Sunday, May 30, 2010

A day of reckoning approaches

Tomorrow - my study of the alignment of the stars, the tilt of the earth towards the moon and my homemade sundial tells me - will be May 31.

Which means it's almost June already and time to discard the first calendar which has marked Year One on dialysis.

It also means I have a date with a bottle of vodka and several boxes of pills in a pre-planned suicide attempt.

It was a pact I made with myself this time last year, that if I got to this point, I'd just give the sadistic bastard that is God the last laugh and quietly surrender.

This was the only means by which I could trick my brain into ceding to dialysis. I had to convince myself that such would be the brevity of my reliance on the treatment that one day I would only have a hazy recollection of the time when I was dependant on a machine to keep a heart attack or stroke at bay.

I am reminded of that song from the musical 'Rent'. How do you measure a year? They suggest markers like sunsets and miles and cups of coffee. While there have been many smiles and moments of loveliness in the past twelve months, I largely measure the year gone by in boxes and litres of fluid and hands worn from many, many three-minute hand washes.

And now there is the awful thought that this may just be the overture. The Ballad of Brendan may in fact be a full-blown opera and there isn't one fat lady in sight, unless you count Mary Harney and she's hardly going to help my case.

There will be those reading this who have been or once were on dialysis for much longer and they will regard me as a wimp and a moaner.

Two charges I accept without protest.

But luckily so, because for all my dramatic talk, it is my wimpishness that will ensure I could never carry out my threat.

So it'll be Happy Anniversary to me and Brendan. I'm looking for suggestions as to how we can mark the occasion. The official date is June 21. The longest day of the year. How very apt.

Thursday, May 27, 2010

Tesco - Every little Helps

I had a golden moment yesterday, in the Barry's Tea sense of the phrase.

It happened in Tesco which just goes to show that miracles can be visited upon the earth in the most unlikely of places, including a rubbish supermarket that can sell you car insurance but regards a well-stocked fruit & veg section as optional rather than essential.

In preparation for a night with friends that would largely centre around cheap pizza and even cheaper wine I went to purchase that which was on special offer over the road.

As the cash register lady* scanned my items, she eyed the wine, looked at me and then asked me for ID. I laughed. The nice people behind me in the queue had a chuckle. It was all fantastic fun, until I clocked her expression and the unwavering and authoritative stare of one in full citizen's arrest mode.

"I'm 28 in human years and 104 in dialysis years you mental woman," I screamed in my head.

"Look at me ravaged by life, look at these circles under my eyes caused by Brendan, look at this tummy, scarred and under occupation by the foreign dictator that is this tube," my head voice continued.

But I smiled politely and apologised for the fact that I did not have any proof of the fact I was over 18 but said I could assure her I had long since left any age of schoolbooks and teen drama behind.

The episode got me thinking that there should be an alternative ID system for people who deal with crap - counting maturity as a measure of stress and trauma suffered rather than in birthday cake candles extinguished.

Those who have sailed through life wouldn't be allowed any alcohol or drugs or given permission to enter clubs or pubs or casinos or to play the lotto.

Only those who had experienced loss or hardship or pain would be permitted to have fun and play games with the hope of becoming filthy rich.

Of course, it would allow for children who were having a hard time to develop chronic addictions before puberty and would probably lead to a lot of violence amongst the messed-up types who would congregate in large numbers to socialise after their anger management classes let out.

I may need to fine-tune the theory a bit.

In the end, I did get the wine and I walked away a little more pleased with the world on May 26, 2010. Despite it all, here was some hope that I still looked fresh-faced and youthful.

Take that kidney disease.

* Cash register lady was admittedly quite elderly and possibly visually impaired

Saturday, May 22, 2010

Medicine Women and Men

Doctors, I have known quite a few.

I reflect wryly on a lifetime that has been punctuated by several childhood illnesses, accidents which were not my fault and collisions with immovable objects which were entirely down to people building walls and driving cars in stupid places.

Every incident taught me a little lesson. Not to drink emulsion paint for instance. Not to get so carried in away in a game of 'tip' that you run into a wall at school. To sleep sitting up when you have whooping cough. To wear a seatbelt.

Every incident also introduced me to a different representative of the medical field. Several of them in fact.

Did one of them ever spot my kidneys were failing? Nah. But I digress.

Some I have come across have had a bedside manner that at best should have seen them specialise in pathology. The practice of medicine rather than theory of their text books made them visibly uncomfortable - coming into constant contact with those individuals heretofore referred to as 'the patient' in their case studies and lectures unsettled them greatly.

In my experience, female doctors are generally nicer, many of the men giving off the impression they are only there because they were judged to be "very bright". If you can get into a career of saving lives, why, it would be almost rude not to capitalise on that means of making money and retiring at the age of 50.

A sense of vocation anybody?

The surgeons I have met have all shared that special...self-assured air of importance. This is something I encourage and actually look for in the scalpel brigade. Humility is not a quality I would wish to attribute to any human who is going to cut me open and meddle with my insides. I want a surgeon who believes he or she is God.

Across the board, what they all share however is an ability to detach themselves and stand apart from the scenes that unfold in front of them, because of them, every day. It is super-human.

While grief envelopes the family gathered in the waiting room or the patient perched on the bed, they maintain a steady voice, a stream of non-commital answers, as if they are blind to the effect of their words.

It makes me think of soldiers in battle. A job to do and someone has to do it.

Perhaps it takes more guts to deliver news of a death sentence than to inflict death itself.

Tuesday, May 18, 2010

For the week that's in it

For every seven weeks of denial, there comes again the week of tests. My regular check-up with the doctors who decided against becoming renowned brain surgeons or specialising in human spontaneous combustion, but who chose to become experts on kidneys.

It brings its annoyances, of course. Nobody likes having a needle stuck in their arm and my veins are notorious when it comes to stage fright. There's only one diva amongst the lot of them and she sashays forth to the skin's surface each and every time to take one for the team. The semi-permanent plaster mark on my right arm is a testament to her durability and bravery.

But before the needles, there is the onus on me to collect what urine I pass over the course of 24 hours. A particularly un-ladylike process. Difficult to maintain any sense of grace and femininity when balancing over a toilet bowl, aiming at a container - which brings us to the collateral damage of sickness. After it has hit you physically, it moves on to niggle away at that ridiculous human delusion of dignity.

The blood tests and the urine gathering are the preamble to the main event which will come on friday, the appointment with one of my consultants. There are two of them who work in tag team action. Both men, both nice.

I am however entirely uninteresting as dialysis patients go. I don't have some strange underlying condition that caused my kidneys to fail, my dialysis is working fine (high five to Brendan), I am not overweight (which can make getting on the transplant list difficult) and I'm not a defiant smoker who steadfastly refuses to quit.

Thus my appointments are four-minute affairs.

We go through what medication I'm on. They ask how my energy levels are. They do the obligatory swift examination, but then as we approach wrapping things up, I delay matters by asking some pointless questions.

"Can I roller-blade backwards anymore"?

"If I hang upside down for one hour every day and try to angle all the blood in my body towards my kidneys, do you think that would stimulate function again?"

"Would you think all my other organs are in there pointing and laughing at my kidneys and calling them losers"?

I can only hope that if I annoy the consultants sufficiently, they may slip a backhander to the surgical gods in Beaumont and urge them to transplant me quickly so that they can get rid of me.

I never put a price on love, but ethics can surely be bought at the right price.

Saturday, May 15, 2010

A nun I was not

There is a small snippet of the spiritual journey I have taken throughout my life that the family enjoy recounting from time to time.

It recalls the phase I went through as a young child, when I suddenly took to spending several minutes every night genuflecting in front of the Sacred Heart picture above the fireplace in the living room.

The story goes that I would commence my solemn mini-novena while the 9 o clock news was on the telly, blessing myself constantly and gazing towards Jebus with pleading eyes. The routine was so vigorous in its exercise of grace and piety that my mother was sure she was raising a little nun.

Not so. I remember all this very well and it coincides with the time when I discovered that people got sick and they died. I was most disturbed by the fact that it appeared you could just be snuffed out in your sleep and so bedtime became a point of serious distress.

For this reason I made it my business to square things with God every night before I turned in, in an effort to make sure he didn't take me. I would like to say I prayed for my family too, but nah, it was all about saving myself back then. As a seven-year-old, I was quite self-involved.

But that was a simpler time when you believed what you were told to believe and while admittedly I had more faith in James Bond Jr and Captain Planet at the time, I took it at face value that God existed and He was on my side.

I'm not going to get into the layers of my belief at this point - and there are many layers, which clash and come into conflict, now moreso than ever. Sometimes I believe in something greater, most of the time I don't.

What I do know however is that transplant patients may well be the human beings that God forgot to create until the last minute on the seventh day. There He was, kickin back, watching the clouds go by and He thought "Fuck, I forgot that other crowd of losers".

And just like sunday night homework, He rushed it and left us with organs that weren't quite up to the task of getting us through a whole lifetime.

Maybe He didn't bank on modern medicine finding a way to keep us ticking over with transplant surgery - or maybe He did foresee that and thought He'd like to see how things would turn out when mere mortals tried to play at His own game.

Taking an organ from one of His children and placing it in another? He was curious to observe such messing about, and curious too to see how the human-being with its weakness for experiencing guilt and with its great capacity to empathise with complete strangers would handle knowing that one person had died so that they could live.

Sadistic bastard.

Monday, May 10, 2010

Send in the Clowns

Ambitions unrealised.

So many of them, I don't care to count. And this feeling that can't be shaken that they won't ever happen now, because I'm just too tired.

It is to my deep frustration that all my childhood I was waiting to do things "when I get big", but then I grew old before I grew up. I may still be in my twenties, but I missed the middle part, the bit that lies between having hopes and gaining hindsight. That's the important phase. That's where you define yourself.

It seems like all my potential is lost. Perhaps it was stored in my kidneys and now it too has failed or is chronically impaired.

The goalposts have of course shifted considerably. Ambition to succeed has been overshadowed by a more basic desire to just survive and feel well again, but there is still regret for the life I thought I would have and the person I thought I would be.

Now I'm defined by a medical condition. Never more so than when in hospital when the semi-circle of junior doctors forms around my bed and I'm presented as an "end stage" or a "stage five".

I just wish I had known. If I had been given some hint that it was coming, maybe I would have spent less time messing around and more time making it count.

Those who know me will say 'nah, you really wouldn't have Reg'. They're probably right. But maybe I would have surprised everyone. Most of all myself.

Wednesday, May 5, 2010

A Kit Kat break...

A visit to home.

My real home that is, where I wrote on walls and reared caterpillars and once went through an unfortunate phase of ethnic cleansing with some family pets.

It brings an enforced break from online activity (newfangled inventions such as the internet and the microwave oven are not tolerated there and are in fact suspected to be the devil's business).

It also brings me into constant contact with my mother.

Being sick has brought its advantages when it comes to these visits. There was a time when on my arrival, I would be presented with a list entitled 'Jobs for Reg' and told to get to work. Chores would include everything from mowing the lawn - which isn't so much a lawn as a scene from 'Jumanji' - and painting the kerbing around the drive, which should in my view be set aside as a task for those on Community Service.

Now that I'm poorly - and such is the joy of the family at the simple fact that I'm alive - they don't make me wear my little fingers to the bone anymore. I get to sit down a lot and look out the window, which as you know is one of my favourite things to do.

On the downside, it has turned my mother into a bit of an overly alert sentry when it comes to monitoring me. She seems to be of the opinion that my condition may visibly change before her eyes and thus she devotes her days to staring at me.

If I remain motionless for more than two seconds, she'll be there at my side, poking me. "Jesus, Mary and Joseph, are ya alright?...Reg...REGGG!!!!"

If she could move her bed into my room and sit up all night, watching me sleep and checking my breathing, my heart rate and how Brendan is progressing, I don't doubt she would.

Which brings me to a relevant pearl of wisdom I wish to impart - there are few things in life more valuable than a reliable locksmith.

I realise that many would find this very annoying. It may even cause some mother-daughter duos to fall out. But I'm a patient sort when I want to be and always there has been the fear of losing her in the same way I lost my dad. Without warning.

So I put up with being mired in a technological blackspot for a few days and with the long drives with Brendan jumping around in the boot and ten boxes of fluids on the back seat.

I also endure that feeling that I am being watched all the time and the knowledge that it is only when I go for bathroom breaks (not an excuse I can call on very often with failed kidneys) that I will escape the staring competition with the woman who foolishly gave me life.

One does it for the simple pleasure of waking up in the most familiar surrounding of all and for the sense of being completely at ease that can only come from going back to what you know best.