Life as an Extreme Sport

blessings and curses

Insider knowledge is a blessing, and a curse. It removes the defensive layer of denial, but it allows you to wrestle more immediately with the issues surrounding the illness. Of course, which half of that is the blessing, and which the curse…

Mom was discharged, after the first round of chemo, earlier this evening. She’s at home, resting upright and comfortably. She’s on an oxygen machine, though, as her saturation levels have been tanking. My father just messaged me – the asthmatic of the family – to let me know that there would be no smoking in the house, due to the suddenly insane amount of raw and bottled oxygen at home. More appropriate to say we won’t be burning candles, or lighting fires!

I spent much of today in a fog; sleep deprevation and stress caught up to me all at once, and I barely managed to get from the guest bedroom* to the couch, and nausea overwhelmed me more than once this afternoon. I’ve had this extreme response when insomnia has taken me several days without sleep, but this is the first time this little sleep has caused such a response – I think it’s the lack of sleep, coupled with the not eating yesterday until very late, and the stress. The utterly obscene stress.

A few years ago – it must have been 2000, since I was still working at Microsoft – my physician took one look at my swollen, distended knee, a problem I had suffered from for years, but had exponentially worsened since moving to Seattle, and sent me to see a couple of specialists, who sent me to more specialists, until I finally received the diagnosis of bone cancer. It took three months of the incompetence of one set of doctors, and 5 minutes with the second opinion (whom I went to, to verify that the swollen, distended, barely functional knee wasn’t all in my head, as the first doctor insisted) to get that diagnosis, and I lived with it for about three weeks before surgery to determine if it was malignant or benign. (It was, thankfully, a benign mass.) Life changed shape a lot in those three weeks. My ex-husband softened his no animals stance and allowed me to buy a ferret, I spent a lot of time thinking about how I wanted to die, and what my religion says about death. I sat at the water, a lot, just watching the waves ebb and flow, and thought about how life is like the tide. I worked a little, I played a lot, and after surgery took to recovery fiercely, and with a determination to not let some of that insight slip away.

I had fear, during this time. This was in my computer industry days, prior to entering the field of bioethics, so although I still had a strong medical background, it wasn’t one where I necessarily felt comfortable taking control of my health and treatment from the doctors, and I was afraid of dying a bad death, full of pain and protracted, pointless treatment. The bad, expensive, heroic-to-a-fault American death. But I didn’t have stress, not even many tears. It was what it was.

This? This is not like that. I am already pulled so thin, and I haven’t even made it home. The stress has me folded up on myself; I start to talk and sentences just trail off. I stand up, but forget why. I lay on the couch, eyes open but oblivious to everything, even myself – I can’t tell you what was going through my mind, because I wasn’t aware of mind, of body, of anything. I simply ceased to be, until called back to myself and awareness.

I’m hoping today was just the effect of shock and exhaustion hitting me at the same time, and I’ll be able to pull my act together, both for getting out of here effectively, but also so I’m not a burden on my family, but the help that they need right now. They need me to be a rock, a support, not another problem. To step up and be the savvy adult.

And I guess I need this to be my rock – academia. The place that I can fall back to, and behind, when I start to get overwhelmed. To practice the distancing, and look critically at my experience and those around me. As a way of coping, and surviving. And I’ll trust that my audience, my friends, will support me in this – and yank me back to the other side, of feeling and emotion and coping with the painful reality of the situation, if I wander too high up these isolating ivory steps.

I’m staying with a friend right now, as there’s no power at my house. Because life hasn’t been complicated enough of late!

Duct Tape and a Prayer

I’ve been sitting here, typing a few letters or words, then deleting them again. Type, delete. Type, delete. Taptaptap. Tap. Select all, delete, write it over again. Write it until you’ve taken the power from the word, and instead of the power being in the name, the power comes from you, your knowing that word, your control of it. Instead of its control of you.

It’s funny. Do you have a little voice in your head? I’d love to know what it sounds like, to you. Mine sounds like me, but it’s me with an edge. It’s the me that comes out when I’m very tired, or exasperated, when I’ve run out of patience. Snarky, sarcastic, cynical – which is enlightening, given that I often refer to it as my detached, academic voice. Mine has been rattling on for the last day, thinking about things like naming and the power of words, and how we imbue such power into a single word, but at the same time, into the knowledge of it. I’ve always loved those stories where the witch loses her power when you learn her true name, because that true name gives you power over her. But how do we reconcile the power of knowing the name, versus the power the word has over you?

Because I’ve come across one of those words, said it over and over, typed it, deleted it, and typed it again. And as I do so, it’s being shaped into something I can control, that I have power over. Something that doesn’t drain my face of its already limited colour, turning me ashen with bright red eyes and tear-stained cheeks. Something that isn’t cancer.


We make cancer pretty, don’t we? We dress it up, glamourize it, tie a ribbon ’round and go. Pretty in pink, rosy and happy. I wonder if we do this to control it, to take the fear away? To make it approachable and understandable, something we can fix and cure, bring about miracles and magic – something that shouldn’t scare you away from sleep like the old monster under the bed.

My mother has cancer. Aggressive, non-small cell lung cancer.

I didn’t fall apart. Not at first. I sucked up and in and sat in the middle of the bookstore I was in, and talked to my father until the phone battery was almost dry. And while I was still in shock, I called my adviser and made the necessary arrangements to take a leave of absence. I got outside, and most of the way to the car, until the tears started. And then I did something I shouldn’t have, and drove home upset and crying – a drive I don’t remember, except for screaming once, loudly, because it was either that or drive the car into something.

But in a way, I have fallen apart. I am barely functional, as evidenced by my losing my wallet today (to top off the lovely day of losing my power and my computer dying a painful, expensive death). I can’t finish sentences, at least not at anything resembling normal speed, I can feel how dull and slow my thought processes are, and I’m moving through a thick, almost gelatanous fluid, instead of air. My perception has shifted, and the way I experience the world is altered.

I know it’s shock, and I know it’s grief. Maddening grief. A fanciful turn of phrase, I always thought – maddening grief. It’s not. I see how easy a slide it would be into madness, and the relief I would find there. Rescue from a world where my mother is so sick.

I wasn’t going to write about this, not at first. It doesn’t belong here, it’s a personal experience, it’s not what people expect, if at this point there are any expectations. But I realized, while talking with GM this morning, that we don’t have the language to express what we’re thinking and feeling when someone tells us that their loved one is very ill. And I’m not sure we have the language to talk about it, either. We certainly don’t have the culture, in either case. And maybe this isn’t a healthy thing. Maybe it’s just another symptom of a sick society, and the cure is to challenge the norm of ‘I’m so sorry” “thank you” and actually move towards something more.

Or maybe it’s just an excuse for me to allow the chattering academic voice in the back of my head to let loose, to detach a bit from the immediate, and to lose myself in things that make me happy, that challenge and excite me. Who knows?

What I do know is that I had to make a choice, in these last 24 hours. I had to decide how I was going to define my interaction with several important people in my life. I could step up to the plate, be more aggressive than I might normally be inclined towards, and be honest – painfully honest – or I could simply walk away. Turn into the ghost I’ve been feeling the threat of becoming.

A bit to my surprise, I didn’t choose to walk as a ghost.

This is one of the hardest things I think I will have ever typed. Unfortunately, I know that one harder comes after this. I just don’t know when. Practically speaking, I return home Saturday, and I will be staying until I don’t need to anymore. Until she is better enough that I can leave, or until I have to write the hardest thing I will have ever written.