Notes for Whoever Has This Next

You get the folder, the phone list, and whatever else is in here. Read it once now and once more in about six months, because half of it will not mean anything until something has gone wrong.

First, so you do not read the rest through the wrong lens: nobody is dying. I am fine. Everyone is fine. I am handing this over because I have been doing it for eleven years, and eleven years is well past the point where a person can still see their own mistakes. You will spot mine within a month. That is most of the reason you are getting it.

What the job actually is

It is not knowing things. I want to be exact about that, because everyone gets it backwards in week one and then spends two years quietly ashamed of how little they know. You are not going to learn medicine. You are not going to out-read a specialist at two in the morning, and the nights you try will take more out of you than they give back.

The job is being on the other end. That is the whole of it. When one of ours gets a result they do not understand, there has to be a person whose number is already in their phone, who picks up, who does not need the backstory, and who will be there on Thursday morning holding the parking ticket. Everything else in this folder is logistics around that one fact.

I keep a printed page in the front pocket. A stranger wrote it after his diagnosis: nine practical things, all sound, every one of which you could reconstruct from a careful weekend of searching. I do not keep it for the nine. I keep it for the thing at the end that is not advice at all, where he says he wishes he had talked to somebody who had already had the surgery, and he did not, and he minds. That sentence is the only part of the page you could not have gotten anywhere else. A clinical guideline will give you the procedure in beautiful detail. No guideline has ever told you what its authors wish they had done differently, because a guideline does not have an author in the sense that matters here, and an institution is not capable of regret.

Now hold that next to the teeth, which is where you will spend more of your time than you expect. One of ours was told last spring she had twelve cavities. Second opinion the following week: none, and the second dentist used the phrase trolling for dollars about the first one, who may well have been right. Somebody else in the circle has a jaw problem and has been quoted a hundred and fifty thousand dollars for surgery by one person and six months of clear aligners by another, and both of them were certain. I have read enough of these now to tell you the pattern is not rare and not regional. It is the normal condition of the field. The knowledge exists. What does not exist anywhere in it is a person leaving notes for the next person, which is why the contradictions never get settled. They just sit there accumulating inside patients.

Somewhere in there a man in his thirties finally learns from a hygienist he has never met before that decay is roughly the integral of acidity over time, which is why the sugar matters more than the brushing. Not secret. Not new. Not hidden from him by anyone. Simply never handed to him, across twenty years of being told to brush harder by people who all knew. The man with the diagnosis knew exactly what was missing from his handoff, which is why he sat down and wrote one. The teeth are what it looks like when nobody knows what is missing from theirs, because nobody has ever received one.

The part I got wrong

Two things, and they are not the same size.

The small one: for the first four or five years I treated asking for a second opinion as an insult to the first doctor, something you did only once relations had broken down. It is not an insult. It is a checksum. You run it on the plans you like best, not the ones you are suspicious of, because the plans you like are the ones you have stopped checking. That cost us about seven weeks once. Seven weeks is survivable. Write it on the inside cover if you want.

The large one I am still not over, so I am going to be short about it. In the second year I decided that showing up at the hospital more than briefly was an imposition. People need rest. Family need space. I had a whole considerate theory. What was actually happening in that room was that a person too exhausted to follow a sentence was being asked, daily, to make decisions and to remember what was said about them, alone, with nobody there whose head was clear. Nobody in a hospital bed can advocate for themselves. That is not a character flaw in them, it is a property of hospital beds. The correct behaviour, and I am sorry it took me as long as it did, is to go and make a nuisance of yourself, and keep going, past the point where you feel welcome, and ask the questions in front of the doctor rather than in the corridor afterwards. If you take nothing else out of this folder, take that.

Somewhere in another country this week, a man whose dog has a disease that makes sunlight dangerous designed a small guard for its nose, gave the files away for nothing, and five hundred dogs are now wearing one.

Retransmit

The best working model I have found for this job is not in medicine at all. Out in the Argentine campo, where the distances beat the phone network, people still send each other messages by AM radio. The station reads them aloud, and then whoever happens to be listening and happens to be heading that way carries the last stretch by truck or on foot to someone the signal never reached. Strangers are the routers. Everyone involved knows the channel drops things, so the messages that must not drop, a death in the family, a funeral time, get read more than once. That is the entire protocol and it is better engineered than almost anything we have: a channel known to be bad, volunteers doing the last mile, and deliberate repetition on exactly the traffic that cannot be allowed to fail. The same instinct showed up this week in a man who had spent weeks by hand lining up county parcel boundaries against public land maps to find property he could buy, got tired of it, automated the whole thing, and then published not only the tool but a list of every data source he had used and which ones had burned him, naming the state endpoints that looked open and turned out to be internal test rigs. Nobody makes you publish your dead ends. He did it for precisely the reason the station reads the death notice twice: he assumed loss in the channel, and he sent again the part most likely to be dropped.

So when you write things down for whoever has this after you, and you should, start with the dead ends. The clinic that does not answer its published number. The referral route that looks correct and adds three weeks. The receptionist who can get you a cancellation if you call at four. None of that is knowledge. All of it is the difference between six weeks and two.

Known broken

The number for the imaging place is dead and nothing has replaced it. Go through the main switchboard and ask for the department by name.

I never got the scanner working. Photograph the pages with your phone. It is fine, and it has never once been refused.

The shared document is readable by eleven people. Write nothing in it you would not read aloud to all eleven.

What I never figured out

How to tell a good one from a bad one before you need them.

Eleven years, and I am not measurably better at this than I was in month two. The office decor is noise. The reviews are noise. The confident manner is worse than noise, because confidence is the one trait that survives in a field where nobody checks. Every single time it has gone well, it has gone well because some actual person said go to her, she did mine, ask about the recovery. Which means the whole thing rests on there being somebody to ask, and that is the part I cannot put in the folder for you. You acquire it by being known by people over years, slowly, before you need anything from them, and it is the only piece of this job that cannot be done in an emergency and the one that almost nobody now has time for. We are all, by every measure anyone bothers to take, in each other’s houses less than our parents were. I do not have a fix. I am telling you about it so that you know it is not a hole in my notes. It is a hole in me, and probably in you, and it is the hole this job keeps falling into.

Who to call

Last thing, and then the folder is yours.

What worries me is not that people have stopped knowing things. It is the other end.

The mathematicians have been having this out in public all week, and it is worth your attention even though it looks like nothing to do with us. A machine has got better than them at the thing they gave their lives to, and faster than nearly anyone predicted, and the arguing is mostly people trying to name the grief accurately. One of them wrote that he saw it coming thirty years ago and his sadness is priced in. Someone else answered that you cannot actually know how you will take a thing until it is you. A foundation has just put fifteen million dollars toward helping them work out what the work is now, and I hope it does some good, but money cannot buy back the part they are short of. What is breaking is not the proving. It is the sentence somebody taught me this and I will teach somebody, which is a handoff that has been running one generation at a time for a few thousand years and only works because there has always been a person coming on shift. The machine can take the proof. It cannot take the handoff, because it does not need one. And a handoff with no receiver is not a handoff. It is a file.

That is the real shortage, and it is not confined to mathematics. We have never had more information and never had fewer people on the other end of it. A man can spend nine years, patiently, across his entire twenties, working out how to break into a games console he already owns, and write it up beautifully, and the only thing that keeps that from being a sad story is whether anybody is reading.

So: answer the phone. Put your name on things, including the things you got wrong, especially those. Assume the channel is bad and send the important parts twice.

You have it now. I am not far away and the number still works.