Blog, Inspiration/Motivation/Help

How it Feels to Have a Chronic Illness. And How to Explain it to Normal People.

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 “How are you going these days Nikhil?” 



It’d been literally half a year since I’d seen this group of friends – my med student buddies – and I had to do the rounds. This question came up a lot. And almost always, it was about my health. 

“So yeah I’m actually good!” I’d always start, smiling and gesturing wildly so as not to worry anyone. “In fact, my cancer’s at a point now where it can’t come back!” And to this, I’d get an emphatic ‘Congratulations!’, a shout of yipee and a toast and the occasional pat on the back (*wince* – I have some healing wounds there that aren’t getting better fast…). 

“But yeah otherwise, treatment for the graft versus host disease continues. And I mean though the skin is slowly getting better, the major thing left is the cramping, which can suck.” The faces become more sallow as I say this. “But hey, they’re getting better too!” I lied, and again they’d celebrate, albeit slightly less enthusiastically. 

Hey! What could I tell them? How could I explain to them the truth of how it affects every single aspect of my life. Even in this crowd of young, caring people, there was no easy way of really telling them what it really meant…

 
I don’t think people really know how much this can affect me…
Me getting up for the 10th time or something some night. Mum filmed it ’cause they kept me from sleeping for so long, we thought we may have to show it to the doctors ASAP.

And after a while… explaining it over and over again takes too much effort. Hence this post.


I guess you could argue that it’s hard to really talk about anything over the insane amounts of decibels that blast through a nightclub’s speaker. I guess you could say that lambasting about the constant frustration and the looming anxiety of something you can’t control for half an hour would break the social convention of small talk. But in truth, now that I think about, there really isn’t an easy way to explain how it really impacts your mindset, a chronic condition. 

Because unlike what most think, that frustration, that anxiety, the physical effects of a chronic illness – that’s only half the impact. Chronic diseases, mental illnesses, even things like stress affect our very mindset, they play a factor in every tiny decision we make and it was only after reading this amazing article/blog post that I feel I’m properly able to explain that now. 

 

It’s only half the pain… but that pain can be significant.



It’s called the spoon theory, and the concept is brilliant and encapsulates everything there is about having such an illness. 


Picture yourself having to walk around all day with 12, and only 12, spoons. Each little action you take – you get one confiscated. I know it’s in-feasible to have someone follow you around all day, and I know that handing one in may be conceived to be another action that requires another spoon that ends up in an infinite loop leaving you with no spoons, and that there may be all kinds of other particulars that may make this nonfunctional… Hey, I said it was a great analogy. Not a perfect one. 

I digress. Now… where were we? 

Every single action.

Waking up and hopping out of bed? That’ll be one spoon.


Finding the will to get up and brush your teeth. One more. 


Doing other… business… in the bathroom and then showering. Another one.


Putting on your clothes, eating breakfast and going out for the day’s business. 2 more please. 


We’ve only just left the house, and we’re down 5 or 6 spoons! 


You may think I’m exaggerating, but that’s life for so many people. People with cystic fibrosis, people with heart failure or latent blood cancers, people with horrible cramps like me will find some, most, even all of those tasks tiring. Right now, I’m scared of even getting up from a seated/lying position after 5pm, in fear of my whole body having EVERY SINGLE muscle contract at once (from my legs to my abs, to even my neck), leaving me dazed and staggering, doubly terrifying if I’m trying to get up steps (I’ve fallen twice already, which may have caused soft tissue damage in my knee) – even gasping wildly for breath (getting up and staggering to the car was what took me in to hospital the night before I found out I had another tumour growing on my rib). 

 

 
Me a few weeks ago. Facebook usually isn’t somewhere you post your down moments. The image of themselves as successful, happy people that people like to portray, combined with life highlights usually drowns out moments or cries out to nobody like these. I guess I’m lucky to have some friends who saw and cared to ask.

People going through severe depression find getting out of bed to be impossible. It’s too painstakingly hard to face the day or the world for some, too lonely for others – it’s unsurprising that it makes no sense to many – and leaving that first confine costs them significantly more than 1 spoon. 

Now imagine
the feeling of having to give that spoon up. Each. And. Every. Task. You. Do. And imagine having to
account for and plan out everything around not only your medications and appointments over the days/weeks/months to come, but also for how many “spoons” you have
left. Yes… sometimes you can have a “feel” for things and plan accordingly… But remember, often your condition can be unpredictable… leaving you caught with even less. 

And imagine having to pass up on doing things that are good for your career, good for you, or the things you love because you simply don’t have, or can’t afford the energy to do so.

So, where were we? Ahh that’s right… The rest of the day. 

So when you get through the day’s work or study, with travel, dealing with setbacks, explaining things like this to people and – could you imagine – kids… you’re left staggering around with 1 spoon.  If you’re lucky. 

And if you’re lucky enough to have the will, or else prop yourself up by speaking motivational nothings to yourself (or by taking heavy amounts of Beroccas or even stronger stuff) and manage to head out the door to “enjoy” yourself as I did that night, you’ll pay for it by having a semi (if that) rewarding night and by being forced to watch on jealously as “normal” people enjoy things like dancing, drinking and eating (don’t forget, the physical restrictions ALWAYS stay with us) and even walking without a worry. And if you wear yourself out too much – you’ll pay by having a few less spoons to use the next day. That’s if you haven’t worn yourself out already before you’ve even had the choice to go and have fun.

Because yes – you DO pay if you go over the limit. Harshly.

And no… you don’t get a break from it.
Ever.

For some… especially those who are poor (it’s hard to get extra qualifications or backing for your business, or even a job in the first place with this on your record) this can become a cycle that just continues on and on.

This thing looms over you, and drains you, in all ways, forever. And I may complain about it – I, hell, anyone with any such draining condition (no matter how “petty” or “whiny” it may seem) have the right to do so no matter what – but there are so many people who have it worse. 


I have the benefit of having a year off from studies, so I can, when I’m well enough, accomplish other things despite this. I also have a family, all amazing people, who care for me and do everything – from fixing me meals and taking me to appointments, to dragging me to my bed (which actually happened after that party 2 nights ago as my muscles were drained from enjoying myself and dancing for a few minutes) when I need them to. I’m still young and can look forward to a potential future without this. So many people DON’T have that luxury. 


Imagine being blind and having to rely on that carer, or services that may, or may not exist, all the time. Imagine having inflammatory bowel disease or some form of incontinence that means you have to rush to the bathroom (which you always have to be aware of, not just because of the embarrassment this could cause, but actually be aware of if they‘re close) at any second of the day. Imagine being a carer for someone with that illness and having to not only watch on helplessly as your loved ones struggle to juggle their spoons, but have to take on their spoons yourself – as you work 2 or 3 jobs to cover the bills, or give up YOUR happiness to do so… as my brother often has to. 


Imagine having had this your whole life, and knowing that this may well take your life, as people with cystic fibrosis and other chronic, right-now-deemed-terminal illnesses do.

It’s scary. I know. 



But as the lady who invented this spoon theory said in her original post… this can also be seen as “a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons”. And if you’re lucky enough to have a friend or family member or patient who does have such an illness… if they’re with you… remember that they “chose to spend this time with YOU.” 

I hope this gives you a glimpse of life as a chronic patient. 

I hope this allows you to forgive “misgrievances” anyone with an illness may have committed – whether it be them having to bail at the last moment on a meeting, skipping or else refusing to take medications because they honestly forgot or are sick of taking them, or them just simply pouring their heart out and letting people know what it feels… I’ve seen so many people cry things like “Bullshit!” and “Pussy!” when people “whine” about things like this.

Remember – these things take a huge emotional toll too (my experiences with it. And how I deal with that).  It’s not easy hearing “you look good”, or “you look better” when you feel like the complete opposite. It’s not easy having to explain everything, often lying about your health just to make others happy too. The frustration of this thing never leaves you too…


And finally, I hope this let’s you understand those people in your lives who do have extra issues always looming over them. And I hope this urges you to go and ask them if they’re OK, and equips you to maybe help them. 


Because who knows. Someone you love, or someone you care or are caring for may need your help.

Blog, Inspiration/Motivation/Help, Medicine and Science

An Open Letter to Doctors from a Scared Patient in Scared Times.The Best Doctors I’ve had. And the Worst.

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Being a patient isn’t easy. Especially when you’re in hospital in an emergency situation, as I was last week… For those who didn’t know – I presented to emergency last week, midway through chemo, with shortness of breath and they ended up finding a new cancer on my fourth rib on the right. Don’t worry though – I’m fine! 


They removed the lesion that was there and the worst case scenario – a relapse of my very aggressive original leukaemia has essentially been ruled out. Whatever the tumour is, that’ll likely be all that’s required in terms of treatment. 


During that tumultuous week, my first where I’d gotten major surgery come to think of it, I probably met as many doctors as I had since being diagnosed 4 years ago. I definitely would have if you took out med students, interns and residents from the equation and just left the specialists. I met 12 anesthetists alone. By the time you’re reading this… I’d probably have met 14.

And over this last pressure-filled week, I’ve had some of the best and worst experiences with my doctors. 

But let’s save the best for last… 

I’d like to say, first off, these doctors I’ve been under – I don’t believe are bad doctors. Skill and knowledge wise, they’re far from deficient. Indeed, one is apparently one of the best in his field; one of three who even performs the surgery I needed last week in my nation. And they’re not horrible people either – I’ve come across worse, more abrasive doctors in my time, heard of many more horrible experiences, and circumstances. Rebukes from doctors and regular people to young cancer patients in particular commonly degrade patients. I probably came across these guys at bad times, in time-constrained circumstances or something of the like. 

But that still doesn’t ease the pain, or worry I felt because of them…



Luckily, I’m a person who can cope with that anxiety well. But not everyone can. So at the very least… for those doctors, future doctors, nurses or other healthcare staff reading on – this can serve as a lesson. 

 

Words that were said to me, just last year. In truth, there were things out there that could, and indeed, have helped. Check out an entire album, asking what the best and worst things patients’ doctors have told them. 


When I was told I had a lesion on my fourth rib – one that may be cancerous, as you can imagine, I wanted to see exactly what it was. Or at least learn more about it. 


I was admitted to hospital on Tuesday morning, and found out about this lesion that afternoon. Immediately on hearing this, and learning that there was a spot in that same area last year – I wanted to see the scans or reports myself. I struggled (I was still cramping and short of breath) and limped my way to the nurses and doctors station and demanded to see my reports or my doctors as soon as possible. 


After a while, the resident on my medical team walked in and told me the bad news. He confirmed that there was some kind of lesion, but when it came time to seeing the report… he couldn’t give it, as “Only a specialist could give such reports to patients, according to New South Wales Policy.” I was pissed. Angry,,, beyond words… They were my scans… my reports… about my body. Why was I not allowed to see them, and someone else was in the first place? Shouldn’t it be the other way around?


But I guess it wasn’t his fault. And I guess I could see a potential reason for such a policy. You wouldn’t want a patient to worry themselves too much, or be disclosed information without knowledgeable guidance…. Fair enough. 


“Could you call or page my specialist so I could see them?” 


No. That was for some reason or the other impossible too… He was probably scared of bothering him for this tiny thing. The systemic bullying, and even sexual harassment that come with the doctor hierarchy may have had something to do with this. If the consultant on call was such a bully, he may have had to cop a huge tongue-lashing from him, at the very least. Perhaps the laws were extremely restrictive. In any case, it wasn’t him I was angry at. I got where he was coming from, and saw that he had no power to change things here. So I tried everything; calling my own specialist on his line (he wasn’t in the office and couldn’t answer), calling my GP (who’s amazing and has helped me often in crisis situations in the past) and even calling and asking other doctors, including specialists at other hospitals, to see if there was something I could do. 


Eventually, I resigned myself to waiting ’til tomorrow, for my consultants’ usual Wednesday “Grand Round”, where he and those under him would review all patients under their care for the report. 


And the next morning, I got an absolute ‘Yes. Of course you can see your reports” from him. 

Great, right?!



That’s when I met annoying doctor number 1. The senior registrar (the level just under consultant) under my consultant was busy. I could understand that. She may have had a few long cases, or emergencies under her belt. 


But for two whole days, two painstaking days of me asking her, the residents under her, my nurses, my doctors and my consultant again on the phone again and again, I didn’t get to see that report. I didn’t know for 2 days how large the lesion was. What caused them to suspect what they suspected it was. How much of my body would be deformed; cut away in this surgery that was being planned!


All I had to work off in this time were off remarks from my haematologist about a “lesion on the anterolateral aspect of the fourth rib” that radiologists suspected was a “chondrosarcoma” that the orthopedists (bone surgeons) recommended required me to go straight to “a rib resection” rather than a biopsy first. Words I could luckily grasp and understand, with my medical knowledge, but ones that would have left most other already anxious, suffering patients even more distressed. 

 

Surgeons huh?

A shocking statement from a chronic illness patient, from a survey we conducted of chronic pain, cancer and chronic illness patients on patient-doctor relationships.  Click here to check out the entire album.

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When we asked her why the reports hadn’t been disclosed thus far, by anyone else, including the anaesthetists, orthopedists or the pain team who’d all been by by that point on her own rounds (which can happen at anytime in the day by the way – they often catch you when you least expect it, one after the other) later that day, she responded, brashly, dismissively even, to my obviously anxious mother, that “It’s because we’re the haem team.” before brushing on to the next question, failing to even acknowledge our plight. 


 After a rushed consultation (we were her last patient of the day, and we’d seen her laughing alongside colleagues later on; so she wasn’t rushed by other patients), a non-commital “Yeah, we’ll get on to it,” and a “hmph” and a small turn, she was out of the room, leaving us even more confused than when she entered.


The next day, early, before 7am (breakfast is served at absurdly early hours at St Vincent’s), we had more of the same. And it was only after cornering my haematology consultant onthe phone that we finally had the original resident, who’d initially been the one to refuse our seeing the reports, come in, show and explain the results of that CT scan to us. A mere hour before 5am Friday, the hour at which hospitals, for all intents and purposes, close. 


Now I understand that doctors are busy. I understand that they don’t always have time, that they may have emergency situations and that they have a LOT of work to do. I understand that some patients are placed on higher priorities than others; indeed, rather than get angry, I’m a patient who’s grateful if he’s seen last, as that means I’m probably most well off, medically.


But though these things may seem like little, pestering requests peppering your busy schedules as doctors, they mean EVERYTHING to a patient going through tough times. Especially those newer to hospital experiences. But as you can probably gather… veterans like me get scared and anxious too. Even a quick explanation as to WHY you couldn’t get to me would have saved me heaps of pain.


The sad thing is, teams often have these informal priority lists assigned to patients to get procedures and scans during in-patient stays done, but the little requests, and sometimes even the less likely, yet all-too-possibly correct tests aren’t done. Because in addition to my not getting these reports, my echocardiogram (an ultrasound of the heart) was put to the back of the list so often, after they ruled out most of my major causes of shortness of breath, that it wasn’t even done until I specifically reminded the team about it. They’d simply forgotten. 
The chances of there being a pericardial effusion causing that (they ultimately ended up pinning that initial shortness of breath that brought me in to my cramping as all the other tests came back negative) initial haggard breathing was unlikely, the chances of it being severe minimal considering my lack of the Beck’s triad of dangerous clinical signs. But it was still something that could have played a part in my initial presentation. Something that could have blown up in my face considering the fact I was getting major surgery in the chest later that week. 


I understand there may not be time to answer everyone’s tiny little questions, or to grant every little request. I understand that there are days where you may be overwhelmed, where the concerns of a pushy family whose child has what’s likely a slightly cold seem irrelevant next to your failure to resuscitate a young man after an accident. I know you’re human, and can’t do everything…


But you don’t need to. Delegating the less necessary concerns, the less-likely-to-be-severe complaints of patients and their requests, to those below you in the medical team, those secretaries or clerks assigned to you, or to a colleague with more time on his hands is one way you can make the lives of both you and your patient better without impacting your own. If it does require a little effort on your behalf, then do document those “less urgent” concerns somewhere – maybe even design a symbol or mark to distinguish them from the rest of your notes – and try to get back to them later when you get a chance because believe me – it’s not just your patients who benefit from this – it’s you too. The small things can make the biggest difference to a patient going through what’s often the worst days of their lives, and if you can resolve those problems for people every ordinary day of your life… then your own life will be the richest of anyone’s in the world. 

Making your job your profession as a doctor is vital not just for job satisfaction, it could have huge mental and physical impacts on YOUR life too.
I’ve dished out a lot of dirt now… and this is just annoying Doctor #1. I could go into Doctor Annoying Number 2 into extravagent detail; and some of the words, some of the things I’ve faced from doctors in the past, I could go on for pages about; but I feel I’ve done enough of that for now.  something else very alarming today…. but I understand how he can be very busy too. 
 
Though I’ve had many bad experiences with doctors at various stages, in various circumstances, in the past, I’ve been blessed to have most of my experiences with doctors positive, even life-changing in nature. 
 
The words that changed my life were uttered from my first haematology doctor’s mouth, the conversations we’ve had over things ranging from life-and-death decisions, the future of medicine and treatments, to exchanges of fishing tales and adventures tantalisingly human in nature. The confidence my transplant specialist had in me to choose the medication that’s kept me alive today and then fight for my right to get it completely subsidized came down to an email exchange between him and I that he was happy to facilitate in his own time. 
 
I’ve been blessed with not only the best parents, siblings, nurses, staff and friends in the word, but also some of the best doctors too. 
 

But by far the most human of these has been my opthalmologist; my eye doctor, and my first doctor, who’ll always have a special place in my heart. 

That ophthalmologist though, she showed just how amazing she was in this last tumultuous week too. 

 
My eyes, as most of you regular readers would know, have gone through a lot in the last half year or so. I’ve lost almost all my vision in my left eye permanently to a “central retinal venous occlusion“, whose cause we still don’t know and then, just over 3 months after that, almost lost my right eye as well to the same reason. 
 

My reflections… my feelings as I went through what I felt may well have been the last time I saw anything.
During this second time in particular, as I was rushed to the hospital, experiencing the same things as I did the first time, seeing the same results from the same tests coming back, I was in one of the most sullen moods of my life. I knew what was coming. And I knew that there wasn’t must we could do to change the results of it. All I could do was sit there and wait for what could have been the last flashes of lights I’d ever see go by in this alien, dreary waiting room. 
 
Yet when I called Claire during that time… she showed nothing but concern and care for my welfare. Me. Just one of who knows how many patients she had she showed love and concern for where she had every right to be peeved, pissed off and even violated for being called up at 5am with information of this going on. 
 
During that crisis itself, and in the weeks following up, she was her usual amazing self. Luckily, the vein blockage that caused my left eye to go blind had cleared for some unknown reason and I hadn’t lost both my eyes. And in the weeks following, she was happy to see me every week during this time, and even offered and decided to see me for free in this period. 
 
Every appointment, as usual, we’d discuss the findings as she saw them, and she did more than explain the goings-ons of my eye to me as the details emerged on the screen, she made sure mum and I both could see the differences; the changes in the scans, actively involving us in the process and making us feel like we had control of the situation. Something many, if not most patients, wish they had in their interactions with doctors. Something that’s indeed, been linked with better outcomes and survival times in diseases ranging from colds to kidney failure to advanced cancers. 
 
We couldn’t thank her enough for what she’d done for us in those last few weeks/months. She’d transformed this tragedy that would have stayed with me for life into one of the most inspirational experiences of my life. And we thanked her in kind by giving her a pair of gold bauble-style ear-rings; a wedding present to her (she’d recently been engaged we found out from another patient of hers), as during her eye examinations, she always had me look at her earrings, and I always made sure to point out the style she’d chosen to wear on the day (she always picked quirky and extravagent ones to “give her patients something to look at). 
 
We gave that to her a month ago, looking forward to my next 6 weekly appointment. 
 
But somehow, during the crisis that was last week, she got wind that I had yet another cancer. And when I saw her face in my window the day I’d gotten my bone scans (indeed, she was the one who deciphered them for me, and let me know that they confirmed it was another cancer I had), I was shocked. I couldn’t believe it at first. But there she was, the earrings we’d gotten her glimmering in the light, smile bright as ever, beaming at me, with flowers in hand. 
 
“How come you’re here? How did you know what was up?”
 
“I’d heard about this happen, and I wasn’t far away. I live right in the middle of Sydney, really, so it wasn’t that hard to pop in.” she exclaimed cheerily, handing me a set of fake flowers and then taking them from my hands, still limp from disbelief and organising them on my noticeboard of cards and encouragement with my similarly awed mother. 
 
I was astounded. I know personally the amount my doctors, my two haematologists leading my treatment, cared for me, as they cared for any of their patients from deep conversations with them about treatment and just life. But even THEY hadn’t gone this far to show their concern. Now that I think of it though… I do remember my first doctor, the one who’d told me those words, “The Good news is you’re 17 and you have leukaemia, but the bad news is… you’re 17… and you have leukaemia,” walking in shyly to see me and wish me well before one of my procedures at a completely different hospital, on his day off, one day. He played it off cool… but he was there to specifically see and talk to me…
 
The generousity of these souls… their sheer care for the people who’d been thrust into their hands damaged and sick and their nurturing huamnity to bring us back to health… was just staggering. 
That sort of care these 2 amazing souls had didn’t just extend to me though. My first Haematologist told me his code one day in a candid moment. He treats “Every single person as if they’re his father, brother, son, or uncle”. And the way he treats them backs this up. He goes to every extent, doesn’t care if he steps on toes or upsets people; he’s renowned for giving tongue-lashings to clerical staff who wouldn’t budge on red tape, and every time you’re in serious trouble, you’re glad to have him there because, if you needed it most, he’d ensure you got that CT scan, MRI or procedure done, no matter what others would say. 
 
People call him eccentric, difficult to work with, rude even. But my Dad saw him immediately for what he really is. “The other day, before your first chemo, I came across him in the hallway and asked ‘Doing anything this weekend, doctor?’ attempting to make small talk. He just stared off into the distance and walked off the other way. And I wasn’t offended at all.” 
“Why,” I asked. I’d only just met him for the first time the other week. To me, in the days after being told the bad news so ‘brashly,’ he was an eccentric, off-putting doctor who had, in my own words, “No people skills.”
“Because I know that the reason he did that was because he was busy thinking about a problem he had with another patient. And that patient in his mind may have well been you. With that in mind… Who do you want treating you?” 
Claire, my opthalmologist, displays the same level of compassion and care for ALL of her patients too, I know, through this enlightening chat we had with another of her patients at during last visit. She was carrying a bunch of flowers, the same variety, I’m realising now, as the one’s hanging on my noticeboard in this room, and my father made a remark on the arrangement. 
 
“Yes, they are pretty aren’t they?” the old lady smiled. “Claire got them for me, bless her. My son had died this month 20 years ago, and I mentioned that I was planning on visiting his grave to her during my last check-up last year. The dear soul remembered… Bless her.” she sighed, wiping off a tear…
 
It’s no wonder she always talks about being blessed and having the most adorable patients ever, “a veritable gang of second grandmas” as she puts it… 
 
The humanity of that action… the sheer compassion and thought it showed… goddamnit… 
 
THAT’S the kind of doctor I wanna be. 
Hell… that’s the kind of PERSON I want to be!
 
Random acts of kindness have the power to change lives. I’ve said it many times before… but these guys transcend that and make every action as good as possible. It’s bloody amazing, and I’m honoured to be affiliated with souls like this, and one day, aspire to be someone just like this.
 
 
I know it’s hard to display this level of care and compassion everyday, for everyone during every circumstance too. But I know one thing as well… it’s bloody worth it. And I’ll definitely try to be as good a person, as well as a doctor, as I can be for everyone… forever. 
 
But for you doctors, medical professionals; just ANYONE reading this, you don’t have to feel the pain, or the worry of getting a cancer to understand this. You don’t have to experience it first hand, as many doctors, such as these, end up doing before they themselves decide to write an inspiring article and change the way they practice. Hopefully reading this will make sure you try and do these little gestures of kindness without having to go through something yourself to get there. You don’t have to examine or read through textbooks and journal articles to find out how you should deal with your patients. All you’ve gotta do is Just Be Human.
Just be nice… wherever you can.
This profession can be tough. It can drain you. Make you feel like you’re not making a difference after years of seeing the same patients with these same issues come to you over and over again. But take it from someone who knows, from someone who’s been there. You will ALWAYS be able to make a difference in others’ lives. No matter what the circumstances. 
It wasn’t the medical decisions that made my doctors special… no, what made my doctors special to me – were those tiny little things they did, which combined have changed… even saved my life.
At one point, at my lowest, it was only knowing that there was a doctor out there who cared for me that stopped me from doing something I couldn’t take back.
You could know everything there is to know about medicine and biology. You could be the GOD of medicine, but you still wouldn’t have been able to save me that day. Only that man could. And I think this goes to show that making someone feel cared for is the most powerful weapon you have on your side.
And if you can spread that humanity in a place, at a time at someone’s life where there doesn’t seem to be much going around – you WILL Change Lives. You WILL make a difference. And if you’re ever struggling to find meaning in your life – be you a doctor or not – these acts will change YOUR life too.
I hope this helps you see that.
 
 
 
Blog, Inspiration/Motivation/Help

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!
 


 

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 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: [email protected]
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
 


 
 
Blog, Health Challenges and their Fixes

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

Last post:                                     My Story:                                         Next One

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/[email protected]/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/
Blog, Humour In Hospital

You won’t believe what my friends got me before chemo… Boys will be Boys. Humour in Hospital #7

 Last post:                                     My Story:                                         Next One

Chemo was about to start. 

 
At this stage I was ready. I’d taken a step back from the depression and shock of diagnosis. I’d questioned all my doubts and fears and was now focusing on being as healthy and as happy as possible. The only things I could control.
 

I’d locked myself up in my room, told my friends and family to meet me after the first round was done. Chemo brings your immunity down to virtually zero. I couldn’t afford to even risk getting the sniffles at that point.My mind was ready for the ordeal. My attitude perfectly tuned towards getting through this thing, as those who’ve heard or read my story would know.

 
But I still feeling alone… I still missed my friends. 
 
It was my last year of high school…
Even if I did get through this, who knows if I’d ever get to see them again? 
 
And then one magical evening, on the night of the State of Origin (the Superbowl of Australia for those non-Aussie readers), just before the chemo was about to take effect, my school mates payed me a surprise visit. 
 
It was the best surprise ever. 
 
For someone who’s likely only gonna see the faces of doctors, nurses and family for the next 6 months to a year… this was the best gift possible. 
 
For you guys reading this… I hope this highlights the power of just saying “Hi”. To someone who’s doing it tough, to the odd kid sitting alone at lunch, or to your parents who you haven’t called in a few months. Pick up that phone, or open up that tab and message them now.
 
Because seeing my friends there, getting to act as if nothing was happening… even for a few moments… that made me believe that I would get through this and see them again. 
And that’s the best gift I’ve EVER been given. 
 
But they also brought along another gift…
 
Before the gang left the room after chilling for an hour, Isnad, a good friend, a good man; the boy on the right, turned to me and whispered,

“Check out what’s in the bag.” 
 
I opened it up. 
 
Lo and behold…
 

A Playboy Magazine.Classic Isnad.

 
We burst into laughter. Typical High school boys. 
 
But then I realised, “Shit! What if mum sees this??”
 
And then Dad came to the ‘rescue’.
 
“Here, son. I’ll hide it for you.”
 
Needless to say… I never saw that magazine again…
Blog, Inspiration/Motivation/Help

The 200km Ride To Conquer Cancer… Conquered. It was the Best Weekend of my life!

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As many of you know, I’ve been preparing for this bike ride. And I’m glad to announce… formally, well, on this blog, that only 2 months after I was done with chemo, I managed to complete the Sydney 200km Ride to Conquer Cancer!


I was scared about it for months… But when I arrived at the start-line… just seeing so many people there who wanna beat this thing, hearing them encourage each-other on, and just immersing myself in the positive atmosphere took away all that fear.


I was pumped. And the ride’s excellent logistics, the crowds cheering us on throughout the ride, the other riders urging eachother up the hill and the people who approached me, telling me my speech brought TEARS to their eyes; that they were riding for ME… that kept me going.


And I made it =]


It was honestly, the best weekend of my life. Being cheered on every few kilometers on the track… inspiring and being inspired by so many other riders all there for the same thing… getting to hear from and talk to and help others who have family, friends, or have suffered themselves from this horrible disease… What more could I want from a weekend. 


Everyone felt the same way. Whether it be on the ride, where everyone somehow had a smile on their face, despite the pain their legs and behinds were going through… Or at camp, where we’d rest and cheer the other riders as they shared they stories… Or at the finish line, where everyone, not matter how much suffering they were going through, would stand up and cheer the last rider on.


Everyone felt the same joy, the same feeling of accomplishment. 


And it was because of riders like us that the Chris O’ Brien Lifehouse received $3.6million from the collected fundraising of 905 riders. 
And I remembered how every time I’d hear about a fundraising event, or a new breakthrough coming through to fix cancer while in treatment… I’d get a smile on my face. Not only did we raise a huge amount that may just change the outcomes of millions of patients in the future, the fact that we were all there to show our support put a smile on EVERY cancer patient’s face.


And That’s AMAZING. 

This was my speech to start the event: 
 

My training schedule and the ride itself:
It wasn’t as hard as you’d think!

The ride was daunting. The number, 200 (120miles) – terrifying to me before it. But with a few months of gradual build up – the day actually wasn’t too bad. 
 
I mean the nutrition we were supplied with, and that I brought on the day itself (and my preparation), made the first 80kms of each day not too hard to keep pumping. Except for the hills… where everyone’s encouragment and the crowds along the ride kept you going!
 
We did 100kms on the first day, camped out overnight, and did 112kms on the second. Everything was provided for – no worries there! And it cost only $50 to register. Honestly – just to have that experience itself would have set us back a few hundred bucks. It was very well run!
 
What I ate the day before: I followed the pro’s, and general marathon advice. I had wholemeal pasta, with lean meats and a regular-spicy sauce (to taste) of course =P 
During the ride, the regular pitt-stops, every 20 – 30kms at the start, and every 10kms towards the ends of both days, had Shotz tablets; the brand of electrolyte the pros on the Tour De France drink (at $4 a pop, with multiple bottles drank on each day – that itself helped us keep going). We had protein bars there too, as well as lunch on both days – a good, carb-rich, lean meat packed wrap or sandwich (with vegetarian options also catered for of course). 
At camp, we had pasta with some very nice sauces too. And we had massages provided, as well as family and some amazing speeches to sooth our sore muscles too. It was great, and by the next morning, I was repumped to ride again! 
 
The training up to this ride was also great – because I built up slowly. As I said in my video – I could only hit 5minutes on the EXERCISE bike when I started, I was that tired from all the chemo. But over the period of 4 months, I managed to get up to doing 50kms comfortably. And when I went out and rode – the adrenalin, the amazing atmosphere and the expert, well rationed nutrition – that took over. And I did it. As did many others who were nervous about it too – including a 70 year old lady I was talking to who had a partner, the same age, who had passed even dad and I! 
 
And training for next year will be even better! Because I’ve managed to recruit mates to do it with me! And I invite you to join me – feel free to reach out and train with me – or get your own group of friends, colleagues or family and get out there and help conquer cancer too! 

Sign up for the ride, wherever you’re from, today. If there isn’t one in your country/state – don’t worry. Because this thing is spreading faster than cancer ever could! So keep your eyes open! 
Australia: http://www.conquercancer.org.au/index.html
Canada: http://www.conquercancer.ca/index.html
The US: http://www.cyclingacrossamerica.com/event/the-ride-to-conquer-cancer/
Auckland: http://www.conquercancer.org.nz/

The facebook page for the blog: www.facebook.com/musingsofamedstudentpatient

My other recent talks:

The Leukaemia Foundation Light The Night Talk I gave:

My speech about My Story, and How what I learnt can help YOU guys achieve what you wanna achieve!

Blog, Medicine and Science

7 Great UCAT Tips You Probably Haven’t Heard Before

This was pretty much a copy-pasted conversation I had with a friend asking for UCAT tips, so sorry if it’s not that well worded. In the time I did it – the UCAT was called the UCAT! But the principles, time sensitive nature of the test, and test taking skills are essentially the same. I figured I’d put up one of these so I wouldn’t have to do them individually any more and to help you guys out =P


For those who don’t know, the UMAT – now known as UCAT – is a challenging pre-medical test every prospective doctor needs to sit in Australia and New Zealand. In most universities, it is a major consideration for gaining an interview and a seat in medicine. Unlike other requirements, such as good performance in final-year-school or university exams, it’s not necessarily based so much on knowledge as it is on non verbal and verbal problem solving skills and empathy. This is the official site which outlines the exam and basic preparation for them: https://www.ucat.edu.au/ucat-anz/practice-tests/-strategy . 
 
Basically – there are 3 styles of questions. Previously – they were divided into ‘sections.’ You could only do section 1 type questions in the first 60 or so minutes. AFter that time was up, only then could you go onto Section 2 – with everyone else starting that section at the same time.
Now, all these questions are jumbled up.
“Section 1” questions give a passage of writing on a random topic or a logical assumption and then ask you to make logical assertions of it. It could be on anything – and though some of it is medical, most of the time it’s not. Indeed, in some years, they didn’t have ANY medical sections – so don’t feel you have to study biology at all.
Section 2″ questions give passages about a few characters and ask you to make judgements on people’s  character, emotions and responses.
And “Section 3” questions test your non-verbal reasoning and give you patterns and ask you to pick the option most likely to be next in the pattern, which one should be in the middle or which one is missing. Think puzzles. The hardest thing about the exam though is arguably the time factor. It’s a 3 hour test but filled with long passages and challenging questions.
 
This post will not be focused on the best tips to tackle individual questions; there are many programs and blogs designed to help you on that topic, but rather on general tips, exam taking strategy and techniques that will help you in the exam. So here you go. The 7 best tips I give to people who do this test. 
In long passages, which come up heaps in section 1 and 2:
 

1) Read the Questions, before ANYTHING, and PLAN accordingly.

1) – Have a look at the questions before you read the passage so you understand what you need for and then underline bits that will be, or seem important as you go along (so you can refer back to them later on). This is one of the best tips I can give, because it saves you so much time when compared to you effectively having to re-read the whole passage as you look for one or two key points.  People say that you should skim read and stuff like that – me – I make sure I understand EVERYTHING that needs to be understood before moving on.
Instead of skimming through and having to reread a passage, 2 or 3 times, it makes more sense to just do it once and do it well. 
By reading the questions first – you know what you can skim, and what you need to focus on to understand this.
 

2) You can’t be perfect. Time is a huge factor! So don’t be worried to skip it!

Don’t be afraid to skip or make educated guesses on questions. The UMAT is time intensive – so once you get a good guess or narrow it down to 1 that seems likely, don’t spend too long worrying about if it’s wrong or right – just move on.
 

3) Practice previous papers for Section 3 puzzles, and get a grasp of how to answer the main puzzle types!

With section 3 style questions – there’re different questions with patterns. Narrow it down systematically, as you can for most of them, then it becomes easy. For eg – “pick the middle” or “pick
the ‘x’th”  ones where they give you 5 options, 3 will have a similar pattern, meaning 1 of those is the end, 1 is the beginning and 1 must be the middle. Narrow it down from there, pick the
most likely of them after that and move on. You can check if they’re right if you have time at the end of the exam.
 

4) Get some vocabulary down pat for section 2 – and understand them!

For section 2 type questions – know the key vocab vocab. That was my worst, not because I couldn’t empathise with the characters’ feelings and situations, but because for some of them, I just didn’t know what a word like “indignant” or “beatific” really meant haha. So get delectable, despondent, those kinds of words through your head and make sure you understand some of the common words that come up.
 

5) For the empathy questions – think about WHY they’re asking you these questions.

Think like a doctor would think. Think about WHY they have section 2 style questions. They set questions that try and judge how you respond to the world, and they want doctors who are empathetic, who understand, who aren’t judgmental. Good people see good in others.
So if there’s 2 options which seem similar but one is a more severe, or more evil reaction to a situation, pick the one which makes the persons actions seem somewhat reasonable. So don’t pick “jealous” or “angry” or “contempt” pick “reluctant gratitude”, “despondent” or “disappointed.” unless it really seems like it is just that for the character or subject they’re talking about. For eg if the
question was”how did I feel after the fish came off the line” you wouldn’t say “Pissed the f*#* off” or “angry” you’d say something less severe like “disappointed”. A bit of an extreme example and one that may seem ludicrous (’cause if you know me, you know I get really, REALLY MAD when I miss a fish), but the message is the same.
 
Those are the major “test taking skills” I used when I sat them. Remember, the tests aren’t the same as when I did them – the “section” style questions are mixed around, but that’s okay – it
means you won’t be as pressured for time and that if you’re good at one section compared to another, you’ll get more time to focus on your weaker styles of questions or more time to go back and
check!
 

6) Even better than ‘studying’ or doing ‘drills,’ is just to READ

But the best thing I did – I didn’t really do that much practice or that many practice papers – was I read in my spare time. A LOT. And I read widely too. And that made my reading speed, empathy and basic comprehension pretty damn good – perfect for a test like this. Section 1 type questions ask for you to interpret anything from some kind of scientific scrap of knowledge (it usually has nothing to do with medicine), to instructions on how to play table tennis. By reading articles from newspapers, as well as science journals, and indeed – other posts on my blog –  you’ll gain speed in comprehension. And learn more. By reading novels, or even better – short stories – you grasp what kind of things section 2 style questions ask. 
I’d always be reading a good novel before I slept – it was a habit, I needed to before I slept. On top of that, I read things like TIME magazine, science/technical journals. it’s even easier to do it nowadays, and it’s not a chore at all – a lot of the things you can read are really interesting.
Rig the algorithm, and fill your news feeds with stuff that makes you learn passively. The I Fucking LoveScience Facebook/ Web page is a good place to start – it has a great science blog where it
talks about recent advancements, which are all interesting and fun to read. All of this makes comprehension/ reading speed go up, and also gives random pieces of knowledge to you, which who knows, may just get you more marks. That’s exactly what you want in this kind of test!
 
I guess those are some of my best tips for the actual UMAT – that’s what I did and ended up doing pretty well, even though I really didn’t prepare for it too well (I was in the 98th percentile, with an overall score of around 200, though I can’t remember exactly). 
 

7) It’s not the be all and end all. Remember that.

But the best tip I can give is a simple one. Don’t stress or panic. I talk about it in detail in this blog post I wrote not too long ago. I talked about stress and how it makes you perform worse… not just for tests like this, but for life in general – and – more importantly – I talked about how to deal with it. Stress, worry and panic won’t help you on the day.
If you go in thinking “OMG this is life or death!”, “what if I forget stuff?” or “I’m not gonna do well!” you doom yourself to panicking, having mini-breakdowns in the test, a confused overworked mind and just feeling bad about yourself, which all lead to you being more likely to fail. If you instead go in on the day thinking “well, I’ve done what I can, all I gotta do is give that damn test” you’ll do yourself a great service. If it’s hard to see that in the day, the best advice I can give is to take a step back and look at the second, more constructive attitude you can take going into the exam.
 
Instead of thinking about what there is to lose, think about what you have to GAIN. 
The chance to make your career one where you spend every day of your life helping others, while doing well for yourself too. THAT’S how you’ll give yourself the best chance of making it.
 

 

GOOD LUCK! Feel free to ask for more tips, advice, or your own tips. And feel free to splurge or vent and I’ll try and help you feel better about yourself!
Sign up to my newsletter, and I’ll keep you up to date, and probably send a few sciencey articles that’ll help with your UCAT on the way 😉
But no seriously – if you ever wanna talk – email me at info.at.nikhilautar.com
Blog, Health Challenges and their Fixes

Giving to Charity is a Win-Win. Businesses, Governments, and People like us Can’t Affort NOT to Give to the Poor.

Last post:                                     My Story:                                         Next One

Effective altruism is a movement that’s revolutionising the
way we give to the poor. Peter Singer described it as “one that combines
both the heart and the head.” The heart empathising with and wanting help
the less well off; the head ensuring our efforts to do so went the furthest. That’s
where the concept of effectiveness comes in. A hundred dollars given to a Guide
Dogs foundation will pay for less than 2 days of training (Guide Dogs Foundation, Australia, 2014); that same hundred dollars
could provide a reliable source of clean water to 300 people in Sierra Leone (World Vision, 2014). That’s not to say guide
dogs aren’t a worthy cause; but individuals, charities, businesses and
governments have begun to realise that the world’s most deprived regions are
where we can cause the greatest change, and that by directing a majority of our
funds there, we’ll create the greatest change.
 
Peter Singer’s Amazing Ted Talk on the topic of Effective Altruism
But though our heads are starting to temper the way these
funds are directed, it’s the heart that we target to gain those funds in the
first place. And it’s the second concept of the movement, altruism, that describes most of our efforts to help thus far.  At
its core, altruism encapsulates the very essence of humanity; our ability to
care for wellbeing of others and the act of putting their interests above our
own is an anomaly of survival of the fittest arguably unique to our species.
But the very words ‘charity’ and ‘aid‘ exude connotations of personal sacrifice,
and the fact that only 5 of 22 OECD countries give the agreed upon 0.7% of GNI
towards Official Developmental Assitance (OECD,
2012), and a 40% drop occurred in private flows to charities from 2007-2008
due to the GFC (World Bank 2009)
shows that that sacrifice, especially in the face of adversity, is often deemed
too much; the reward of a warm, fuzzy feeling too little to justify the
expense.  
But what if the rationality of the
mind, which so often gives us excuses not to give, could be used to justify giving
more? What if we viewing charity beyond the strict confines of altruism; what
is we saw charity as a win-win? 
Well, in many cases, charity is already just that. Though it
seems counterintuitive at first, there are already many ways governments,
corporations and individuals benefit themselves fiscally, as well as morally,
by helping those less fortunate than themselves. 
The rise of the concept of Corporate Social Responsibility
in the 1950s signalled a change in the ideals of businesses as they recognised
their success was intimately entwined with a satisfied, thriving population.  Since then, the benefits of engaging in
charitable behaviour on increased productivity and moral capital have become
well documented. Businesses, large and small, that allowed employees days off to
volunteer for instance, saw dramatic increases in workforce morale and
productivity (Smith 1994; Points of Light
Foundation, 2005) and thus concepts such as “volunteering days” or “community leaves” were born. Similarly, larger corporations; particularly those in
disputatious industries, that engaged in strategic corporate philanthropy generated moral capital that mitigated the severity of sanctions and
unfavourable press against the firm when bad acts occurred (Fombrum 1996; Jackson 2007; Godfrey, 2005). This benefit of giving is great, but CSR has to grow beyond just a way of patching up the mistakes companies have made, and with the growing disgruntlement of the wider public to corporate irresponsibility leading to wide backlashes, indeed, they can’t afford not to engage in more generous acts.
But this isn’t a knife to the throat of businesses. Because the benefits
of engaging in corporate philanthropy are wide-ranging and already evident. And they go beyond those of improved
productivity and public relations… 


Brand image is of vital importance to a
company’s success, and acts of charity have excelled beyond that of maintain ethical practices and adherence to codes and guidelines; they’ve become a marketing tool. A wide-ranging survey found that 89% of consumers are likely to switch brands similar in price or
quality for such a cause (Cone
Communications 2014). And strategic charitable initiatives taken by
companies, those initiatives in line with their core values, benefit not only the recipients, but
also the companies who organise them. Monsanto partners with many governments
in the third world to reduce world hunger through programs such as Project
Share, which provides farmers in India with education, tools, and their
superior genetically modified seed (Monsanto,
2014). This allows farmers to make the vital jump from sustenance to
commercial farming, gaining them not only free publicity through press
coverage; restoring Monsanto’s widely denigrated image of a greedy, “GMO producing (and therefore evil)” corporation,
but also creating farmers who will go on to become future customers themselves. This is but one example
showing how acts of kindness by businesses often turn out to be wise investments.
 

Over the years, consumers have become more and more willing to switch brands for companies that give more.

 

Cause related marketing, and the charity-business partnerships
that are born of it, have proven to increase the effectiveness and impact of
money given by corporations by reducing the reduce the costs of setting up while
also significantly improving brand image, as it associates the brand’s values
with the charity’s own (Porter and Kramer
2002). The Red Revolution, where  companies
such as Nikon and Starbux donate 10-50% of profits of product-lines with red labels to the Global AIDS Fund, allow consumers to make an impact
in their day-to-day lives while helping the company sell more product. This movement
is extremely effective, as it reduces the cost required to set up individual programs,
and the benefit to a brand that participates in this program is two-fold. Not
only are they improving brand image, they’re also getting a more
distinguishable, preferred product on the shelf. Positive brand image not only
to increased sales in the short term, but also garners businesses highly desired brand
loyalty. Potential customers are more likely to buy products from companies
that care, not just once, but over and over again (van de Brink et al, 2006; Hsieh A, Li C, 2007). The concept of microfinance,
which achieves staggeringly low default rates of less than 1% consistently (Grameen Bank, 2013; Field and Pande, 2008); a lower risk than a mortgage in the developed world, is further proof that the
gratitude of charity pays off directly. Those who benefit directly from
the company’s aid programs, as well as those in wider society who appreciate
their values, are more likely to be loyal customers of that brand.  

The power of the gratitude of those alleviated from poverty
seen in the microfinance industry brings to the fore another, less widely
acknowledged idea. That the alleviation of the burdens of poverty results in
increased consumerism and the development and the growth of emerging markets in addition to better
quality of life. And transnational corporations, particularly those from services
and technology industries, are already benefiting from this growth. The surge
of the middle class in China and India is living proof of this concept. Sony
forecasted a tripling of phone sales in China alone over 1 year [11], and Cisco System’s is
already providing nearly 40million homes in India with our equivalent of cable [12]], and as of 2009, GM sold
more cars in China than it did in the US (Ernst
and Young 2014), highlighting the gains that can be made by pushing more of
the world’s poorest into the middle classes.
The benefits to the poor countries are clear and staggering to say the
least; every  10% increase in the number
of people earning between $10-100 a day corresponds to a 0.5% rise in growth (Bhalla 2007), and the number of people
in that bracket is set to double to 3billion by 2030 (Ernst and Young 2014). Imagine how much companies and the world’s
poorest stand to gain by accelerating this growth further, and by establishing themselves and their brands early in the developing world through charity. Though the benefits to both  are clear, it can
be argued that the profits from human development take time and great
investment to be realised. But even now, the world’s poorest are holding
markets that corporations and businesses are targeting. Microsoft researchers published
a paper on how to increase the efficacy of mobile phone sales in Mumbai’s slums (Rangaswamy & Nair, 2010), showing even
the world’s least-well-off are beginning to access technology. Taking away their
biggest obstacles; basic sanitation, employment, housing and attainment of
education, is not only the cheapest, most effective way to help them; it’s also helping us too.

(cone communications 2014)

 

 
Governments are in a unique position of having both the political
and financial power that charities and businesses lack, which is why they’re
responsible for 80-85% of developmental aid that breaks down these barriers (OECD, 2014). Developed nations’
governments and their people tend to own and dominate the technology, research
and services sectors which stand to gain the most from the development of the
world’s poorest. Thus, despite popular opinion otherwise, it is indeed in their
best interests to foster this development. The bypassing of pharmaceutical patents
by many developing countries which represents a loss of nearly 3 billion
potential customers is
a perfect example of the hazards of the festering global inequality. Yet the
aid budgets of many countries in the Development Assistance Committee have
decreased, as lower than expected economic growth during periods of austerity
calling for the reduction of “unnecessary spending” (OECD, 2012). 
It could be argued though that the growth of markets are
long term, non specific benefits of aid, and that governments who give too much
at their citizens’ expense are irresponsible. But official developmental
assistance (ODA) already shows palpable benefits to nations in the short term. Multilateral
aid in particular cuts down the likelihood of international conflicts and
provides a very effective, collaborative way of dealing with crisis situations.
But bilateral aid, which comprises the 70% of ODA (OECD 2014), often directly benefits the giving nation through the
concept of aid-in-kind.  Tied-aid programs,
which attach assistance to the fulfilment of certain trade or policy
concessions, are often criticised for being less effective, predatory as
they’re designed to mainly generate income for the donating nation, or for addressing
human rights violations while ignoring the larger issue of global poverty (GAO 2009; Younas, 2008; Pfutze T, 2008;
Younas, 2008). But this trend is changing, with developed countries  increasingly utilising the cheap labour and locally-sourced,
cheaper goods of developing nations while providing what them with what they don’t
have; technology and expertise. Australia’s contribution to the Small Hydro
power Scheme in Remote Fijian villages is a perfect example of this. Villagers were
allowed access to electricity for the first time, gaining them the ability to
store food and for children to study at night, while hydro-electric companies
and engineers from Australia gained contracts, stimulating economic activity in
Australia’s while also gaining the nation valuable expertise (Liu et al, 2013). And indeed, the very
engineers who participated in that program went on to help design the Snowy Mountain
Hydroelectric Scheme, which provides Australia’s largest state with 10% of its
electricity usage and invaluable irrigation to this day. 

But if charity is already such a no-brainer; why isn’t more
of it happening? 
How do we make the benefits clearer, in order to get it happening more?

The lack of evidence for the benefits of giving is part of the
answer.  Though there are numerous
studies linking Corporate Social Responsibility to improved financial performance
(Margolis and Waslh 2001; Griffin and
Mahon, 1997) , little evidence exists quantifying those benefits (Vaidyanthan, 2008). Some suggest the
lack of consistent theory behind the benefits of giving  are to blame (Margolis and Walsh 2003; Smith 1994), others  that the methodology and sample sizes aren’t
consistent or reliable enough (Griffin and
Mahon 1997; Porter and Kramer, 2006). But whatever the reason, it’s impossible
to justify  charity as an investment to
shareholders and voters when you can’t put a dollar figure to it. Securing this
data will cause change, but it’s only part of the answer. The development and
emergence of markets due to human development, the concept of customer and
recipient loyalty leading to profits, the improvement of brand image and international
relationships can’t, or aren’t even being measured as benefits of giving to
this day. Thus, a paradigm shift, along with increased investment, into how we
view and study aid is required to get reliable data on the benefits of giving.
This data will make giving something businesses and governments can’t afford
NOT to do. 
Perhaps people simply aren’t aware that giving can be mutually
beneficial. The semantics of giving and the sacrifice it’s associated with are
in part to blame for this, but lack of awareness of both the efforts companies already go
to for others, and the society-wide benefits of giving are part of it too. The
Red Revolution discussed previously is backed by large corporations such as Coca-Cola,
Starbucks and Apple; yet most reading this wouldn’t have even know it existed. I
know I hadn’t before I wrote this. If companies were to actively advertise
their efforts to help others more, not only would they benefit themselves through
increased sales and business (and put the onus on others to match them, thus
causing a chain effect that will increase the private sector’s contribution to charitable
causes), they’d also achieve another goal. Making the public aware that giving
can be a win-win. Charities are beginning to realise this too and are opening the eyes of the public to the idea that charity
needn’t be something that comes at their expense through giving people more interactive, more fun
ways of giving. The  UNICEF-Tap-App,
in partnership with Georgio Armani, is a perfect example of this. The app is helping thousands kick their smart-phone
addictions for the wonders of real life by giving them compelling motivation to
do so; the donation of a day’s worth of water for every 10 minutes users spent
off their phone. Smaller organisations, such as the Louis26 Foundation,
dedicated to helping cancer patients and their families through tough times,
organise parties, get-togethers and sporting events, with all proceeds going to charity, allowing people to enjoy
some respite from their daily lives without the guilt of self-indulgence (Louis Segregato 26 Foundation, 2014).  MaterHomes runs lotteries with statistically
higher chances of winning per dollar spent; satisfying both the innate fascination
and desire of a decadent, luxurious life and the more accomplishable,
gratifying goal of helping others simultaneously. And microfinance
organisations, such as Kiva, are increasingly allowing users the option to
withdraw money if they wish to attracting not only altruistic donors, but also
those looking for a reliable way to save. 

(Click on any of the above to do these – I’ve personally participated in all of them – and they get the satisfaction of helping others without ever having to go out of my way or hurt myself financially for doing so.)

It could be argued that this mentality of benefiting yourself
while helping others  corrupts the very
ideals of giving. That it would create a business minded approach to charity
that would compromise that which we already gave to the more needy. But that allegation
assumes that people currently give only to gratify themselves, or because society
deems that they should. The heart is the core of altruism. And our compassion,
and willingness to help others will not diminish as long as inequality exists
in this world. The power of humanity will not be smothered by perceiving
charity as a win-win; it will be unleashed, as it unfetters the concept from the
chains of sacrifice that binds it. If people were to realise that charity is a win-win,
then people and the governments and businesses which exist to serve them would
be more able and willing to help others. Something that all humans are programmed to do,
deep inside. If businesses and governments, who control and regulate the entire world’s resources finally came to the realisation that the developing world has the most people, and stands to be the largest markets in the future; if they finally saw that they’d secure their prosperity by investing in, rather than holding back their potential, then charity wouldn’t just be a great investment, but one they can’t afford NOT to do.If we could expand the scope of global development from the spare change in ones’ pocket to the entire bank’s own interests, if we could bring the $100trillion world economy to realise that growth need not come from the subjugation of others but rather the advancement of us all… we will finally cure poverty. 



This was a longer version of an essay competition entry I wrote for Bill Gates. Have a read of it and tell me what you think! Also let me know any other ways you can benefit yourself by giving to charity (I’ll be expanding on this and adding chunks to it over time, and showing more ways of how you can benefit by giving to others – and I’ll give you a mention for any idea I add in there!) Also – let me know what you think! 


 
 
 
References:
[1] Singer P, (2013, May) The Why and How of Effective Altruism, Retrieved from: https://www.ted.com/talks/peter_singer_the_why_and_how_of_effective_altruism
[2] https://www.guidedogs.org.au/frequently-asked-questions
[3] http://donate.worldvision.org/OA_HTML/xxwv2ibeCCtpItmDspRte.jsp?section=10373&item=158

[4] World Bank
(2004), World Development Report 2005: A Better
Investment Climate for Everyone, World Bank, Oxford
University Press

[5] World Bank
(2009), Global Development Finance 2009: Charting a Global Recovery, Global Development
Prospects 2009

[6] Smith, C. 1994. “The New Corporate
Philanthropy.” Harvard Business Review

[7] Points of Light Foundation and the Center for
Corporate Citizenship at Boston College. 2005.
“Measuring Employee Volunteer Programs:
The Human Resources Model. “

[8] P. Godfrey, “The Relationship between Corporate
Philanthropy and Shareholder Wealth: A Risk Management Perspective.” Academy of Management
Review 30(4):777-798.

[9] C. Fombrun. Reputation:
Realizing Value from the Corporate Image. Harvard Business School Press 1996

[10]K.
 Jackson, “Building Reputational Capital: Strategies
for Integrity and Fair Play that Improve the Bottom Line. New York: Oxford University Press, 2004

[11] Cone Communications 2014, Cause Evolution Study; Cone publication, retrievable from: http://www.conecomm.com/stuff/contentmgr/files/0/e3d2eec1e15e858867a5c2b1a22c4cfb/files/2013_cone_comm_social_impact_study.pdf
[12] Hsieh A, Li C, 2007, “The moderating Effect of
Brand Image on Public Relations, Perception and Customer Loyalty”, Marketing Intelligence and Planning, Vol 26
Issue 1, 26-42, 2008
[13] Brink D, Schroder G, Pauwels P 2006, “The Effect of Strategic and Tactical
Cause-Related Marketing on Consumers’ Brand Loyalty” Journal of Consumer Marketing Issue 23/1
(2006), 15 – 25

[12] Porter, M. and Kramer, M. 2002. “The Competitive Advantage of Corporate Philanthropy.” Harvard Business
Review 80(12):57-68.

[13] Field E. Pande R 2008, “Repayment Frequency and Default in Micro-Finance: Evidence
from India”, Journal of the European Economic Association 6,
501.509

[14] Osnos P 1998, “The Economist
Microlending From tiny acorns”, Grameen Bank 2013, Retrieved from: http://www.grameen-info.org/index.php?option=com_content&task=view&id=215&Itemid=541&limit=1&limitstart=9

[13] 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

[14] NDTV Profit 2013, Sony
aims to triple mobile phone sales in India by March 2014, NDTV March 2013, Retrieved from:

http://profit.ndtv.com/news/corporates/article-sony-aims-to-triple-mobile-phone-sales-in-india-by-march-2014-319067

[15] Pakistan Tehreek-e-Insaf 2014, Cisco’s
solutions now reach over 40 million homes in India, Economic Times May 2014, Retrieved
from:
http://economictimes.indiatimes.com/articleshow/35722108.cms?utm_source=contentofinterest&utm_medium=text&utm_campaign=cppst
[16] Bhalla S 2007, ‘ Second Among Equals: The Middle Class Kingdoms of India and China” Comparative Economic Studies 09/2011; 53(3):355-381.
[16] N Rangaswamy, S Nair, “The
Mobile Phone Store Ecology in a Mumbai Slum Community: Hybrid Networks for
Enterprise” Information
Technologies and Development Journal, Vol 6, Issue 3 –
Fall 2010, 51-65

[17] OECD (2014), “Development aid: Net official development
assistance (ODA)“, Development: Key Tables from
OECD, OECD 2014, No. 1.

[18] OECD
press release, Development: Aid to
developing countries falls because of global recession, OECD 2011,
retrieved from
http://www.oecd.org/newsroom/developmentaidtodevelopingcountriesfallsbecauseofglobalrecession.htm 



 

[19] United States, Government
Accountability Office, “INTERNATIONAL
FOOD ASSISTANCE; Local and Regional Procurement Can Enhance the Efficiency of
U.S. Food Aid, but Challenges May Constrain Its Implementation,“ GAO-09-570 International Food Assistance, May 2009  

[20]Younas, J (2008) “Motivation for Bilateral Aid Allocation:
Altruism or Trade Benefits” European Journal of
Political Economy, Vol 24, Issue 3 – September, 2008, 661 – 674   

[21]  Easterly W, Pfutze T, (2008) “Where
does the money go? Best and Worst Practices in Foreign Aid” Brookings
Global Economy and Development, June 2008

[22] Liu, H., Masera, D. and
Esser, L., eds. (2013). World Small Hydropower Development Report 2013. United
Nations Industrial Development Organization; International Center on Small
Hydro Power

[23] B Vaidyanathan (2008),
“Corporate Giving; A Literature
Review,” Center for the Study of Religion And Society,
University of Notre Dam, October
2008

[24] Margolis, J and J. Walsh,
(2001) “People and profits? The
search for a link between a company’s social and financial performance.”
Mahwah, NJ: Erlbaum.

[25] Griffin, J. J. and J. F. Mahon, (1997) “The
Corporate Social Performance and Corporate Financial Performance Debate:
Twenty-five Years of Incomparable Research.” Business and Society 36,
5–31.
 
[26] M. Porter, M. Kramer, (2006) “Strategy and Society; The Link Between
Competative Advantage and Corporate Social Responsibility” Harvard Business Review, December Issue 76
– 94

[27] Margolis, J. and J. Walsh, (2003).
“Misery Loves Companies: Rethinking
Social Initiatives by Business.” Administrative
Sciences Quarterly 48: 268-305.

[28] Louis Segreto 26 Foundation
2014, Retrievable from: https://www.facebook.com/ls26foundation/info

 
 
Blog, Inspiration/Motivation/Help

Stereotyping Cancer Survivors. I’m not brave, strong or blessed for beating cancer. It’s unfair to expect us to act like we’re brave blessed or strong for beating cancer.

Last post:                                     My Story:                                         Next One





Recently on Facebook, a few pages dedicated to cancer awareness asked patients to describe themselves and how they feel in one word. 

Here’s an example. 
 

 

 
I liked how positive people’s responses were. I like how these pages are getting groups of people in tough times together. I loved the word “Surthriver”.
 
But there’s one that stands out to me. The one with no likes. 
 
“.. Invisible.“
 
People always tell me I’m brave for being so happy and positive through my journey. They admire how I’ve adapted, and grown, through my experience, and I give off that impression of a “surthriver” on my posts, I’m sure.
 
But the ugly, not-too-well-known truth about cancer is it’s not something that you have for a while that either kills you or spits you out to keep going. 
 
Cancer affects you long after its left your body… the physical fatigue, maintenance treatments and weariness is just the tip of the iceberg. The emotional drainage of facing your mortality, sometimes multiple times, the frustration of an all-too-slow recovery and the realisation that you may never be your old self again plagues many cancer patients long after their last treatment is over. Not to mention the medical bills…
But surviving cancer is still hailed as a victory. Something to be celebrated.
And cancer survivors, survivors of any tragedy for that matter, are hailed as heroes – symbols of strength – physical embodiments of those words badass, brave and blessed thrown about in that Facebook post above.
 
It’s gotten to a point that survivors are expected to be act that way…. 
Well, that expectation is UNFAIR.
And it’s leading to many survivors hiding their true feelings, not talking about it and not getting help. 
It’s leading to many feeling ashamed or weak when they don’t feel the same way.
And it’s leading to people getting depressed when they realise that cancer affects you long after treatment stops…
 
Telling someone, or expecting them to feel glad that they survived cancer is like telling war veterans with PTSD that they should be glad they’re alive…
 
It’s not easy being grateful for the worst thing that’s ever happened to you…
 
And the pressure we, as a society, put on these survivors to feel that way is not helping.
 
How we’re expected to act and behave, despite how we feel
SUCKS.
And if you feel the same way .. or if you, or a loved one are wondering why you’re not in that constant state of euphoria everyone talks about for beating cancer, believe me – 
 
YOU’RE NOT ALONE.
 
I come off as happy, positive, cheery even in the fact of adversity. As someone who’s adapted well to this journey. Someone who’s won their battle. 
 
I don’t feel like I’ve won…
 
I hate that I got cancer. I hated having to suffer through it. 
 
And to this day I still suffer because of it. I spend more
time at the hospital getting treatment and waiting around for appointments than I do at university or hanging out with friends.
I get aches, spasms and cramps every day for no apparent reason. I have skin
peeling from my body, that itches incessantly and I can’t do anything about it. I get tired for no reason, I
fall in and out of depressive moods week by week and I’ve had to go from not
being able to walk for all the tiredness to being able to live a normal life 8 times now. 
It’s been 3 LONG years…
and I’m
STILL not done with this! 
I don’t feel
like blessed… I don’t feel brave… I don’t feel proud…
I don’t feel “glad to be alive”… not all the time.
More than anything… I Feel Tired.
 
And that’s me. Someone who’s managed to see, and maintain a better, more positive outlook about my treatment and where I’m at. 
 
I’m not alone here either. In fact, I’m representing the majority of survivors here. This reflection by another cancer patient on the untrue, frustrating stereotype that cancer survivors are expected to encapsulate, went viral and had huge support. 56% of cancer patients seek some form of psychological or medical emotional assistance in their treatment. Remember – not everyone is open, or can get access to that help. I’m sure everyone with cancer needs it, at some point in their treatment. 
Even those survivors, like me, who come off as mostly happy and positive don’t feel that way all the time.
 
It seems absurd that I have to say this. But it’s perfectly normal to feel bad after cancer… 
 
You don’t have to put up a facade, or berate yourself for the expectations of others. 
And it’s okay to feel down and pissed off every now and then. Everyone does. 
 
And you’re not weak to admit that you’re going through pain and suffering, physically and emotionally. In fact, it’s pretty brave to admit that you are. 
 
But it shouldn’t have to be that way. You shouldn’t be ashamed that you’re finding things hard. 
 
I’m writing this to let you know that you don’t have to be brave, badass or blessed to beat cancer. You don’t have to be those things to get through periods of depression or hardship or to accomplish anything in life for that matter… this part of my message applies to anyone.
 
How would I describe myself in 1 word? 
The way I’d handled all of this, how I’ve adapted and changed after cancer… I’d have to say that I was
 “smart.” 
 
The words I took to heart most when I was diagnosed weren’t those cliched “You’re strong!” “You’re brave!” or “You’re a fighter!”…
It was the words of my doctor – who unknowingly reminded me that there was something on my side in my battle. That the good news was I was 17 and had cancer.
And also the the words of a nurse who told me, the day after being diagnosed that the next few weeks would be filled with pain, nausea, diarrhea, fevers and tears.
 
I didn’t go into my battle kidding myself. I knew it would be a long haul.
 
But I realised, when I took a step back and thought about it, that the fact that I knew and could acknowledge the pain that was coming meant that in the future, I wouldn’t give up when that pain got real. That I’d be prepared for it. That I would look at what would come after hardship rather than linger on it.
 
Realising and accepting that I was human, that there were things I couldn’t control, that it would take time to get better didn’t bring me down into despair… In truth it left me only one way to go. Up.
 
It was what allowed me to take a step back and look at where I was, without any delusions of grandeur or expectations of miracles. And that allowed me to see where I was and what I what I should do going forward with a startling clear logic.
 
Accepting that there were hard times to come, acknowleding that I was scared and worried made me focus on how I could get past my issues. And taking a step back and realising that only I could make myself feel down (no-one comes into your head and programs emotions into you – only you can) made me see that I actually had a choice on how I viewed my life and my journey. From there… choosing to have an attitude and living life on the path that made me happiest and healthiest became the only smart thing to do…
Looking in the big picture, and focusing on what I could control rather than what I couldn’t was what got me through this. NOT some inner strength or positivity or the blessing of others (though they were always appreciated). 
That’s something ANYONE can do. It’s not as hard as you think.
In fact – taking a step back and looking at where you are objectively, then acknowledging the hardships and doubts you have and planning your way around them will help you see a second, healthier and happier way of looking at life. And once you do that, choosing to view and live life on that path will be the easy, logical choice.
 
For me, during treatment, I didn’t get bogged down by the pain that chemotherapy, radiation and all my other treatments would bring – I chose to see those things as what they really were – the things that would help me get better in the long run. 
 
When I started feeling self conscious about my fitness and how I looked, I realised that I was only hurting myself to please others and chose to live my life how I wanted to live it – not by how others told me I should. And that’s made me the happiest, most self confident version of myself. 
 
When I get frustrated about how long it’s taking to get back to normal, or at how I’m being held back by this cancer, I choose to see that I’ll get there, in time, and how that this whole experience has taught me so much about myself and what I can do, that I’d go beyond that old normal.
 
These are things that ANYONE can do. 
And you can apply these to any goals you have in life. This isn’t just gonna help cancer patients…
 
You’re not WEAK if you think life is hard and painful sometimes. You’re definitely not ALONE. 
In fact, You’re NORMAL.
 
You don’t have to be strong to get through strife. Strength, motivation and the blessings of others help…
But the best thing on your side in your battle is YOU. 
 
And I hope this can help you get you on your side.
 
For those who know others are going through hard times , whether they be cancer survivors or not I hope this lets you know that just because they seem to be coping with it well – doesn’t mean they are. That simple question, “Are you okay” saves lives. 
Stopping that unfair expectation and breaking that stereotype of a survivor starts with YOU.
This was a reaction to this post – one of the most awesome reactions to a post of mine ever.
https://www.facebook.com/musingsofamedstudentpatient/photos/a.280281972124530.1073741827.276318712520856/328026504016743/?type=1&theater

 

And this was a talk I gave on this issue not too long ago:

 


Another place where this post was shared and the reactions, the almost coming out of other survivors after reading this is amazing. You’re not alone.

“Survivors are too often expected to put on a happy face because the cancer is “finished”. But that expectation is…
Posted by I Had Cancer on Friday, 23 October 2015

 
As usual – if you ever wanna talk, about anything I’m here.
 
Contact me on: Facebook – https://www.facebook.com/musingsofamedstudentpatient
Or as usual – email me or comment as anonymous if you’d like to remain that way.
Blog, Inspiration/Motivation/Help

I No Longer BELIEVE I’m a Patient. Why You Shouldn’t Label Yourself.

The other day, I was out to dinner and drinks with some friends. Amidst our casual banter about work, life and play we somehow got onto the topic of depression. It’s something that’s affected my friends, family and myself over my 3 years of being a patient.

One of my friends said something that got to me.

“Being told you’re depressed gives you an excuse to not try to get better. Maybe if people who say they’re depressed tried more, they wouldn’t be depressed.”

 

He didn’t mean to be judgmental or mean about it, in fact, he was sincerely concerned for their welfare.
But it was obvious that he didn’t know what depression does to you. That it saps away at your energy, your very ability to feel happiness, to the point where you don’t even want to get out of bed.

 

Someone else brought up a relative who’d been through depression and agreed with him whole heartedly.
I tried to tell him about how depression really affects you, and talked about how I got out of it (by taking a step back, questioning what I was doing and eventually, seeing another way of looking at things, and talking to people about it).  But he still maintained this idea that a majority of people use their depression as an excuse to not try – that it’s their fault they’re depressed.

 

At first I was a little frustrated that he didn’t understand the plight of the millions who live with depression.
But I try to never take thingsor criticism personally or dismiss them outright (I talk about that here). Instead I always use their criticism to try to improve myself and my ideas, and so after taking a step back and taking my own experiences and emotions out of the equation, I realised that he may have a good point.

When we look at ourselves, we’ve programmed ourselves to look at the bad rather than the good.

We label ourselves every day.

And it doesn’t just apply to issues like depression either…

 

We tell ourselves we’re not smart enough, not good enough, not cool enough to do what we wanna do. To get into our dream course, our dream job, to try out for the
first grade team or to ask that girl you like out on  a date – we always use how we label ourselves as an excuse to not try.

These labels are garnered by how we grew up, how we were raised and by what we believe other people think of us.
But when we say that we’re either smart or dumb, or that we’re weak or strong or that we’re hot or not, it’s not always a bad thing.

 

These labels can be useful.

They allow people who are depressed or going through hard times to cut themselves some slack, and allow them to ACCEPT what’s happening to them.

And a lot of people look at themselves, and use those labels, either self-imposed or not, to improve themselves.

But it’s when we start to BELIEVE those labels, when we let them DEFINE us that they stop ourselves from trying to get better.

There’s a term in psychology, that often is related to negative connotations. Victim playing. It’s often used to describe pathologies, and circumstances where people pretend to play the victim to garner sympathy, manipulate people, seek attention, and to rid themselves of blame for what they’re going through.

If you’re someone who has gone through trauma, or depression, however, it’s only a natural reaction. You shouldn’t feel bad for feeling crappy about the worst thing that’s happened to you. It’s normal.

But sustaining this feeling, and using our disabilities as an excuse, only leads to us harming ourselves in the long run.

 

Half the time though, we don’t even know we’re labeling ourselves.

After thinking about his words, I took a step back and had a look at what I was doing, about 10 months after my transplant.

I thought about where I was at objectively, without any bias, and realised that despite not having any major treatments, despite not being hospitalised in a while, I still thought of myself as a patient.

That wasn’t a terrible thing – acknowledging my vulnerability would make me cautious. I’d watch what I ate, ensure I’d take extra care in terms of hygiene, sanitation, that I’d stay away from sick people and all the other things I needed to do to stay healthy because I knew I wasn’t a patient.

 

But I realised that at the same time I WAS USING IT AS AN EXCUSE to not
get fit, not want to learn, to not eat healthily, to sit around and be a slob.

 

It was stopping me from getting better!

That dinner was 2 months ago.

 

Since then, I’ve resolved to improve myself. Slowly, over time, I kept reaffirming and telling myself to not label myself, to not use my cancer as an excuse, in my head.
I did it slowly, by first doing little things that I was telling myself I couldn’t, or shouldn’t be doing, and then building up until I could do them.

And slowly, but surely, that became a habit… Your brain’s neuroplasticity and the power of affirmation and reinforcement, ensures that you can change your mindset on anything. Even if you feel like you can’t today (I’m a medical student, and researcher. Check out my book that I’m writing for the science behind this, and my own story!)

 

And today I’m proud to say that I don’t believe that I’m a patient
anymore.

I don’t see myself as a depression sufferer either.

 

 

I see the value of being cautious. It ensures I have motivation to stay
healthy, it allows me some leeway to take breaks when I need them, it ensures that I won’t push my body too hard in my quest to regain my health. It ensures that I’ll always ask for help if I need it, when I’m down. I see the benefit of that label.

But I’m not going to use my “being a patient” as an excuse to not push forward now. I’m no longer going to take a day off because I may have felt dizzy a few days ago, no longer not go on a run because my legs are too sore, no longer going to stop myself from going to classes because I shouldn’t be around too many people UNLESS I REALLY HAVE TO.

I’m not going to lie to myself anymore.

 

 

It wasn’t easy at first. But a change of place, a change of atmosphere, A CHANGE IN ATTITUDE really helped me get there. I started by going on a daily walk up and down a long hill, doing little bodyweight exercises like sit-ups and push-ups and helping out around the house. And I slowly built up from there.

I knew that I wouldn’t see results straight away, that I’d feel tired at times, and lazy at others. But I’d push through those times. Eat well, at the right times to make sure that I didn’t even feel that lazy feeling.
I knew that at times, I’d have to take breaks, especially when I’d be getting my treatments.

But I reminded myself that I wouldn’t use my sickness as an excuse to not try.

I’m glad to say it’s working.

Because of my consistent work, because of my commitment to getting healthier and because of me not using my past as an excuse, I‘m happier, healthier and fitter than I have been since being diagnosed.
I’m running around, I’m going to classes, I’m playing basketball and I’m looking and feeling better than ever, since finding out that I had cancer.

 

I’ve been a patient now for nearly 3 years.

 

Today, 1 year after my 2nd Bone Marrow Transplant I no longer think of myself as one. 

 

And to those of you reading this – I hope this inspires you to stop using these labels as an excuse too.

Have a look at yourself, and see what you label yourself as.
If you find yourself telling yourself you’re too sad, stupid depressed or weak to do what you want, do exactly what I did.

Take a step back, have a look at yourself and question why those labels DEFINE YOU. 

And once you do that – take your time, take little baby steps and you’ll

STOP YOURSELF

FROM STOPPING YOU.

If you think you’re not smart enough or accomplished enough to do something, ask yourself why?
No-one was born with the ability to read, to do calculus, to do propose theorems. THEY MADE THEMSELVES PEOPLE WHO COULD.
If you wanna get that job, get into that course, pass that paper –> try your hardest, work smart, not hard and you can get to where you wanna go. It won’t happen straight away, but if you work hard, ask the right people for help and work your way up like I did, you give yourself the best chance of doing it, don’t you?

If you think you’re weak, or dependent, or just unable to change, take a step back, have a look at yourself and you’ll realise that just telling yourself that is stopping you from trying. Instead, take small steps to improve yourself. Give it time – weeks, maybe months, and you can change yourself to become the happiest, strongest version of yourself.

If you think you’re depressed, and bound to stay that way, maybe, just maybe, you’re making yourself more likely to be that way too. When you next are in a good mood, when you’re feeling happy and able to do this; set up a system of talking to others, whether it be friends, family, a professional psychologist, and you’ll give yourself the best chance of getting better. You may have had some bad things happen to you in the past, you may have grown up to be that way, you may even have some chemical imbalances that predispose you to feeling that way –> But it’s only you – your perception of yourself which stops you from trying.

Depression isn’t something you have to suffer from forever. It’s almost comforting to be depressed. It becomes your norm. Trying to fight it, to do things seems like way too much effort at the time, so many don’t try to get better.

But in truth – it not only confines us to this box, to us feeling worse about everything… It also isn’t too hard to break out of either. The toughest thing about depression is that it makes us believe that we can’t do anything. But just like teaching yourself how to get past those labels, your brain can be rewired to release more dopamine and serotonin – our happiness neurotransmitters – as your norm. It’s actually easy to do. It just takes time, and a bit of planning. Accepting that it may not happen right away and that you will occasionally fall back into downward spirals every now and then, only allows you to get back up and continue on your trajectory of becoming a happier version of yourself, when you can. Again, this isn’t just conjecture. Neurobiology, and decades of psychological research guide what I say, and the advice I give (again, I’m writing about it – be sure to check out nikhilautar.com/mybooks for more info!).

 

But yeah. Feel free to contact me if you need help with these issues. I’ve talked to hundreds of people, and not all patients as some of my posts may make you believe. (contact me via here anonymously, at [email protected] or via my FaceBook page)

These labels keep you grounded, they keep you realistic and they can motivate you.

But if you believe them, they only pull you down.

If you give it time, you CAN become the best version of yourself.

And as I said before, if you need any help in your journey, feel free to contact me.