On surviving

This time last year I was, potentially, dying. (Spoiler: I didn’t!)

All of us who are alive are always potentially dying, of course, which is why hypochondria and seatbelts exist. But when you’re really sick, your narrative shifts. You’re either in a story about how you lived, or you’re in one about how you died, and for the majority of the pages you won’t know which kind of story it is.

This is a story about how I did not die, yet.

There’s an accepted communal narrative about how one should behave when one is potentially dying, especially if you’re young for it. You should be strong and cheerful, and the people around you will be appropriately inspired. You should still be sad and vulnerable sometimes, though, because you aren’t a sociopath, or if you are you should try to keep hiding it. You should talk about how you’re fighting, how you’re not going to give up, how you will be a survivor.

One of the things I learned about cancer, in that first week after I knew I had it, was that nowadays you get to be a cancer survivor whether you actually end up dying or not. The social programs you can participate in are called survivor services; your clinic and treatment information is packaged as a survivor care plan; the tips you get for handling your life during chemo are survivorship skills.

I’m the kind of smartass who generally distrusts anything with a slogan, but I actually liked being indoctrinated as a survivor. It made me feel less like I was embarking on some hellish competition with my fellow patients, in which we would either claim the title or get labelled as runners up if we, y’know, kicked it.

But let me admit something I didn’t really say while I was sick: I’m not a fighter. I didn’t fight my cancer. I didn’t always think I was going to survive. The thing I was actually always thinking was that odds were decent I wouldn’t.

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Inside the awkward pause

Lately I have been thinking a lot about the difference between space and emptiness. When it comes to our lives, one condition is supposed to be freeing, the other scary and sad. We’re told space and freedom will come when we get clear on what we want, when we prioritize and commit to doing fewer things with more purpose. I’m finding, though, that once you begin to simplify your life, the growing pains don’t always feel like freedom.

Over the last year or so, I’ve spent a lot of effort in clearing away, in discarding what I’d come to see as unhelpful baggage. The primary change has been how I approach work, of the day job variety. I’m one of those types who is perpetually unhappy with a standard 9 – 5, especially if it involves a desk; I was also under the misguided but not uncommon impression that the way I make my money has to justify my existence.

Breaking that belief took me a decade, but I finally did it. I started a business that’s decidedly unromantic (I’m a housekeeper), but it supports me, and it gives me space.

The mental room where I used to nurse my stress and, honestly, my angst about work has been cleared out for other things, primarily for writing. I had thought it would be an unambiguous relief. But my hard-won breathing space has started to feel like something else – emptiness. And now illness has cracked that space even wider.

My fear is that I am essentially an emperor without clothes, that there’s nothing to me underneath the mental and emotional bracken I was so eager to prune away. The fear comes when I sit down with an empty page or computer screen. It comes when I see friends and have no office problems to hash out, no anecdotes about coworkers or clients. After all, it really wouldn’t be fair, or interesting, for me to gossip about the state of my clients’ bathrooms. And chemo is a bad conversation-starter.

It feels a bit like being inside a never-ending awkward pause: eyebrows raised, precarious smile, ‘Soooo…?’ What now? The space opens, and there I am, worried that the naked truth is I’ve got nothing good to say.

But maybe this state of things is only to be expected at first. You empty a room of its clutter, and for a while it’s defined by what’s lacking – the gaping shelves, the dark spots on the wall where old pictures and stuffed notice boards and clouded mirrors used to hang. So you clean and put up a fresh layer of paint, and you stand back. Then, slowly, you start to see the potential.

Maybe I just have to resist the urge to drag a bunch of new clutter in, and settle into the emptiness for a while. Even if it’s not comfortable.

Perhaps that’s the only way to allow what’s important to seep in and claim the space.


Principles of uncertainty

At the time of my third chemo dose, I still had an easily identifiable lump: two conjoined lobes, fitting neatly under my index and middle fingers. Two peas in a little mutant pod. Since I started treatment, they’d gotten shallower, maybe. I didn’t feel the lump every day, because that way lies Panic, and the thing permanently at the top of my to-do list is ‘don’t feed the Panic.’ But I’d check my lump, and worry a little that it hadn’t shrunk more, and then I’d do my best to think of something else.

In the two weeks after my third dose, the lump has melted. That’s what it felt like. It seemed a little soft, and then one morning most of it was gone. Now it’s hard for me to find the exact spot at all.

This is an excellent thing, I’m assuming. But I actually felt worse the week the lump went away. Before, I could touch the cancer. I could say to myself, ‘here it is.’ An enclosed thing, a specific point of danger. Now I can’t point to where it is anymore. It could be anywhere. I keep touching the spot where it used to certainly be, but there’s no information to detect there.

All I know is that things are still changing. This is always the only hard truth, no matter what is happening to us and how we’re dealing with it. To be alive is to live with uncertainty, with the prospect of nebulous yet inevitable change.

That constant unknown is the closet under the stairs where anxiety grows itself, munching on spiders and old shoelaces and all the unwanted crap we shove down there into the black. When you live with a brain that’s trained itself for fear, it can feel like that’s all darkness is – a bottomless space of night terrors, of monsters cobbled out of our weaknesses and mistakes, the junk we want to throw away.

But darkness, that which is there but has no shape, is also the hideaway of hope. It’s where our dreams come from, our imagination. Certainty is a temporary comfort, but in the long run, it’s stagnation. Darkness gives us the freedom to create, to invent what we wish for. It gives us the freedom to keep moving. In darkness, we know that things can and do and will change.

It won’t be like this forever, we think, and we feel afraid because we know it’s true.

It won’t be like this forever, we say, and we know it means we’re alive, and that we’re not finished yet.