Had the horrible realisation last week that what I’ve been calling brain fog all these years has now become brain damage.
Another friend of mine with severe ME has died. Jodi Bassett was only 40. Artist, writer, for twenty years an advocate for ME sufferers, and founder of The Hummingbirds Foundation. Through her detailed and influential papers on that site she helped many people (including many doctors) to understand the medical science of our disease. One remark I remember her making about her own condition was that the brain disease had caused real and permanent brain damage.
Last week, while enjoying one of Frauke Spanuth’s excellent workshops, I came up against a wall that no amount of determination and persistence on my part or intelligent and calm teaching on her part could get me around, and I saw it for what it is.
Frauke has been so patient with me all through our mentorship this year, while I’ve struggled to learn and apply new skills that even a year ago I would have absorbed without scratching my head.
Clearly, I still have the ability to communicate. I still have the words. But the learning new skills part of my brain is burned away.
And, yes, the ME was (and still is) punishing me in its normal nasty way for overdoing it with ten hours of good writing on my new project over the previous weekend. But that wasn’t the case for the three months of our mentor program, when these exact same brain symptoms stopped me from functioning.
That’s where I found myself in the middle of last week, and I didn’t know where I would go from that point.
It wasn’t the anguished wail it probably sounds like. It was more a hollow thud of recognition.
But then I realised I wasn’t getting any intel that my brain’s frustrating inability to learn new technical skills is affecting my ability to write. I mean, yes, my ten hours of weekend writing had kicked me to the kerb, but it’s good. Really good stuff that I’m very happy to build on.
I’m probably tempting fate saying this, but sod it. It’s my fate and I’ll tempt it if I want to. This is how I see this development:
It’s frustrating as hell that the part of my brain that enables me to learn new technical skills has gone, but I still have the creative planning and writing parts of my brain.
Last night I wrote 500 good Sky Train words to start its second chapter. This project is very much still alive.
And the other aspect of this is that for a writer, nothing, nothing, is a wasted experience. 😉