Tag: brain

Concussion With a Side of Grief, or Vice-Versa [en]

Oscar died a bit over a month ago. Five weeks exactly, actually. Of course it hasn’t been simple. I’ve been wanting to write for weeks, but not getting around to it. It’s a pattern, isn’t it. It has been for years, decades probably. Wanting to write, needing to write, and not getting around to it. Other things are “more important”, always. Anyway, now I’m writing.

The first week I was off work, and that was a good decision. My brain was useless. You know grief badly messes up your ability to function, right. Well, put that on top of the brain injury that is already messing up my ability to function. So, good call.

Then I went back to work, a short three-day work week before the bank holidays. I struggled a bit, but it was OK. It’s weird, I keep wanting to say Bagha instead of Oscar. Is this a grief/cat thing, or is it related to my post-accident language issues? I was sad, but ok-ish sad, you know, because it was mostly a “good death”, he’d lived a long life, had good years with me, we’d managed his ailments as much as we could, and when it wasn’t possible anymore, we said goodbye before it got too bad. At least I hope. The worst was something I put a word on more recently: yearning. I missed him, simply said. I understood that he was gone and it was kind of ok, but I missed him.

With Oscar’s death I lost a lot of daily structure. His habits, medication schedules, etc. I’ve been working hard to get back to managing my schedule in some way. Not easy, and I’m not there yet. I realised that not having a “meal plan” for the next day led to me procrastinating dinner, because I’d end up in the situation where I’m hungry, I’m tired, my meds are checking out for the day, I not only need to stop whatever I’m faffing around with or engrossed in to make food, but I need to decide what I’m going to eat. And that’s what stops me, because at that point in the day, I have no decision capacity left, particularly when I’m hungry. So I’ve been paying attention to making a meal plan for the next day every evening after dinner. It helps a lot. It’s not 100%, but it helps – and removes another obstacle to me being in bed with the lights out and my eyes closed at some half-decent hour.

Week three was great. I thought I was out of the woods. My mood was OK, I was starting to not be jolted by Oscar’s absence each time I opened the door to the flat, I was getting meals and sleep back under control, work was good, I even spoke German for two hours and a half with my boss, something I would have been incapable of doing a month earlier. I reached Friday evening feeling like I had some energy to spare, and planned a little social life and a short hike for the extended week-end. Sad though Oscar’s death was, I figured that I was feeling the benefits of the major reduction in my mental load: no more worrying about medication schedules, about how he’s doing, about when the next seizure will be, about when it will be time, about how I will cope with his death.

Week four, last week, I crashed, and I didn’t see it coming. I was a bit tired but OK during the first couple of days. But Thursday evening, my brain collapsed. And all the rest collapsed. Because when your executive function is impaired, it messes up your emotion management, for example. It messes up your ability to stick to your schedule and your decisions – and simply, your decisions. It messes up your ability to stop when you need to stop, get done what you need to get done. Hello, downwards spiral. Last week-end, I couldn’t make it through a 45 minute conversation with a friend. In the days that followed, I was either stuck in some escape-activity, or feeling super sad, crying in the evening and not able to sleep. Grief of course, Oscar and all the little wagons the train of grief pulls along with it when it enters the station, but also discouragement because I’d crashed again, because I was so happy the week before, because once more, despite all the care I take to pace myself and watch out for warning signals and take it easy and be patient, I hadn’t seen it coming until it was too late.

I’ve been picking myself up these last few days. I’m still having a hard time, but I’m slowly functioning better. Frankly, so much effort for what sometimes feels like so little result. I am blessed that I have the very realistic prospect of recovery to hang onto, even if the timeline is uncertain. Maybe it’s a double-edged blessing, though, because I’m working with a moving target, which makes it easier to overshoot regularly.

I have a gigantic backlog of “to do’s”. It reminds me of the years before my ADHD was diagnosed – this was pretty much a constant state. It is not pleasant. Setting priorities is always very challenging for me, and the current circumstances make it so much worse. I’ve been trying to get my Digital Assistant up and running, and it’s proving a perfect metaphor for life: each thing you decide to tackle seems to spawn half a dozen new items to deal with. It’s like brain crashes: being forewarned and knowing the tricks and strategies isn’t always enough. Even having top-notch support, which I’m thankful to have.

The only thing I don’t have right now and which, I think, does me a disservice, is that I live alone. This means I have no “everyday help” for simple things like “hey, let’s eat” or “yeah, potting those plants this afternoon seems like a good idea” or “hmm, I noticed xyz these last few days”. It’s all between me and me. I have friends, but they don’t live with me, they don’t see me every day. I know living with people can bring on its share of challenges, of course. But it’s also a fact that recovery is more difficult when you don’t have day-to-day support, physically present. That’s one of the reasons that a Big Project of mine for the coming years is to get seriously cracking on a co-living concept for my senior years. But first, the brain needs to get back into shape.

I find the state of everything that has to do with administration really depressing. After decades of applying capitalist logic to public and customer service, we’ve been left with empty broken shells where a few harried drones try and keep things together as best they can, doing “their job” – but nobody sees the whole system anymore, nobody can, and even those that want to “do good” are promptly set back into their drone slots by whatever dysfunctional machine everybody is imprisoned in. It’s not the people who suck, it’s the processes, and even if somebody was responsible for repairing them, there are no ressources available. Enshittification is not just limited to Big Tech.

At work, I feel like I’m in a place where I can actually bring some change. But every other week, I’m hit by a wave of doubt. Am I being too ambitious, or even, is this hubris, to think I can move enough people to think a bit differently, work a bit differently? We’re also in a big machine that despite its qualities (and it has many), sometimes feels like a patchwork of parallel organisations that struggle to relate to one another. I think everybody working in a big company knows what I mean. I consider myself extremely lucky to have the chance to bring community (real community) in a space that is not used to it – but will I manage? I know I’m the right person for the job, and I am convinced it will work and that I can do it, except when I find myself wondering if it is maybe one of those impossible, system-fixing endeavours that will end up either crushing me or sucking me dry.

It’s very similar to how I feel about my recovery, actually. I know I’ll see the end of it, I know I’ll get better and that it isn’t wishful thinking because we are able to observe progress along the way, just as I can in my work, but every now and again I am seized by the fear that I might be blinding myself. I deal with the fear: have a little chat with it, and tell it to go back outside and play. But when I’m unwell, it’s a bit more complicated to convince it to leave me alone.

I miss Oscar. And there is another layer, where I just miss having a cat in my home. I’ve invited Juju to check out the flat this week-end. He’s shy, so we’re doing this carefully. Juju is the shyest cat I’ve had, I think. He’s not extremely shy, just normal-shy for a cat. Cautious. He hides when people come to the coworking space – my other cats didn’t do that. He needs coaxing. I leave the flat door open so that he doesn’t find himself trapped and freak out, give him a little treat-food inside, talk to him gently and invite him to look around, and leave whenever he likes.

I’d like to have him around when I’m in my flat. But I also don’t want to deal with “cat worries” right now: making sure he doesn’t get scared while he’s getting to know the place; giving him scratching-surfaces and protecting my tatamis which he’s already tried sinking his claws in once; food, water bowl, what about a litter try? How do I manage the “ins and outs” between the flat-floor and the coworking-space-floor where he has his cat-flap? Is there a risk he might start spraying up here (he doesn’t downstairs)? There will be a time for this, but right now, much as I’d like to be typing this on my balcony in feline company, I’m not ready for the work it requires. Getting myself back on my feet comes first – Juju is a stable situation right now, and can continue being one.

I’m starting to understand the seduction of the frugal life. Mine is the opposite. My life is full of stuff, both physical and not, and all this stuff generates work. Something as simple as having houseplants and a balcony: you have to take care of the plants. I like having plants! I have lots of plants. But lots of plants means a lot of plants to take care of. I know people who have zero plants. Imagine that! No plants to take care of. No pets. No car, no bicycle, no chalet, no coworking space, no boat. It could be just me, my furniture and my flat. Much less to manage. Oh, and my health – because that’s definitely a big chunk. Would it be worth it? Of course I’m answering no, but I can see how that answer is non-obvious. Is my life worth simplifying? Do I want to? Do I need to? Do I even want to think about this?

Today I could have taken care of my plants. I could have tidied up downstairs – at least, made some progress. I could have dealt with the mess at the entrance of my living-room, a hotspot that always seems to flare up no matter what I do about it, to the point that I can see I’ve given up on it. I could have inventoried my too-numerous jars to decide what I give, what I keep, and where, and moved them, or at least part of them, to the cellar. I could have done my taxes. I could have caught up with my snail-mail backlog. I could have worked on migrating DF to Discourse, I could have called a dozen different people I want to catch up with, I could have gone for a walk in the woods (ah no, I made a big hole in my heel yesterday with a piece of metal that slid out of my sandal, which reminds me), I could have repaired the zipper of my bag, stuck that piece of metal back in my sandal for good, repaired half a dozen other things I can’t recall right now, change the battery of my maybe-not-dead previous phone (ifixit kit waiting for me since… last summer?), and that’s just the start. I’m OK with not doing everything, with letting things slide, but I’d love to have a magic formula to help me pick what to do now.

If you’re still reading this, I sincerely apologise. I have to be honest, I’m writing this much more for me than I am for you. This is certainly not the most exciting blog post to read. And it’s getting long. You might be waiting for me to get to the point, but I don’t think there is one. I’ve been unwell, and feeling the need to write, but not too sure what, and well, here it is. I’m thinking on my keyboard. I appreciate you coming along for the ride, really. I hope you get something out of it, somewhere in between the words and lines and paragraphs.

Last week I finally printed out some photos of Oscar. I wanted to give a handful of people thank-you cards – his vet, for example, and my kind neighbours who dealt with his insulin injections these last years, when I was away. I can’t remember when I last printed anything. Probably when Tounsi died. I remember going to the photo shop, which still existed back then, and getting ten copies of a photograph. Now, I’ve discovered, there are machines in supermarkets where you can AirPrint your photos directly. The one at my usual supermarket only takes cash. Imagine that! Coins. I never carry any cash – so it took me a few attempts to manage to get there with the cash, with my photo selection, and with a functional machine (yep, it was out of ink or something). I did a first batch in another shop where you could pay by card, and discovered that unless you turned it off, the printer “improved” your photos by adding a ridiculous amount of sharpening. Anyway, I’ve got it figured out now, and I’m going to be printing much more photos in the future. Oh yay, another extra thing to do!

As I was hunting for nice photos of Oscar in Lightroom, back through the years, digging up and tagging a few thousand photos, I was struck by how much his life had shrunk. Of course that’s how it goes, we all know. It happens gradually. Seeing it in a space of an hour or two is jarring. He used to jump on the table. He used to groom himself, even the backside. He used to be all over the place. When did it stop? Little by little, I know, but I was almost shocked to see Oscar doing things or in positions that had faded from my memory. It made me sad and glad at the same time. Glad for the life he had, sad for what he had lost by the time it ended. I really hope I did right by him. I think I did. I hope I’m right.

I saw something on the socials that stuck with me: animals don’t care about length of life. They are in the now. They just care about quality of life today. We are not like that. We might want longer life even if it means it is not as rich as it could be, as it was. We’ll make the choice to cut off the leg and live the next 20 years without, rather than hang onto it and be gone in a year. Of course it’s a balancing act for us too – it’s not like we don’t care about quality of life. But for our pets, for them, that’s pretty much all there is. I’m aware there is a tension regarding these end-of-life decisions: because for the human who loves the pet, well, we tend to want longer. There is a balance to be found. These are really complicated questions, and I wrestle with them, I guess I always will. We probably all do.

I think of what Oscar’s life had become, as with Quintus. Was it really still worth it? It was for me, but was it worth it for them? Was it right? My evaluation was that there was more positive than negative for them – and when there wasn’t anymore, that’s when we stopped – but what do I really know? At this stage, I wouldn’t do things differently. But I do wonder. I don’t think it’s a bad thing.

Brains Get Tired Too [en]

It’s funny how physical tiredness is not something one would think to question. It seems pretty obvious. We understand that if somebody has spent decades using and abusing their body, they’re going to face consequences as they get older. If you’re doing extreme running, hundreds of kilometres, or an insane amount of walking, crossing continents, your body gets worn out. We also understand that as we age, we may still be capable of doing things, but it doesn’t mean it’s a good idea to do them. For example: I can still carry very heavy loads, but if I do, my back is going to remind me the next day that I’m not 20 years old anymore.

For some reason, we do not seem to apply the same kind of thinking to the brain. Or at least, I didn’t. Although we understand that the brain has limits – everybody experiences some degree of cognitive tiredness at some point or another – we seem to think that the consequence is temporary. We need a break, we’re done for the day, we need a good night’s sleep and then we can start over. We know about burnout and that sure, of course, you need to take the time to recover if you want to function correctly again. But wear and tear over years and decades does not really seem to be on the radar.

We don’t tell somebody who keeps pushing their brain day after day, month after month, year after year, that they should ease up a bit – as we would our sport-obsessed friend who trains 6 times a week and considers “rest” a 10k run. We look at performance (what are you delivering at work), but not at effort and actual “cognitive use”.

My accident has driven home for me, in a frighteningly clear manner, that “cognitive overtraining” is as much a thing as “physical overtraining”. I’ve been “cognitive overtraining” all my life, and for most of it, unaware that I was doing it or that there was such a thing.

I am really good at pushing myself. It’s not always visible, because I have a lot of ressources (one way to put it is that I am clearly towards the right end of the IQ bell curve) and therefore compensate well for my hearing loss and ADHD. But that compensation has a cost, even if it is not visible that I am compensating. I am only now starting to measure how much effort goes into “simple” things like following conversations and managing my daily life. I am in a somewhat paradoxical situation where many of the things I receive most praise and recognition for are those that cost me the less – and those that cost me the most go completely unnoticed. This means that I have trained myself, all my life, to consider the efforts I make as “normal” rather than recognise that I am pushing myself.

This also means I have internalised the idea that when I “fail” (and by that I mean: feel tired “without reason”, don’t manage to get around to doing housework, miss parts of what is being said) it is because I was not trying hard enough. Pushing myself is the norm.

I had a moment of realisation regarding that the other day. I went back to singing practice, which I hadn’t really been able to since my accident. I was a bit tired, but I wanted to go as we were starting a new programme which contains a lot of songs I like. So I decided to go and “take it easy” – something I’ve been trying to practice these last months. Going easy. I told myself “I’ll just go and not try too hard”. Very quickly, during the rehearsal, I realised how much effort I was putting in, despite myself. Concentrating really hard to understand what the director was saying. Paying close attention to try and sing the line correctly as soon as possible, and memorise things as I went along. I usually use the time when the director is working with other registers to learn lyrics and compare musical phrases to help me remember them. It was very weird to tell myself to “just relax” when the others were working, and “nevermind” if I couldn’t hear or understand what was being said.

Earlier, some time last year I think, I realised that when I had long meetings in German at work, I really had trouble being productive the next day. But I hadn’t gone beyond “ok, plan a light day the next day” in terms of drawing conclusions. I kept thinking that the main driver of whether I could perform cognitively or not was sleep. But it’s not.

According to the neurologist who is treating me for my post-concussion syndrome, chronic cognitive overload is a clear risk factor for this type of complication. It’s also a risk factor for worse recovery after a stroke, or worse outcomes in case of cognitive decline or dementia in older age.

This has given me an awful lot to think about regarding how I’m using my brain-as-organ in my life, and how things are going to have to change. Where can I save on my brain budget? Where is it worth expending effort? What else can I put in place to have a lower “cognitive burn rate” just to get through daily life?

I’m not too bad at managing the load I place on my body – now I have to do the same with my brain.

Sleeping in India and Putting My Brain Straight [en]

[fr] Le silence nécessaire au sommeil, c'est il me semble quelque chose d'acquis. Un segment du podcast mentionné avant-hier parle de l'Inde... je ne pense pas que donner des boules quiès aux indiens améliorera vraiment leur qualité de sommeil. Et sinon, je continue avec intention à reprendre mon cerveau en main, y compris pour l'administratif et la compta!

After writing my post the day before yesterday, I listened to the end of the two-part series on sleep from Freakonomics Radio. I like Freakonomics because they go beyond the easy fluffy questions, and dig down to where things can be uncomfortably unclear. Maybe I should read the book.

Liseron coloré

Anyway. There was a segment on sleep in India (Chennai to be precise), and some of the comments stuck me as a little… ethnocentric and uncritical. Yes, India is noisy, definitely. And we westerners have trouble sleeping in the noise.  But remember that we have had to learn to sleep in the calm. The womb, where we all come from, is a noisy place. It is only with time that noise starts waking us up.

I remember hearing about the miller who will wake up when his mill stops (sound gives way to silence). More recently, I’m sure I read something about a study where they put volunteers in a terribly noisy sleep lab and kept their eyes open to flashing lights, and they fell asleep just fine. (Couldn’t dig it out, if you find it let me know.)

Many Indians, in my experience, have no trouble whatsoever sleeping in the noise. Some cannot sleep without the noise and wind of the fan whirring above their heads, even when it is cold. So, I’m not sure that providing Indians with earplugs will actually help them get better sleep.

Also, one thing that stuck me in India is that a bed is just “a place to sleep”. It seems to be less of a private, intimate place than in the West. In that respect, I’m not sure one should interpret people sleeping in weird places the same way one would here: maybe they’re just sleeping, and not “passed out from exhaustion”.

This Indian sleeping comment aside, I’ve been mulling over my efforts to get my brain back on track. One thing I didn’t mention in my last post was that I am trying to put more intention in things. If I realise I have forgotten something, I make an effort to recall it. I make an effort to be organised and not let things slip. I am making a conscious effort to get back on top of things, and it seems to be working.

Obviously it’s not enough to help me keep track of everything I’ve read, because I can’t seem to find the piece which talked about this guy who made a conscious effort to floss every day as an exercise in self-discipline. If you can’t get yourself to floss each day (less than a minute of your time!), how can you hope to stick to bigger things?

So, I’m flossing. These last two nights, I also went to bed with my phone on airplane mode and in the living-room — just me, the cats and my kindle. This morning, I didn’t touch my e-mail or social media until I had showered, had breakfast, and headed down to the office. Environment design…

I’ve also decided to stop being flaky about certain things, in particular around admin and accounting. I have no love for either of them, and like to say that I am with financial stuff like some are with algebra: my brain just blacks out. Well, enough of that. It’s not rocket science. If I was capable of doing Fourier transforms at some point in my life, there’s no reason I shouldn’t be able to remember which papers I need to bring my accountant for my taxes and accounting each year. Hell, I’m even enjoying listening to Planet Money!

LeWeb13: Ramez Naam [en]

Wiring the human brain. Sending information from one’s person mind to another. Nexus: mankind gets an upgrade.

LeWeb'13, Ramez Naam 2

Keanu Reeves “I know Kung Fu”.

Working circuit printed on human skin, with sensors & ambient supply. Google glass style contact lenses. Pill cam, in use since 2008 in thousands of patients (clinical trial). 3 cameras taking 30fps from inside you.

Let’s go beyond that and talk about the brain. Internet of things: the “thing” we’re the most concerned about is ourselves.

Cochlear implants. 200K people that no hearing aid can help. Data sent directly to the brain.

First motivation for these “cyborg” technologies is medical.

Also progress for sight. Man who lost an eye at 18, and the second (accident) a year later. Now he has a CCTV camera on his glasses. Limited mobility vision. Can very carefully park a car. 16px by 16px grid. Terrible, but a quantum leap up from 0px, and a proof of concept: we can send digital vision to the brain.

Another man, paralysed from the neck down and vocal cords destroyed by tracheotomy. Electrode in motor area of his brain allows him to type on computer.

Damaged hippocampus tissue can be replaced by chip.

Increasing performance in certain tasks in monkeys (Planet of the Apes).

Two monkeys in two rooms with electrodes in their auditory cortex, connected. One monkey hears one sound, the other hears the same sound and knows what it means.

Rats: one is trained to respond to a series of lights => specific lever. Second rat performs much better on the test than if he had no prior knowledge. (Thousands of km away.)

Two computer scientists playing a video game as a single player thousands of miles away.

Hippocampal bridge: prior knowledge of the maze for a second rat.

This is far ahead, more than 10 years.

Issues: this is your brain. Who wants to play with it? If you’re blind of deaf, benefits can be great, but if you’re healthy… ahem.

Digital stuff never malfunctions and is never hacked. (NOT)

You don’t want the NSA in your brain either…

All that said, Ramez is very optimistic, because of the history of information technology.

The printing press increased the pace of innovation and scientific progress. Newton was able to write his book only because he was able to absorb the ideas of hundreds of others before him through books. And printing allowed him to spread his ideas to hundreds and thousands of others.

Increase our ability to spread ideas => more ideas. Also, democratisation of knowledge. Changed the relationship between the government and the governed.

Even the idea of civil rights was only made possible by the cheap distribution of new disruptive ideas.

See things through others’ eyes? Maybe literally possible in the future.

Habituation, Variety, and Intermittent Rewards [en]

[fr] Habituation, variété, récompenses aléatoires... il me manque un petit quelque chose pour lier tout ça ensemble.

Here’s another post in the “variety is the spice of life” series. My first intuition that it might make sense to vary the type of blog posts one produces to sustain reader interest didn’t actually have to do with my readings about habituation in The How of Happiness, although it was at the same moment and I then quickly put the two together.

When I initially suggested varying blog post type/topic to somebody who had a blog which was made of a series of very similar posts, I was thinking of intermittent rewards. So now, I’m wondering: how does what I’ve understood about habituation, the need to vary one’s happiness strategies, and intermittent reward reinforcement fit together?

Clearly, a system with intermittent rewards keeps your brain on high alert. Is varying one’s happiness activities also simply just keeping one’s brain alert, by providing “rewards” (the boost one gets from doing something that makes one happy) not on a completely regular schedule? Do intermittent rewards work against habituation?

I feel I’m onto something here but I can’t quite bring it all together.

We have: habituation => need for variety; vary reward schedule => increased reinforcement. Are we talking about the same thing (brain-wise, are the same phenomenons/chemicals involved) — or are these two similar things, that look similar, but are in fact two separate issues? What is the missing link here?

If you have thoughts, data, research, or case studies around this, I’m interested.

I also think there is something in this which explains why we have “phases” (go a lot to the cinema during a few months/years, then less, or read a lot, then less, take up a hobby, abandon it) and why (at least in my case) we play games for a moment, then move on to another one (I’m playing Zombie Café right now but feel the need for something new soon).

Brain Downtime [en]

[fr] On a besoin de débrancher son cerveau -- avez-vous assez l'occasion de le faire?

My brain needs downtime. So does yours.

We’ve managed to make our lives so efficient that we’ve removed all the downtime that used to be part of them. We can work on the train, listen to podcasts while we clean and cook, why, we even read on our iPhones as we walk through town.

Sleeping just doesn’t cut it. Of course, we need sleep (that’s also body-downtime), but we need awake-downtime.

What’s your downtime?

For me, reading fiction and watching TV series qualify as brain downtime. My conscious mind is immersed in fiction, though I’m sure a lot is going on in the background. Sailing and judo qualify to, as does riding my exercise bike if I’m listening to music rather than a podcast.

When I’m on the bus and reading FML or flicking idly through my Twitter stream, is that brain downtime?

When I’m walking in the mountains, drinking a cup of tea on my balcony, watching the sun set, taking a bath, or meditating, that’s definitely brain downtime.

Do you get enough brain downtime?