It’s Thursday, 2 July 2020 which also means it’s my wedding anniversary. I also know it’s my wedding anniversary because Wimbledon should be happening around now. I do not know that because I care that much about tennis, I know that because my partner cares very much about tennis and was not able to watch the final while we were getting ready. (I did, because all I had to do was pretty much put on a suit and try not to ruin it. This is probably not very fair).
It’s also close to the fourth of July weekend in the U.S., which has normally been fraught ever since 2016, with the promise of a clash of jingoistic, white supremacists meeting, well, nice people, but this year it’s even worse because for some reason, the U.S. has made actual decency and caring about other people by simply putting on a mask a fucking political issue.
My one thing today is that as I had a very brief call with someone about some potential work, I could hear their toddler in the background plaintively asking to play with them and clearly wanting some attention. I emphasize with this! (Also, to be clear, children do at some point need to learn that they are not the center of their parents’ worlds and cannot get all the attention all the time).
Anyway: this call is happening and I keep saying to this person, who is repeatedly apologizing for the interruption, hey, I have kids, we can totally have this conversation later and they’re also saying yeah, I wasn’t supposed to work today, to which I say seriously, this conversation is not that important.
My point is this:
If you’re having a call or a meeting with someone and it’s being interrupted because they have to go take care of someone, think about whether you really need to have that meeting right there and then.
It can be the easiest kindness to say that the meeting isn’t that important and that it can be rescheduled. Even just saying that can be a kindness.
If you can, think about whether your meeting can wait. Think about whether, in the grand scheme of things, what might have felt urgent can be less important than them being present with someone who needs them to be present.
They might not take you up on their offer - that’s absolutely okay, because it’s their choice. I bet it’s likely, though, that they’ll appreciate you making it. (Not that you’re doing this for appreciation!)
This isn’t just about parents, either. I nearly wrote parents above, because I am one and it’s my own experience, but this is about anyone who’s a caregiver. There are many people who have to care for other people — and animals — too.
And, sometimes, the person who needs to be cared for might be the person you’re talking to, especially if they have a chronic illness they’re managing.
1.1 The One About Risk
This one is an adaptation of a Twitter thread from earlier today.
Bobak Ferdowsi, who was Twitter’s main character in 2012 when NASA’s Curiosity landed on Mars in 2012 and he was in visible in the livestream, having worked on Curiosity in his role at JPL, posted this today about how NASA assess/thinks about risk:
It’s a table. The likelihood of an event happening is on the x axis, and goes from rare on the bottom far left, through unlikely, possible, likely and certain on the far right. On the y axis, starting at the bottom, is the impact of an event: going from neglectable through minor, moderate, critical and catastrophic at the top.
Bobak shared this because if you’re a person alive right now it’s likely (maybe even certain) that you’re thinking about risk in terms of what to do every single day, thanks to the COVID-19 pandemic.
I shared the Bobak’s tweet with some context, because my wife and I had cause to use it a few years ago.
We’re lucky to have two wonderful, healthy children. But, like many other parents, this might not have been the case. In one of the early screenings/scans for our second child, the result came back with something concerning about his nuchal fold measurement.
It was not clear what was going to happen. In the end, it felt like there was a high probability that our son wouldn’t be born without any complications, and in the end, it was one of those situations where you just don’t know until the baby’s been born.
When we got those first results — and for the rest of our pregnancy — we had to talk and think and make decisions about probability, risk and impact.
It started with the meeting with our genetic counselor. There’s someone who talks to you about these results and explains to you what they mean.
What I had a problem with was the way that risk was presented. It was something like this, and I apologize for getting anything wrong. (I don’t have any of the documents to hand, so I may be misremembering, or getting some details across in a wholly inaccurate way. Don’t use this as any sort of medical advice.)
The nuchal fold measurement (I remember now that it was from an ultrasound) meant that our risk of a condition had, say, doubled. We kept talking about doubling or higher and I wanted to ask: doubled from what?
It turned out that the risk had doubled from something small, to something still small. Say, from 2% to 4%.
I got a bit upset. Could we not have been told that the risk was 4%? It felt mean, to lead with saying that it had doubled, or for the risk presented to have doubled. What mattered, to me, was that the risk was 4%.
In the meeting, my wife and I talked about what we might have to roll on a set of dice to get a 4% probability of a result.
4%, in the grand scheme of things, is not very likely.
But it’s more complicated than that. You might not care about a 4% risk of something trivial. You might not even care about a 4% risk of something that would require routine surgery. You might not even care about a 4% risk of something that would require non-routine surgery, but with a set of consultants nearby who are regarded as experts in that area and covered by your insurance.
On the other hand, you might really care about that 4% risk if it would mean intensive care, and your personal situation means it would be difficult for you to be a fulltime caregiver for a particular period of time, more than being a parent or caregiver without complications.
You get the idea.
So now we had to talk about the kind of event as well as the likelihood of the event.
There were some things that we were relatively comfortable with. There were others, like agonizing discussions I imagine many parents have about Down’s syndrome and what they might or might not do in the event of a particular outcome.
But what struck me most was that the way probability was talked about and how we were, well, counseled about it. Because probability is really hard to understand, and it’s not something we intuitively get. There are tools and games and physical analogies to make a probability real as opposed to something abstract, as opposed to something just like a number.
I mean, for god’s sake, in this case, I would’ve killed for one hundred white balls in a box and for the counsellor to be able to take four out and have us put three green ones in, shake the goddamn box and get us to pick a ball out. And I feel like this is dumb, because I just thought of it off the top of my head.
Look, I’m just going to go with this and explain my thinking: I think the above balls-in-the-box example is interesting because you know that there are four balls in there. You put them in there. You know also that there are ninety six other balls in there. You know that you could pull out one of the green balls. You just had a talk about what the green ball means.
The nature of the example changes if you’re asked to put twenty balls in. Or forty. Or forty and you can see them all there in the box, nestling in amongst the white ones.
I am not pretending to say that I know anything about statistics (I do not! I have never formally studied statistics!) or that I know anything about probability (I do not! I often get them wrong! The extent of my knowledge about probability is reading the CIA’s and follow-on reports about how people interpret different textual descriptions of probability, like what people think likely means — go read it if you want, but it’ll probably be exactly what you think it will be, and therefore terrifying).
But I remember thinking: hang on, this feels a bit weird. I don’t really like translating what our counselor is saying in our meeting, trying to check if I understood it properly, and then checking with them if I’ve correctly interpreted what they’ve communicated in a way that makes more sense to myself and my partner.
The next part, of course, is that once you’ve had a discussion about the impact and the risk, you do need to talk to a medical professional about what to do if that result happens because, well, it impacts the… impact. (Like I wrote above, I guess). The genetic counselor, though, is not a medical professional and will quite unhelpfully and yet honestly tell you that they’re really not the person to talk to about what happens next, if this happens because, duh, they’re a genetic counselor.
This particular story is yet another illustration of how fucked-up healthcare in America is, but having grown up in the UK I’m reasonably sure that any sort of specialized healthcare without an explicit carveout for a patient advocate in every meeting making sure everything is coordinated will be a similarly frustrating clusterfuck.
You know, I’m sure there are a bunch, but I’m not going to write about them today because it’s time for family dinner.
A short one today, which makes a change. (I mean, I say shorter. If I scroll up it still looks like a bunch of words).
I hope you’re doing as well as can be, and I hope the people you care about are doing as well as can be, too.
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