Libraries and privacy

These are my notes for my own part of a panel discussion held at the British Columbia Libraries Conference on May 6 2021, called “Who’s Driving This Thing? Data-Driven Companies, Public Spaces, and the Issue of Privacy,” with responses to the questions answered by my colleagues, two archivists and privacy experts, Alexandra Wieland and Robert McLelland, and me. The session was wrangled, envisioned, and moderated by another librarian colleague, Samantha Mills.

A core concept each presenter feels is key to an understanding of privacy, surveillance capitalism, and information organisations 

Put simply, privacy is one of the core values of librarianship.

I’m going to start by going back to my own experience in ancient times in public libraries — the 1980s and 1990s, when I was a library assistant and then a new librarian.

In those days, we were pretty strict about privacy — and it was a lot simpler. If you borrowed a book, all records of that got wiped out after it came back safely. If someone wanted to read a reference book or an article, for the most part no one ever asked for their name — they just did it. (We used to take ID for some materials, but as I recall we gave it back when you returned the item, and we didn’t write your information down anywhere.) We kept patron’s holds behind the front counter where no one else could see them. And I remember being told, as both a library assistant and a librarian, that we were supposed to keep the identities of our patrons confidential. If someone asked, “Does so and so come here?” we were not allowed to tell them. And if we required people to register for a library program or workshop, that registration information was probably kept on a piece of paper, or a computer that wasn’t connected to the internet.

Things are a lot different now. And there are good reasons. Not very many people would stand at the coin-operated photocopier in a library and duplicate entire books or runs of journals — but the equivalent is a lot easier to do with electronic resources, unless vendors have some protection from this happening.

And a lot of our patrons want us to keep records of what they’ve read. And they like the convenience of ebook platforms that have nice interfaces and let them download books to their own devices, and customized features, and the ability to automatically add events to the calendars on their phones when they register for an event.

But as Dorothea Salo points out in her article, Physical-equivalent privacy [selectively quoting here]:

[T]he library patron using library-provided electronic information should enjoy privacy protection equal to that of the same patron using the same information via a library-provided physical information carrier.” This is not a perfect analogy… but it productively tickles most folks’ sense of what’s creepy….

Let’s walk through an example: usage counting for spaces.

Physical first. Gate counts, or a count clicker? Not terribly creepy.

…Counts by a person who asks each patron about their demographic information? Highly, highly creepy—we’ve definitely arrived at “scary” now, if we hadn’t already.

Counts by a person who asks each person their name or library-card barcode number? So scary that the library would likely empty out.

Combining either of the last two with recording the library material that the patron is reading, watching, or listening to? Absolutely beyond the pale; I would expect huge protests from patrons, working professionals, and professional orgs.

Combining demographic information, name or other identifier, and materials choice? Ugh, just forget it—that’s utterly beyond scary into full Orwell.

So many of us are probably agreeing now — it’s unquestionably creepy to think that someone is gathering this information about patrons online.

But what about giving patrons a choice?

Many people say yes to those vendor terms and conditions because they’re not worried or bothered about someone knowing what they read or what events they attend. And others say yes either because they don’t read or think about those terms and conditions (most of us say yes to these all the time), or because they don’t have a choice — that’s the only way to get access to that information, or training, or ebook, or library event.

And there are a few other people — I’m sure a much smaller number — who say no. They don’t use those resources because they don’t want to share their data. So there’s a spectrum of responses.

I think it’s fair to go a step further and say some people are being denied services because they say no. And some people aren’t making informed choices. Those are problems.

Here’s a tougher question. Should we even be giving patrons this choice?

“…The Canadian Federation of Library Associations affirms … that libraries have a core responsibility to support, defend and promote the universal principles of intellectual freedom and privacy…Libraries have a core responsibility to safeguard and defend privacy in the individual’s pursuit of expressive content. To this end, libraries protect the identities and activities of library users except when required by the courts to cede them….”

Canadian Federation of Library Associations 

Just looking at the privacy statements from our professional organisations, we should all be feeling a bit uneasy (if we weren’t already).

Are we really doing what we say we do? Are we protecting the identities and activities of library users, when we use these convenient online tools for Library collections and services?

“The American Library Association affirms that rights of privacy are necessary for intellectual freedom and are fundamental to the ethics and practice of librarianship.”

American Library Association, Core Values of Librarianship 

Frankly, my main goal today is to get us all feeling uncomfortable enough that we feel like we have to take some responsibility — as individuals and organisations — for doing more to protect patron privacy.

What is your biggest concern about libraries/information institutions/public services and privacy?

I’m treating this as the section where we talk about what we’re up against in libraries, especially library culture.

First of all, privacy is one of our core values, and people know this. It’s one of the reasons our communities trust us.

Not protecting privacy can lead to real harm to our communities — especially to more vulnerable people, and we are at risk of losing that trust we have built up over many decades.

How did we get into this situation, where we aren’t protecting privacy the way we used to? And why is it so hard to get out?

Part of it is us, and it’s entirely well-meaning. We are saying yes to services that people are asking for, and that are really very useful and exciting. We are saying yes to convenience. We are providing services that people really need and appreciate.

And part of it feels like it’s out of our control. Usually we buy or lease ebooks or ebook platforms, or research databases, etc. etc. — we very rarely build them ourselves. And we can only choose between products that are actually available.

And I think another part of it is the predominant library culture.

We are very good at many things, including providing essential services and being really responsive to our communities. We are good at telling our stories. We are great at collaborating. We’re also really thrifty and efficient.

On the other hand, many of us working in libraries are not so good at conflict. We are naturally oriented towards working together, not adversarially. If patrons ask us for a particular product or service, how comfortable are we saying we are seriously concerned about the privacy implications — and what if those patrons tell us they don’t care about that? If vendors tell us that our patron data is safe with them, how do we respond? (And what about if we don’t feel like “experts” on privacy in the first place?)

And as individuals in library culture most of us are also very respectful towards the people we work with. We also hesitate to speak up unless we have all the facts.

We think to ourselves, “Who am I to say anything when this isn’t my area? I’ll sound like I don’t know what I’m talking about. Besides, I’m sure Person X in charge of Z knows so much more about this than I do — and I don’t want to step on their toes.”

These are some of the problems. But I will have some suggestions at the end.

What are some actions we can take as people in libraries (including examples of resistance or friction we can practice as individual information workers) — or community members? 

I’m assuming here that none of us (library workers, libraries, even library associations) has the power to solve our privacy problem on our own. But I think that as individuals and as individual libraries we can take some steps, and we can shift the conversations where we already are.

What can I do (as an employee, manager, even a community member)? Here are some of the things I’ve done, tried, or have been reminding myself to do:

Ask! At every stage, starting early on:
– “What about patron privacy?”
– “How will my privacy (or other people’s privacy) be protected?”
(And remember that this applies to physical services as well as online.)

Advocate! And speak up!
– If I can’t say no, can I say “Yes, but only if we can do that while protecting our community members’ privacy”?
– Share examples of privacy statements, positions, and bold privacy-protecting moves from other libraries.
– Ask if my library can develop a public-facing privacy statement to guide staff, and inform my community (and vendors). (And offer to help write it.)
-Remember the impacts of our decisions on less privileged people — especially people different from ourselves. (Here’s where listening to our communities is important, and UX practices can be helpful. We might need to shift our thinking to wanting to hear where the barriers and risks are to different people. And we can also consider the UX practice of developing personas as a way of changing our perspectives and thinking through different impacts on people who are in different situations.)

And things I try not to do:
– Think I need to know everything before asking questions or starting to advocate for privacy. We can legitimately care about something without being experts.
– Censor myself because I worry about someone being Mr Gotcha (e.g. people claiming privacy is all or nothing, or who will criticise me for being on social media, or having a phone, and also caring about privacy ). We all live in the world.
– Gather personal information just in case, or just because I can. (The safest data is the data we don’t collect.)
– Be afraid to be “that person” who always asks about privacy. (I’m starting to feel proud of being that person.)

Source: https://thenib.com/mister-gotcha 

“Librarians and other information workers respect personal privacy, and the protection of personal data, necessarily shared between individuals and institutions…. The relationship between the library and the user is one of confidentiality and librarians and other information workers will take appropriate measures to ensure that user data is not shared beyond the original transaction.”

The International Federation of Library Associations and Institutions (IFLA) Code of Ethics for Librarians and other Information Workers

Some recommended reading and further resources

For inspiration:
– Stanford Libraries’ “Statement on patron privacy and database access,” co-signed by many heavy hitters, including Harvard, Johns Hopkins, Princeton, and MIT, and which begins: “Many leading providers of digital content to libraries in North America are changing the way they provide access to library patrons. Instead of allowing anonymous access via well-established channels, these providers are increasingly seeking personally identifiable, individual patron data. Often these efforts to gather more patron data are bundled into efforts to “enhance” or modernize platforms as the sector moves towards single sign on, and away from traditional, IP-based access. The providers have many possible drivers to gather this data: personalization, analytics, marketing, et al. This approach is unacceptable.” [emphasis mine]
– Cornell University’s Privacy Services page, including a powerful statement about licenced resources, which includes: “The Library fights against these privacy degradations in solidarity with our peer institutions. Whenever possible, we negotiate with vendors on licensing agreements for online resources in order to secure strong privacy protections for our patrons on and off campus. When we are unable to negotiate changes to invasive policies, we weigh alternatives and proper actions, including canceling subscriptions, if necessary.” [emphasis mine]

Selected background reading:
– From 2016, but still very relevant and helpful for thinking about the real risks of sharing patron data, “Patron data and the fear of surveillance: some thoughts,” by Martin Patrick.
– “Librarianship at the Crossroads of ICE Surveillance” (In the Library with a Lead Pipe, 2019) by law professor and librarian Sarah Lamdan, which begins, “As a fellow librarian, I’m here to warn you: ICE is in your library stacks. Whether directly or indirectly, some of the companies that sell your library research services also sell surveillance data to law enforcement, including ICE (U.S. Immigration and Customs Enforcement).”
– “Addressing the Alarming Systems of Surveillance Built By Library Vendors,” SPARC, April 2021, explains why “The transition to online platforms for education and research—even open ones—has created new, complex, and unprecedented threats to libraries’ commitment to protecting user privacy.”
– “Ethics in Research Use of Library Patron Data Glossary and Explainer,” from The Digital Library Federation Technologies of Surveillance Group, is about the risks of gathering data on students.

Just two of the people worth reading regularly (if you don’t already):
– Cory Doctorow (@doctorow on Twitter): outspoken and plain-language takes on privacy, surveillance capitalism, and technology. E.g. “LinkedIn to Libraries: Drop Dead.”
– Dorothea Salo (@LibSkrat on Twitter): an academic librarian and library-school instructor who writes about security and privacy. E.g. “Physical-equivalent privacy.”

About the author

Janis McKenzie is a user experience librarian, writer, occasional singer, and former campus radio person.

These opinions are solely her own.

Getting back on the horse

A lot of the time I don’t even think about my concussion anymore. I still have symptoms, but they don’t interfere as much as they used to, and I’ve mostly learned to tiptoe around them — at least in my day-to-day life.

Work usually feels okay, unless I am in a meeting and there are voices and other sounds (or even movement) all around me, or unless I need to pay attention to something for more than an hour at a time without some kind of break. At home and socially I am mostly pretty functional, although I still have trouble with multitasking, even listening to someone while doing something, no matter how simple that something is.

But mostly I’ve been feeling pretty good, pretty “normal,” doing my usual things.

A little over a month ago my doctor suggested I start riding a bike to work on my balance, so I got out my rickety old 7-speed and headed out for a casual ride around the neighbourhood.

I could barely keep it upright at first, but I made it — a bit wobbly on the mercifully quiet side streets — for a few blocks and then home again.

It wasn’t about getting anywhere, or getting exercise. It was about relearning all the tiny bits of attention that have to be paid at once, to the hazards on the road, to traffic, to decisions about changing gears, to hand signals, to deciding on the best route, to keeping the bike moving forward, to staying on. Much as listening to music since the accident has turned into a sensation of hard mental work to deal with all the separate components that need to be processed, riding the bike felt like having to juggle a lot of things at once.

Now when I take my bike out I think of it as a kind of training exercise. I put a book in the pannier and go a few blocks to somewhere I can sit on the grass and listen to the swishing of wind in the leaves of street trees, and then I rest for a while, then turn around and come back.

It’s gradually getting easier.

So four weeks ago I went back to my riding lessons.

I used to be the one who always wanted to ride the most spirited and unpredictable horses, but this time I was happy that the instructor assigned me to Oscar, a sweet, soft-coated bay gelding with a white blaze on his face, a cuddly teddy bear of a horse. For the first lesson, even tacking him up was hard for me — nothing about it felt familiar — but none of it was Oscar’s fault. He was unendingly patient.

Then, in the arena, the other riders were cantering and going over small jumps, and I had to concentrate just on feeling stable at a walk and trot. Even going so slowly it was too tiring to try to pay attention all at once to the placement of my feet, my hands, my sitting bones, my centre of gravity, to steer the horse, to use my legs, to hold the crop.

The lessons since then have got very slightly better. I’m still the slowest, so slow that my old self would have felt humiliated at being so inept. When the instructor explains steps for us to follow, the others grasp the exercise easily, but I can’t hold the different elements or their order in my head, along with all the physical actions I have to pay attention to. It’s too much.

The difference is that I know how far I’ve come, and how lucky I am to be here at all.

So while it is hard to watch the others, and it’s hard to tell the instructor over and over that I’m not ready, that I’m satisfied just to go around the arena working on the most basic things, things a small child could do without thinking, more than anything I’m glad to be there.

I’m back on the horse.

Oscar snuggling up to another riding student, spring 2017.

The long long tail

The accident happened more than seven months ago.

There are times in the day, especially when I’ve had enough sleep, when I feel almost like my old self. I still think (often!) about how lucky I am. It could have been so much worse. I’m alive, I’m able to work, I can do a lot of things I used to — although not all.

I’m no longer following the regime I did in the early days. Now the goal is to slightly and consistently push at the limits — work as many hours as I can, be around as much noise as I can — to find the edge where I get exhausted, where I just can’t do it anymore, and then to rest for a while, and try again later. It’s satisfying and a relief to see that being able to do the work is coming back: the older, more integrated stuff sometimes almost as if it never left; the newer, more freshly learned things slower to return, but there. (I remember when I couldn’t read an academic article or even understand all my email. That is feeling farther and farther away now, thankfully.)

5817043937_c301d3c396_z

https://www.flickr.com/photos/nishanthjois/5817043937

What counts as “rest” is different now too, and hard for me to really understand, let alone explain. I know it means quiet, and not too much light, not too much sensory input, but that can be hard to find in the outside world, like a workplace. (It can even be hard to find at home, especially as a parent.) And mysteriously, although I can sit in a noisy cafe or restaurant and tune out the background noise enough to talk with a friend, if I am in a room with colleagues and hear them talking around me, it’s too much — as if these real people who are familiar to me must be paid attention, from all directions, all at once. The places near work that I thought were peaceful, where I used to go at lunchtime to sit quietly, are too loud/too bright/too busy, and give me a headache, or that having-to-solve-math-problems feeling I still get from a lot of music. The sound of rain on the car roof, the gentle “white noises” that are supposed to be so relaxing, are the opposite now. It all adds up, and I get more and more tired as the day goes on, no matter what I’ve done to try to get away from the overstimulation. Sometimes wherever I am I’m overcome by a need to get home, and there is nothing else I can do that will help me to feel better.

The rate of recovery is feeling even slower now. This is the long long tail of it, I guess. Maybe it will be months more before I can go out to see a band play live again. (I don’t want to think about the possibility that it might be even longer, or not happen at all.) There are still types and frequencies of sound that make me feel overloaded and anxious immediately. I still stutter and have to search for words, but not as often. I still find myself forgetting very strange ordinary things, like to put the filter in my Aeropress before I add the coffee, but usually only on mornings when I haven’t slept well.

I’m doing much better than I was.

Alice's_Adventures_Under_Ground_-_Lewis_Carroll_-_British_Library_Add_MS_46700_f15v

Manuscript of Alice's Adventures Under Ground, The British Library.

Slowly, slowly, slowly (concussion recovery)

It’s slow.

It’s really slow.

It’s so slow sometimes it feels like I am never really going to get better.

And at other times — brief moments here and there — I’m starting to imagine that I’m better already.

But mostly, it’s slow.

baby tortoise hatching

These days I occasionally feel that my symptoms are not totally new and different, but on a continuum with the way I used to be. I used to get exhausted at the end of the day sometimes, and then once I was home again I would get too emotional about something that didn’t matter — and now that still happens, but a lot sooner. I used to struggle sometimes with learning the new technical aspects of my job — and I still do, but at a much much earlier stage. (Although the truth is I haven’t been learning new technical skills lately. Mostly I’ve been working at recovering the skills I had before.)

One thing that is new is the sensory overload. I really did used to be the girl who could study in the middle of a band practice, sitting on the floor between the bass amp and the drums. Now in an office the low-volume humming of fans I had never noticed before distracts me and makes me anxious. And when I hear people talking in the next room it feels exhausting to me, as if I’m trying to decipher a conversation in a language I don’t know, or have to solve a hard math problem by hand.

Listening to music is tiring in exactly the same way. It demands attention and mental processing — it’s not something that can be enjoyed or tuned out. That means I still haven’t been able to listen to my favourite albums, or even songs. They’re too loud, too busy, too complicated. (Not by any reasonable standards of music categorisation, mind you, just according to my over-reacting brain.) Actually playing music again feels very far away; I haven’t been out to see a live band, or plugged my guitar into an amplifier, in six months.

And it’s not just sounds. Bright sunlight makes me want to put a thick blanket over my head. If anything flashes or blinks in my line of vision I have to turn away or switch it off immediately. This afternoon I got disoriented in the freezer aisle of a store in my neighbourhood, from the way the lights reflected in the tall glass doors on both sides of me. The other day I was about to walk a short distance from the library where I work to another building, when I saw the crowd of people moving  between me and the entrance I was heading to. I had to turn back, overwhelmed just at the sight of so many individuals, as if every one of those people needed some kind of mental attention.

bright red and purple marimekko socks on a bright red shag rug

Sensory overload: loud socks and rug.

These things are gradually getting better. (Very gradually — see those first few lines.) I’ve been able to listen to the oldies radio station in the car again for a song or two at a time — or until they play something odious. (One downside to the returning music tolerance is the reappearance of persistent earworms. For some reason the stickiest ones so far have been ’70s songs I heard by accident: “Two Tickets to Paradise,” “I Was Made for Loving You,” and a song I won’t name by a band I can’t bear, The Eagles. I was relieved a couple of days ago when my brain lurched ahead a decade and got stuck on Split Enz for a while.)

Well, there is one piece of new, good news I can report. After months of trying, I finally managed to write some song lyrics last weekend. They might be dreadful, but it’s the first actual creative work I’ve done since the end of August.

Onward!

Instant enlightenment — or not (concussion recovery)

There’s a little joke I made to myself shortly after the accident: all this time I’ve spent trying to learn meditation, how to focus, how to live in the moment, how to do one thing at a time*, when all I really had to do to find enlightenment was fall off a horse.

It’s not true enlightenment, of course, but the concussion really has forced me to do things with intention and one at a time, to go slowly, to give the task at hand my full attention. It shut off the constant distracting buzz of ideas and questions (and self-doubt) that used to run in the background of my thoughts and interject sometimes overwhelming possible outcomes (and self-criticism) when I had to make a decision.

boardwalk in lynn canyon park

Lynn Canyon in North Vancouver

In the past few weeks this swarm of background bees has started to come back sometimes, but in a much quieter and more subdued way. As it grows stronger (I’m assuming it will), I’m going to need to work to remind myself of how it felt not to have it there, to remember that the decisions I made without that hyperactive internal editor were just fine, and to try to recall that enlightened-type sensation.

I felt it last night, when I went to see Howl’s Moving Castle at a movie theatre. I’ve seen it at least four or five times before at home, but on my small screen and dubbed into English; this was in Japanese with English subtitles, beautiful to look at, and loud enough that I had to put my earplugs in. (I always do at movies these days.)

Unlike the first couple of times I tried to see movies after the accident, I didn’t suffer sensory overload — at least not to the point of discomfort. This time the experience was intense in a way that was really pleasurable. I was mostly tuned to the visuals (as if paying attention to the music too would be too much): highly conscious of the backgrounds in each shot, the colours, the subtle gestures of the characters and their clothes, to the point that I wanted to slow things down to catch even more detail. (How had I never really noticed all the magical psychedelic wonders of Howl’s bedroom before? I could spend days in there looking at everything.) I was also much more aware of the symbolism and classic fairy tale elements, and especially struck by the non-fairy-tale-like complexity of Howl’s personality (he’s a mass of adolescent-style contradictions: generous and self-centred, impulsive and persistent, courageous and cowardly, outspoken against war and quick to battle — and so on), while Sophie is the iconic folktale heroine, the victim of a curse who stays kind and positive and never gives up.

howl's bedroom

Source: http://oh-totoro.com

It’s all obvious enough, but it *felt* like the kind of experience people try to find through hallucinogens or spiritual retreats. When I walked out of the theatre a sense of extreme awareness and presence stayed with me, a sensation that things were exactly as they should be, and were going to be exactly as they should be.

I’ve honestly never felt that before.

At the time when I first made the joke about instant enlightenment, I thought it would be foolish to hope that I might be able to hang onto this in some way as I got better. It’s a surprise to discover that after after just over four months I have some access to this sensation.

Maybe I’ll be really lucky and with some careful attention and work will be able to make it last.

lynda-barry-the-groove

From the wonderful Lynda Barry, via Artnews.com.

*In addition to daily meditation, this has included a lot of listening to Pema Chodron.

The long plateau — and small surprises (concussion recovery)

I recognise this feeling from almost every time I’ve had the flu or even a really bad cold: that certainty that I am never going to get better.

It’s been three and a half months since I fell off a horse and got a concussion. And there are hours in the day — some days — when I feel “normal,” like my old self. (Or maybe I should put “feel” in quotation marks?) But a lot of the time — sometimes for a couple of days in a row — I feel worse, and like I’m not recovering at all. On those days I feel fragile and easily overwhelmed, emotional. Getting one or two things done in a day is too much. (My to-do lists are already laughably modest: online banking, renew library books, buy milk — but I still have to whittle them down.)

Everything I am able to accomplish is only through slow focussed grinding effort, and when whatever it is gets thwarted I get completely flummoxed, and don’t know what to do next. The problem-solving part of my brain is so slow that I have to give it a few hours or a day to let the wheels turn, and then if I’m lucky I might see a solution — and one that would be perfectly obvious to you, or maybe even the old me. (For instance: bought the wrong thing at the store, and it’s stamped “final sale”. Oh no! Think for a day. Oh yes, I can ask the manager if she can make an exception.)

But in a way that’s the kind of thing I’d expect from a head injury.

There are other little things that surprise me.

For example: Coming up to Halloween, I had the idea that I would do some tweaking to a story I wrote a few years ago about a ghost. I knew I wasn’t up to actually writing, but I thought I might be in the right frame of mind to bring a fresh perspective to the plot. So first I wanted to get more familiar with the genre.

So I went online looking for ghost stories, and I asked for recommendations, and I read anthologies — but the stories were all really disappointing. None of them seemed spooky at all. Even the ones with the best reviews just felt dull and uninteresting. Could it be that I just wasn’t finding scary enough stories, or was my sense of spookiness impaired? (I started to wonder if the bump on the head had turned me into The Youth Who Went Forth to Learn What Fear Was — it’s probably a good thing I didn’t pursue that too far.)

800px-the_tale_of_the_youth_who_set_out_to_learn_what_fear_was_from_the_blue_fairy_book_by_andrew_lang_1889_1

An H.J. Ford illustration from the Blue Fairy Book by Andrew Lang.

Well, now I have an answer to that question, at least. This morning I happened across a discussion thread about haunted libraries. It’s an uncharacteristically bright December day here in Vancouver, but after I read a few posts about mysterious noises and books flying off shelves in the dead of night I started feeling like there might be someone else in my apartment. I definitely felt something.

So maybe my spooky-spidey sense is coming back, at least.

It’s important to note these things, small and silly as they are. Progress is progress.

From the Safety Harbor Public Library, Florida.

The getting-better trap (concussion recovery)

Things are always simpler, in a way, when you’re really unwell. If you’re lying on the bathroom floor because you don’t dare move too far away from the toilet, you know you’re too sick to go to work, and that someone else should make dinner for the family. You can focus on your immediate and urgent situation and let everything else go.

It’s all those subtle gradations of kind-of-functional and not-that-bad-really that are hard to figure out.

amphicar_red

An Amphicar is something that does a couple of things really not very well. Source: https://commons.wikimedia.org/wiki/File:Amphicar_red.JPG

I was lucky in lots of ways with my injury. Right from the beginning I was able to speak pretty clearly and keep up a reasonable conversation for a few minutes at a time. I was allowed to drive. And those things, along with my natural independence (even stubbornness), and the switching off of the anxiety channel, meant that I more or less tried to do things as usual and didn’t worry much about it — except that I was unable to do higher-level thinking, make technology work properly, pick up social cues, walk more than three blocks at a time, or do much of anything for more than ten minutes. After I went to the concussion clinic and started The Regime I started to understand better what was happening, and got determined to get better. I started to make some improvements (longer walks, being able to read a whole chapter of a novel at a time, less feeling hopeless and distraught over small things — like the time the kid ate some leftovers I was saving).

Lately I’ve started to have more good days, when I felt a lot closer to “normal” for longer periods. My forgetfulness, fatigue, and so on, feel more like they’re on a continuum with my old self, rather than being entirely new and catastrophic. On days like that it’s easier to forget or ignore the things I still can’t do, like reading above the level of children’s literature, sitting through any kind of noisy event without earplugs, decision-making beyond “what should we have for dinner.”

It’s also easier to ignore The Regime, since I don’t feel broken enough to be in urgent need of fixing. And there is always something that I know I should do right now before I forget — or some other reason to just keep going rather than to take one of the Regime-mandated breaks.

And I do hate The Regime. I don’t like rules and structure generally, and I don’t like the way The Regime breaks my day up into impractical teeny-tiny pieces. It brings out a lot of my rebelling-against-authority instincts. Actually doing it is hard. And so on.

My challenge now is to keep with it even when it doesn’t feel like I need it.

Because I do need it.

lego-hand-weight

Source: https://www.flickr.com/photos/pasukaru76/5268559005

Broken creativity (concussion recovery)

Having an injured brain is making me wonder about a lot of things. For instance, what exactly has been damaged? Should I be envisioning a top layer with a shallow bruise, home to really advanced processing, of some sort? A deep bruise with damage to high-level and really basic functions? What is “higher” or more complex or more valuable thinking, anyway? Memory retention and recall is definitely affected, and so is word-finding, and so is what I call the anxiety channel. Where do they fit in?

I have no idea. But one thing I feel pretty confident about — with no evidence at all, now that I think about it — is that creativity is a higher-level brain activity.

And my creativity is definitely broken.

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A very November-y scene. Source: https://commons.wikimedia.org/wiki/File:Svln_svln4821_ordubad_me_best_top_photography_resimleri_sekilleri_photos_creative_profil_maraqli_sekil_resim_fotograflari_fotograf_ornek_resimler_(351).JPG

November is National Novel Writing Month (NaNoWriMo), and usually I would be frantically writing some fiction, carrying around a laptop and hammering out poor-quality high-quantity prose every chance I get. Not this year. This year even writing these short blog posts has felt really tiring — and that’s without any plotting or character development (etc.).

Usually I’d be doing something creative, like writing song lyrics, or drawing. But I don’t feel any urge to do these things, for the first time in my life.

Come to think of it, this is a pretty boring post, isn’t it?

Creative Process Infographic

Wow, this looks complicated. Source: https://www.flickr.com/photos/lionsthlm/9174309962

Sound + vision part 1 (concussion recovery)

Certain sounds are really difficult. Loud noises, certain frequencies or pitches, too many sounds happening at the same time make me feel overloaded, so I start frantically looking for a way to make them stop. These symptoms are fading very gradually. For the first weeks after the accident, I had to put in earplugs every time the kid practiced violin, because there was something about that particular tone that made my brain go into a kind of panic mode. Now it’s only certain notes that bother me, or if it’s particularly loud, or goes on for very long.

earplugs

These days I carry earplugs with me everywhere.

I used to be someone who could concentrate even in really noisy environments. I could read or write in the middle of a band practice; I was able to focus in open-plan offices surrounded by phones ringing and discussions; I encouraged my child to play drums. At home I left CBC Radio One on all day and mentally tuned in and out of it without any effort.

Not any more. I went to see a movie last night and had to put in earplugs about fifteen minutes into it — and not even just for the action scenes, or because it was especially loud. It was just way too much. It required too much of me.

My songwriting partner and I have only met up once since the accident, and as soon as he started doing the thing that absolutely all guitarists do when chatting with a guitar on their lap — talking while randomly picking out notes and chords — I felt my brain start to overload, kind of the mental equivalent of my old failing computer freaking out when the graphics card failed. I had to ask him to stop.

For weeks I couldn’t listen to music at all — I could only get partway through a song before I felt overcome and exhausted. It felt as if every element, every instrument, every tone, every detail of the arrangement, required my careful attention. Then last Sunday afternoon I happened to tune into CFRO (Co-op radio), and they were playing very early rock & roll and doo-wop, and to my surprise it was okay, I was able to listen and even enjoy it. Maybe it was the simplicity of the arrangements, or the fact that they were such familiar songs. Either way, I’m taking it as a good sign.

I still get overloaded and hit the wall. (That’s what I call it when I’m suddenly unable to understand what I’m hearing, or suddenly have to stop what I’m doing, or suddenly just can’t cope, and I have to close my eyes or leave the room.) But it’s not happening as quickly or often as it was before.

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Source: http://www.uncamarvy.com/Silhouettes/silhouettes.html

Switching off the anxiety channel (concussion recovery)

I know this might sound like a really bad and unbelievable 1970s sitcom plot twist, or something out of a phrenology textbook, but I think when I came off that horse I injured the part of my brain that used to do most of the worrying. Maybe you know the kind of worrying: the constant chattering stream of bad news and scary things on the horizon that was always running in the background, and overflowed its banks sometimes just as I was trying to get to sleep, or when I was trying to make a big decision.

phrenology-journal

https://c1.staticflickr.com/3/2475/3846958183_6a55258e3d_b.jpg

Immediately after my accident I felt kind of calm, untroubled. Things felt simpler than usual. Oh, I didn’t remember the actual fall? OK, that was a concussion symptom and I should ask for help getting to an emergency room. Need to drive home from the Cariboo (with the doctor’s ok, of course)? Better take the slower route where I could make more stops. In a place where it was too bright or too loud? No apologies, just get out as quickly as possible.

I’ve heard that depression is common with concussions, but maybe I landed on the exact right spot that has shielded me so far. I think I’ve been goofily smiling more than usual. And instead of worrying (as I usually would) about all the things I can’t do right now, and if I will ever be able to do them again, it feels really clear to me that I have to focus on getting better, and there’s not much else I can do. (This is not the way my mind usually works. Pre-accident, I was a lot more likely to get overwhelmed by possibilities and paralyzed by guilt than to see a decision as straightforward.)

I told my family doctor that it feels like my anxiety channel has been switched off, and she laughed and said, “That’s because you’re not thinking.” (One of the many things I love about her is that I can count on her to be direct.)

She is probably right. Lately I’ve had a few windows where I can feel my mental processing coming back to the point where I can remember a few technical details of my work, or I get a joke right away. (Jokes have been hard, especially puns. It takes me a few minutes these days.) And last night I woke up at 4 am thinking about a Guy McPherson headline I happened to catch (I’m not putting in a link — if you want to know about him you will need to look him up yourself), and the recent US election — and I lay away for a long time trying to get back that simple stillness I remember from the early days after the concussion.

Maybe if I’m really lucky, just knowing I had it once will help me to get it back.

roz-chast-worry-tank-new-yorker-cartoon

http://www.condenaststore.com/-sp/Worry-Tank-New-Yorker-Cartoon-Prints_i8544488_.htm