Betrayed by this country

Please read this article and await my wrath:

I cannot believe this.

No. It's truer to say I wish I didn't know this.

Of all the fucking irresponsible behaviours of the HSE. In the past, they have displayed gross incompetence, but this? This is just carelessness, this says they just can't be bothered.

Making an effort to procure organs should be a requirement of their work. When somebody collides with their fate in tragic circumstances and is brought to hospital; once the medics have fought like hell to save their lives, once death is declared, for those doctors and nurses the next thought should be contacting a transplant coordinator.

Somebody needs to have that conversation with a bereaved family, to find them in their darkest hour, and in the most gentle and hushed tones try to show them this little light that is embodied in me and hundreds like me.

To explain to them that there are hundreds of people waiting for a special call, and that through this devastating upheaval in their family, they today find themselves with the power to save a number of lives.

I maintain enough faith in humanity to believe that the reaction from a good percentage of those bereaved would be positive, that they would see an opportunity to salvage some good from this tragedy.

The figures makes me feel stupid. Here we all are, going around trying to encourage people to carry organ donor cards. Ha. Why should we bother? It's a waste of an effort, a waste of precious energy that I don't have in good supply.

Evidently there is no interest in the hospitals in helping us out. We can create all the awareness in the world, but we can't start chasing ambulances.

It sickens me to think of all the organs that have gone. Think of it like this, reader - think if you were stranded in a desert and all the water bottles had been buried on you. Think if you were in desperate need of food and all around you they were setting fire to hamburgers.

If I feel a desperation over it, how must the others feel? Those who are waiting for hearts or lungs or livers, who have an end date that beckons to them, without a treatment like dialysis to sustain their sick bodies. For them, this recklessness is the worst kind of betrayal.

Are our lives worth so little? I am 28 years old. I am educated and I want to be something, to contribute something, but my society has evidently decided I am not worth the bother.

When I was listed for transplant in August 2009, they told me I would probably wait two years for a kidney. Suddenly that seems so optimistic.

Fuck this.

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.