Once upon a time, a 28-year-old diabetic Canadian walked to her routine pregnancy appointment and heard from a nurse, staring at the floor, that the doctor was going to want to talk to her about the ultrasound results.
It was a tiny, casual moment; and it split my life into before and after like the peaks of a mountain range split a watershed into east and west. Before, I was a young Canadian with a chronic illness that was well controlled, a predictable and boring job, a suburban house, and a healthy and thoroughly planned pregnancy. After, I was sobbing with my head on the steering wheel of my car, wondering how the doctor could be so sure this “mild” form of dwarfism wasn’t fatal if she didn’t know what it was.
I guess what I did next was what anyone would do in that situation: I tried very hard to get the information I would need to prove that we were still climbing up to a mountain peak, instead of tumbling down the unforeseen other side of the mountain.
I took my university library access and read medical journal articles about ultrasound false positives, possible diagnoses, upsides and downsides from amnio tests, thinking but not admitting to myself that maybe I could prove the test wrong and get the “normal” baby back. As if probabilities were fate. As if I could prove that if it were unlikely enough, it definitely could not be happening.
The day of the appointment, I had the afternoon off from work so I could pick up baby necessities. I don’t remember much about that shopping trip, except for standing in Sears looking at a little yellow stuffed elephant with the softest fur and a rattle in its head. “I can be a good mother to a baby who’s different,” I thought. “I can do this. And this is a beautiful little toy. My baby still deserves nice things.” I bought it and named it Ella and it was Echo’s first toy; they’ve long since outgrown it but I can’t let it go.
Even so, when I brought the baby things home, and washed and folded the clothes and tucked it all away in the nursery, I shut the door and didn’t open it again until Echo was born.
Western culture is obsessed with control. What is your ten-year plan? Have you performed preventive maintenance on your car? Are you manifesting positive people and things into your life? Are you reading the right kinds of books to your kids every night?
If we only do all the right things in the right order, we can protect ourselves from suffering. It’s a pervasive idea and underlies most of consumer culture: buy the “right” clothes, shoes, make-up, car, house, mutual funds, insurance policies, diplomas and degrees, etc., and you’ll have the “right” life, which is the one where your plans all work out and you always know what’s coming next. It’s all bullshit, of course, but it’s profitable bullshit.
I’d done everything “right,” and the odds of what happened are (we eventually learned) currently about 1 in 500,000,000. But just because something is very unlikely and you’ve done what you were told would prevent it doesn’t mean it won’t happen to you.
We had at least a dozen false positive diagnoses from half a dozen doctors over the course of the pregnancy and Echo’s first years, mostly delivered in a tone of total confidence by well-recognized experts (“It’s X. Yes, absolutely. We’ll just do a blood test to confirm.” Readers, it was never X). I can’t remember them all, but one stands out:
“I’m sure,” said the geneticist–the same geneticist who was so sure before about others proved wrong. “Let’s just send a blood sample to a lab that can diagnose it. It’s in France. I’ll need you to sign this waiver.”
I signed the waiver.
I went home and googled it: characterizing feature is missing collar bones. Echo has collar bones.
“These people have no idea what they’re talking about,” I thought.
(Why could they never admit it?)
We were referred to Sick Kids. By the time we got in to see them Echo was walking and talking and charming people, and I no longer expected we would ever get a diagnosis. Pyknodysostosis at that time had about 40 known cases worldwide, and once you’re ruling out conditions that rare, you are scraping the bottom of the barrel, diagnostically speaking.
The expert at Sick Kids agreed. “She’s healthy, she’s smart, she’s a wonderful kid,” she said. “I don’t know what’s causing these symptoms and we may never find out.”
If any doctors are ever reading this, take note: that was the first doctor I trusted in years. We let go of chasing a diagnosis and just settled down to living life. If you don’t know, for god’s sake, say so; we can’t trust you if you keep lying to us.
A few years later, with more issues presenting, the search resumed: Echo’s new geneticist proposed a bunch of new diagnoses which I’ve all completely forgotten and which all turned out to be wrong, and then proposed a whole exome sequence.
A whole exome sequence is a blood test that compares every gene for one person to every genetic condition in the medical literature.
I make this sound quick: readers, it was not. Getting the first genetics appointment, then getting the geneticist to stop hyperfixating on the bloody diagnosis to refer us to specialists who could address the pain and mobility, then getting those specialists to take Echo seriously and actually do something, each took a very long time. In total this took probably about five years, and included threats of legal action and going to the press. If regular people dislike uncertainty, my experience is that doctors loathe it and will actively avoid patients who have symptoms or conditions they can’t explain.
We signed the waivers and did the bloodwork and, of course, it came back negative — no matches.
“No kidding,” I thought.
… an ethic of insecurity encourages us to approach the future with humility– with a sense of curiosity rooted in uncertainty and the kind of caution implied by the phrase ‘taking care.’ Yet however unknowable the future may be, there is no doubt our fortunes will remain interlinked. Risks proliferate, time passes, and things fall apart. But even amid the rubble, we can always reimagine, repair, and rebuild. Accepting our fundamental insecurity–the gift we all share–is the first step toward escaping our fear-filled burrows and ensuring our collective freedom, safety, and well-being.
Astra Taylor, The Age of Insecurity (p. 278)
It was easier to give up looking for a diagnosis; feeling certain that it was undiagnosable felt better than continuing to face the uncertainty of the search. Just like it’s easier to believe that there will never be a cure for T1 diabetes than to get my hopes dashed every time a newspaper decides to drive page clicks by prematurely declaring some new medical trial is going to fix my pancreas. (“You must have had too much sugar as a kid,” say people who learn I’m diabetic. Nope. But childhood adversity raises the risks of t1D about threefold.) Or like many people who consider themselves on the right side of the climate issue have given up, because believing in a certain global collapse is easier than thinking that the future is still in play and something you do might matter — either for better or worse.
About two years later, the geneticist called. “I think we’ve found something.”
(Sure.)
“There’s a medical study in California describing a new condition that matches a lot of their symptoms. They’ve linked it to a particular mutation, and when they ran a search for that mutation through the medical database, it matched with their exome sequencing results.”
(What?)
“Let’s set up an appointment to talk about this and see if you want to participate in the study.”
(Ok, but obviously this is going to be wrong.)
We met. We signed the very extensive paperwork.
At that time, Echo was the ninth human being on the planet ever to be identified with this mutation.
“The last of the single digits,” I joked. “That’s like one in seven hundred and fifty million!” But I didn’t really believe it. They were wrong so many times before. I was maybe 50% convinced. We were referred to an ophthalmologist because this is a condition frequently associated with cataracts.
(I mean, I say “frequently,” but really … nine people.)
There were cataracts. Small ones that don’t require surgery. About 75% convinced. Being able to predict symptoms is a good sign. But I wasn’t going to totally believe it until I got a copy of the published study for myself with data in it that I could compare and understand and evaluate.
A year and a half passed. The geneticist was supposed to call and let me know when it was published, but maybe she forgot. Or maybe it all fell apart.
We had an appointment at the bone clinic at Sick Kids.
“You’re famous!” said their geneticist to Echo, smiling. “You’ve been published! I assume you’ve seen it?”
What? No.
“I’ll get you a copy.”
Between the appointment where we found out about the study and now, another seven cases have been identified, so there are now 16 in the world.
It’s real and official and a press release was published in Newsweek.
And my main reaction was overwhelming exhaustion.
When they went to their dad’s that weekend, I sat in a chair and cried. Getting a diagnosis is objectively good news, but after spending years of their infancy working so hard to get one, and then over a decade trying to be ok with never getting one, actually having one was disorienting. If we hadn’t done the exome testing, we wouldn’t have this diagnosis; if the researchers had been interested in a different condition, we wouldn’t have this diagnosis; it’s all such a fluke. And there were fifteen years of unfelt feelings and unthought thoughts, things I couldn’t afford to feel or think because I needed to be functional and positive for my kid, that saw that printout in my hands and said, “Cool, we can come out now.” Only they all jammed together in a much-too-small doorway bickering over which one got to come out first.
Possibly the most ironic thing I’ve learned in my reading about this is how much researchers and theorists attempt to lock down uncertainty, turn it into a known thing they can make predictions about and “fix.” Anxiety is uncertainty about the future; therefore, let’s make the future known, and fix anxiety. Or: here are the productive types of uncertainty, so let’s develop a toolkit about how to feel the right kinds of uncertainty, and handwave all that existential stuff away.
Neuroscience has a bad habit of creating metaphors for human brains using whatever technology is most complicated at that time, so brains have been seen previously as counting machines, as computers, as an internet network, and so on. It seems pretty likely that the current neuroscience metaphor of AI and predictive algorithms is similarly flawed, but let’s use it anyway, since it’s what we’ve got:
Our brains are (apparently, for now) much like the predictive algorithms of AI: they have a model of what the world looks like, sounds like, smells like, and how it works, and constantly make predictions to guide our behaviour. Your brain says, “that rumbling noise is probably a motorcycle,” and your head turns in that direction to get the data that will either confirm or deny that. If you see a motorcycle, the algorithm gets a little more entrenched; if you see a tiny car trundling down the sidewalk packed with talking animals, you get a little jolt of surprise and the internal algorithm gets updated. Sometimes, what sounds like a motorcycle is actually a tiny wildlife car.
I’ll just note and leave aside how terrifying it is that we now live in a technological world that encourages people never to expose themselves to disconfirming evidence, but that’s a subject for another day.
Anyway: your brain wants to make predictions about how your day, week, month, life are going to go, and it wants to be right about them. Generally I’ve had good health, so tomorrow, I will have good health again; or, I have played fairly and by the rules and saved up money just the way I was told I should, so next year, I will be able to retire and go on my dream vacation; or, even, you can’t trust anyone, so I’m going to stab this person in the back before they can stab me.
It isn’t that my predictions from the pregnancy were wrong, or that any predictions about Echo were so tenuous and precarious they had no predictive value. It isn’t even just that the predictions about the marriage, the job, and my family of origin were also wrong, or that my previous predictions about god, morality, politics and the future were wrong (fun fact: in my family’s home, we had a bunch of fundamentalist christian books about how the rapture and the end of the world were coming in the 1980s for sure, and I read them all — when I was very little). Everything I was sure about at 15 turned out to be wrong, and so wrong that, if I met my younger self now, I don’t know if I would like her, and I’m pretty sure she would find me terrifying.
It’s that my whole predictive apparatus has been shaken too profoundly to make predictions anymore.
I mean, obviously, on the level of sense data, it’s still working: my brain very happily fills in what it thinks ought to be in my visual blind spot and will make guesses about what someone is saying on a garbled recording. But my conscious predictions have an error bar now. I am not sure of anything any more. Or rather, at best, I am 80% or 90% sure, plus or minus 5%, 19 times out of 20.
Civilization itself is, basically, an answer to the conundrum of uncertainty: for the lucky few behind the walls, you (think you) know how much food there will be, where to get it, how much it will cost, how long you will need to work to get it. (And when those predictions fail — see: housing affordability crisis, runaway inflation, supply chain disruptions — gods help us.) There are organizations that are (meant to be) there to protect you: police and armies. Governance works in a predictable way and, unless you want to, or belong to a certain social class, you don’t have to get involved. Navigation is simplified. There are rules to follow for training and education and investments and properties and marriages and other relationships and families and so on that, you have been told, will get you where you want to be. If you fail, it is assumed, or if you fall, it is your own fault.
Outside the walls it’s a different story. Those unlucky ones have their resources coerced away, their own control and certainty eroded. We export precarity.
We keep making civilizations so it must be something people inherently really like. But most of our species have not lived in civilizations, so it’s an open question if those feelings of certainty and control are good for us, or not. Like easy sugar and desk jobs.
If that ultrasound about twenty years ago was the moment that divided my life into Before and After, if it was the peak we passed and then started descending into a new watershed, I spent the first two years looking for maps and clues to lead us back to an upward path.
Then, realizing that was never going to happen, I embraced what looked like a gentle downward slope: not what we expected, pretty scenery, who knew what was coming next? Scary because we didn’t know where we were, but I wouldn’t have chosen to be anywhere else anyway.
By the way, an aside about the infamous Welcome to Holland piece: this was less like thinking you’re going on vacation to Italy and getting off a plane and finding out you’re in Holland than it was thinking you’re going on vacation to Italy and getting off the plane and realizing that you don’t know where you are and no one can tell you, but none of the streets match the maps, you don’t have the right currency, you don’t recognize and can’t speak the language, there’s practically no one there and every so often someone in a lab coat jumps from behind a door and screams at you.
Back to the mountain:
Just when we were getting used to that gentle downward slope and living somewhere we didn’t recognize, we started falling off cliffs we didn’t see coming. Walk walk walk SPLAT. Then getting up and trying to keep walking down the mountain and keeping a positive and optimistic attitude (“but don’t worry! it’s not fatal!”) and enjoying the beauty that’s there while also keeping an eye out for unexpected cliffs. And then we started hearing animals roaring at night, and couldn’t see where they were coming from, or what they were hunting, so we started keeping night watches. It was still beautiful and there was nowhere else I would have chosen to be but there was fear and exhaustion underlying every minute.
We didn’t have a choice so we just kept plugging down the mountain, and then out of nowhere we came across a lookout: a promontory with a view of the next few miles, a name for the mountain, and a map of where we’d been.
This was what I’d wanted to find twenty years ago, and twenty years ago it would have given us great guidance for the twenty years we’ve already had. We can see a bit farther now; the oldest person identified with this syndrome is about forty, so maybe we can get some clues about where the cliffs and wild animals are for the next few decades.
But overall it doesn’t really matter because this is where we live now, and having a name for the mountain and a view of the next few miles doesn’t change the fact that we still have to walk it.
And with only 16 diagnosed cases ever, we still know almost nothing. The uncertainty has a label now. That’s what’s really changed.
I can look back twenty years on and see how much of my grieving and anxiety after the ultrasound was about the loss of the feeling of certainty; that the future was a known, predictable place and I could make it what I wanted. I’d done everything right. I’d taken all the vitamins and done all the exercises and controlled my blood sugars beautifully and bought a nice house in a good neighbourhood and gotten married to someone who the people around me seemed largely to agree was a good person and a good match. I had a good job with a good maternity leave policy. I had a late-model car and the right kind of infant car seat. I’d taken the baby classes and read the parenting books. And then — whoosh! — I was somewhere completely new, with no map, and no way to get one.
You know how much you rely on the feeling of certainty when you lose it for good.
And you know how much the people around you rely on the feeling of certainty when they cut you off because what is happening to you scares them, as if genetic syndromes were catching — or if they insist that you make up some other story, something that makes them feel safe. That you deserved it. That you overlooked some crucial element of The Plan. That you’re exaggerating, or making it up. “Good Vibes Only” — so: change your story to an easy one, hide the biggest parts of you, or out you go, and only yourself to blame.
You might be wondering about that rapture prediction and my career. Because yes, you’ve heard the argument too: people have thought the world was ending before lots of times, yadda yadda, therefore climate change won’t happen or won’t be ‘that bad.’ And it is true that the fundamentalist faith leaders of my youth were very, very sure that Gorbachev was the antichrist and the European Union was the whore of babylon and the four horsemen of the apocalypse would be riding in any day now — for sure before big hair and neons went out of style.
And they would much rather have been right about that then think that their grandkids might have a chance to live out a normal life on this planet. Anyway:
I think about this all the time. All the time. And if I didn’t, I don’t think I could keep working.
In 2009, the IPCC met in Copenhagen. It was the world’s last chance to create a binding international agreement on emissions that could prevent climate change. And it failed.
No one around me seemed aware of what had happened; I was in my own bubble of climate grief well before that term was popularized and solidly in the era when therapists told clients struggling with climate trauma that they were catastrophizing.
I had a six year old kid. A kid who every doctor they’d ever had had been wrong about, very wrong about, usually more than once, and who absolutely needed a planet to live on.
If anxiety is the belief that something terrible could happen and you can’t make it not happen, what do you do? We’re told to “control what we can.” What if you can control absolutely nothing? What if you have some small, immeasurably small influence, and that’s it? Do you fold? Do you chop pieces off what you fear, like Cinderella’s stepsisters’ feet, so that it fits in the shape you can handle?
Hope locates itself in the premises that we don’t know what will happen and that in the spaciousness of uncertainty is room to act. When you recognise uncertainty, you recognise that you may be able to influence the outcomes – you alone or you in concert with a few dozen or several million others. Hope is an embrace of the unknown and the unknowable, an alternative to the certainty of both optimists and pessimists. Optimists think it will all be fine without our involvement; pessimists adopt the opposite position; both excuse themselves from acting. It is the belief that what we do matters even though how and when it may matter, who and what it may impact, are not things we can know beforehand. We may not, in fact, know them afterwards either, but they matter all the same, and history is full of people whose influence was most powerful after they were gone.
Rebecca Solnit, Hope is an Embrace of the Unknown
There is a difference between influence and control: we can absolutely do things that change the odds, from taking folic acid to getting rid of carbon emissions. But influence is partial and conditional, and we lost something in choosing to believe that individuals control their fate; in my experience, it was a good chunk of the human heart. (A cousin of mine suddenly passed away at five years old. My aunt and uncle went to see their pastor for counseling; both were deeply religious then. The pastor said, “You must have done something terrible for God to punish you this way.” The ugliest part of this need for certainty and control, for the belief that we are able to make good things happen for ourselves so that if bad things happen it’s our own fault, is blaming victims.) The capacity for real empathy, for community, for deeply knowing each other, for faith, for love beyond self-interest, and for hope, all require realizing that Certainty is a feeling, not a fact.
Fortunately, by Copenhagen, I had six years of practice in remaining deeply engaged in a project I could not control the outcome of or even be able to make any useful guesses about how things were likely to go.
Living in the kind of uncertainty that we build civilization to avoid teaches you some things. And they are things that most people would rather not know.
We label that knowledge pathology: recovery from any kind of trauma means realizing that you are safe now. You will, if you have ‘healed,’ rejoin the ‘normal, healthy, majority’ of adult humans who know that the world is mostly predictable and we are all ok. Except in what sense can it be thought that a majority of humans lived their lives in safety and stability? It may be safer than traumatized people have learned to believe, but it is also a whole lot less safe (and for some people more than others) than the lucky few setting the diagnostic criteria seem able to imagine.
When I let go of certainty and control, when I understand that I don’t and can’t know what the future holds — in those moments, in that space, I see all the ways the future could be unexpectedly beautiful. And sometimes, it’s beautiful because of all the ways it went wrong.
And when, instead of grasping for what I can control and keeping my world to the size of what I can fit in my own two hands, I can see my anxiety for a sign of the things I love and fear to lose, and choose it — go ahead, feel anxious — remind myself that the anxiety is a result of committing myself to something big and uncertain because it matters — the anxiety kind of boils away, and leaves commitment behind. Because on the other side of that anxiety is freedom and choice. That is where you can act.
Look: for Echo to have a 1/500,000,000 medical condition is staggeringly unlikely. But the difference between something that is very, very rare and something impossible is that the very, very rare actually does happen to someone, sometimes.
Also unlikely is that it was ever diagnosed. That Echo got a whole exome sequence (about 800 people in Ontario every year receive a WES test. That’s 1/18,750 Ontarians per year). That a researcher in another country was looking into this unknown syndrome instead of one of the hundreds or thousands of other ones. That they found a genetic cause. That they looked internationally for others with that same gene quirk. That they found us.
Statistically speaking, it was never going to happen. Except it did. Twice.
It’s the prediction errors: the eventual diagnosis told us correctly about the cataracts. But it did not correctly predict their height, and it could not have predicted their kindness, creativity or love of manga. Doctors advised me to do everything possible in subsequent pregnancies to avoid having another kid like them, but Echo is the best thing that ever happened to me. I could never have seen how grueling or exhausting working in wind energy was, but it brought me to Hamilton — a city I’d been told was dirty and poor, except that it brought me my best friends, favourite parks, a house in walking distance of a conservation area, wonderful shops, the art crawl. At seventeen, I was diagnosed with diabetes and told my life expectancy was 55, and that chances were almost 100% that I’d have eye damage requiring surgery within 20 years. I’m 49, my health is good, my eyes are fine. I was also told that there would be a cure within 2-5 years tops; 32 years later, still waiting.
It’s the prediction errors, the fuzziness, how the models get it wrong — or right-but-wrong, missing the point. I just don’t get certainty anymore. Climate change is definitely happening. Seas are rising, people are being displaced, wildfires are raging, diseases are spreading — and 100 years from now, a generation removed from one of the many sub-emergencies, two adults will fall in love who without that emergency will never have met, and they will (maybe with guilt) feel gratitude for the emergency that caused so much suffering because it brought them together.
I guess what this rambling post is trying to get at is that the most beautiful parts of our lives happen in the prediction errors, the things we didn’t plan.
1/500,000,000 meant I couldn’t pretend that I had certainty or control where I didn’t. I had to live in that uncertainty, and really feel it, every day. But I don’t think, 20 years later, that we had more uncertainty. We all live there. But when your daily lived experience is more normal, you are faced with fewer prediction errors, and you don’t need to know it.
I could have restored myself to some feeling of certainty. I could have, as the memes say, “chosen happiness,” “focused on what I could control,” “protected my peace.” Others did that, with Echo: doctors, therapists, teachers, friends, other relatives, who found the reality of their situation too hard and left. Either literally, severing a relationship, or metaphorically, in not following through on commitments or responsibilities. I could have abandoned them.
Except I think that the meaning of life isn’t about looking for what we can control so we can make plans that will definitely work out. It’s loving someone or something too much to give up on it.
Zoopolis 
Okay. Once through this. Wow. I need to go back and read the whole series again. It’s a book, my Facebook friend. And, perhaps, a book that we need. Only, does Echo need their travel and travails written out, as would have to be. Just, thank you for sharing this with us.
I have to comment, as the mother of two supposedly ‘normal’, ’ children, that even with those labels, you walk in an unknown jungle and do not know much of the language. And just when you think you do, your fifty something daughter surprises hell out of you and your partner, father of this whirlwind, is not coping well. Yeah.
All my love to the two of you and your furry brat of an animal.
We need a car AND a truck where we live. There are now electric options for both. Our electricity delivery is often problematic, but stocking up on extras is, thank goodness, not a problem.
This — “I have to comment, as the mother of two supposedly ‘normal’, ’ children, that even with those labels, you walk in an unknown jungle and do not know much of the language. And just when you think you do, your fifty something daughter surprises hell out of you and your partner, father of this whirlwind, is not coping well.” Exactly. We’re all living in uncertainty all the time. It’s just if you have a lot of luck you can avoid knowing it.
And this almost was a book. You would not believe how many times I cut it in half. lol
Love to you and yours too. I hope spring is springing up your way.
I read every word you write. Thank you, again, for the insight.
I >^/ (do you know this sequence? I only learned it recently)
I have no idea. lol
I saw it recently on a diabetes chat forum. I don’t know how to create the last symbol correctly; it should be a downwards arrow. So:
I > ^ /
means
‘I am greater than my ups and downs’
I thought that was a little something helpful.
That’s lovely! Thank you for sharing it. 🙂
Seconding the “you should write a book” comment, because, wow, this was so wonderful to read. Also? I love how you write parenthetically sometimes. It’s how I think, and when I read someone who writes like that, I get a little frisson of recognition, a “hey, someone else does this, too,” feeling. It’s nice.
Thanks, Julia. 🙂 I have no idea what kind of book this would be, but maybe one day.
Yeah. For me I think it’s a self-judgement thing, anticipating and heading off criticism. “Look, here I am, plugging all the gaps before you can point them out” etc.
Mine is some of that and a big ol’ scoop of ADHD.