Life as an Extreme Sport

Bioethicists, ASBH2020, and a Lack of…Well, Ethics

As some people are aware, I have been off the internet since the end of September, when a novel health issue required I begin a (relatively long) diagnosis process. Part of that diagnosis process is minimizing stress; I was ordered to stop work almost immediately, told I couldn’t expand my physical therapy past what I was doing, and had it strongly suggested I stay off social media. A “limited stress diet,” as one of my physicians put it.

Acrylic painting of blue and pink trees reflected in water.
I’m learning acrylic painting, in addition to watercolor and inks. This is my third piece.
I’ve gone through a bunch of tests, and am in the “do they need more tests?” wait and see portion of the diagnostic process, which has also brought with it a new and exciting medicine regimen. All of this should be familiar to anyone who has endured diagnosis by exclusion–or trial and error.

So all said, I shouldn’t be writing this. It is, after all, the internet. But I’m hoping the lack of interaction with others makes this more like YouTube, which is “okay,” and less like Twitter, which is decidedly interactive and not okay.

And what I definitely should not have done? Check the American Society for Bioethics and Humanities annual meeting program. Very little good can ever come from that, although a lot of irritation certainly can–and in my case, a lot of irritation can have a pretty seriously negative health impact right now. So let me be the first to say: I should have listened to my doctor.

But I didn’t. Instead I browsed the program, got pretty irritated at quite a bit… and then found an ASBH session that at least on the face of it appears to be lifted from a conversation I had with an author earlier this year about my objection to their recently published paper, based on an entire body of literature the authors were unfamiliar with. A body of literature I provided references to. Including the faculty profile page of the researcher behind that body of literature.

There was no courtesy FYI; no “hey, would you like to be involved;” “hey, do you mind if I;” no nothing. I wouldn’t have known about it if I hadn’t stumbled across it… which, I guess may qualify as actually ironic, and certainly belongs with a Jagged Little Pill. And while it is certainly possible that the panel was someone else’s idea and the bioethicist I spoke to about it was approached independently, if that happened to you, wouldn’t you at least say “oh hey, I should totally let the person who brought this novel idea to my attention know about all of this, just so they don’t think I intentionally left them out”? Or is that just me and my weird insistence on giving credit where due?

As salty as I am–no, as hurt as I am that someone I thought I could trust would do that to me, would ask why I objected to something and then take my explanations for their own benefit–I can’t even pretend that this is the first time this has happened. THIS YEAR. It’s like the 5th or 6th. It seems that while journal editors don’t want to publish my ideas when they come from me, they are perfectly happy to publish them if it comes from a Name. And these Names don’t appear interested in asking if I’d like to work with them, and can’t even be arsed to thank me in acknowledgements. Honestly, I question why I even have extended trust in the first place–after all, if I learned anything in 2008, it’s that people in bioethics will put their careers first, and should absolutely not be trusted, to any degree.

There seems to be only one solution here, and that’s to stop discussing my bioethics-related ideas with bioethicists. Unfortunately, DMs and eMails certainly aren’t proof enough for theft of ideas accusations–there’s a reason I’m not naming names here–and so my best bet, if I want to continue engaging in public acts of bioethics, is blogging here where there’s at least a public timestamp …or just not engaging in bioethics publicly anymore. Because let’s be honest, I’m not sure a blog post in the public domain would stop people from taking my ideas and passing them off as their own.

A rather telling commentary about bioethics as a field, isn’t it?

The Suspicious Trust of a Feral Cat

This is Overlord Zeus. This is also more than just a cat post, but it’s important that you know Zeus before I run with my analogy. Zeus is a rescue, and more specifically, a feral rescue. He had been inside for about eight months by the time I adopted him, and as you can see, he’s adjusted rather well. At least, he has to me. Of course, I also feed him and spoil him rotten, so it’s not too surprising that he follows me around with adoration (or hunger) in his eyes.

Other people, though? Not so much. He’s still pretty apprehensive. Oh sure, if you’re relatively quiet and still, he’ll come sniff and say hello, but if you move quickly or are loud, he’ll run to hide behind me and stay there until you leave.

Zeus has the wary, suspicious trust of a feral cat. People probably were a mixed bag for him while he was on the streets, and – oh. This is about analogies and people and me, isn’t it?
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Trust/Time/Pain Relation

It occurs to me that chronic pain/suffering is the opposite of trust. In fact, it is in many ways the ultimate in broken trust – a broken trust in your body. We have this implicit notion of what the body can be like, and should do. How it should perform, respond, and behave at any given time. We trust that when we want our body to reach for the wine glass, the right hand will raise and do so , that it will not spasm and drop the glass, that it will not be wracked with pain.

Time loops back into the equation because trust and time are intimately bound. One cannot exist without the other. Time itself is a construct; nothing exists but now, the present. We are always in the present, passing through it. We never reach the future, and the past is always behind us.

Trust is based on experience. Experiences that we have moved through in our present as it becomes past, and experiences that we have witnessed others move through.

These events, these singular experiences,
allow us to look at the seemingly endless options in front of us and narrow them down; trust becomes a filter that allows us to make decisions. In the network of life, trust gives us a way of managing what would be incomprehensible.

When emotional trust is broken,

our options become limitless, and we are paralyzed, not in fear, but in choice. We have no way of narrowing down the potentiality of an event/situation without the ability to trust. But we trust — or not — based on prior events, and to override those prior events that taught us that we cannot believe our instincts is something that can only be done on faith.

Chronic pain/suffering is a different betrayal of trust, though. It’s not emotional, and the result is that it doesn’t result in endless options that we can’t filter, being able to say X would be bad, Y would be good, etc. Instead, the opposite happens. Instead of there being a limitless set of options in front of us that we are unable to sift through and properly respond to, our options shrink to few, or none. We learn that we cannot trust our body, that any instruction could result in pain, in broken items, in exhaustion, in – well, the realm of experiences of chronic pain/suffering. But because I can grab a mug one day and have no problems, and grab it another day and would have dropped it if not for the handle catching on my hand, I cannot even have the most basic trust in my body’s abilities. This limits my options, I can’t do anything.

Go to the movies? Maybe, maybe not. might be fine, but it might be so uncomfortable that I am in screaming pain before an hour is out. Go ice skating? Only if I want to risk injury and pain migration. The list goes on and on, until even getting out of bed becomes a chore, a threat. (Depression in sufferers of chronic pain/suffering is, I maintain, a direct result of this, rather than any other factor.)

And regardless, without the ability to trust, whether external or internal forces, the result is that we are everpresent in the now, unable to pass through the present. We become stuck.

…it’s very odd to quote/crib my own writing. If this looks familiar to some of you, well, there’s a reason for that. I suppose I am building a theory! (And at the very least, I am recording a snippet of a longer email conversation for posterity, and further thought.)

A Matter of Trust, A Leap of Faith

Another surprisingly good day. I did something that can be a bit hard for me (as I am, regardless of the fact that no one believes me, quite shy and introverted), and sought out several people I’ve specifically had problems with in the past year to clear the air, apologize for not talking to them immediately when something bothered me, and in one case, spent quite a while quietly talking and thinking about what factored into the perfect storm that threw us off the rails.

For all I write, and talk, I actually find it very difficult to say, clearly and calmly, “I feel [whatever]” about a subject. I admit it’s my big area of broken; I don’t have the best social skills, and I play my feelings very close to my chest. I have a hard time opening up to people; I will happily chatter for days about any number of things, but if we start in on how I feel, or why, or what, I’ll clam up.

It’s a matter of trust. And trust is a tricky thing, because you have to trust in order to move through life. Trust is what allows us to narrow our options for the future; if we have no trust, it’s very difficult to make choices; our options become limitless and we have no way to make judgment on those options. Trust is a filter on the endless potentialities of the future, and it allows us to not become stuck in the present, turned to past, but continue moving through present to future ((I wrote about this several years ago, for a project that turned into an art book titled Trust Bound:

to free ourselves from being stuck, we have to take a risk. we have to look at the future potentialities and guess, choose blindly, choose based on what other people offer you. trust is a multiperson experience, and if someone extends you their trust, they do so on the basis of their experience, and what they think of you. what they think you will do.

the options become filtered through the actions of another. it is up to us, whether or not we accept that external filter. it is up to us to make the decision that a single anomalic event does not mean we always have bad judgement.

to become unstuck, you must trust.

)). But to give trust is a risk. Because, to paraphrase Alfonso Lingis, the more you know about someone, the more clearly you sees that every act of loyalty, of trust, opens an opportunity for disloyalty and broken trust.

It’s easy to get hurt. It’s easy to lose faith. But it is hard to live life without trusting those around you; you become truly alone.

Still, you can be an academic, you can know a subject intellectually inside and out – that doesn’t mean you’re going to be a genius at applying it to your own life, and this is definitely an area I need to work on. Bad experiences, insecurity, a shitty year – a great combination to fold me into my shell and shut down any thoughts about saying “so, hey, I have this problem…” (Not to mention, as was pointed out to me, when someone is feeling excluded and discriminated against, expecting them to step forward and take action on it does become a bit close to blaming the victim/expecting them to take steps to fix a problem.)

The thing is though, when you’re stuck in the now and unable to trust, it’s because something has made you doubt your abilities to use trust as a filter. The only real way to “get over it” is to just take a deep breath and jump – take a leap of faith, hand someone your trust, open yourself up to them, and then give them to chance to reciprocate.

To say that is hard is an understatement. Then again, I walked into it with nothing to lose; I had hit the bottom, and realized this wasn’t how I wanted to live life. I wasn’t, haven’t, been living life. I’ve been mimicking, and going through the motions, but that’s not going to get me what I want – to, as Thoreau said, live deep and suck the marrow of life. Certainly wasn’t going to help me make actual connections and friends with the people in my department.

I think that it’s necessary to trust to live life, truly live a full and vibrant life, to fully engage with the world and those in it. At the same time, trusting when time and again we will find our trust broken is one of the hardest things to do; to paraphrase another wise modern philosopher, the hardest thing we will do in this life is live it.

Sometimes you have to take that leap of faith. You have to give yourself permission to have been wrong, and you have to override your instinctual reactions to protect yourself, even in that wrongness, and reach out to someone else and tell them the same. To place your trust into the world, into the hands of someone else, and give them the option to reciprocate.

the hardest thing in this world is to… trust in it?

I think that perhaps the hardest thing in this world is not to live in it, is not to be trustworthy, but simply to trust.

To trust is a daily requirement. We trust our milk won’t be contaminated, that our cereal will just contain cereal (or our pet food won’t have pesticides), that the mailman will actually deliver our checks, that the person we opt to confide in over lunch won’t laugh, that our friends have our best interests at heart. We know the laws that require milk to be pasteurized, and our food to be inspected for and created in safety; it’s our trust in people that is so fascinating. Laws, although useful for setting up social contracts, cannot dictate things as minute as trust in an individual. Yet, as Alfonso Lingis notes, everywhere a person turns in the web of human activities, he touches upon solicitations to trust, a field of options of yes and no to be navigated, not in isolated decisions, but as part of a greater whole.

Hmm…I feel the sudden urge to re-read Goffman’s The Presentation of Self in Every Day Life.