An extract from Slender Threads, on March 15th, 2008:
The status of my patienthood was soon to become clear. But not before I had waited for another hour or two. So I waited.
It’s odd how waiting rooms are so monumentally unfit for purpose. Either that or those occupying them are monumentally unfit for the task at hand. It’s easier to wait in the machine, to be honest. More relaxing, too. I suppose this is because there’s consistency enough for the brain to switch off, and too much stimulation to get bored. After what seemed like some time, yet another consultant trooped in and led me away. This time, it was for ‘the talk’. This was the part of the day that would define my future. From this moment on … well, some upcoming moment, anyway.
It may be pertinent to consider the gravity of the situation here. I don’t mean in terms of illness, because if anything, the moment of official diagnosis marks a point of improving health, as from then on we, the patient, can be given drugs and therapies, put on programmes, enrolled in support groups. The illness, the dysfunction, the physiological cock-up, these will continue in their own sweet, oblivious manner, without giving even the tiniest of tosses about l’il ole us. But diagnosis has a whole host of implications, carries with it a great truckload of neuroses, is accompanied by great swathes of symptoms. In short, diagnosis means that we can be put in a very specific box. The box marked thus:
Nowhere to put the waiting room? No worries, we’ll just stick it in a ward. Simple. Short on consultation rooms? No problem. We’ll just borrow this patient’s room while he/she is off having lord knows what done to him/her.
It’s a very strange feeling sitting in a long-term patient’s room. The walls are covered in posters, charts, action plans, photographs, as if their memory is the thing that’s broken so they have to pin it up. Of course, this may well be the case. You feel as if you’re trespassing inside someone else’s life, and this, of course, is because you are. When you’re expecting the worst, the last thing you want to do is feel like you’re intruding on someone else’s illness.
My consultant is young, and British Asian. These facts are entirely irrelevant, but they are facts. She begins to talk about the scans, explaining that nothing abnormal is showing up, and there’s nothing going on in the various blood tests. The genetic tests are yet to return, because they often take in excess of three months (I think in my case it was over 30), and while I forget the exact phrase she used, it was something along the lines of ‘for us, no news is bad news’. That is, the original diagnosis has yet to be contradicted, nullified, by a slew of ‘other factors’.
This part of proceedings is very stressful. I try, but I find it hard to hold on to, process, and listen to everything she has to say. And it’s not just me who’s finding things stressful, as she, too, seems a little nervous. This doesn’t much surprise me, but I’m not sympathetic, even though I really ought to be. She begins to run through the various treatments in use, describing the ways in which the dopamine deficiency might be tackled. She suggests that we start off on a low dose of a dopamine agonist, that is, a drug that aims to give those naughty basal ganglia a kick in the pants, and convince the ones still alive to up their game in the dopamine production stakes. We’re going to start with a low dose of pramipexole, branded as Mirapexin, which should begin to bring my recalcitrant left hand back into the game.
‘Hang on …’ I interrupt her mid-flow, ‘are you telling me I’ve definitely got Parkinson’s?’
‘Oh’, she replies, ‘didn’t I say that?’
She looked a little stunned, and not a little embarrassed. Now, I know that the answer’s yes, but … well, diagnosis is not complete without those words being heard, is it?
‘No’, I say.
There is a short silence, before she simply states that yes, I do have PD.
These few words change everything.
I am now a PWP (though I didn’t learn this abbreviation for another three years). I am now a patient. I am now no longer simply me. I am one of few, a select group to which no-one wishes to belong.
I am now a patient.
Perhaps asking that question was a strategy on my part. A strategy to force me to confront the illness, and one that forced her to be the most uncomfortable person in the room. On the other hand, I may merely have wanted to know what I already knew, to hear someone else say the words.
The rest of the session flies by in a blur. I ask the usual questions. What’s the prognosis? What next? What should I do? The answer to them all is a simple ‘don’t know’. Parkinson’s is a funny disease. Its diagnosis is clinical (as I mentioned, a matter of elimination of other possible sympomatic causes) and while it’s progressive and degenerative, within the general downward trend you can go up and down like a yo-yo.
‘Would you mind if some students came in to prod you around a bit?’ she asks.
My day can’t get any more surreal, can it? I agree. Plus I am well aware that without patients allowing students to prod and poke them, the students won’t turn into doctors who know what’s what.
Well. Luckily, I was right. But the five medics on a neurology course can barely hide their embarrassment when confronted by a fit, young, articulate individual whose brain just happens to be gently misfiring. I run through the whole story as they try to work out what’s wrong, how they would find out, and what tests they might order. To me it’s now mundane. The balance of power swings once more.
After several hours I escape clutching a small bag of drugs and get back into my car and drive home. Radio 4 is on, as ever. They advertise a Panorama special, on the hidden side-effects of some drug therapies that, they say, have ruined lives. My life has just changed irrevocably thanks to the labelling of a set of symptoms as caused by something that, if not treatable, is at least open to some measure of symptomatic relief. The last thing I want to hear is that the exact drugs sitting on the passenger seat next to me, shuffling slightly in their white paper bag like so many mice could cause, among other things, compulsive gambling.
Now, you would have thought that was that, but no. There’s more, there’s always more. With progressive conditions, diagnosis is progressive, too. Quiet time becomes a time to diagnose new symptoms, new indications. New things are immediately smothered with suspicion.
I have yet to gamble away my house.
With a woeful ballad – on telling people
And as if all of that wasn’t enough, as if you weren’t simply overwhelmed with the enormity of it all, as if you weren’t struggling to make sense of this, this thing, this label you woke up to on your bedside table, there’s everybody else. The straightforward if mildly circumlocutory manner in which my various consultants chose to make me aware of my new status as patient began to make a little more sense. It’s as if, once diagnosis was confirmed, patient and doctor now began to workshop the dissemination of this information. So, small rather confused person. How does this make you feel? Well, just remember that you can’t walk away.
No-one really runs workshops explaining how to tell people you’ve become a patient, that your world now revolves around the failure of an obscure group of cells in your head to bloody well get on with it, to stop being such divas and bloody well make some more dopamine. Throughout the whole process of diagnosis there’s an expectation of some sort of closure. The cause of the strangenesses will be discovered and, well, that will be that. Medicine will be provided, and we can all get back to beetroot farming or whatever it is we do. Safe in the knowledge. The knowledge safe with us.
But there are three words that mean this simply won’t wash. Progressive. Degenerative. Incurable. They change the game. Life will never be the same, and yet … and yet you can lay money on the fact that no-one will know that you are having real problems, let alone that you are seeking answers.