I am an enigma. Or I’m not.
Take yesterday … I was sitting at work randomly checking the news before heading off for home and discovered that twenty+ children had died in Switzerland. I nearly blubbered like a baby, but stopped myself because blubbering like a baby at work would be a trifle bewildering for my colleagues. The thought of the tragic accident, the scariness for those involved and the awful wait for news by families back home made me an emotional wreck.
Forward through to today and I clicky on a linky posted by Living Kidney Donation on Facebook. Instead of becoming emotional at what I was reading, I began to snarl and grumble.
This leads me to the realisation that I’m a bitch.
The post read (in my head): I’m a [whinging] mother of two little kids who suddenly developed kidney failure last year and didn’t keep my PD access site clean so ended up in hospital. I had to wait a week [i don’t think so, petal] to have a neck line put in so that I could have temporary haemoD. I was lucky enough to have a whole two (yes, TWO!) people offer me their kidney, but neither was a match. My husband [you don’t say if he offered you his kidney] set up a Fb page for me but nobody else has offered. Oh, woe is me. Please give me your kidney; I am more worthy than the little old lady (because she is old) and the childless (because obviously their lives have no meaning) and those who have been waiting for years (why should I have to wait for what should rightfully be mine). Oh, and before I forget, here’s a little poem my daughter wrote so that you’ll step up and give me what I want because the tears won’t stop streaming down your face. Won’t someone please think of the children!!!
This sort of thing really irks me. I do have sympathy for other people who are living with disease, most particularly kidney disease and failure because I understand first-hand (from a second-hand point of view!) what they’re going through and what they need to do in order to keep surviving/living. But this whole begging for something leaves me feeling queasy, and social networking online has made it very easy to beg.
I don’t know why I feel so uneasy and annoyed about this. Perhaps it’s because I was taught (through experience of poverty) not to ask for something that seems out of reach. Maybe it’s because I believe that if something is going to happen, it will happen regardless of how much effort you put into it. It could simply be because I know of people who don’t have the supportive network to be able to achieve this themselves and it feels like those who do/can are rubbing their supriority in the faces of those who don’t/can’t.
There are thousands (and thousands and thousands) of people around the world who are in desperate need of a kidney, and I don’t believe that any of them are more important, or more deserving than their kidney-failure-neighbour. You don’t become more deserving because you’re only in your thirties, or because you have precious children, or because you have a better job. You don’t even become more deserving purely because you’re able to tell your story in a heart-wrenching way, emotionally manipulating people into making what would inevitably be one of the biggest decisions they will ever have to make. You don’t become less important because you’re working class, or told a fib when you were seven, or forgot to say ‘sorry’ once for a minor misdemeanor.
I wonder if either of the two (yes, TWO!) people who weren’t a match offered their kidney for non-directed altrusitic donation, or for a paired donation. I even wonder if the woman in the article knows that some people don’t get offered a kidney ever, despite large and loving families and big friendship groups.
I think my biggest twirlypop is that it just seems so unnatural to be all feisty; I’m a very private person. GiL (who will now one day become SiL due to her recent engagement to BiL) was urging me to contact all the magazines and newspapers, wanting me to receive national praise for my heroic act of love and devotion. But I’m not a hero, and I donated my kidney out of love, not a need to be praised, or thought of as a better person. In my new job nobody (except the interviewers and the OH nurse) knows that I’m a donor and I want it to remain that way as long as possible. I’m just an ordinary girl, living an ordinary life and I did nothing extraordinary.
Please don’t misunderstand me; it is vitally important that those unaffected by kidney failure realise the cruciality of kidney donation, whether cadaveric or living. Living with kidney failure is harsh. There are fluid restrictions (including that found in foodstuffs), food restrictions, so many tablets to take, so many appointments to attend, so many operations to go through. Everything (weekends away, holidays, family functions, work, DIY, nights out at comedy shows/gigs, etc.) is difficult. Knowing that any day could be a Hospital day and never knowing if you’ll get out at the weekend because of exhaustion makes planning ridiculously silly. Having to explain why you can’t do something is difficult. People who don’t get it, when you’ve explained it eight zillion times already, are frustratingly irksome. And without a transplant (which is not a damn cure, MiL!) this will be the rest of your life. No remission. No Good News. Not ever. This disease is for life, however long life is.
There’s a brick wall … bang your head against it.
Some articles are good. Some Fb pages are good. But I think these purely begging articles/Fb pages are sending out the wrong message. And as more people jump on the ‘i deserve a kidney’ train and offer their ‘woe is me’ story, so more people are going to get left behind. And who will be their advocate? Who stands up for those who don’t have anyone to help them?
And does this ultimately make them more deserving of your kidney than the woman with a loving husband and beautiful children and massive support network?
(Day 149, NO DIALYSIS!!!)