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:

It happened again. In the other eye. But it's OK. I didn't lose that one =] Update 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!

Secondly:

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 was no blood supply in the central region of my vision. A lot of vision there is nearly completely lost. 

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:
email: nikhilthegrizzlybear@gmail.com
Facebook: www.facebook.com/musingsofamedstudentpatient

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

But I will NEVER STOP SAYING.

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. 

References:

The State of Food and Agriculture, 2013", United Nations Food and Agriculture Organisation, 2013 retreivable from: http://www.fao.org/docrep/016/i2845e/i2845e00.pdf

"The State of Food Insecurity in the World 2010"  United Nations Food and Agriculture Organization. 2010. retrievable from: http://www.fao.org/docrep/013/i1683e/i1683e.pdf

"The State of Food Insecurity in the World 2012" United Nations Food and Agriculture Organization. 2012. retrievable from: http://www.fao.org/docrep/016/i3027e/i3027e00.htm

"Reducing Poverty and Hunger, the Critical Role of Financing for Food, Agriculture, and Rural Development." Food and Agriculture Organization, International Fund for Agricultural Development, World Food Program. 2002  Retrievable from: http://www.fao.org/docrep/003/Y6265e/y6265e00.htm

Frances Moore Lappé, Jennifer Clapp, Molly Anderson, Robin Broad, Ellen Messer, Thomas Pogge and Timothy Wise, "How We Count Hunger Matters," Ethics & International Affairs, 2013

Causes of Food Hunger Factsheet. World Food Program 2014

Frances Moore Lappé, Joseph Collins and Peter Rosset, with Luis Esparza, "World Hunger: 12 Myths. 2nd Edition",  (fully revised and updated), Grove/Atlantic and Food First Books, October 1998.

Jenny Gustavsson,Christel Cederberg,Ulf Sonesson, Robert van Otterdijk, Alexandre Meybeck, "Global food losses and food waste", FOOD AND AGRICULTURE ORGANIZATION OF THE UNITED NATIONS, 2011

"World Development Report 2008. Agriculture for development", World Bank, 2008. Retrievable from: http://siteresources.worldbank.org/INTWDR2008/Resources/WDR_00_book.pdf

Australia’s new development policy and performance framework 2014-15, Department of Foreign Trade and Affairs, 2014 retrievable from: http://www.dfat.gov.au/about-us/publications/Pages/australias-new-development-policy-and-performance-framework-a-summary.aspx

"Strategic Framework for International Agricultural Research within Australia’s Aid Program", Australian Centre for International Agrictultural Research, 2011

Tess Marslen, "Australian Aid: Investing in Agricultural Research and Development, Strategic Analysis Paper", Future Directions International, 2014 retrievable from: http://www.futuredirections.org.au/files/sap/FDI_Strategic_Analysis_Paper_-_Australian_Aid_in_Agricultural_Research_and_Development.pdf

Returns to ACIAR’s investment in bilateral agricultural research, Australian Centre for International Agrictultural Research, 2013, Retrievable from: http://aciar.gov.au/files/ias_86.pdf

 Alston J.M., Chang-Kang C., Marra M.C., Pardey P.G. and Wyatt T.J. 2000. "A meta-analysis of rates of return to agricultural R&D: ex pede herculem?" Research Report 113. International Food Policy Research Institute: Washington, DC.

Harding M., Tingsong Jiang and Pearce D. 2009. "Analysis of ACIAR’s returns on investment: appropriateness, efficiency and effectiveness. "ACIAR Impact Assessment Series Report No. 63. Australian Centre for International Agricultural Research: Canberra.

Research and Experimental Development, Businesses, Australia, 2000-01, Australian Bureau of Statistics, 2002 retrievable from:

Research and Experimental Development, Businesses, Australia, 2011-12, Australian Bureau of Statistics, 2013 retrievable from: http://www.abs.gov.au/AUSSTATS/abs@.nsf/mf/8104.0

"Promotion and Protection of all Human Rights, civil, Political, Economic, Social and Cultural Rights, Including the Right to Development, Report of the Special Rapporteur on the Right to Food" United Nations General Assembly, January 2008

Monsanto 2009, Monsanto & NGO ISAP Launch Project Share - Sustainable Yield Initiative To Improve Farmer Lives, Monsanto Press release, February 2009, Retrieved from: http://www.monsanto.com/improvingagriculture/pages/project-share.aspx

"Why Micr-Franchising?" Factsheet, Eco-Fuel Africa, 2015. Retrieved, 15/01/2015 from: http://ecofuelafrica.co.ug/why-micro-franchising/

Pain and Suicide.

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 Anyone who's ever had a cramp knows that whenever you have one, you think of nothing else but "When will this end??"
Well, I've been getting them for the last 8months now. They've been happening every day, everywhere and they happen for no reason we can find out whatsoever. 

Sometimes they go on for hours. Usually, I can't even stretch or walk them out; they happen in my abs, which I just have to bear as there's no way I could stretch them, or on opposing muscles simultaneously... Stretching one side's cramps out makes the other side's worse. Often, they happen while I'm sleeping... Every second night, I wake up, screaming, writhing in pain until I can untangle myself from my blanket and bear it out. 

Sometimes I wake up my family with those screams.

Nothing has helped. My doctors don't have a clue. I've tried literally everything. Electrolytes - I drink them every day, every night. Regular stretching, cutting out certain spices/vitamins, every medication; alternative and proven, exercise (I was going through them while I trained up for and did my 200km bikeride too - the feeling of having a calf muscle cramp-up while you're riding down a hill at over 70km/h is terrifying beyond anything you can ever experience).... but NOTHING WORKS!

I can't even begin to express how bad these last few months in particular have been!

Every minute of every day I know they're coming... Every time I even move my foot in bed, or reach for the remote, or get up from a chair, I dread the writhing hot, burning pain that is bound to ignite.





But the last 3 or 4 days... it's gotten even worse. 

I'm writing this now at 5a.m. I tried going to bed at 11:30 last night, before the cramping started. I've managed to get into 1 cycle of deep sleep, but woke up from that mid-way.

I was barely able to open my eyes as I stumbled around the house, slamming the walls with my hands, trying to stretch out my burning fingers that are curling up like a dying spider against my will.

That was an hour ago and after slumping back wearily into bed after my hands and quads finally stopped spasming, I've woken up again twice, only to have my abs, and then my calves and shoulders start burning up. 

I'm typing this out 1 key at a time, massaging hands that are aching, threatening to start spasming again...

This FUCKING. SUCKS!

EVERYTHING I DO, I DO FEARING WHAT MAY COME...

I may seem like I'm in control and happy all the time. though I don't let it affect my overall outlook and still can, and do, smile, and enjoy everything I can, EVERY. DAY is a struggle. 
There have been a few times, over the last year or two in particular, where I've wondered... "why do I even bother? I mean, it'd be so much easier if I... slipped away..."


When you've been living for as long as I have not being able to remember the last day you weren't in pain, able to count the last good sleeps you've had in the last year on your fingers; wondering, and in awe, at the energy everyone else seems to have, at age 21, you can't help but wonder those things every now and again... 

This is the life of someone with a chronic illness... or someone who lives with chronic fatigue.

But though I've wondered and thought about it; at one point, when I was hallucinating (due to a near-fatal toxicity from a drug), in so much pain and out of control I even screamed at my nurses and my own mother to euthanize me... I've always, during those rough patches, remembered these few things.

First - that pain, which I've been forced to go through so much of over the last few years - it's temporary. 
Though it sucks... it's finite and has an end. What usually hurts us more than any neurological response of the firing of some nocioceptors is the emotional toll that fear of that pain puts on us. In the end... when you take a step back and think about it, how it affects us is something that WE control. So why should I let it hurt me more than it should? (how I do that, and how you can if you feel the same way - I talk about here).

Second - I remember the words of my doctor. When I asked him about what he thought of euthanasia (it wasn't prompted by an ideation of mine, I was just interested on his opinion one consultation), he told me "I've had a few patients who've come in asking if they could end it. But most, in a few weeks, come back shocked that they could even think such a thing."
Pain is horrible. Something that bad, it's only natural that it can affect our judgement. But pain, especially that associated with treatment, or recovery, it does end... and once you're free from it - life becomes a much brighter, nicer place.

But when it's chronic pain, something that seems to, or may well go on forever... when you feel like there's no end to this, that this pain will keep coming back, over and over (as it may well do for my cramps); that can be even more disheartening than even the horrible trauma that chemos, pleural biopsies or the worst pain imaginable may bring on.

But in the end... if you, now, in the future, or anyone you know is going through that... remember this third thing.

That though it does suck while it goes on, and though it may impair, or affect us, there are still so many good things worth living for. And that there are still so many things we can still do, despite it.

This is how I get by, and somehow, often manage to be happy despite all the crap that I have to go through. Unfortunately, I'm not an extraordinary case... many people go through the same, or similar, or worse hurdles... every day of their life.
It helps when you have great friends, a great family, great people to talk to who give you someone to talk to, an understanding nod when you need it, or something to laugh about during those.
Many don't have that. If you're one of them, I'm happy to talk about it (contacts below), if you think a friend or family member, or even stranger is going through that - be there for them or feel free to pass them on to me.



But sometimes... The whole world seems bleak; you struggle to do even the most menial tasks, you've been sad for so long that you forget what it feels like to be happy... and even the things you love fail to bring joy to you anymore.

You don't need to be in physical pain for that to happen. Anything can bring it on; loss, bullying; in fact, for many, nothing does... it's like it's your natural state... and the self-loathing we feel when we think we're worthless because of that... that can push us further into that sad, blue pit.

Depression... that's a whole other pain of its own. It's no coincidence that major depressive disorder is present in at least half of all people who commit suicide. Probably more. I've been through depression myself... and it's not always for the reasons you'd think are "obvious" in my case too... 
I'll be writing a big one on that topic soon... but in the meantime... if you're struggling to cope... if you're struggling to find reason... I want you to watch this.

And read these:

My experience with depression due to loss. How I got through that.

My experience with depression due to self loathing, self-esteem issues and loneliness due to doubting myself. And how I (and how you can) got through them.

Contact me: 
Here on the blog 
Email: nikhilthegrizzlybear@gmail.com
Facebook: www.facebook.com/musingsofamedstudentpatient

Bill Gates' Idea to Combat the Sanitation and Clean Water Problem In Urban Communities. Mine to Get Them To Rural Communities Too.

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Recently, Bill Gates announced an idea that the Bill and Melinda Gates Foundation has been working on for a while. One that may just solve the global issue of lacking urban sanitation infrastructure.

The "Omniprocessor", a working prototype of which is shown in the video below, takes sewerage in one end, funnels it through a processor, boils it and then uses the dried out sewerage sludge as fuel to keep it boiling. The water vapour created from the sludge is used to power a turbine, which generates electricity, and then funneled through filters which produce clean drinking water. 
The electricity can be used to power homes and entire regions surrounding the plant. The waste is collected as bacteria and pathogen free ash, which can, with proper knowledge, be used as fertilizer.  It's as close to a waste free, efficient generator as you can get!

Bill Gates' great explanation of how the processor works. 

The idea in itself is genius. 40% of the world's population to this day STILL openly defecate, or else have little or no access to proper sanitation! That's over 3 BILLION people! This processor can convert 14 tons of sewerage into drinking water and electricity every day, processing the waste of 100,000 people in one plant!

But what's truly genius about this is the way it's being sold. 

Bill Gates understands that this invention can really combat the issues of sanitation, access to clean water and electrcitiy. But he understands that the impact this can have beyond just the people who use, and are supplied with energy and water from the plant, because this will, for the first time, convert sewerage and the issue of sanitation from being assocaited with a cost, to a profit. 

And to get this out there, he intends to allow entrepreneurs to buy into this system and make it for profit. 

This is the quickest way of getting it out there. Even if, say, the Bill and Melinda Gates were to invest $3 billion (a huge amount for the foundation - it's the total amount it gave away in grants in 2013) into this system, only 2,000 plants, or 200million people will get access to clean water. That's less than 5% of the 2.5billion urban poor who lack access to proper sewerage facilities. 

Once working models get up and out there, and profit margins can be established from this (the next step after the development of the prototype in the video above), this model will take off quicker than any other! Indeed, a for-profit model has been shown to be more effective, and more likely to spread quicker than aid or government interventions, as you'll see in the video below. It also frees up more money for the Gates Foundation to spend on other projects. 

Business models for the world's poorest, and an interesting idea; micro-franchising, which I'll talk about below

Now, a for profit model is more efficient and more likely to be more expansive than any other. I wrote about this in a little detail here, and talked about the concept in a post on how we profit by giving to charity here. But I'll look into and post up great investments you can do to invest in people's wellbeing and profiting from it soon on this blog! If we can make charity and human development something to profit from... and if we can make it clear to large corporations and businesses that the poor aren't just a burden, a people to exploit, but rather a potential market, there'll be NO stopping human development! I have some big ideas to combat that problem too... and posts, and videos, and partnerships on that will come soon. I may even be looking into getting a Bill and Melinda Gates grant to make that dream a reality... 

But despite all this goodness, this Omniprocessor isn't a fully completed product. And it won't solve everything. 

We Need To Ensure Everyone Benefits

The plant itself is designed for urban environments. Rural regions have similar issues with sanitation, and even more severe issues with getting access to clean drinking water than urban areas do in many cases. This processor needs to be downscalable if it wants to help those communities. But there are already some interesting ways rural communities can get access to clean drinking water, electricity and basic sanitation. Here they are, with my suggestions to improve them, and get them out there. 

Getting Everyone Access to  Electricity

Small-Hydro is a centre of innovation which focuses on getting rural communities access to electricity through, would you know it, small-scale hydroelectric plants. Where there's running water, with the assistance of engineers to set these up, you can get communities access to electricity, which can, for the first time, give them access to refrigeration, lighting at night and connect them to the outside world, which can potentially improve an entire communities' living standards. In fact, my father was, while we lived in Fiji, part of the energy department, and worked with Australian Aid engineers in developing and delivering small hydroelectric facilities to tribes of Fijians. What's amazing is that those Australian engineers used that experience to help develop the Snowy Mountain Hydroelectric Scheme, which, to this day, provides 10% of Australia's largest province's energy, free of charge, proving that aid can benefit the behestor as well as the benefactor.

Getting Everyone Clean Water

Safe drinking water, another feature this omniprocessor is promising to deliver, is also being combated in many unique, innovative ways that can help people in big and small communities. Here are 6 pretty cool, small scale ideas that are promising enough, and have the capability to get millions of people access to safe drinking water. What these lack though is a way to get them to as many people as possible. If just one of these ideas could be implemented, and made to become for profit, or else, made to work as a social enterprise (a business which exists and profits ONLY to benefit people, rather than its owners hip pockets - I'll be doing a blog post on them soon), they could spread beyond imagining, quicker than any aid or charity intervention could. 

Pollinate Energy, a social enterprise concerned with getting homes and families in slums access to solar powered lights, providing safer lighting and heating for those living in them, has a unique business model which is very promising and could definitely be applied to one of those 6 ideas above! They employ "pollinators", people FROM the community, to go in and sell those solar lights straight to people who could benefit from them. Because these pollinators know the people and the culture from the inside out, they are more effective at selling those lights and conveying their importance (they are not only safer, they also save slum dwellers on costs of buying kerosine everyday) than any stand or stall could ever be. They collect the payments for these lights through microloans - lay-by style payments, and they've been so effective from start-up, they're thinking of expanding to other cities now! And you can help out! Buy a very handy, solar powered light from them, and you're helping them expand and make their impact even larger than it is already! 

The impact pollinate energy has made has been HUGE!

Their impact is huge - but their model is very replicable. Imagine if one of those water filtration systems were to have such a model, with possibly a microfranchise established around them (talked about in the second video, a Ted Talk above) set up! They'd make BILLIONS while also helping the poor and solving the problem of clean water for millions in the process! 

And that idea can be applied to other issues too...

  

But in the meantime, as I, or some genius starts up such a process, you can help too, in your own, ordinary life, by purchasing products from social enterprises such as ThankYou Australia. Everytime you're getting bottled water, buy a bottle of water from their brand (they're in most major retailers) and each product gets people access to clean water! I mean, if you're getting water, or hand-soap, or muesli bars (the hand-soap is so good for your skin - I can attest, my scarred and delicate skin has actually benefited from it, and the muesli bars are tasty and healthy), and you enjoy their products, why wouldn't you get it from their brand which goes on to help others over one that goes on to profit some already rich guy? 

I'll be talking about social enterprises in more detail on another blog post soon, by the way, look out for that too!

Getting Everyone Access to Sanitation:

HealthHabitat is an example of a charity which is trying to combat sanitation too, albeit, in a different manner to Bill Gates. Their goal is to improve households, which leads to improved living standards and outcomes for the world's poorest. They design and develop sanitation interventions for entire communities, improving toilet facilities and the like as one of their primary goals. And the way they deliver their services is very effective (which is extremely important, I talk about why here); often using what communities have much to offer - labour - and supplying them with what they don't have - designs, special equipment and expertise to get projects done. 

In one of their projects, in Nepal, they designed a unique housing system, which incorporated sanitation as one of its primary goals. Their toilets, however, had a special feature - they added special biological agents which converted sewerage into usable natural gas, which could give villagers a safe new fuel. Now at first there was some opposition, and fear of using such foul-sourced fuel. Villagers not only didn't know how to use the fuel, the fact that it came from, well, to put it bluntly, their shit, made them less inclined to wanna use it. Luckily though, the charity always consults and involves communities in holds their opinions on their projects in high regard, an important, simple idea that not enough charities do (I'll write about how important community involvement in ensuring our efforts to help others goes is). Because they took them into account, that opposition to bio-gas was soon dissolved and many Nepalese villagers now benefit from the cheaper, cleaner fuel. But that last factor brings up the other major issue with Bill Gate's Omniprocessor idea.

Community Opposition To Drinking Waste Water

Now you could write a whole paper on this topic and how to get around it. Many have. 

But this is probably gonna be one of the biggest, most controversial issues, responsible for most opposition to getting people drinking water from Bill Gate's and Janicki's Omniprocessor  Gate's  idea out there. 

Community engagement, and community education, unique, and personalised to different communities and cultures around the word, will have to be included in Bill Gate's thoughts on how to get this invention out there, helping as many people as possible.

A lot more thinking will have to occur to get this out there. But I'm sure Bill Gates is on-top of it. Tell him your ideas to get through this - and I'm sure he'll be interested too. 

Comment and talk directly to Bill Gates on his OmniProcessor Idea here.

And feel free to let me know your ideas too. Write on this blog - on the blog's Facebook page or email me at nikhilthegrizzlybear@gmail.com - I'd love to hear from you. In the meantime - enjoy your day!