Brain Crutches [en]

For some time now, I’ve been feeling with my time as one feels with space when on crutches. My world has shrunk.

On crutches, everything is further away. You can’t drive places. You can’t hop on your e-bike and be there in 5 minutes. Taking the stairs requires a rest at the top. Sports are off the menu.

These days, everything seems to take more time, directly or indirectly. More time to do, but also more time to recover. I have to stop and catch my breath all the time. (Figuratively.)

I’ve barely started my day, and suddenly it’s mid-afternoon. Or early evening.

I think about what I want to do today. I modestly rein in my ambitions. I’ll write a blog post. And maybe pot some balcony plants.

I’m tired, the blog post isn’t written, the plants remain unpotted. Will I read, take a nap, try and set up the TV screen to watch a movie?

The TV screen has been waiting for me to set it up for movie-watching for weeks now.

Who ever heard of procrastinating diving into the two last seasons of Doctor Who? Because that’s what I’ve been doing.

Another day has gone by. I don’t like the fact that time is going faster, that I’m going slower, that I need to go even more slowly, and that the road ahead will probably not be made of more and more things to do, make, read, discover, live.

I still want to do all of the things – and more.

I’m getting better at saying, with an accepting sigh “well, no, that’s not going to happen today.” We’ll see what tomorrow brings. But I’m not happy about it.

After so many years trying to fight procrastination, and these last few years which felt like I finally had a go at beating it (thanks methylphenidate), it feels very strange to willingly give in to the underlying discouragement that has always accompanied facing something to accomplish, and say “if it feels like too much effort, I’ll just not do it now”.

I’m realising how much I have learned to push and push myself, power through, and how instead of learning to listen to what my tiredness and discouragement could be telling me, I learned to beat myself up and feel like a failure for not managing to push them aside yet again.

It’s very strange to be allowed to allow (!) myself to be tired or not have the energy for something. And it’s scary, because the amount I feel able to do if I really listen to myself is not very much.

I know I’m still in recovery. Things will improve, I’ll have more energy, I’ll be less tired, doing will cost me less. But I can see, very clearly, that even once I’m back on my pre-accident feet, as I will not go back to pushing myself as I did before, I will do less. Hard choices will have to be made.

Or, with a bit of luck, if I have managed to grieve the unrealistic expectations I place upon myself enough, maybe they won’t be that hard.

Writing After Breakfast [en]

Maybe I should kick off my day by writing. After breakfast of course. Do you know this blog is going to turn 25 in a month or so? It sounds crazy. Almost half my life. I remember the early days, before Facebook, when a blog post was a small thing one wrote, not a full-blown essay. I would sometimes post more than once a day. I had blogging friends who blogged every day. I did, for long stretches. Not because it was a decision, but because the blog was where we lived online.

Now, for me, it’s still clearly facebook, after all these years. That’s where people hang out. This blog feels a bit lonely. For many years, writing here has felt more “private” than Facebook, isn’t that weird? Both are quite public, but the audience isn’t the same.

Anyway, maybe I should kick off my day by writing. Breakfast comes first, I learned that years ago. Interacting on an empty stomach is not a great way to start the day for me – it usually goes sideways. Breakfast, then write a bit. It’s not like my balcony can’t wait another half hour or sixty minutes for me to get to work turning it from a pile of stuff to a cozy hangout. I’m on my balcony already, actually. You can see the photo.

My balcony has been waiting for weeks. It’s been waiting for weeks because I struggle with managing my time and activities since my accident two months ago. I’ve always struggled with that, you know that, but since my ADHD diagnosis and medication, it had improved a lot. Night and day. Now I feel I’m back to pre-diagnosis days, although I’m taking my usual work-day dose of medication. Not to worry, it will get better. It’s getting better. I am thankful to have the time and space for that.

So my balcony has been waiting for weeks because I struggle with time and task management, and also because unexpected tiredness will hit me. Not unexplainable, just unexpected, because I’m still in the process of understanding what costs me in terms of cognitive effort, and where my limits are. Again, not to worry: it is improving and will improve. But for example, this Saturday I was pretty much completely non-functional after a first small session of cognitive training. At least, that’s my working assumption at this stage – that this session is the cause. I didn’t expect it, but I was warned it could. We’ll see if the next session brings similar aftereffects, or if it was a coincidence and the reason is elsewhere.

Anyway: I had planned on “doing my balcony” Saturday, and I didn’t.

Yesterday I would have had some time for it, but instead I ended up taking the cat to the vet for a few stitches. He’s fine, though unhappy about his cone. I feel for him. I also helped a friend put together a non-IKEA wardrobe. I love IKEA furniture even more now. This happens each time I grapple with non-IKEA furniture design and instructions.

The small stack of yesterday’s dishes can also wait a bit, so can yesterday’s grocery shopping which is patiently waiting on the kitchen floor, half out of its bags. The cats can also wait a little for their medications. Insulin is done, that’s the most important, and I have had my meds, which is the absolute priority in the morning to increase chances I actually have a morning to do something with, be it tidy the balcony, put groceries away, or write a blog post.

As facebook goes downhill in terms of functionality, and as the world goes downhill with it. Between what’s happening in LA right now and the interception of the Madleen, it’s taking more energy than I have to keep the lump in my throat down and the tears out of my eyes. There is a time for trying to change the world, and a time for self-preservation.

My friend Pierre Crevoisier wrote about selective indignation last month. It struck a chord with me. We cannot care about everything. Just like we cannot do everything, we cannot get up in arms about everything. We cannot fight all the causes. We are finite, and though the world is too, at our scale it is not. And there will be times in life when our finitude is even more finite than usual. When maybe just facing more than the balcony that needs to be done, the dishes and the groceries, the cat’s medications and one’s recovery, and a few words thrown on a screen is just not doable today.

Bon allez, je me lance [en]

Je pense qu’il faut que j’écrive. Que ça va m’aider. Ça fait des semaines que je me dis ça, et que je veux écrire, et que je n’écris pas. M’organiser c’est compliqué, certes. Mais il n’y a pas que ça. J’ai peur de découvrir des choses qui ne marchent pas. Depuis mon accident – je sais, il manque des épisodes, on y reviendra – je pense à Agatha Christie, dont les écrits révèlent, après coup, qu’elle était atteinte de la maladie d’Alzheimer.

Alors moi je n’ai “que” un syndrome post-commotionnel après un trauma crânien mineur. On adore l’attribut “mineur”, qui signifie qu’il n’y a rien de visible à l’imagerie, ce qui ne veut pas dire que ce n’est pas “grave”, même si bien sûr c’est moins grave qu’un trauma crânien pas mineur (on s’entend). Et en effet, ça fait maintenant bientôt 3 mois que par moments, mon cerveau ne fait pas ce qu’il devrait. Enfin, qu’il ne se comporte pas comme d’habitude. Que je ne le reconnais pas.

C’est flippant mine de rien, d’être blessé au cerveau. Surtout quand c’est une “petite blessure”. Si on en est à ne plus pouvoir s’habiller ou parler, le problème est bien évident. Mais quand c’est la concentration qui est en PLS, que la fatigue débarque alors qu’elle n’a pas été invitée, qu’il y a des petits signes “anodins” qu’on remarque de l’intérieur parce qu’on se connaît bien mais qui ne se voient pas de l’extérieur, on se retrouve dans le terrain des maladies ou handicaps invisibles que tant de nous connaissons bien. (Evidemment, je ne dis pas que je souhaiterais avoir plus de problèmes plus visibles que ceux que j’ai!)

Donc le flip, il est double: je vois bien que mon cerveau est abîmé en ce moment, première chose flippante, mais aussi, est-ce que le monde extérieur et en particulier les soignants (au sens large) vont prendre ce problème au sérieux? Et jusqu’où? Les difficultés de concentration, la fatigue et les maux de tête qui m’empêchent encore de travailler, c’est une chose. Et déjà ça c’était pas forcément gagné, à un moment donné. Mais quid des “petites choses” plus subtiles, mais qui touchent à des capacités importantes pour moi – que ce soit pour ce qui est de mon rapport au monde, ou en tant qu’elles participent à mon identité?

Les mots, c’est un peu mon super-pouvoir. Et j’ai peur d’avoir perdu quelque chose, quelque chose de difficile à voir, et dont je ne sais pas si je le récupérerai. Et j’ai peur qu’en me confrontant à l’exercice de l’écriture, ça se révèle – comme l’écriture a révélé la maladie d’Agatha. Ce n’est pas par rapport au regard des autres que j’ai peur. C’est par rapport à moi. J’ai peur de découvrir des choses que je n’avais pas vues. Parce que mon cerveau qui boîte, c’est comme ça que ça se passe. Je découvre avec étonnement qu’il a fait un truc inhabituel, ou pas fait un truc habituel. Ou n’arrive pas à faire un truc auquel je m’attendrais. Je sais, c’est pas très précis. Ce que j’essaie de dire, c’est qu’il m’arrive des trucs que je ne vois pas venir. Pas des trucs graves hein. Mais pour moi qui suis une plutôt (très) bonne observatrice de moi-même et de mon fonctionnement, c’est très déroutant.

Donc écrire, d’un côté je me dis que c’est un bon exercice, et de l’autre j’appréhende ce que ça va me révéler.

Un de ces “petits soucis” que j’ai remarqués depuis mon accident, c’est que j’ai parfois de la peine à “sortir” un mot. (“Recall” en anglais.) Le mot est bien là, je sais qu’il est là et que c’est celui que je veux (ou un bon candidat), mais il ne vient pas. Je tends mon bras mental vers ma bibliothèque de mots, et il n’est pas là sur l’étagère là où il devrait être. Alors bon, c’est pas dramatique. Je pense que la seule personne qui remarque, c’est moi – et maintenant, mes interlocuteurs à qui je dis de temps en temps “zut, attends, je trouve pas le mot, me dis pas! … Laisse-moi chercher, attends!” – et je cherche, et au bout d’un moment, généralement je le trouve, et je suis contente. Ça n’arrivait pas avant, ou du moins pas autant. Et pas avec autant de difficulté à rapercher le mot si jamais il s’était égaré.

Un autre, sur lequel je viens de réussir à mettre des mots: je remarque parfois que mes souvenirs sont un peu lacunaires. Je sais que j’ai parlé de ceci ou cela à quelqu’un, mais je ne sais plus à qui. Ou je ne sais plus si j’ai fait quelque chose ou pas. Ou alors, je me replonge dans un épisode passé pour tenter d’en récupérer une impression, un sentiment, une idée, et ça ne vient pas. Clairement, ça pouvait m’arriver avant, ça. Mais post-accident, c’est bien plus fréquent. Est-ce que ça concerne les souvenirs post-accident, ou aussi les plus anciens? Je ne sais pas encore. Mais c’est comme s’il manquait des dimensions à ces souvenirs, des métadonnées, comme s’ils étaient un peu appauvris. A nouveau, pas quelque chose que qui que ce soit va remarquer, probablement, sauf moi. Mais pour moi c’est vraiment enquiquinant. J’ai l’habitude de pouvoir me reposer sur cette fonctionnalité de mon cerveau. Et là… y’a du sable dans les rouages.

Alors bon, vous avez lu jusqu’ici, et vous allez me dire “t’inquiète, tout parait normal, tu écris comme d’habitude!” – j’en suis sûre, que ça ressemble à ça. J’ai d’ailleurs pas l’impression que c’est très différent d’avant, d’écrire ça. Sauf que là je sens bien que je fatigue et que le mal de tête revient et qu’il faut que j’arrête. Bon, ça c’est l’histoire de la fatigue et de la concentration. Et hier j’ai eu ma première séance d’entrainement cognitif. Pas très long, mais on m’a prévenue que je pouvais avoir des répercussions. Honnêtement, je ne pensais pas. Oui, j’ai dû faire un peu des efforts, mais la séance n’était pas très longue. pas de l’ampleur des “efforts cognitifs” dont j’ai maintenant compris qu’ils étaient trop importants à ce stade de ma convalescence. Donc j’écris ça un jour où je me suis trainée un petit mal de tête post-effort et où je suis bien à plat (je suis même allée me mettre au lit à un moment, ça ne m’était pas arrivé depuis un moment).

Je retourne à mon puzzle, on verra ce que raconte mon cerveau. Et quand c’est la prochaine fois que j’écris (bientôt j’espère mais j’ai appris à revoir à la baisse mes attentes de “follow-through” quand je me dis “yes, je vais faire xyz!”)

Today is Backup Awareness Day! [en]

Two months ago, on February 24th, I hit the wrong “Drop” button in PhpMyAdmin, resulting in the immediate deletion of the blog you’re reading. I didn’t know when I had last backed it up.

The story ends well, though it cost me (and others) many hours (days, actually) of work to get the whole of Climb to the Stars back online again.

I’ve always been careless about backups. Like many of you, probably. We can afford to be careless because accidents don’t happen very often, and as with Black Swans, we are under the mistaken belief that having been safe in the past will keep us safe in the future. Not so. As I like to repeat, the first time a disaster happens, well, it had never happened till then.

So, I’ve decided to declare the 24th of each month “Backup Awareness Day”. Here’s what it’s about:

  • Back up your files.
  • Back up your website.
  • Blog about the importance of backing up (sharing tips, stories, advice).
  • Tell your friends to back up.
  • Help your friends back up.
  • Put in place automatic backup systems.

Bottom-line: decrease the number of people who never back up, or back up so infrequently they’ll be in a real mess if things go wrong.

Now, perfectionism is the biggest enemy to getting things done. Backup Awareness Day does not mean that you have to do all this. Here are a few ideas to get your started (better a bad backup than no backup at all):

  • If Time Machine (or any other regular backup system you use for your computer) has been telling you it hasn’t done a backup in ages, stop what you’re doing right now and plug it in.
  • If you use WordPress, when was the last time you went to Tools > Export to make a quick backup? It’s not the best way to do it, but in my case, it saved CTTS.
  • Do you use something like Mozy to have a remote backup of your most important files? Time to sign up, maybe.
  • Are you working on important documents that exist only on your computer, which is never backed up? At the minimum, pick up a thumb drive and copy them onto it — or send yourself an e-mail with the files as attachment, if your e-mail is stored outside your computer (Gmail, for example).
  • Do you have an automatic backup set up for your database or website? Set some time aside on Backup Awareness Day to figure out cron.
  • When did you make the last dump of your MySQL database? Head over to PhpMyAdmin, or the command line (it’s mysqldump --opt -u user -p databasename > my-dirty-backup.sql)
  • Do you have the backup thing all figured out? Write a post for your readers with a few tips or tutorials to help them along. (Tag your posts “backupawarenessday” — I thought about “BAD” but that wasn’t really optimal ;-))

I’m hoping to develop the concept more over the coming months. If you have ideas, get in touch, and take note of Backup Awareness Day for the month of May: Sunday 24th!

(Now stop reading and go do a few backups.)

The Neighbour's Cat Won [en]

[fr] Morsure de chat. Pas mon chat: chat du voisin que j'ai acculé (chez moi, pour le leur ramener) même après qu'il m'ait prévenu à grands coups de griffe qu'il était trop paniqué pour venir tranquillement. Moralité: les chats ont de longues dents pointues et ne se les lavent pas.

Thanks to everybody for their sympathy and wishes of speedy recovery!

The Neighbour's Cat Won

Not much typing. Cat bite. Details later. Nice cat. Not Bagha. Silly Steph.

Some details.

Friday Update:

Cat Bite Update

Infected. Another appointment tonight. I hope they don’t leave me in this huge splint too long. Can’t do anything!

Friday night update:

It Just Gets Better...

Left arm: infected cat bite. They have long sharp canines and don’t like being cornered in a strange place by a strange person. Splint that forbids any use of my hand — will stick around for at least another 2-3 days.

Right arm: catheter. I had 3 doses of antibiotic through IV over the last 24 hours, and am headed for at least that many over the week-end. There are only so many veins in the arm you can stick needles in.

Now, we hope the long canine didn’t go deep enough to infect the bone — or I’m looking at 4-6 weeks of treatment.

Fingers crossed, everybody, please.

Video Update: the story and more details.

How it happened:

The consequences:

Sunday morning update: I can haz fingers!

I Can Haz Fingerz!

Still got the catheter, though it hurts less now the tap is on the outside of my forearm.

Great improvement: fingers on my left hand! I can type somewhat! Things are taking a good turn. Thumb joint still very painful, so I’m a little worried it could be inflamed/infected — but gosh, does it feel good to have part of my hand back.

Sunday evening news: good!

Monday update: shower!

From now onwards, things are on the right track. I can remove my splint if I like, infection seems gone, but it’s still inflamed. So, I can type and do most of what one expects to do with two hands, just a bit slower and more painfully.