Friday, April 29, 2011

The climb

It was one anomaly that I felt the need to rectify.

An anomaly that is specific to my place of birth. I have looked upon this mountain all my life, from the first days that I was old enough to observe the world around me from my bedroom window.

Croagh Patrick, that's what they call it. Named after our patron saint, who is said to have climbed it, and spent 40 days and nights at the summit. The nut job.

I have several monkeys on my back these days, lists upon lists in my bedtime head, of things I must accomplish and challenges I must meet. Because, you see, I am aware now of my mortality, and I do not wish to be tortured by any regrets on my death bed.

So the brother and I turned pilgrim on Easter Sunday, and we set off at the pace set by him - the older, the fitter and the healthier of the two of us. It has always been so, on every adventure. He in the lead, me trailing behind.

Going up was tough, but satisfying in that way that a gruelling physical effort can be. The reward came with the view from the top, across Clew Bay on a glorious afternoon.

Coming down was the real challenge. There is the feeling always that if you begin to fall, you won’t be able to stop yourself, and you will roll until something hard breaks your fall and knocks the stuffing out of you.

But then, the idea is that this climb is a penance. It is supposed to punish the spirit in some way, draw out the badness, exorcise the demons that you carry in the form of sins committed, and lies told.

I had 29 years of bad stuff for which I had to repent. Rather efficiently, I sorted the lot of it in the three and a half hours it took to get up and down, and the further two days it took for my legs to stop aching.

There is the satisfaction now that the mountain has been conquered.

I won’t ever climb it again. That was my day. When I get my new kidney, I’ll not be bringing it near any rocks or hard places.

Wednesday, April 20, 2011

Ignorance and Bliss

It is only common decency – and a vague fear of the defamation laws – that has kept me from writing frequent notes and thoughts on my medical people up to this point.

But today, there’s the feeling of a rebellion rising. Indulge me, please.

In all honesty, I have been extremely fortunate when it comes to the doctors and nurses who have dealt with my useless body thus far. I have encountered no attitude problems or snobbery with my consultants; only one junior doctor whose hands began to shake once he picked up a needle; no lack of sympathy when it was needed most; and no lectures on my decision to continue drinking Diet Coke, even though it'll kill me, or whatever.

Most I have encountered have a reasonably pleasant and sunny disposition, despite working for the HSE, and in some cases, not getting paid for their lunch hour (that refers to the dialysis nurses).

There remain however some immovable barriers in my relationship with these people. For all the study they have done, all the theses they have collectively compiled, conferences they have attended, and lively after-dinner discussions with colleagues about the merits and disadvantages of dialysis, there is no escaping one true fact.

They still have no idea how I feel.

Ignorant to all that comes with this sorry mess – the drain pain, that oh so unique sensation that comes with having a machine try to suck every last drop of fluid from your tummy; the exhaustion that descends at around this time every day; the reflective pain in the shoulders after a manual; the nausea that swells inside you some mornings when your last fill goes in for the day, and the fluid settles around your insides, making you feel sea sick while on solid ground.

For the medical people, my story, and the story of every one of their patients is the stuff of academia and records and statistics that aid in the accumulation of research grants.

It’s a strange conversation that goes on in the clinical environment, between the medic and the patient. Both experts in their own way, one through familiarity with the textbook cases, the other through the personal experience of their own broken body.

They know so much, but they fail to understand so often.

Like yesterday, when a kind nurse, in the course of a chat, wrecked the sunniest day of the year so far, by telling me the average wait for a kidney transplant in this country is really now 4 years.

Not two years, as I was told when I was listed in August 2009.

She said there is a debate ongoing in the Irish nephrology network at present, as to whether they should break this news to patients, whether it is better for them to have the hope of a shorter waiting time, or whether giving them a false sense of optimism will just lead to depression when the years drag on and they fail to get that call.

She pondered this, as though forgetting that I was one such patient.

And to be honest, I’d rather not have known.

Monday, April 11, 2011

How to solve a problem like Brendan?

The truth of it comes down to this - I am embarrassed by my illness. I am ashamed of it, and what it means.

Darwin has affected me deeply. Clearly. I regard my useless kidneys as a grand signature of my failure as a human being. The fittest around me are thriving and surviving, and I am a genetically inferior one, not worthy of the human race.

I feel it is a deeply unattractive burden that I now carry, this failure to be healthy, to glow with some radiance of youth and be living recklessly rather than existing cautiously.

It is for all of these reasons that I find it difficult to tell people that I am sick. Because I look relatively normal, and thanks to the advances of cosmetics and almost two years of learning how to cleverly disguise my tummy, I don’t necessarily have to confess anything to anyone.

But then what if there comes along a someone?

My female friends on dialysis share my general reluctance for relationships. It presents too awkward a conversation. It is difficult to plume your feathers and possess the confidence that defines attraction when you are conscious of the disaster zone that occupies your mid-riff.

And yet, and yet, and yet...

The logical ones out there will point to the obvious - that none of us are getting any younger. The medical people tell us we should not put our lives on hold while waiting for transplant. Friends tell us we are wonderful and that we deserve to love and be loved.

Last week, I was faced with all of this in the form of one massive Friday night dilemma. So I minimised. I said “I’m waiting for a transplant, it’s no big deal.” I didn’t mention my dialysis machine, or the fact that I have a tube in my tummy.

If he sticks around, he’ll get to see both. Lucky guy.

Admittedly, for all the worry over the giant elephant on my side of the beer-stained table, there was still the giddy happiness of a first date. Oh, the glorious normality of it all.

Who knows where it will go, and whether it will go.

But I realise there is little hope for any love in my life unless I can find the words to introduce the someone to this complicated world of mine.