoid that, or even if I can't, I'll be able to manage it. Many people catch glaucoma in late symptoms; because it progresses slowly, it's called the "Silent Thief of Sight"; but there are many medications and options I have to reduce its effects if it comes to be. 

But damn... that treatment will not be fun. 

The Laser Photocoagulation, though permanent, and only requiring a few therapies, often causes peripheral vision loss, reduced night vision and eye bleeds; and can rarely cause severe effects too. And the injections can cause severe issues too, including loss of the eye, formation of cataracts and pain too. 

ouch doesn't do this justice...

But I surprised myself by how I took this all. 

First of all:

When I was told the bad news today, I took it all in stock and found myself doing the exact same thing I did to rationalise and focus on the things I could control, when I was coping with the shock of my initial diganosis with a life threatening disease

Almost automatically now; from the sheer repetition, the sheer amount of times I've had to do this I guess, I found myself 
(1) taking a step back, detaching myself from the unproductive fear and negative emotions (I had what I had now; and those thoughts, originating from MY MIND, weren't doing anything but making me feel worse about the situation, right?)
(2) focusing on, questioning and analysing my situation and my fears and doubts until 
(3) I could see what the best thing I could do for myself going forward was. 

In this case - yeah, I had this horrible announcement, and these horrible treatments in my future, but what was worrying and stressing about what I couldn't control, the past, and the pain in my future, gonna do other than make me feel bad about myself? Nothing, right? 

So I should focus on the things I could control. My questions of my doctor. Finding out if there's any alternatives I could take. Researching current treatment modalities, familiarizing myself with the treatment and figuring out how I could best cope with it all. 

Being happy and positive in all the occasions I could was another thing I could control. And all the occasions I could meant every occasion, every second of my life, except for moments of shock after bad news and the moments of pain that comes from procedures. Being aware that those moments were coming wasn't leaving me in despair, he fact that I could acknowledge they would come meant I was prepared; I was ready for when they did; and when they did, not only would I cope with their after-affects better because I was ready for it, I'd be able to get through the actual procedures easier too - because I'd be looking at the big picture. Something I talked about here: 

I was already looking at the bright side of this; the things on my side and the things that this could bring me. Despite all the mental preparation I'd done above, I still had a little fear; but when I took a step back and questioned that fear, I realised that the fact I'd caught it early, and been so proactive in getting on top of it (I've even arranged for my angiogram scan to be done even earlier - tomorrow actually - watch my Facebook page for updates) meant I had very high chances of avoiding any major issues like blindness and possibly glaucoma too. Though it may affect my going to uni for yet another year or at least interrupt my study - the fact I'd gotten it now, early into the semester, made taking that year off that much less burdensome - the fact that I'm still young meant I had years to get back into it and even if it did stop me from attending, it could allow me to focus on other things too. And I knew I could control HOW I DEALT with my situation. If there's anything these experiences have taught me - it's that our minds are powerful things. We and only we could control how we felt at any time in our lives; and when you can, why not be happy? I proved this to myself again today. When describing what I was seeing to my doctor the next morning, I realised the black ball with string attached to it" floating around in my left eye looked exactly like a "black semen." I blurted that out and the doctor, my worried mother and I all cracked up at that. 

This mentality - this ability to see things in "a second, better, more constructive way" - it wasn't "brave"; it didn't require "willpower" or "wisdom" to do. All I did to get through this tough time was take a step back, analyse and think deeply about what I was doing and think "What's the best thing I can do for myself going forwards?" And that's something ANYONE - including YOU can do to get through ANY hard experience! It may take some time to do - you may not see it straight away and you may need to TALK to someone to get there but YOU CAN DO IT. For ANY struggle you're going through. 

In this talk I gave, I explained how you can do this for any obstacle you may be facing!


The good that can come of this wasn't easy to see straight away. But I knew that at the very least - this experience would allow me to see how patients of eye diseases feel, every day of their lives. 

As I was driving in to emergency on the second day, and as the emergency doctor told me it may be a detachment and that I had to be seen ASAP, I was scared I could lose one eye's vision... and that was sobering, hell, it was scary at first. I was keeping my left eye closed for the journey into hospital. It was too disconcerting leaving it open and seeing red, and a floating black semen flying around. And when I did - I saw just how little I could see in comparison to having both eyes. Naturally, my left eye is weaker, it can't see as far as the right can. But even then - there's a whole side of me that'd be lost if I lost the vision in that eye. When I was walking around the hospital room, finding the eye clinic, I needed my brother to stay on my left shoulder and guide me the whole time to stop me from bumping into people or signs or structures. 

It made me realise how much even impaired vision, or half vision can be debilitating and hard to manage. 

We take our vision for granted sometimes... and everything we see - no matter how  - its beauty deserves to be recognised. The very ability to combine the data of 120MILLION cones in EACH of our eyes into something comprehensible is amazing on its own. Macular degeneration is something that affects many older people. This is how the world looks if you have it: 

But if I told you there are currently 39million blind people in the world; 80% of whom DON'T NEED TO BE THAT WAY - and that it costs only $35 to give someone their sight back (click here to find out how), wouldn't you wanna do it

Even if you can't donate right now, I'm sure you'll appreciate every second of your sight that much more now for it. I know I am. 

And Third:

Some interactions with my family today taught me some things myself. 

When I was told this news, and I told Dad about it, at first he went off at me. He asked me "Why aren't you wearing your glasses? Why didn't you take precautions!" I have a prescription pair, but as my right eye is fine and I can see clearly, and my left is mildly weak, I don't wear it.

My immediate reaction to that was anger. Glasses COULD NOT HAVE POSSIBLY prevented this. There was an occlusion in the veins of my eye. Only a broken off clot, or damage to the veins or other structures of the eye for other reasons could have caused that.

So why was this arsehole blaming me for this????

I was angry - and I let him know it. He always does this. Almost always when something happens - he starts blaming me for it - as if I could have prevented it. Sometimes he's right. "If you hadn't gone bike-riding in the middle of the day... you wouldn't have gotten a sunstroke." Very true... and that was dangerous. "If you'd taken my advice earlier and put on coconut oil before, your skin may be even better now." Yeah... well, maybe.

But other times - like this situation, his always blaming me when I cramp, asking "Have you taken your magnesium I gotten you?" when, on most occasions I had, and both my parents admonishments and accusations ("You didn't put on creme because I didn't see you do it!"), they get to me cause they happen over and over again. They can't possibly help - and often - I already had done those things and they weren't helping.  

So why kick someone when they're down????

But they do have a point sometimes. As do many people who criticize us. And though I never take criticisms from anyone else personally; indeed, I look at them as an opporunity to improve myself and my ideas, those closest to me, my family, I often ignore and get frustrated by... as many of us do. 

When they're wrong - they're wrong and it is frustrating. But not only should I contain that frustration and work on reducing that - I should NEVER let my pride from admitting I was wrong. 

One of my favourite quotes from any book ever was from Christopher Paolimi's Eragon series. Eragon, the hero, had admitted he was wrong. And wisely said;

"Only if you are afraid of looking foolish, [would I continue to maintain I was right when I wasn't] and I would have looked far more foolish if I persisted with an erroneous belief".

NEVER assume you're right. Always stand to be corrected; or else you risk not only being a fool - but harming yourself for your pride. 

I can stand to improve on that aspect with those closest to me. And I will from now on.

This experience - though daunting, and though it'll continue for a while now, can still teach me and make me a better person. In fact any experience in life can. 

But only if we let it.

My angiogram is tomorrow. Wish me luck! But either way it goes - I'm sure I'll be fine. At the very least, I'll be happy. 

An Update:

What's going on now, written on the morning of the second day after I wrote this. 

I managed to expedite my angiogram to Friday (the day after I wrote this) in order to get on top of it ASAP and start getting my treatment. When I went to see him though, I noticed concern on his face. After a few minutes of checking my eyes, he concernedly said,

"I think you need to go to Sydney Eye Hospital emergency." 

"Your optic nerve (responsible for taking signals from the back of your eye to the brain) seems to be a little swollen too now. Either that or it may be affected by it soon, as there is some near there..."

"And the retina, which does the main job of seeing and capturing vision looks pale around the center too..."

"I don't know what is exactly causing it... I don't know if it's bad. But you'll need a high dose of steroids, with constant monitoring I think..."

Obviously, I was concerned. Not only by the tone of his voice, but by what he said.  

The paleness possibly meant ischaemia, or cell death. Once cells die in some regions of the body... they don't grow back. And from my recollection... the eye wasn't one of them... And the optic nerve swelling too... that could mean complete vision loss in the left eye...

So we raced over there, were seen, and after a bit of a scuffle, and phone calls made to my haematologists (as they have mainly eye specialists on deck there they were unfamiliar with my condition and what medications I could/couldn't take) - I was admitted and given some methylprednisone. 

That alone wasn't easy... I was up til 3 and woke up at 6:30. 

But the eye doctor's next visit and check-up were much harder.

My worst fear was confirmed. 

There is still some. I can still see. But only hand movements from a few feet away. My peripheral vision is slightly better - but it's still peripheral vision, I can probably read HUGE letters nearby, and see shapes, which peripheral vision is supposed to do. 

But it STILL sucks. 

I dunno if I can play basketball again, ride a bike safely, drive. I don't know how it'll affect my ability to read or write - probably... well, hopefully, it won't do so too much.

I don't know what caused it...
So I don't know if it'll happen elsewhere. Even in my other eye... sometime in the future.

But at the same time, there are some things I do know... 

I'm a beast. 
What REALLY matters is still there.
I can still see. I can still think and learn.
I can still smile.

It's happened now. I can't change that. Even while I was getting the news... I was taking a step back, asking WHY of my doubts and fear and taking all those negative emotions away. I accepted what had happened, and was thinking about what I could do, what I should ask, instead of doing things that'd only make it worse; panicking and falling apart. I was focusing on what I could control instead of what I couldn't. My future

I've become adept at doing that.

You may be thinking, " You're so brave, so courageous, so inspiring to have done that! "

But really... and I've said this before... this attitude, it didn't take bravery, courage, willpower or strength to put on!

All it takes are a few simple steps - a few simple things that everyone does nearly every day too. All I do is apply them to not-so-everyday situations. 

All I did was:
1) Take a step back from my emotions and fear, and just analyse what I did... without emotions blocking my best judgement.
2) All the fears, the anxiety, the panic I had, I questioned, until I saw that most of them weren't really doing anything. The ones that were, I questioned again...
3) Until I could see a better, more constructive way of looking at things and pursuing my future. I asked as many, correct questions as I could of the person that knew; my doctor, as I could to help get me there. 

I talked about this more in that talk I showed above... But I mean you do this kinda thing everyday - every night before you sleep, you probably look over what you did, your interactions, some awkward situations and try to think what happened. You do it when looking in hindsight, and when you learn from mistakes. 
You do it when you think about how to best approach a test, or a job interview, or a game. 

Well, the latter you may not do now... You can do that to get better and achieve what you wanna achieve... but the others you definitely do. 

I didn't do anything special... I just made them work for me instead of against me.
All I did was get MY mind on MY side. 

A talk I did on this in the middle of this crisis

And if there's anything you can take away from this... yourself and to your friends/family (by sharing my experience!) - I hope you use this to get YOUR MIND ON YOUR SIDE too.

Feel free contact me about this, or anything you may be going through - contact details on the side and here:

Another update:

So for a while they were suspecting the venous occlusion happened causing all this. But more recently, my ophthalmologists started believing it was my optic nerve that started the issue. It looked especially swollen when I went in to see them the Monday after (6 days after this) and we had to rule out any leukaemia relapse causing this...

So I had 2 MRIs and, more recently, a lumbar puncture to rule out the worst. 

And I'm happy to announce, that it's at least not that causing this all! Which is AMAZING NEWS!!!

Thanks to everyone who's been supporting me through this - especially those amazing strangers, and those I've helped before, who sent very personalised words of encouragement and advice through all this! 

To the amazing doctors and nurses - who not only got me through this medically, but managed to care for me through it all. All you guys, especially those who I bugged at midnight a few nights when it was really a crisis (and all of you messaged back giving me info and advice on what to do - EACH AND EVERY ONE!) - The biggest, most sincere THANKS for being the kind of people I talked about here - the kind of people 
We All NEED to be.

Thanks to my family too - THANKS - something I can never say enough

Monday, February 2, 2015

How We Prepare To Feed 10billion People. My Essay Response.

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Preparing for an Impending Food Crisis.

This was my entry into an international essay competition to pick delegates for the annual, amazingly inspiring Youth Agricultural Summit (find out more about it here). Results come out in March. Wish me Luck!!

Well... I actually won this! And got to go to the International Youth Ag Summit - and we delivered our decleration to the UN Food Security Council in Rome 2015! It was awesome, and an update on what we did together can be found here:

Essay question:

In the next 40 years, it is projected that the world population will grow from 7 to about 9 billion, yet for many different reasons, 1 billion people today still do not have enough safe and nutritious food to eat. Demand is rising while resources are dwindling. Solutions are strongly debated across rural, urban and international communities.

Using your own village, town, city or country as your point of reference, tell us what you think are the underlying causes of food insecurity, and the effect it can have on a population, both at a local and global level.

Based on this, explain what changes to agricultural or food chain practices, or personal and community behaviors could help solve these issues to create a more sustainable local and global society.

My Response:

842 million people, one eighth of the entire world population, are undernourished right now. Of those, 826 million live in the developing world(FAO,2013)... It seems staggering that this exists despite the fact that we currently produce nearly enough food for the world's 7billion people(FAO,2012; Lappe,1998). But it does. And as the global population climbs, and the environment changes further due to global warming, it becomes imperative that we prepare for what may be the greatest global famine in human history.

But before we find solutions, we need to understand the problem. Like many of the world's problems, the major driver of lack of food security is poverty.

It seems intuitive; if you don't have money, you can't buy food. If you can't even afford your own food, how can you, the small scale farmer who produces 70% of the world's food(FAO,2012), feed your nation? Asia's rapid decline in undernourishment rates by 41% from 2001-2012; in line with the socio-economic progress of many countries in the region, as opposed to Africa's increase in hunger rates by over 25% (FAO 2001, FAO 2012, Lappe 2013); where conflicts and instability spurred an increase in poverty rates, in the same period, proves that poverty is proportional to reduced food security. Not being able to purchase ample, quality food leads to chronic malnourishment and stunting, condemning those affected to lower incomes, bad health and a life of poverty(WFP,2014). Poverty is directly correlated to higher fertility rates (Lappe et al,1998), which increases pressure on small, sustenance and commercial farmers to produce for their families, putting income-pressure on the family as well as adding pressure to rural systems and the nation as a whole. Small-scale farmers under constant stress to survive are doomed to not being able to save or otherwise secure capital to purchase more effective seed, fertilizer and equipment for farming; leaving them stuck in this aggressive cycle we know as the poverty trap. When combined with external stressors such as poor market stability, war and displacement, and arguably the most concerning of these; climate change and a rapidly increasing population, the outlook for the world's poor and hungry seems bleak.

The issue can't be fixed through the dumping of food packages though. Food doesn't appear out of thin air. What we need to do is increase its production.
The UN knows this. It forecasts that the world needs to produce 60% more food by 2050; with developing countries needing to produce 77% more to keep up with caloric demand (APRC, 2013).  From intuition alone, it seems that more investment into smarter agriculture is key to getting on top of this problem. The data backs it up; investment in agriculture is five times more effective in reducing hunger than investment in any other sector (FA0,2012) and GDP growth in agriculture is twice as effective as reducing poverty than growth in other sectors (World Bank,2008) too. 

My nation, Australia, recognises this, and invests sizeable amounts in both agricultural research and deliverance of physical infrastructure that enables our major aid partners in Asia and the South Pacific to increase crop yields. Yet though we're making valuable investments, that are providing undeniable results, we still only allocate 7% of our aid budget to this sector (DFAT,2014). We need to invest more, as well as improve some aspects of how we invest this aid. 

Investment into agricultural research is a major focus of our agricultural foreign aid program. Agricultural research is responsible for the production of food for 60million people/year domestically and 400million people/year worldwide (D'Occhio,2011) and the ACIAR (Australian Centre for International Agricultural Research) heads our aid commitment to research with a very solid, effective framework. Collaboration with international research-agencies such as the CGIAR, inclusion and involvement of scientists from the developing nations we're collaborating with, as well as a focus on designing solutions to mitigate the effects of climate change are key parts of our five-pronged strategy that impress strategy analysts (ACIAR,2011; Marslen,2014). The $448million invested into international agricultural research gave a $30.17billion return, a ratio of 67:1 with direct benefits totaling 15:1 (ACIAR,2013). These benefits are derived not only from the more effective agricultural aid programs that Australia initiates from it, but the sharing of knowledge and consultancy we provide to NGOs as well as private partners.  It's also key to note that Australia, which shares similar challenges to the nations we're helping, such as drought and water management, will receive spill off benefits from this research (Marslen,2014) marking it as an even more attractive investment. This staggering value for money, for us, and them, justifies this investment and makes a strong case for further investment into agriculture.

But right now, Australia's investment into this research, if anything, has been dwindling, following an international trend of declining research in the agricultural sector from 13% of all OECD investment in the Green Revolution, to 4% in 2008 (Harding et al, 2009, Alston et al, 2000).

Though our research and aid program is effective, there are many ways we can improve its impact too.

Furthering partnerships with private organisations, whose investments into agricultural research have increased 4 fold in the last decade (ABS,2001, ABS,2012) and in particular, partnering biotechnical firms with ACIAR, will allow them the opportunity to capitalise on markets such as the five major crops of the developing world that the "Big 7" seed companies currently neglect; sorghum, millet, pigeon-pea, chickpea and groundnut (UN General Assembly Special Rapporteur,2008). Encouraging investment into development of superior seed of these crops, through focusing some public research into this sector, will help garner our companies a niche which is bound to pay off, both to our own nation's economy, and those they're helping, especially as the world population grows further, and food security becomes a bigger issue. Furthermore, encouraging these firms to then initiate programs similar to Monsanto's Project Share, which gives free seed and training to small-scale farmers in India (Monsanto,2014), will result in the spreading of these superior seeds, access to new markets, reduction in micro and macro-hunger, as well as empowerment of small farmers. This is but one example of how further public-private collaboration on research projects can create growth for all parties.

The arguments above makes a solid case for the need to increase and optimise research and programs that improve agricultural yield and supply chains, but the latter example highlights a need to get the benefits of this investment to those who need it most; small farmers. The most successful aid interventions derived from our research, the use of germ-plasm in Indonesian forestry, pig breeding in Vietnam, and integrated pest management in the Philippines; accounting for 55% all conceived benefits of Australia's research programs (ACIAR,2013), have two things in common. They produce solutions that are have wide applications, and ones that can be integrated by small farmers. Focusing more research and aid programs that do that will result in more benefits being accrued for millions of starving people.

There are many, innovative ways that we can get solutions and knowledge to the people who need them most. Delivering products that increase agricultural yield through a micro-franchise/social-enterprise, for-profit model, vastly increases the number of people on the ground who can benefit from research. EcoFuelAfrica is using such a model to deliver kilns that convert farm waste into energy, fertilizer, and extra income directly to small farmers, and is doing this for a profit, which is reinvested into growing it further (EFA,2015). This ensures this innovation spreads, as the model is scalable and the investment is seen as just that, an investment, rather than an expenditure. Establishing, or else investing and expanding similar programs through this model will further ensure our aid, and private philanthropic ventures go furthest.

Increasing small farmers' access to knowledge and markets is another factor that can be improved with innovation. Australia's investment into developing  market infrastructure of Asian/Pacific developing nations (DFAT,2014) is wise, but utilising the region's near 70% access to mobile-phone technology by 2017 (eMarketer, 2011) to spread  knowledge of market prices, weather patterns and farming techniques, and access to financial services is something our aid program can definitely facilitate. Indeed, partnering telecommunications and technology providers with biotechnical firms and government aid programs to deliver such messages can create further economic benefits and employment to us, those on the ground we're helping, as well as companies worldwide too, furthering our impact and making it viable.

Investment into agriculture and delivery to those who need it most is not only one of the most effective ways to secure international food security, but also world poverty and world-suck in general. Australia, though small, is already responsible for much of the world's food security, but there are many innovative solutions and effective policies that can improve our impact, as well as that of others who want to make this world a better place. These are but some of those, and I'd be excited hear others and add mine to what I'm sure will be a gathering of great innovative minds at the 2015 YouthAgSummit. 

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