Friday, September 4, 2015

Losing Independence and Feeling Like a Burden. But a Kind Gift's Gonna Get me Some of it Back.

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Cancer, as a young person, can affect your life in SOOO many more ways than people imagine. It's not just the brutal, life-threatening treatment that leaves scars, physically (pick any picture of me and you can see it), psychologically (I still get nightmares, that I'm back in hospital getting treatment, every now  and then) and emotionally (coping with the loss of your looks, physicality, and sometimes self is hard, especially when you're meant to be "at your peak); it's the little seen, but all too present loss of independence that can REALLY get to you. 

As a young adult, you're expected to live life "To the max", having started to come to grips with who you are as a person, you're expected to go out, stay in, explore the world and do things, pursue the dreams, and start to live the life you've envisioned for yourself... but when the long term effects of cancer stop you from doing that... it SUCKS. 

But what sucks more though is the fact that you have to rely on others to help you. Because another thing that's expected as you leave your teens and hit your 20s is that you go out and become your own man. Or woman. 

The last few months, as I've had those eye; let's call them "episodes" (1/10,000 complications happened in EACH of my eyes, a few months apart), as I've started further chemotherapy based treatment for the chronic graft versus host disease that lingers in my body, and as those awful cramps I keep talking about have gotten worse and worse, I've had to rely on others A LOT. My Mum, Dad and Brother, the most. But others too. 

I remember the day before I lost my left eye, I was cramping so bad that I needed a friend to escort me from the full lecture theater of concerned looking medical students (the dean herself was lecturing, and looking worried too), and look after me as my brother pulled up to take me home. I was thankful. As hell. Touched, at not only his, but also the whole's grade's obvious concern for my welfare. An amazing trait to see in a room full of people who are gonna be looking after our, and our children's well-being in the near future... 

It restored my faith in what I said here. That doctors DO care. And that they DO want to help others. But that sometimes... they feel they can't. And that's what gets them down.

But despite the gratitude I felt for that act, and despite the occasional kind comments and well wishes I get from people, often strangers, when I tell them my story, I can't help but feel... pity for myself every-time I have to lean on someone else's shoulder, or say those things. 

That self-pity can easily turn to self-loathing. 
Especially in the context of home. 

My parents and my brother are the most amazing people I know. They've not only looked after me, caught me when I fell (literally and figuratively) and on top of that, also looked to help others  (this amazing interview my mum did to let other carers know they're not alone was beautiful. You may not know this, but often, when people approach me through there, I "refer" mothers, fathers and other family members to her, and she gives them support) - they've kept me happy in these, the most frustrating times of my illness too. Which is just as important. 

When there's a party or an event on at uni, they usually offer to drive me. There, and back (no matter how late I end up home). When I went to Adelaide last year for a medical conference, and Canberra, just a week ago, for the International Youth Ag Summit, they called everyday, readied everything, picked me up from thousands of miles away - Dad, for last week's conference, actually took a week off work to stay and care for me. He did everything, from helping dress me (it's been hard to do that, with the recent rib-tumour surgery. Don't worry - I'm fine and recovering now), lugging around my bags and stuff, and being forced to stand inconspicuous, mostly bored in the background during lectures and breakouts, to make sure I was fine and could attend. 

And my poor, besotted brother is usually the one to pick up the slack. He's been tasked with taking me to poker games every night, often the only thing that takes my mind off things when I'm cramping really bad, the last few months where I couldn't drive. And he's had to do that, as well as all the other things; taking me to appointments, putting cream on my back, running after me and doing all the things I couldn't do normally for all those reasons, AT THE EXPENSE OF HIS SPARE TIME and holidays... At the expense of HIS youth. 

I'm grateful for all they do. But at the same time... they get frustrated. Over time, as their acts of kindness becomes expectations  for the boorish, annoying person that is me (I take them for granted and treat them like crap, WAY too much), they can't help but snap back at me. Or give me frustrated looks. And do those amazing things they do for me everyday begrudgingly. 

And I can't help but be frustrated by that either. 

I HATE the fact that I have to rely on them so much. I HATE the fact that I can't make all those things I want to; half the time because I'm not up to it, half because I can't bring myself to beg my family for a lift.  I HATE that when I look at the kids playing in the street, or when I see my friends posting pictures of their birthdays or trips overseas, or THAT when I JUST see other people WALK AROUND, MOVE FREELY AND PICK UP THINGS WITHOUT FEARING PAIN, I feel a surge of jealousy overcome me... 

I wish I could do all those things. I wish I could just be normal. I wish I could do thing myself... and not feel like a burden all the time. 

And I've felt this way for ages... As do many others struggling with things like this, or chronic illnesses or disabilities and even depression... my age, younger and older. 




   
But recently... one extremely kind act has changed that, just a tiny bit, for me. 

I recently got a message on my personal Facebook from a stranger. Not too uncommon an event due to this blog. But this was an offer to give me money. 

Now I've been offered money, gifts, even flights to America being paid for through this blog and through my speaking a few times now. I always tell them to donate it to a good, effective cause, one that helps the most people possible, or to donate to one of my own fundraisers, if I have one running, if they insist. And so far, they've acquiesced. But this lady kept insisting. 

What was touching about this though was the reason why she was insisting on ME having it.

Without me saying it, ever publicly before, without me having blogged or complained about it all... she'd somehow hit the nail right on the head. 

Her own words... Here they are. I "just noticed that you'd like to play poker and I wondered if I could offer you some cash for taxis to get you going independently. I figured the hardest part (well maybe not the hardest...) of being a tad sick is loosing the independence which you've just gained as a young adult so nobody need know In fact I propose you don't mention it and just take s bloody taxi


At that point in time, the week after being released from hospital after my surgery, that was probably the most frustrated I was feeling by this. I was otherwise healthy, I wasn't in any major pain, but I still needed help showering, putting on clothes, shoes; even getting up from bed and getting to the bathroom when those cramps came on. 

The humiliation was one thing. My parents, and brothers' frustration at me, and mine at them, another. Tension just builds around the home when someone's sick, and in our case, it was sky high, and my activities, my "running around after others' while you're still sick" and my freedom was being questioned and ground away into dust.

I was sick of it. But as touching as it was, I still wasn't going to take that gift. I do all this not for money but to help others. So I told her, after she insisted on giving it to ME for my personal use and personal use only, that if she REALLY wanted to help me, she should give it to my soon-to-come charity (a social enterprise I'm talking to a few people about and starting to develop that'll help charities gain a new source of income and help businesses out simultaneously... I'll post more about it later). 

But again, she admonished, "Nikhil, I'm probably your mums age so I'm going to have to pull rank here! You are not a charity. I give both time and money to politics and charity when I can and you are neither - you're a young man who should take a hearty offer to enjoy life and have fun with tiny help from someone offering who is happy to do so."

"Just be simple and un philosophical for the moment, push away boring old reason, humility and just take it!! Don't be shy or embarrassed. The only condition is its for you and it's for fun! I love that you play poker!"

"you should accept and should take whatever life throws your way... Just because you can! You of all people know it throws some shite... So a random stranger, eyes wide open offers you taxi cash, just take it." 

And you know what, after talking to her for a while, after learning more about her and her battles with disease, and her work with social enterprises too... I decided to do just that. 

She sent me the money just yesterday. And I'm gonna use it. For that reason only. All my poker winnings go to the Buywell Foundation (my charity's name) seed-fund anyway. Technically, she has given to my social enterprise. Technically, she has given me back some of my freedom, and technically, I am gonna be using it for poker. 


But in reality... she's allowed me to feel nearly normal and free again. 
And that's EVERYTHING. 

She's insisted this remain anonymous. And it will. It wasn't a HUGE amount - don't worry, I'm not gonna be heading off to Vegas for a weekend of debauchery anytime soon (unless I win big of course... though to be honest... I'd chuck it all in the bank and build up that charity-cum-company anyways). 

But one thing I've also realised is that TECHNICALLY.... I'm being payed to play poker now. 
So TECHNICALLY... I'm a Pro! 

Hahaha - I'll keep you updated on my progress, on if my current $4000 "career" poker earnings go up significantly... but the way I play, just for fun, in low stakes games, her donation should last me months. And hopefully by then, the medications will have kicked in, I'll be over my cramps, and back to being me. 


What will last forever though is my appreciation for her keen sense of understanding. 
And the knowledge that others in the world DO GET IT. 

Being sick, or sad sucks. But if you feel like you're a burden too, it sucks even more. 

Hopefully this allows you guys reading on to understand that, and be more aware that others in your life may feel that way. Or that you're not alone if you yourself do. One thing I've also realised from all this, the weeks of tension that's lingered in my home, is that they wouldn't be doing all this for me if they didn't love me. 


Caring is the physical embodiment of that love, and I thank everyone who's ever shown me that care in my life because it's made me the man I am today. 

Now before you guys who wanted to donate before go off in a hurry and use this as a way to get me to accept gifts... again thank you SO much but honestly... I'll be fine! You save up that money and donate it when the kickstarter for Buywell comes out; 'cause when it does... it'll go HUGE. And I truly believe, and want it to make the WORLD a better place. 















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