When the page went quiet

My cognitive dysfunction means I struggle to read for fun, and I miss it dearly.

The A Series of Unfortunate Events books ignited my passion for reading as a kid. They’re exceptionally well-written, and I spent countless hours engrossed in them. Reading fiction at that age can be magical, when your imagination is free and your sense of wonder so easily aroused.

There are 13 books in the series. They follow three extremely unlucky orphaned siblings - Violet, Klaus, and Sunny Baudelaire - and a man claiming to be a distant relative, named Count Olaf. In each book, the Count infiltrates their lives under a different guise and attempts to steal their family fortune. After thwarting him, they move and start over, only for him to appear again.

In some ways, it’s a fitting analogy of ME. An illness you’ve never heard of invades your body and snatches years of your life, taking with it hopes, plans, experiences and friendships. And if you’re unlucky, it returns just as they’re getting back on their feet, through a relapse or viral reinfection, brandishing new symptoms and ready to steal more years from you.

I studied English Literature at university. Although many of the course texts weren’t for me, there were some that deepened my love for books. They included: Great Expectations (Charles Dickens); Frankenstein (Mary Shelley); and Paradise Lost (John Milton), although I confess I was too lazy to read all 12 books of PL because I was, well, a student.

Now, I have a window each day where I can manage focused cognitive activities. I want to use it in the most productive way, so I can’t justify reading for fun very much. Even in my ‘on’ window, it still sometimes feels like driving a car with the handbrake on, especially if I’ve not been pacing myself well. Writing takes longer, and I’m sure I’m less creative. At a certain point in the day, my thinking becomes so sluggish I have to stop and rest. Research shows that cognitive performance, including reading speed, memory, and attention, is impaired in people with ME.12

It’s not just about productivity. Reading a novel isn’t as fun as before I became ill. It used to light up my mind with images and ideas. But now, in the evening when I want to read, those lights are dimmed and flickering. My limited cognitive energy is spent, and if I try to read a book, it feels like nothing’s going in. I might read a page and be unable to recall a thing from it.

If we met, however, you might think there’s nothing wrong with me. One reason for this is that, if my symptoms are flaring up and I’m struggling to follow a conversation, I can just nod and pretend, which I often do. But I also don’t struggle much with autopilot activities, like small talk, because they don’t involve much thinking. When something requires me to deeply concentrate, as reading and writing do, that’s when my brain can feel like a plodding tortoise.

To wake up one day and find parts of yourself that you held dear suddenly and inexplicably impaired is difficult to accept. Even five years on, I struggle with this. Reading and writing have long formed part of my identity, and being a writer who doesn’t read much invites impostor syndrome. Like many with ME and similar conditions, I grieve my lost years, experiences, opportunities, and potential, but it’s grown easier with time.

The silver lining of not reading for fun is that I’ve rediscovered my love for the cinema. I go so much that I’m considering becoming a member at my local one. Films and TV are less cognitively taxing, so they’ve become my main forms of escapism. However, for me the joy of being immersed in a good book is irreplaceable, its calming effect unmatched.

My cognitive symptoms are significantly better than when they appeared five years ago. Writing this blog would have been impossible then. And I believe they’re continuing to improve, inch by inch. I cannot wait to while away an entire afternoon reading a novel again one day. War and Peace by Leo Tolstoy is top of my to-read list. I was too daunted by its 1,200 pages to tackle it before ME, but now I relish the thought of it.

Since my physical fatigue has improved immensely, I’ve been able to do many things I couldn’t before, like socialising, hiking and playing football. And in every case, I’ve had a newfound appreciation for them. So I know that when I can regularly read for fun again, the same will happen. And knowing how much I loved it before ME, I can’t imagine how good it will feel.