I’ve spent a lot of time with this too. The need to adapt and to develop the new skills suitable for my current capacity is …well, for me and for most like us, to make progress of some sort is what life is all about. (To the point where not having that makes life seem not worth living.)
The Stephen Hawking example occurs to me daily. Both that he had the support (plus background connections and finances) that made such things possible but also, much more so, that he could still think.
When I was little we used to play a game in which we had to choose what we’d lose (no idea why we started it). You could lose a leg, or be paraplegic, or your sight, or hearing, or sense of taste and smell, …etc. We would try to imagine a life with such conditions and how we’d make the most of it. I concluded, in the more advanced levels of our game, that I could do without most of my body (at that stage I didn’t know that losing control of your body doesn’t do away with the pain etc so it was a simple sci-fi style I am my brain kind of thing with no thought as to how it would be maintained either) if I could still read, and write. I could still imagine worlds of life to be had that way.
It’s a special sort of irony that I got an illness that is both taking away my mind, and is not clearly recognised. So every interaction I do have feels like having to take the same quiz over and over with no hope of success. Nor improvement.
I could give you my bio. Impressive by most standards, and almost all before age 35.
It makes for some weird conversations now as some people simply don’t believe me, like I’m telling stories. Before illness it never occurred to me to care what others thought, if they believed me. I was living it. Now, sadly, it kinda does.
People who knew me before are stumped. They just don’t know what to make of it and so most just disappear. It’s confronting to imagine that this could happen to anyone, even ‘me’. So they don’t. They just get busy with their lives. And tell themselves when I have positive things to say that I’m doing well and will be better soon, and when not well that they’d do it better, or they just try not to think about it.
Even my 85yr old parent who moved in with us after the other parent died, took a few years to fully comprehend that I was now less able than them.
But I’m lucky. I live a very quiet simple life and I can have days when I feel almost like when I was on holiday after an intense patch in my past. And my capacity (both mental and physical) was so great that I have been able to keep up a lot more physical activity than most (I’m able to be as active as a depressed and unfit middle aged person, on good days). After 8-10yrs, this residual conditioning is finally failing me too.
Every year or two, I try a different approach. Over the past year I tried giving up on it all. No more to do lists (to remind myself of basic things like … this is getting too long.
My conclusion for myself is that I have to keep doing 40-80% of what I can comfortably do physically every day. That I can’t borrow from the physical to get more mental capacity (or rather, I really can but it isn’t sustainable to do more than occasionally). For me, spending 15minutes outside (in a really wonderful environment here) every day is a good way to reset (I can tend to keep driving at a goal and forget to stop and reassess the big picture, to cut out the non-essential (an ever moving target that) and redirect to what is most productive for the me that is now.
I needed to read (audiobook in my case due to reading difficulties that I could never imagine before illness) books about the shipwrecked in the age of sail and the Endurance (the ship he took to reach the South Pole, got wrecked and still managed to come back with his crew alive - forgetting the name now is frustrating). To get my head around a mindset I needed to survive this. To know what to admire in myself and how to rate the challenge. To look at how I judged the choices of those people to see what I needed to focus on for myself. I’m due to do this again (memory is not great).
I started duolingo and have now been doing it for 10yrs. I had to try to relearn the languages I used to be fluent in. It has been incredibly slow, mostly no progress, but combining that with watching shows in those languages, I’m almost back to my original fluency for comprehension (can’t really say I can speak though). I did this because the website and now the app works for me.
I couldn’t find anything in physics nor maths that I could manage (and yes, had degree and career in them).
I volunteer in something that you’d say was impossible but I started before diagnosis so I’ve simply asked my doctor not to pursue diagnosis. And I’m senior enough that I can take a command role when I can manage and simply not be available when I can’t. I have assigned warning signs so I’ll always step down if I need to even when my judgment is off. And increasingly I do everything remotely, even on good days.
I did well enough financially before getting ill, and was always a saver, so I can support myself (though recently it occurred to me that people think my spouse financially supports me…hmmm - not that that’s so bad I suppose except that I put so much of my very limited capacity effort into making sure that’s not the case).
I have focused more on growing plants, mostly trees. It’s not something I was any good at before illness but that’s what makes it a good thing to do. It’s possible to make many parts of it routine for the rough days and then do all my thinking on the better days. It’s good because it will matter in 5yrs’ time - when most things I’m a parallel of these days will not.
That’s how I decide what is essential: will it matter in 5 years if I didn’t do it now? If not, skip. Really.
A lot of the self management skills my peers learned in school and University are things I never had to learn. I simply let my brain handle it all. I didn’t take notes, I didn’t make to do lists, I didn’t swat before exams. I simply paid attention and then did the tasks, usually at the last possible moment, and I excelled. At everything I tried.
I told myself that in order to be resilient in the world to come (which most people are only seeing now) I needed to focus on mental resources. Physical things can be taken from you but -you- are still there. I was wrong. I can be taken from me too.
But there are still parts of me in there.
And my problem solving brain still knows the techniques. Even if I can’t hold it all in my head as I did.
And I can remember all the endless slow motion tasks my peers had to use to keep going through the final years of uni, so I try to learn to do them now. Not well, but then again they had 15-20yrs to learn them.
And although in many ways I’m less well than I used to be, and I’m getting less done in the world, my brain is just slowly starting to come back. For about an hour or so a day. On a good day, after a lot of real rest.
Why are we not making more noise? Because I don’t see how I could engage with healthies on this. They have endless capacity to reply, usually with thoughtlessness and bigotry (and I include the hippie types too here, if not more so). I have only so many spoons, none of them guaranteed. I cannot spend them on people who simply want to prove me wrong (for their own sanity, to believe that the world is fair and that they have control of their destiny, and that if we were really horribly sick someone would do something).
Instead, I’ve been noticing all the other people in life. The people who never replied. The people who put their heads down and carry on, not engaging. And I realise, finally, in a way my over-achieving past self never could comprehend, a little of what they’ve lived, of what they might possibly be thinking. And I try to use my small residual role to redirect help to them when crises happen. To interpret for others who might overlook the quiet in favour of the loud. It has not earned me any friends. But it is the right thing to do. And that is the person I would want to be in my own shipwreck in the age of sail.
[as this is a public thread, I will be deleting this in the next few days. Please don’t quote me in full if you wish to reply. I do this as I don’t know how identifiable I am. And I cannot process any ramifications of saying things publicly - oh my fantastically broken brain]
Just wanted to say: you are most certainly not alone in this. It is utterly incomprehensible even to ourselves, that this could be. But we do have this forum, and a snail’s pace is still a life. And there are other quiet people who are just getting on with it in trying to find solutions.
Figuring out what success, with these very real conditions, looks like is no mean feat. And, I’m sorry, it is never really done with.
Forget the noisies who fill up social media with their ‘know what brain fog is’ - we all know that most of them don’t. I try to remember that if they’re saying that much, maybe they don’t know what real cognitive challenges are.
And if you’re having communication challenges, there’s even a thread here for that too.
This post is all the words I will do today. (I’m obviously going on a bit which is one of my signs that I’m wearing out).
