Brave.

While I’ve tried to keep my posts here more general and less personal, tonight I’m going to make an exception. Although what I am about to write is specific to me, right here, right now, I decided to post it here rather than on my personal blog because I’ve got a feeling that some of what I have to say may resonate with others who have or have had PA.

A few weeks ago, a friend’s ex-husband killed himself. When my friend was telling me about this, somehow her words segued into talking about me and my illness and how she thought I was so very brave to have remained so stoic throughout it all, and that most people couldn’t be that brave, certainly she couldn’t. Frankly, I’ve felt like an impostor ever since.

There are days – today has been one of them – when I am anything but brave, anything but stoic. I am, however, honest to a fault, and I will look the beast that is tormenting me right in the eye and acknowledge that it sucks: it sucks that I spent a full one-third of my life sick with an undiagnosed illness. It sucks that I can’t see worth a damn at night yet I continue to drive because the law says that I can. It sucks that I have a weird tumor in my liver that I am not quite convinced isn’t the source of the other health issues I have, even though my medical team insists that it’s nothing to worry about. (Remember, my last medical team insisted that I didn’t have PA when I knew full well that I did.) And I know that despite all of the above, it could still suck so much worse. So if acknowledging that it could be worse and getting on with my life is bravery, then, maybe. But I’m doubtful.

I was sick – really, really sick – for a full 15 years of my life that I know of, probably longer. My first PA-related visit to the ER occurred three months after my 30th birthday; my actual diagnosis of the disease did not occur until I was midway though my 45th year. If you think about it, those are the years during which most of my peers did the things that really mattered: find partners, have families, travel, attend grad school, build careers. While much of that has never been of much importance to me – I’ve known since I was a small child that I had no business passing my genes on to another generation, so the partner/family/kids thing was out – I did spend 10 of those 15 years in a very, very unhappy relationship, and I did go to grad school, but I did both of these for all of the wrong reasons.

I’m not going to delve too deeply into the partner thing other than to say that even though the choice to end it was mine, I came out of that relationship feeling like a real loser for being unable to make it work. Half a year later when I was diagnosed with PA, it all became clear to me that I wasn’t a loser and there was a very real reason why I couldn’t make it work, and I was fine with all of that and got on with my life. Well, got on with the business of getting tested and operated on and so forth. But now that all of that is behind me, I’m sort of mourning the loss of those ten years, not only to an illness but because of how different things may have turned out had I had the strength to walk away sooner rather than later.

As for grad school – I always knew I’d go to grad school, and knew it would either be for library science or for history. I chose the former because it seemed more practical. Um… it wasn’t. I hated every minute of it and now that it’s over and done I’m pretty certain that I will never actually use my library science degree to work in a library, my student loans will follow me for the rest of my life (and well into the afterlife). While it wasn’t an entire waste of time – part of why I have a reasonably steady job now is the degree, even though it’s by no means necessary to have one in order to do what I do – in retrospect, I can only wonder WHAT WAS I THINKING?!

And that – what was I thinking? – is precisely the point of why I am posting this at all. Nearly two years to the day since my PA surgery, I know full well that ever since the moment I came out of anesthesia, my brain works in a very different way than it did while I had the tumor. And some days – again, today is one of them – I can’t help but wonder what choices I would have made had my brain been working at its full capacity, rather than in a PA-addled fog of inertia.

So there you have it. Going through an illness, getting tested, having surgery – all of that is a walk in the park compared to what I’ll refer to as real life. What requires bravery is facing the latter, full-on, eyes wide open, making well-informed choices and seeing them through. And while I’m capable of this now, what is bothering me right now are the 15 years of my life during which I wasn’t – while I was sick, nearly every decision I made was at the time the safe choice rather than the right choice.

There certainly was no bravery involved.