11 July 2023

Early on after I had been told that I had a rare disease, that while thanks to modern medicine I could reach some form of remission even over longer time periods, I would always need medication and regular tests to ensure things wouldn't get worse, and after I had made sense of the meanings of chronic and flare ups and the numerous restrictions that had entered my up to then happy go lucky spontaneous life, the fact that I have to adhere to stipulations of the health insurance and my employer and the disability regulations and the tax office and a couple, in fact too many, other institutions that will from time to time dole out the various perks one is meant to benefit from when chronically ill, in short, once the dust had settled a bit, I began to develop this new skill of always looking over my shoulder, of trying to be ready for the worst, of watching, always watching for symptoms - I had been given a handy list - and I have made an art form of this. My permanence, if there is any, is to remain alert to looming danger, which in itself is exhausting and tedious. Of course, and I am not stupid, I can observe this, myself, and tell this person, myself, to get a grip and I can let go or at least allow my brain to relax, to stop trying to be in charge and vigilant and ready. And by now, 12 years in, I mostly do succeed, but then there are days - and nights - when I remember glimpses of what I used to be like, what my life used to be like, and I need to muster all the cells of my brain and every fibre of my heart and soul to bring myself back, to reach that place somewhere deep inside where I feel complete.

I am mostly fine, I can say this honestly. But I know I'll never again be really fine, the way I meant it when people asked, hey how are you and I would reply, oh fine, without thinking what it means.

The shoulder is still shitty but either I got used to it or the physio did help and it doesn't bother me too much. I can only cycle short distances before my arm gets numb and I stay off the main roads as I don't trust my braking skills. Also, I have a list of questions for my next appointment with the orthopedic guy who told me that no, it's definitely not a herniated disc in my neck that needs surgery and that it probably Just Takes Time. Meanwhile R has started to investigate ways he could adjust my handle bars. 

I am still figuring out ways to not fall asleep listening to podcasts and audio books. Obviously, listening while driving or walking is ok but I don't much like doing it, too much other stuff going on around me. Anyway, some books are too good and I just finished Birnam Wood by Eleanor Catton, which is rightly termed a "gripping fast moving ecological thriller". But it's more and I have been thinking about the novel and the ending and what I think could happen after the book's last page, it's dramatic ending. I really hope this is going to be made into a film or a series.

Here is a quote from the Eleanor Catton, author about her novel, or rather, her ending of the novel:

We’re staring down our own finitude as a species, as a planet, and I think that there’s something very dangerous about thinking like that. It can become a licence to behave however you like, really. But it’s also this kind of depression, the kind of depression that Macbeth voices at the end of Macbeth when Lady Macbeth dies and he says ‘tomorrow, and tomorrow, and tomorrow’ – you know, who cares, this is all just ‘a tale told by an idiot’. He’s such a nihilist in that moment, and so I was very certain in myself that I didn’t want to write a nihilistic book, I didn’t want to write a depressing book. I wanted to write a book that excited you because it made you want to know what was going to happen to these characters. If you achieve that as a writer you’re giving the reader a sense of the future, you’re making them want to keep reading, and so even for a little moment, in that brief time that they’re reading your book, they have a reason to live.

The full interview:


ellen abbott said...

glad to hear your shoulder is better. I can't imagine having to manage my life to the degree you do. I have ailments that have to be watched, primarily osteoporosis and afib, but nothing like you have to deal with daily. did the weight loss stop? did they ever determine what caused it? would that I had a magic wand.

I spend every day, as I have for my entire adult life, being cognisant of the damage humans have and are doing to the planet and doing what was in my power to not add to. I continue as if it matters, as if it has to matter. but if I really look within, I really have no hope for the human species, a species which fouls everything it needs to survive. we can build machines that go to other planets, that can take pictures of deep space and delve into the underpinnings of physical reality and yet we seem to have no interest in preserving the very planet that we live on. I've often thought, even with all the progress the Industrial Revolution gave us that it was also the beginning of the end for us as a species. climate change has reached the point of no return. we may survive as a species but it won't be fun and it won't be pretty. mass migration will follow the extremes of weather and the drying up of aquifers.

37paddington said...

"...there are days - and nights - when I remember glimpses of what I used to be like, what my life used to be like, and I need to muster all the cells of my brain and every fibre of my heart and soul to bring myself back, to reach that place somewhere deep inside where I feel complete."

I understand this so intensely it hurts. I will never be that person again, and yet I am still me, and there is so much I can still enjoy, but still, we mourn our past selves, or at least, I find I do. I often feel understood here, about things I have been unable to fully express. Thank you. Be well, my friend.

Steve Reed said...

I've heard of "Birnam Wood" but I haven't read it yet. It's on my list! I'm sure navigating the uncertain seas of a chronic illness is exhausting. Of course I see some of that with Dave and his Crohn's.