This article first appeared on PositiveLite.com, Canada's Online HIV Magazine, on Jan. 6, 2014.
I've never really been a high-maintenance patient myself. Only the odd hospital stay here and there, the odd bouts of depression and anxiety which have largely dissipated as the years dragged on since my diagnosis in 1993. I've put on a brave face since day one. No practical things I couldn't do myself either -- although that's not to say I haven't played the patient card on occasion. No more cleaning of fish tanks for me, no dealing with kitty litter, for instance but that was more because I disliked doing these chores rather than any perceived health hazard, but better to be safe than sorry, right? *wink wink*
During this time, though, I've had one fear I've seldom voiced: as HIV itself becomes a manageable condition and one that with a bit of luck won't intrude much on life expectancy, how would I cope with another condition, another health issue on top of HIV? Now that shouldn't be hugely threatening -- many people deal with this daily -- but to me it has always seemed a disturbing prospect. How could I cope with a cancer diagnosis for instance? Cope well? I somehow doubt it.
So when the cancer diagnosis befell not me but my otherwise healthy partner, he who has shared my bed for nigh on thirty-three years, it was a bit more than the usual blow. Not that the prognosis was necessarily grim -- prostate cancer after all is more often than not eminently treatable -- but I've felt uncomfortable about issues involving mortality (mine and his) for decades.
More practically speaking, I've never really played the part of a caregiver, quite the reverse in fact. Because there is no denying that however non-invasive a condition HIV can be in 2014, it alters the dynamics of relationships to no end. It's inevitable that in a serodiscordant relationship one partner is the healthy capable one, the other somehow feeling damaged and needing care, even if that care is slight.
This all changed with my partner's recent operation to have his prostate removed. It has been a sobering experience.
The operation which happened just before Christmas was the culmination of a months-long series of doctor's visits, test and procedures which my partner -- skilled at coping with almost anything that life throws at him -- sailed through as if they were all just a minor inconvenience. But as the days to the operation shortened it became increasingly clear that the surgery would be fairly invasive, that there would be a longish period of recovery and that he would need help. Driving and lifting would all be out of the question for weeks, and there was talk of bed rest, catheters and other yucky medical stuff I won't go into here.
The day of the operation was a sobering experience. My partner was less calm than usual (I would have been terrified) and the wait while they get you ready to be finally wheeled into the operating room was pretty excruciating for both of us. I cried quietly when he disappeared through those green doors, already primed with tubes and godknowswhat sticking out of his arms. He looked more helpless than I'd ever seen him before.
Six hours later when I finally saw him after surgery he looked more helpless still.
He was barely awake and not very communicative, still recovering from the anaesthetic after an almost three hour operation. His doctor told me that it was likely the operation was successful, although tests would truly determine if all the cancer had been got at. But to be honest, what struck me most about the moment was that a healthy looking, confident, over-achieving man had in a matter of hours been transformed to the ultimate in vulnerability -- a pale, near lifeless form curled in a fetal position, connected to oxygen and a battery of machines draining, pumping and monitoring who knows what. Helpless. I felt helpless too.
And so began his convalescence. He's home now and doing quite well but I am firmly in the caregiver's seat -- preparing his meals, doing those chores he would normally do, driving him around and just being supportive and there for him in his weakened condition. He's still pale and tires easily, but he gets stronger every day, eats more every day and if his colour hasn't returned yet, I'm sure it will soon.
Why I didn't entertain the prospect that this might happen I don't know. He's a year older than me after all and it's becoming abundantly clear to both of us that aging is no bowl of cherries, HIV or no HIV.
What does it feel like to be a caregiver, something I thought I'd never be? Tiring for one, but unexpectedly satisfying. I actually like looking after him, which blunts the pain of what might otherwise be a stressful situation. And he is incredibly grateful and acknowledging of what I do. I like that. We are closer for it.
I like less that it has brought mortality issues to the fore -- for both of us -- and also to some extent the nature of my own condition. I've coped well with HIV, but could I cope additionally with what he's just gone through? I wish I could say yes.
But isn't this a question that many of us HIVers will face? Originally it was all about us, and that was kind of comfortable while it lasted. But it may not be anymore. Sooner or later we'll likely be faced with caring for our partners, our relatives, our parents, our friends. That's something that many long-term survivors who lost a partner in the early days of the epidemic know all about, but I and many like me don't. I don't find it a comfortable prospect at all.
Of course our AIDS Service Organizations, most of whom have become increasingly out of touch with almost everything relevant to people living with HIV, are ignoring the prospect of people with HIV increasingly becoming caregivers themselves. ASOs, never the most farsighted of entities, badly need to reconnect with the real needs, emotional and physical of those living with HIV who are not ill themselves but caring for the ill.
In the meantime we cope. For some being a caregiver will add meaning to life, along with the chores and the yuckiness. I think it has added richness to mine, albeit a richness I would rather do without. But my partner is getting better and that's a good feeling. Of course who eventually becomes the other's caregiver is still up for grabs! But I'm practiced in the art of ignoring what I dislike thinking about and that failing will serve me well in this instance, I think.
Life goes on and so does mine. And thankfully so does that of my partner.
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Read Bob's blog, Northern Lights.