I just posted about one of my novels, Borderlanders, on Facebook. Let me share that post, and let me add to it.
Memories…
This was the book wanted by readers on FB. I noted (on FB, obviously) that my academic stuff had given me a way of writing a novel with a chronically ill protagonist where the protagonist remains the hero, is not cured, is not killed, and is not replaced. I was going to teach this method to others, but first COVID intervened and then antisemitism. I don’t get to teach much, these days. I may have to write another novel, having said this, because I learned so much in writing the novel that I could now write a much better one.
What’s very strange is, during these 5 years, more people I know have the illness my character had, due to long COVID. I’ve had it since I was in my twenties, but I’m one of the fortunate ones for whom it goes into abeyance. Right now, I’m trying to coax it back to sleep. Not everyone has that luxury, which is another reason why I should write another novel. Not yet, though. While it’s awake, every moment of every day is not straightforward, and I am behind on all my fiction.
This mysterious illness was known as chronic fatigue in Australia in the late 1980s, but these days it’s called ME and the fatigue is just a symptom. We know a lot more about it. One thing we know is why walking up the street can be so impossible. For some of us it can set the illness back, and for others it can destroy life entirely. This is why I consider myself so fortunate. I may have to not do much for a few months, but after that time I can do a little more and then a little more. This is just as well, because it’s only one of several illnesses I have and I have this daft desire not to be bedridden or die young.
For me, the most annoying symptom is when my executive function is not working. I lose time (sometimes weeks) and can’t do simple things. Oddly, I can still write books.
I always tell folks, do not assume someone can or cannot do a thing when they are ill. Ask them. And ask them each and every day if you must, because the small everyday can change. Some days I can walk up the street and back and I can write 6,000 words. Other days I can hardly get out of bed.
The illness is not just part of our everyday, it becomes part of who we are, for better or for worse.
I would like to see a superhero who has ME. It would be such a wonderful thing, watching them change the world… on days they can do more than toddle. And seeing how other people respond to the wild level of change they see when a powerful person has to watch what they do every minute would provide a great sub-text to a movie. It’s quite a different set of options than those for someone who cannot walk without assistance, or someone completely confined to bed who uses their amazing telepathic abilities to run the world.
There are so many amazing stories in the lives of the people we mostly prefer not to see. I now want to see a whole sequence of superhero movies or a TV series that focuses on those lives. There is a different sort of heroicism when one is not visible and has to fight just to get through the everyday, especially when they do astonishing things. Most of those astonishing things are attributed to someone else, because, of course, the invisible and half-seen can’t possibly be the heroes we dream of. Except, of course, they are. I get through my illnesses because of those people. Some of them are role models and some of them help when others don’t even begin to see that I might not be able to ask for help when things are bad.
One thing about this non-extent show: costumes would be far too problematic for some of the hidden heroes. So would heroic stances and being randomly interviewed by reporters. It would be such a different and fascinating set of stories.
In real life, I’ve met these invisible people in essential services. From a desk or from home they make a lot of the everyday possible for so many other folk.
One day, I will write that second book.