the thin edge of the wedge...

Next thing you know, we'll be pumping our sprinters full of amphetamines and bolting outboards to our swimmers...

http://www.abc.net.au/news/2013-04-12/qld-cwa-to-allows-packet-cakes-in-competitions/4626206

thinking of you...

Found out today that a dear, young friend has been diagnosed with a rare and aggressive disease. The friend is one of those warm, bright souls that I have been fortunate enough to meet in my life. You may know the type - those really cool people, (like most of those I know and love), who are just enough skew whiff from centre, to have been misunderstood by some and unnoticed by others, yet are a catalysing influence that draw disparate groups of individuals together, allowing bonds to form between those that may have never have crossed paths otherwise. One of those who makes you laugh and smile and reminds you yet again, how over-rated growing up really is. A truly caring and compassionate soul, I send all my love to him and his family and wish them the very best I can for the challenges ahead. Regardless of whatever faith or systems you hold true, send a little thought toward the part of the ether that catches yours, because he bloody well deserves it.

Hypocrisy or balance?

I find it odd that just a few weeks ago, some Aussies and some in the Australian media were trying to gain leverage on a story by chastising an indigenous Australian athlete for carrying a symbol of Aboriginal solidarity and "politicising" the Olympics, while this week, there's a push for an apology to a white, Aussie, former Olympian for wearing a symbol of solidarity to support two Afro-American athletes in 1968 and make him a hero o.O

ode du toilette...

Recognising that context is everything and choosing to ignore such a philosophy for the moment, here is a short poem I recently wrote for a friend...

"ode du toilette"

Toilets are cold
Toilets are mean
They are best avoided when spattered with green.

Bereft of compassion, warmth, care or class
at least they don't judge if you're baring your arse.

They'll blithely stand by, unemotionally listening,
to bile and shit, whether hot, cold or glistening.

and oddly enough, though they'll often drink blood,
they sometimes won't swallow that which lands with a thud.

a good fellowship makes you stronger...

Since my wife came home from her kidney transplant, the daily routine has been getting up at 6am every morning, to take her into the hospital, so the doctors can see her and blood can be taken. We then head home, (generally after a few hours), and then call them in the afternoon once the test results are back so they can tell us how to adjust the myriad of anti-rejection medications. In addition, they did the first needle biopsy of the new kidney and found the beginning of a rejection episode. That meant additional intravenous treatments at the hospital over three days, on top of all the pills at home. The biopsy procedure is very delicate and it is crucial that the patient does not move during the procedure and what's more, the patient must remain as still as possible in bed for 6 hours afterwards - no standing or sitting up, nothing. There will be follow up biopsies and the journey in to the hospital will continue every single day, including weekends, until the various issues are sorted and the frequency decreases. The drugs are strong and both the treatments and the journey are tiring as is being constantly poked, jabbed and drained and I admire my wife immensely for how she is dealing with it. Particularly when I consider that this part of the process can continue for months.

I also admire the other families that are at the hospital each day, going through the same things, all experiencing their own variations on issues and treatment and the camaraderie that all of us have developed as we shuffle in, bleary eyed, each morning and greet each other with stories of the previous days treatments. My wife and I have to travel about 30km to get into the hospital and both of us feel for some of the other patients, who are from the Northern Territory and are not only a long way from home, (some are from the far north so they are from over 3000km away), but they have to stay in paid accommodation, (motels etc..), for weeks on end, with no idea when the treatments will settle enough so that they can head home again. All of the patients, my wife included, go through pain and feeling ill and it is so very great to feel the humour grow amongst us as we search for ways to take the edge off the experience for each other. All looking forward to the time when cherished lives will recede to events more mundane.

Until that time, the days continue with never ending uncertainty, interlaced with moments of every emotion one can imagine, as well as occasional good humour and frivolity. Drawn together by circumstance, perspectives on the universe intermingle and our shared experiences give us strength. It makes one reflect on what is really important in life.

even a gift of life is conditional...

My wife suffers from a hereditary condition called polycystic kidney disease or (pkd). Her mother had it and one of her brothers has it, as does one of her, (my step), daughters. Cysts grow in the kidneys and destroy the functioning tissue, eventually leading to kidney failure. The cysts can also spread to other organs where they do not usually destroy tissue. As the cysts grow, they can also cause the kidneys to grow very large. You can read more about the disease on the Wikipedia page here and New South Wales Health have their Renal Resource Centre page which also has an info sheet you can download. Of course, there's always a Google search as well.

My wife's kidney function eventually degraded to the point where a little over a year ago, she had to begin dialysis which meant 3 visits a week to the hospital for about 5 hours each time. Although always improving, dialysis is a temporary measure. It can affect the body adversely over time and gradually loses effectiveness so ultimately, the treatment for the condition is usually a kidney transplant. For many people, when they hear "transplant", they assume an organ is removed and replaced with another. In the case of kidney transplants, this is not always the case. Under normal circumstances, the new kidney is implanted lower down in the front of the abdomen, giving the recipient a third, (but functioning), kidney. One of the effects of pkd is that the cysts can cause the kidneys to become very large and that is what happened in my wife's case. Her kidneys had become so large that there was no room in her abdomen to implant a functioning kidney and has a result she had to have surgery to remove one or both of her existing kidneys and recover from the procedure before she would become eligible to become a transplant recipient. In her case, both kidneys were removed. It took some time but she recovered well and continued on dialysis, (now more critical than ever), until a little over a week ago, we received a phone call to advise that a kidney had become available and she was going to get a transplant.

Thanks to the incredible thoughtfulness and compassion of an individual and their family, as someone passed, their kidney was donated to my wife and less than a week later, I had her home again, albeit a bit sore and sorry for her experience. The utter humanity of the act of donating an organ is unsurpassed and my eternal love and respect goes to the donor and their family.

Over the past week in particular, I have learnt a lot about kidney transplants and in the spirit of educating those who may need or wish to know, I thought I'd write this post to answer a few of the questions posed:

• Is a transplant a cure? No, a transplant is not a cure. In the case of polycystic kidney disease, there is no cure. You cannot make the cysts disappear as some eastern products would claim. The transplant is about improving quality of life. A new kidney means not having to go through 3 - 5 hours, 3 times a week, of dialysis which is a massive improvement in lifestyle. Eventually, the pkd will begin to affect the new kidney but it may take many years.
• Are there any side effects? Yes. The biggest side effects come from the immune-suppressant drugs that a transplant patient has to take for the rest of their lives after the operation. Obviously, these drugs suppress the immune system to prevent the body from rejecting the new organ. These drugs must be taken twice daily at the same times as a suppression event can begin in as little as two hours when the immune-suppressant levels in the body drop. Once that event begins in earnest, it can be extremely difficult to bring under control. The first three months after the transplant are the critical period where it is essential to get the levels of drug treatment right. After that time, the immune system tends to settle and stop fighting the new organ as hard and drug levels have usually stabilised. This period is known as accommodation.
  
  Additionally, due to the immune-suppressants, the risks of developing infections, contracting viruses and in particular, developing cancers are all much higher for transplant recipients, with the risk of viral infection, (colds, flu etc...), being particularly prevalent in the first few months and the transplant recipient must take great care to avoid such illness as it can become very serious.
• So, if it's so risky, why do it? In a broad sense, to live! My wife told me how as soon as she woke up from the transplant surgery, she felt instantly better. Her mind was clear and she felt alive, aware and sharper than she had for years. The clarity she described is one of the most common descriptions that kidney transplant recipients give after the operation with the effect being immediate. Not having to go through dialysis any more means that one can begin eventually to lead a relatively normal life again. Some of the heaviest restrictions disappear and people can live a long life.

I'm sure people will have other questions and although I in no way claim to be an expert on such matters, please feel free to ask any questions and I'll do my best to answer them, or find out the answer from those that are qualified to answer. Naturally, if you are going through similar experiences, I sincerely wish you all the best on your journey.

Boudleaux Bryant was wrong...

I am reminded by the circumstance of others, how important compassion is to understanding and that love is the binding tenet of our human existence. I am fortunate that those that I care for, stand testament to what I consider to be a true understanding of the nature of love. All of them, consciously or not, carry themselves with a bright core of compassion and simplicity itself dictates that I cannot help but love them. Don't get me wrong, they're human alright: they have foibles, get angry, sad, they have victories and are challenged like all of us. There is though, a commonality of light amongst them - not religious or even spiritual, (though I have in dreams, pictured it in my mind as the strongest and brightest ethereal tether, strung like a platinum white light stretching through them from head to toe). Old or new, near or far, hitched or not, family or otherwise, they are my friends and like me, they love. It's the nature of love that I'd like you to think of while you read this and for a point of reference, I'll explain my ideas on it's nature.

I believe that love is an absolute. There is no question of degrees, one either does or does not. It is possessed of all compassion and is a soul warming calm when at rest and a bubbling joy in motion. In of itself, it can cause no pain, (loss or betrayal are examples of events that cause pain) and love does not change. That does not of course, mean that people do not change or drift apart or that sometimes it is not better or healthier for people to step away from each other.

I can probably best illustrate this by how I explain my feelings for those I have found myself loving through my life: I love every last one of them now as I did the day I realised I loved them and this will never change. Regardless of whether the circumstances of our parting were good or bad, if we communicate or not, they will always be a part of my life and the things that I chose to love in them will always represent a part of their influence on me. To deny that I love them would be an exercise in futility as I would be trying to deny part of myself. Yes, I felt terribly hurt at the circumstances of our parting in some cases and would not choose to travel those paths again. However, if I was to claim that I do not love them any more then I would have to admit to not really having loved them in the first place. I must also point out that even though circumstance may be extremely challenging at times, love is always easy. If it isn't easy, then it isn't love. There are other influences that may cloud your existence. Love never will.

I dedicate these thoughts to my friends - they are all my family, literal or otherwise and every day of my existence is honoured by being a part of their lives. A special dedication as well, to my best friend, my wife - she is the light that guides my soul.

And to those who may happen upon this brief expression... I hope you can see through my eyes.