FOUR – fucked up

“The human problem: having a mind, being a body, is nowhere so painfully and clearly apparent as in medicine” – Bert Kaizer

Adversity is a lonely place. I had arrived at St George’s in a wheelchair which frankly I didn’t need. I could probably have bunny-jumped from East Surrey to Tooting but the medical profession being what it is, patients were patients and were to be seen and not heard. My insistence that I could walk the length of a couple of corridors was met with the usual no-nonsense we are the medical professionals bullshit. Incidentally, this is totally at odds with the treatment you get when the pressure is on or no-one is looking. I recall one particular time when I was receiving one-to-one care in the Intensive Treatment Unit (ITU) following a serious operation. It was about 4 am and the nurse in charge of my care was due to go on her ‘break’. She explained that another nurse would cover for her for twenty minutes or so and if I needed anything I should press the buzzer. Ten minutes passed and, of course, I needed a ‘bottle’ (euphemisms abound – it’s nothing like a bottle – piece of old cardboard). I pressed the buzzer. Nothing. I pressed it again. Nothing. I pressed it again. Nothing. And so on. Over five minutes before some random guy turned up asking me if it was me pressing the buzzer. Oh yeah, well that’ll explain why the light’s on. Nurse turned up at that moment and scuttled off for said ‘bottle’. I held on, and all was well that ended well. But what if I had needed something a little more serious than a ‘bottle’, my point being that it is a question of the sublime versus the ridiculous where there is nothing sublime about the sublime. I hadn’t realised that in National Health Service maths there are times, when it suits them, that one plus one may equal one (or anything else for that matter – the only truth is their truth). The mystery of the NHS budget may at last finally be solved. Hurrah! As an addendum to this little story I should add that the dedicated nurse I had was outstanding and looked after me as if I were her own. I don’t know what she is paid but it isn’t enough. I certainly don’t begrudge her a break and my only point is that the system is f-f-f-f-fucked up.

Note – when I re-read that first paragraph I think how ungracious it makes me sound. Temptation is to be all nicey nicey but as I told you at the outset, this is warts and all so I’ve left it as it is.

Anyway, back to my arrival at Harris ward. Upon entry I felt lost in a cacophony of busy-ness that filled the ward so that it positively bulged, window panes bending as if the pressure of it all was just too much. Everyone, it appeared had something to do (and made a hell of a lot of noise doing it) but in terms of the comunication of information it may as well have been silence. The wheelchair was the ultimate debilitation. I felt like I had done at the start of second term at boarding school, powerless and abandoned. There seemed no good thing in sight. I was thirty-two and I almost cried. As an aside, in case you’re wondering what happened to term number one, first terms are always different because what you don’t know can’t fuck you up. When you know, then you’re fucked. Hail well met, term number two.

Medical wheels grind exceedingly slow and my time was no exception. Doctor comes round. He tells you that that you’re going to have a test. What he doesn’t tell you is that said test could be any time except soon. You lie on your bed waiting, endlessly waiting for the kitchen staff to dish up. (Sorry, bit of confusion there, old age, you know).

Eventually the tests arrive. At which point I should add, beware what you wish for.

They start you slow. A simple blood test, a cardiac catheter, ultra-sound, an exercise test and so on. And then one day, someone turns up with a booklet. Believe me, this is a bad sign, a bad bad sign. I didn’t realise it at the time but I have learnt through hard experience to beware of medical booklets. Run like fuck when someone appears at your bedside clutching the like. It means they are really going to fuck you up. Pick up your pallet and get the fuck out of there.

Electro-physiological Studies, I was told. Mmmm, doesn’t sound too bad. Read the booklet, it’s relatively straightforward, any questions, please ask.

Bear in mind that this was 1991 and the procedure known as electro-physiological studies was not then what it is now. Actually, I don’t know what it is now except that I believe Doctor Frank N. Stein has since retired and lightning rods are no longer required equipment. And so I lay on a slab whilst the said doctor performed the said studies from behind a phalanx of instruments whilst constantly fiddling with knobs and flicking switches (sounds like puberty).

Little did I know what was in store.

A word of explanation because no doubt Electro-physiological studies means buggar all to most of you. Essentially they fiddle around generating electrical beats in your heart trying to fuck it up. Depending upon exactly what abnormalities they can successfully instigate, they can deduce whether your heart has an abnormality that may leave you vulnerable to sudden cardiac death, referred to at the time as Sudden Adult Death Syndrome. Bit of a stupid name, I thought but I guess it did the job.

Unfortunately, I was a natural. It turns out that though you couldn’t see it, my heart was really screwed. Time after time, they successfully induced cardiac arrest. God, it was so like the story of Frankenstein and his monster that it regularly gave me the night sweats. How many times did they fuck that guy up? If this seems like an over-reaction I would ask you to consider the matter in hand. You’re lying on a slab, your heart’s perfectly normal, suddenly you start feeling additional beats in your heart, slowly at first but gradually faster and faster until eventually Michael Jackson on speed appears, (Bubbles has stayed at home). A consciousness obscenity and screaming that you can blame it on the boogie, he gyrates ever faster. It is the last thing you see and hear before you arrest. You are vaguely aware of the nurse stuffing something in your arm and then, thank God, you lose consciousness.

You wake up and they tell you they’re doing it again tomorrow.

Eventually, they stopped and drew breath. Conclusions? We’re not sure. You’re not sure! You’re not fucking sure, what the hell does that mean? Turns out they were sure I was fucked up but they were not quite sure exactly how. My heart looked normal but didn’t act normal under Electro-physiological Studies.

There was no cure.

By this stage I felt completely lost. As Claudio said in Measure for Measure the miserable have no other medicine but only hope. Except that even hope had deserted me. Only one thing left. Time for another booklet. And sure enough here it is. An implanted cardioverter defibrillator. What the fuck is that? Turns out it’s your very own set of paddles designed to deliver an electric shock should you ever need one. I wonder how I would have felt if I’d known the sort of relationship I was to have with this strange machine over the next twenty-five years. As it was, I just couldn’t take it in. They wanted to put a device in my abdomen that was essentially a massive battery together with what passed for a hard drive in those days, a device that could electrocute me at any time. You just can’t take it in. It’s bizarre.

And so, Christmas 1991 approached. A representative from my employer had come in and told me that if I could get back to work by 13th January they would let me keep my job. Fucking brilliant, I thought. Fuck, fuck, fuck, fuck, fuck. But in truth, it was just bad luck. True to form, I had chosen to have my first cardiac arrest one week after starting a new job. Consequently, I was still in the three month probation period. Further, I wouldn’t qualify for the health insurance benefit. Double fucking brilliant! Meanwhile, they refused to let Sandra drive my company car. Triple fucking brilliant! Employer of the year, Hunting Plc.

I determined that I would make the date. Given what I felt was an unreasonable deadline, I resolved that upon my return I wouldn’t tell them that I was on medication or that in March 1992 I was scheduled to have a cardiac defibrillator implanted in my abdomen. As far as I was concerned, I had already leaned that I couldn’t trust them. By the time they found out the truth, the three months probation period would be over.

In hindsight, they were probably acting quite reasonably. In reality, I was lucky to keep the job. Took me years to get to that page.

Read on……..