Tuesday, July 27, 2010

An encounter

The dynamics of the meeting were a little strange from the get-go.

Strange for me, I should say. I blame the inner dialogue of my brain. Why can't it ever just let me be?

I was lunching with representatives of Baxter - the dialysis people. It was a meeting called at their request and when you are granted an audience with those who supply the elixir of your life you don't tell them you're washing your hair.

I tried to put it in the most positive context. I made comparisons - imagine having the opportunity to sit down with RTE, UPC or Dublin Bus, the joy I would milk from telling them just what I think of their service and how they could improve themselves. It would turn into a rant, a monologue unbecoming of a lady, a scene.

But that wouldn't fly with Baxter, rage would have to be censored on its ferocious rush to translate thought to speech.

I managed nice. I possibly even excelled at small talk and dialysis jokes. But this light at the fringes did not cloak the unsettling thought that this lunch, this threesome of one patient and two professionals created an odd atmosphere.

One particular notion was on repeat, looping around, removing the cynic in me from our circle of cappuccinos to stand aside, observe and report back the uncomfortable truth.

"Pssst...These perfectly lovely people have livelihoods that are dependent on humans like you having useless kidneys. Your sickness is the misfortune that butters their bread, settles their bills, sees their children through private education".

It is probably the reason why you will never see a consultant having a pint with a patient. They make money from the negative events in our lives. You are thankful to them for saving you of course, but in the same way you are much obliged to the AA for jump-starting your car. It is a gratitude that comes from the head rather than the heart.

The logical in you is thanking them; the emotional in you can't breathe for all the sadness and words without syntax that if spoken would project from you in a scream and a twisted knot of bitterness, resentment and child-like fear. The ego and the id, Freud would quip.

I never wanted to cross paths with the HSE, with my consultants, with the good people at Baxter, with the bin men who collect my health waste, with pharmacists who just about suppress the dollar signs popping up in their eyeballs when I arrive at their counter carrying a prescription full of euro.

But they are all bit-part players on my stage now. The whole bloomin' lot of them, cashing in on the worst days of my life.

Friday, July 23, 2010

Where have all the good times gone

Missing: My social life.

I appear to have lost it or given up on it or had it snatched from me while I slept several hours before midnight some weekend or other in recent months.

These are the days of revelling that should be all mine, raging against the middle and old age that will quietly enter and fill the evenings with its contented little joys of cocoa and comfy slippers and hot water bottles.

But the promise of happy chatter over incessant beats has failed to lure me out of my corner of Dublin for some time. There are many obstacles. Friends who have proper relationships and who are caught up in that smug waltz of inter-dependency that fills their diaries with daytrips and hand-holding and expensive dinners in candlelit lairs for couples.

I am not blameless however. I don't send the text messages with suggestions for fun on a friday or saturday night. I think about it occasionally, but then I allow that head-full of antics to cede to the reminders that I would have to set up before I go out, I would probably need a nap also, the fact that more than two drinks will have my heart hammering when I place my head on my pillow in early hours of tomorrow.

So there has instead been a growing reluctance to face the weekends. This is something I have only realised in the past few weeks, that I now value weekdays more because then I don't feel so pathetic being in bed early or structuring my evenings around silly soap operas.

Next weekend. Most definitely. There will be dinner and dancing and recklessness in abundance. There will also probably be bed by midnight, but a re-introduction to the night-life of the city of my college days requires the same soft touch as that of a debutante.

Baby steps.

In stilettos.

Monday, July 12, 2010

It's not my fault

I am enough of an opportunist to know it is a wise patient who occasionally uses her illness as the foundation of an excuse for just about anything.

I don't think this is wrong really - not by any relevant moral or ethical code.

It's wrong to try to get out of an exam by saying your set-dancing, bridge-playing granny has just passed to her eternal reward and it's wrong to fake sickness when you're blooming with health, but when you're fcuked, I figure there's little harm that can be done to your karma in turning the situation to your advantage.

The main excuse that I'm peddling at the moment is that my sickness is making me confused and a bit slow on the uptake, particularly when it comes to technology. It is true - you can check any of the websites - that CKD is said to result in a degree of head-scratching and mild mayhem upstairs. Toxins aren't removed from the brain you see. All those nasty elements that should be excreted remain up there, floating around, clogging up normal thought processes.

Now, I have never been a great one for electronics, having quickly graduated to the OAP bracket of comprehension once the DVD player came on stream and the VCR was relegated to the 'back in the old days' category of technological advancement.

But more recent years have seen the struggle become even more cumbersome. Tonight I tried to download an app to my mobile phone for the first time and I barely made it past the homepage on ovi.com. There were too many instructions and demands for passwords and usernames and requests to sign in to this account and that account.

I fear my lengthy and largely pointless college education did not equip me for all this. And even if I did come into the world with some ability to adapt and learn, it has now been thwarted by this disease that started as a few antibodies in my kidneys before multiplying and posting its poison north to slow the function of my grey matter.

Well, that's my excuse anyway and I'm sticking to it.

Saturday, July 10, 2010

Random thought process

Some people walk away clean.

Raoul Moat didn't, but so many do. They make mistakes, they mess up and mess about but it never catches up with them.

These individuals fascinate me. They are the untouchable ones for whom bad news is a story, it is removed from them entirely. It is something that happens to other people.

It must create within them a positivity that is beyond my understanding. To expect the best rather than the worst must ensure you are a better friend, a better partner and a better parent.

I know some who are like this, who have floated through life unhindered by a phone call in the middle of the night that disturbs the narrative of ordinary living with endless days of silence interrupted only by crying. Grown men crying. Or by the bad timing that implicates the innocent in a tragedy or an accident of some sort - unintentional harm caused is no less heavy a burden on the mind. Or by a test that brings news that the body has failed.

They are good people, but they are of course still unhappy with their lot in life to some extent because they are human and it is the nature of blessings that you only pause to identify and count them as they disappear rather than while they are granting you refuge.

I know too the others, the ones who don't walk away clean, who are targeted again and again whenever they dare raise their heads above the parapet. They get the late night calls and they find themselves in the wrong place at the wrong time. They don't expect anything other than the worst and this in itself is a preparation for the next episode of misfortune. There are good moments obviously, but they come to be regarded as preludes and interludes before or between.

There is a wonderful word that they created for these people.


To be indifferent to pleasure or pain, not succumb to the passions or emotions evoked by the good or the bad.

It has to be the ultimate coping mechanism, to find that switch and stop caring.

One would have to wonder whether you'd be better off dead.

Thursday, July 1, 2010

Wakka wakka

Gosh, my last posts have been shockin depressing. Not like me, but optimism and the enduring positivity of thoughts on the bright side aren't impervious to other forces.

Even when you're caught up with an illness, there are the normal battles of a twenty-something-year-old on other fronts. They serve as distractions sometimes, most of the time they just make the war itself more difficult.

But I did have one funny thought in all the recent long days and that was that after over a year of trying to describe the noise Brendan makes, I have finally been granted a useful aid for demonstrative purposes.

The vuvuzela.

That monotone drone? That's what I get from Brendan for eight hours every night. It's interrupted by a bit of banging and hissing about once every hour when it drains my tummy and starts filling me for the next 50-minute cycle. But for the most part, that hum that's reminiscent of a swarm of bees trapped inside a fridge, that irritating buzzing that TV viewers of the World Cup will have endured for the love of the game in the last couple of weeks - that's Brendan.

If I had known this tribal horn was going to be such a feature of South Africa and that the sensitive ears of extremely valuable bodies would be affected, I could have offered Brendan to some of the boys in advance to acclimatise them.

Or suggested we organise a symphony of Brendans...seat them around a small stadium somewhere and invited the players to come and practice in such a setting. Maybe even got Adidas or Pepsi to film one of their ads where players just happen to all walk out of alleyways and start doing their tricks with some street urchins and Oliver types.

Too late for that now, but all is not lost. In recent weeks it was announced that the 2010 World Transplant Games will also take place in South Africa. I'll hopefully have had a successful transplant by then and Brendan will have left me, so returning to that noise will be something of an auditory homecoming.