A week or so ago, while driving to the doctor, it occurred to me that that I had lived with Hep C longer than I had lived without it. I don’t know exactly when I contracted the virus – during the early Eighties it was just common courtesy to share needles – but, as I’ve said previously, it’s been upwards of thirty years.
If my bloods were clear, it would be the end of my longest, most intimate and (possibly) most dysfunctional relationship. If I treated it right, a cure could be something of a born again experience.
It seems weird, I know, but the prospect is a little scary. There would be change, certainly, there was already, and change always has some element of fear. But it can also very very exciting.
Faced with the absence of my vicious but so familiar parasite. (This is sounding more and more like a domestic violence scenario) it fell into stark relief how much my life had been defined by Hep C.
Not publicly so much, but within myself, I never forget that I’m infected – that billions (approx 75 billion – I did the math) of tiny spherical aliens are making hay in my liver without cease, every minute of the day.
When I intersect with other people, particularly those I live with, I have to be aware of curbing my blood – on razors, toothbrushes and, in earlier days, fits. The endlessly annoying assumption that the virus can be transmitted sexually remains so prevalent that I feel guilty not telling a partner that I that I harbour it, despite transmission being as likely as the ceiling falling on our heads in the thick of things. (less likely, technically, as ceilings are actually known to fall on lovers in flagrante delicto – think Pompeii CE 79 – while, to my knowledge, no one has yet been found who has definitely contracted the virus sexually.) Its an uncomfortable thing to pointlessly admit in such a circumstance.
Then there is the stigma. If you have Hep C in Melbourne, Australia, it waves a red flag, proclaiming that you were, or are, an intravenous drug user. You don’t want just anyone knowing that. Particularly if you’re raising a daughter by yourself in Mt Waverley and dealing with any number of ordinary families, who may have already been set askance by your bohemian lifestyle and admittedly peculiar ways. In defence of these ordinary families, I can’t recall a single instance of prejudice. If I ever trusted them enough to spill the beans, they tended to be supportive rather than judgemental. (Of course, there were those gaggles of sour-faced mothers in the yard at 3.30pm, but I’m pretty sure every parent encounters them.)
It’s the thing about stigma though – the phenomenon breeds in your head. It always feels bigger in there than on the outside. Others may not be aware, but I am aware. I feel like I’m holding a deadly secret, that I’m some kind of infiltrator in their midst, that a few misplaced words could spread like wildfire, bringing down scorn not only on me but on my daughter as well.
I pass among you, an infectious agent, unknown and feared. Trust me, Hep C has had a huge defining influence on my life.
Then there is my own fear. Of slow death. The relative certainty that if I do not defeat the disease, I will die before my time. By cancer. By cirrhosis. By slow creeping depression, at war with a sense of my own stupidity at finding myself in this situation.
I envy those to who it seems nothing. Who continue as always. Those who care so little they do not even bother to have a test. Their existence makes me feel even worse, because I wonder at times if, in the end, I’m just being a paranoid cry-baby, filling my cupboards with milk thistle, schisandra, licorice and dandelion, lying in bed all day complaining I don’t have the energy to do anything else, contemplating suicide, pestering doctors for the latest treatments …
Of course, I’ve done mental work-arounds on all of this to help me stay sane, to help me at least keep operating – even at a vastly reduced capacity. It’s what one does. But what if it was to end? What would I do with the cathedral of coping strategies I’ve built over those thirty years. Might they re-manifest in weird behaviours? Bizarre emotional outbreaks? The brain is, after all, a strange and undiscovered country …
As it is, the day has yet to come. My PCR test still registered a presence of the virus at two weeks. To be expected, I know, at so early a stage, but I had been hoping. The interesting figure, however, was my ALT (the basic indicator of liver inflammation). It was 16. The normal range is 20-40.
Now I’ve never been one of those people who walk around with ALTs in the mid hundreds and beyond, but they’ve always been elevated and, as I age, have grown steadily higher. However, I’ve always had an eye-wateringly massive viral load – in the tens of millions per millilitre – but its presence, to at least one doctor’s consternation, appears to have less of an inflaming effect on my liver. (‘They’re just sitting there,’ I remember him saying.)
The only other time I’ve had such a minuscule ALT was during my last treatment, just before it started going backwards. At that stage, my viral load had dropped from 15 million to 200, so, as you see, an ALT of 16 is very interesting indeed.
The Golden Phaeton.