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.