Life as an Extreme Sport

Rights and Passage

It seems like it must be a passage of adulthood, a rite that no one wants to pass but everyone eventually does, that one of authors becoming people, people flawed and awful. For some of us, that rite of passage is picking up beloved books of childhood comfort and realizing just how horribly racist they are, and that no amount of the warmth from Polgara’s kitchen can change the fundamental bedrock of racism that forms the faults and seams of the stories.

For others, the stories remain beloved comforts, heavy and warm and rich with the scent of a fresh bound book slowly worn by the repeated readings, the track of the digital scrolling past on a thin electronic tether to the most wonderful libraries. For those people, the rite of passage is different, worse and better, because what changes isn’t the story but the author, who reveals that they weren’t the person who wrote the beauty that comforted, consoled, and inspired you. But in some ways, you’re lucky. The text? It no longer belongs to the author; it’s your love that sustains it, that breathes life into it, that forms the bonds between people with that shared passion and love. You can take it and make it what you want and will; you never have to give the author another cent, never have to support them, never have to acknowledge them, and you can still have the beautiful, inspirational people living within the boundaries of that book binding, digital or otherwise.

You might have to let them go; it might be the only way you can handle the taint of the author, to turn away forever. But it’s a choice. You can keep the characters, and get rid of the author. They began living beyond the author when you began reading, when your mind gave them form. They are embodied by your imagination, your passion, your love.

It’s not just gods that are made real by your belief in them.

A Million and One Little Pieces, Minus the Million

I expected to fly into approximately a million little pieces, give or take, by about 3pm Friday afternoon. In fact, I was so convinced that this was going to happen I began pulling things together to go home, because I am constitutionally incapable of falling apart at work, and I figured the strain of that was going to be more than it was worth (especially given the amount of sick time I still have). It’s not even so much anxiety of what may be, as it is anxiety at whether or not there even is an issue. There’s a bit of a running joke in my life right now that I generally make a decision and then act on it within 24 hours, and if I don’t, things get Not Pretty fast. Right now, I’m stuck in that zone of needing to make decisions but not having enough information to do so, and I anticipated it doing a real number on me, leaving me gnawing on my liver with worry and spinning into tighter and tighter circles of bad thoughts.

To my surprise, that hasn’t been the case.

I think that a large part of the reason I’m not looking for a good chianti to accompany my doom and gloom is because I’ve been learning better coping mechanisms. A few weeks ago I watched someone “crowd source” an emotional/personal problem. This was a cute term for a simple concept: reaching out to friends for support. And frankly, within my life – and experiences over the last half a dozen years – about the last thing I would have ever considered doing, had I not seen how beneficial this crowd sourcing was firsthand.

It would have been very easy to simply sit in the middle of my bed, squeezing a cat or – if they got irritated, a stuffed animal – and rocking, between sleep cycles, but that doesn’t really help anyone, let alone help me. In another of what appears to be a series of hard events, I reached out and said “here’s what’s going on, by the way,…” and received back precisely what I needed: quiet support, from being asked details of everything to come to getting a recommendation for Booker’s and the distraction of getting to the bottom of the bottle, and everything in between.

Bravery and anxiety are two words that have been repeated a lot to me the last few days. I must be so anxious, I am so brave. They’re understandable and kind, and in that order – but not entirely accurate. I am certainly anxious if I focus and dwell, and I suppose I’m brave – at least by the standards of the people who say so, although I certainly don’t see it as such. But mostly, though, I’m surprisingly okay. And I think a lot of this is because I took the time to simply be honest, to not hide behind the social niceties that say we don’t talk about it when we’re maybe sick, waiting on a diagnosis, hanging out in limbo – and especially if it’s a limbo around lady bits because ew, who wants to talk about THAT in polite company?1

And if you can manage, I highly recommend having someone around whose voice alone soothes you, and whose conversation successfully distracts you. I am fortunate enough to have someone in my life who has this, combined with “being there,” down to a science, who can easily shift between talking about fear to discussing effective bioweapons disbursement,2 pop culture and movies, or even traditional religious things like, say, seppuku.

Then again, there’s also the sheer practical: I’ve been getting by on only about 90-120 minutes of sleep for the last three or four weeks; by Saturday evening the pleasures of seeing friends who had already planned on being in town, combined with other stress from my family, knocked me out and I actually got a solid seven hours of sleep.

Tomorrow is a work holiday luncheon; I go straight from there to the ob/gyn. Here’s hoping they can do the biopsy immediately, and that I’ll have results before Christmas – for a lot of reasons, sooner is so much better than later. Not in the least of which is, that while I am not chewing on my liver, my nails are another story entirely.

Novel Therapies Should Be Tortoises, Not Hares

I knew there were going to be a lot of hard things about losing Mom to cancer: holidays and birthdays and events like my sister graduating from medical school. This was almost a given, in those panicked moments after hearing the diagnosis and knowing what it meant, that it was a matter of when and not if. I didn’t realize quite how pervasive it was going to be, though, or that it would create such a strange position to be in every time I read about a new treatment for lung cancer, or I read through for work and see something being tested, or hear about new drug approvals. Each time, I have that brief flash: this existed five years ago. This may have saved Mom.

Early on in treatment, a couple of colleagues pulled me aside and I got one of those lectures. The one that offered whatever help was possible, but – because they were bioethicists – the one that said we should go with established treatment protocols and avoid the clinical trials, especially if it would mean moving Mom out of her home and to somewhere strange. Comfort and palliation were a huge focus, and it’s something I still appreciate, because it did give me a bit of an external rock to lean on when we started getting the “helpful” suggestions. You know, the ones that ranged from legit clinical trials in another state to peach pit essence therapy in Mexico.

And when your mother is dying, you want hope. You will claw desperately for hope, even if it’s in a coffee bean or weed.

So I understand. I understand better than a lot of people when there are complaints about how slowly regulatory agencies move, and that requirements of animal testing slows things down. And I have the education to know that just because a drug works in one animal model doesn’t mean it will be successful in humans. But those regulations are also put in place to protect people, and hearing that researchers in Canada are complaining about stem cell trial regulations does not generate a patient response. In fact, I think my exact words were “you would assume someone who had made it through medical school and become a trial PI would have more patience than a toddler.”

But what really stood out to me was this:

It probably would have delayed the field by another 10 years,said the neurosurgeon. When you think about a condition as serious and life-threatening and damaging as spinal cord injury, is that a reasonable bar, or is that setting the bar at a level that is not appropriate?

Well, personally? I want that bar set high. I want to know that every possible precaution has been taken to make sure that what is being given to the public is safe. Yes, my mother died in part because the bar is set so high on testing novel drug therapies, and she didn’t have access to drugs that are certainly out there and potentially could have saved her life. But I also know that she died from cancer, and not from greed.

And I think that appeal to emotion made by that neurosurgeon is really what irritates me.3 Because that’s getting dangerously close to what the fraud-y stem cell clinics do, and the alternatural therapies – they offer hope and appeal to that emotional “let us skip all the things necessary to prove this is both safe and effective, and instead just jump right to miracles!” When someone advocates stepping outside an established scientific process, it needs to be for a reason that is stronger than “I don’t want to wait.”

I’ve had a shit day.

I could talk in metaphor. I could talk about how I always had a problem navigating cliques, as far back as I can remember. I could talk about my niece having problems that are so painfully familiar, with not knowing how to tell people to go away but wait, no, please come back. Please help. I could talk about misogyny and how it still smacks me hard in the face at unexpected times, at my offense at having my accomplishments written off in such a crude manner. I could talk about a lot of things – about being tired, confused, isolated. I could talk about my surprise at being hurt over things I thought long buried, about hurt as fresh as a bruise. I could talk of shoes and expectations and trust falls and fails, I could have a “whole ‘nother conversation going in another universe” – one where maybe five people would truly be able to follow along.

I could do all that, but ultimately? What would the point be? Strike out, strike blind, maybe score a point simply to have scored it.

It is, at least in one sphere, poor practice. Or maybe I’m just very, very tired. So instead, here, have a song from P!nk’s new album. I like it, and it sums it all up rather nicely for 11:40pm and a bit too much rum.

I think I’ve finally had enough, I think I maybe think too much
I think this might be it for us (blow me one last kiss)
You think I’m just too serious, I think you’re full of shit
My head is spinning so (blow me one last kiss)

Just when I think it can’t get worse, I had a shit day
You had a shit day, we’ve had a shit day
I think that life’s too short for this, I’ll pack my ignorance and bliss
I think I’ve had enough of this. Blow me on last kiss.

these things go through your head

When I was little, my mother would buy the peanut butter that had separated in the jar. When we got home from the store, there was always the ritual of dumping the peanut butter into a bowl, stirring everything up, and then placing it back into the jar.

I never had to do this; Mom always did. It was sticky and messy and lunch for all of us, so leaving it in the hands of an impatient child probably would have been a bad idea.

Even though I never had to do this, I always hated it. It was so pointless, I though. Why spend the time and the mess and the energy when you could just spend a little more for the stuff that was already mixed? That was faster! It was cleaner! Therefore, it must be better.

Mom would just shrug and say that this was the way her mother did it, and this was the way she did it, and maybe some day I would understand. I was a child, so of course I knew that I would never understand, and fastercleaner would always be better.

It’s nearly 4am, and these are the things that go through your head when you’re standing in a bathrobe in the kitchen, mixing a new jar of peanut butter.