Reading, Writing, and Who I am.
the difficulty of reading with a chronic disease and the surprising ease of writing; an expression of belief in my Autistic and authentic self
Hello All,
Straight into it then.
Recently and also not so recently, it has been far easier for me to write than to read. To begin with the words stay still. They move only from mind to pen (or screen). No slipping over the page. No wriggling away and refusing to stay still long enough for me to read them. No ghosting letters or words coming through from the page behind. No erroneous letters inserting themselves in random words. No sections sliding over each other having cracked along word fissures only I can see and stacking word on top of word, letter on letter. (Why, thank you so much Dyslexia, and thank you ME/CFS for encouraging it. Please, both of you, stay in your box.) These words seem to behave.
Once I have the words ordered in my brain, in general, they tend to stay in order and calmly wait their turn to empty onto the page. Rarely do I find them missing unless I have abused them with my absence. Occasionally the stream pauses as a different word leaps thesaurus like to the front of the queue to declare itself more appropriate, more worthy of use, more literary. Writing, at least the physical process, is fairly fast and relatively easy.
Reading, on the other hand, is stilted and hard. I see a word and then another from a line or two below, and another at the side of the page. I am forced to REALLY concentrate to make the words behave and reach my eyes in order. Whole sentences, sometimes even paragraphs, are missed. They seem to jump around misplacing themselves on the page. It is very tiring. I read the same section over and over, saying the same words over and over, over and over. How often depends on how bad the day is. I struggle and need to reread often to actually get the meaning into my brain. I see the words, but I don’t ‘hear’ them, they don’t connect. Until finally they settle into my brain enough to be understood. Like mischievous children refusing to sit down and be ‘well behaved’ the words are just as vexatious. It takes a long time to read a book now, and I need to reread it a good few tines to really understand; to ‘get it’. Strangely, the author’ voice often comes through loud and clear from the off. I just don’t know what they are saying without considerable effort.
It wasn’t always like this. ME/CFS has robbed me blind, almost literally what with wriggling words and awful eyesight now. It is a weird feeling. I used to devour books at a rate of knots, ate them up, the knowledge dumping unendlessly into my brain. When I was 16 I was SO bored at home and I read every single fiction book on my parents bookshelves, which were plentiful, and some reference books. Charles Dickens, Lynn Reid Banks, John Wyndham, Salman Rushdie, Wilkie Collins, Arthur C. Clarke, Thomas Hardy, the Brontes, Tolkien, to name a mere handful. So many books, so many authors, so many themes. I read all the Shakespeare plays, all of them. I read Webster and Dunne, and began a love affair with the Metaphysical authors of the 17th century. But I’m sure that relentless rush to consume the printed word for a good year or two helped. Born out of boredom I discovered rare delights - a book on ancient herbal medicines that had drawings of plants in that began a love of botanical art. A book on the meaning of flowers. Germain Greer and feminist tracts. It was a whirlwind of an education far superior to the Robert Graves we read at school. (Apologies to those who like Graves, 16 year old me found him turgid and boring - each to their own.)
Now it is slow. So slow. I read a sentence again and again, and eventually I ‘hear’ it in my head, only then is meaning gleaned. Eventually I understand and can move on. No more the soaking up of information, fact or fiction. More a slow tortuous drip, drip, drip, that may or may not eventually make a damp patch of comprehension.
I’ve missed a lot. I’ve not bought new books for a long time. I’ve not kept up with the new authors. It is fantastic to now be learning about these authors and especially poets I have missed. When I was young liking and writing poetry was not really the cool thing to do, and I couldn’t afford poetry books. Poets were so rarely published it seemed. There were always some amazing but very expensive hardbacks that rarely got into paperback unless classics like Wordsworth or Woolf, but I couldn’t afford them, my Saturday job at Woolworths barely covered 1/4 of the cost.
Then came family and kids and I didn’t have time anymore. As many on here have written about when you have a young family, especially one made up of 3 neuro-divergent kids, you sort of lose yourself.(
is an excellent example.) And I lost poetry and writing. I did try a little over the years but then came the chronic illness and I lost even more. I occasionally feel on the up now. Able to take up my ‘self’ again; like putting on an old favourite jumper that was tucked away with hope at the back of a drawer in the hopes it may one day be worn again. I have a life, that though different, is good. Having ‘discovered’, maybe realised is a better word, I’m also autistic has given me a greater feeling of permission to explore.I don’t have the energy to do masses of research, to scour the web for sources of people who agree with me, to include many relevant links, to find the relevant and brilliant Substack authors, who write so much better than me, and link them in. I am unlikely to do it often. However, this did resonate with me from
.Writing for me is catharthic, it is how I process. Small stories, large stories it doesn’t matter, each are as relevant than the other. How I write is incredibly personal, who I write for is for me and for you all. I am assuming, maybe presumptuously, that you are interested in what I write, in how I try to sort out my life and the rediscovering yet again of myself out of the mess ME/CFS and life in general has left me in. That you will get this far. If not, then in the process of writing I have worked something out. I will feel better about some small aspect of life. So no flowery phrases for this post. No Note worthy quotes for you. No useful insights to help you gain traction on Substack. Just little old neurodivergent me working out today and maybe feeling better about tomorrow.
So anyway, what I discovered when writing the draft of this post on reading and writing . . . .
I am a writer and a poet. There are no two ways about it. It is who and what I wanted to be since I was 6. It is who I am inside and am now, decades later, trying to be on the outside. It is who I am. I MUST embrace it. I will embrace it. The more I write the more I want to write, the more I love it. The more I love it, the more I want to write. It doesn’t matter if no-one cares. I will write anyway, just for me if needs be. I may be old, I may have lost myself decades ago but I have decades left and can be me again. I can allow it. If I don’t write it won’t change who I am.
I am Tamsin Chennell and I am a writer and a poet.