I thought I would write my first post about why I read, so that you might know a little more about me and my motivation. Like many people, I read to escape my reality; the purgatory in which I exist. This is quite a long post, but for me it’s quite a big story.
As a research scientist I would spend most of my time reading scientific papers and reports, travelling the world to conduct fieldwork and experiments, and lecturing and supervising students. In my spare time, I was a reservist in the RAF and enjoyed reading (usually during a free weekend or when travelling). Outside of academic texts or current affairs, I devoured thrillers, suspenseful courtroom dramas and literary fiction with an insatiable appetite.
When life changes because of an event like an accident, there is a time point, something to fix on, a before and after, something to blame. I developed a life-changing illness, but it didn’t happen overnight, it crept up insidiously and unremittingly. I saw my GP about my symptoms and then several specialists. I went from being disproportionately tired after going for a pizza, to being so weak and in pain that I couldn’t lift my head off the pillow or a fork to my mouth. I was diagnosed with severe ME (Myalgic Encephalopathy/Encephalomyelitis also known as CFS, although the nomenclature is contentious), confirming that life as I knew it, was over. ME has milder and stronger forms, but for those with the more severe form, their quality of life is abysmal, lower than many cancers and heart conditions (obviously, this is not a competition anyone would wish to win).
Becoming bedridden causes your world to both shrink and magnify, I felt like the protagonist in my favourite novel, Alice in Wonderland (but without the curative magic biscuits). My world shrunk from the whole globe to one bedroom, whilst stimuli (lights, smells, sounds) became intolerably magnified and the smallest thing like a clothing seam caused unbearable discomfort. I wondered why after a year, a lot of my friends and colleagues hadn’t seemed to notice that I’d fallen off the face of the earth (then I discovered #millionsmissing and realised I wasn’t alone in being ‘forgotten’). Of those that did notice my absence, many didn’t want to keep in touch once I’d explained what had happened (ME isn’t contagious, but sadly neither is compassion). Invaluably a couple of friends were willing to patiently keep in touch and visit me at home for the 20-minute chats which I can manage most months. They remain a lifeline. My boyfriend of 18 months said he wanted to split up, emphasising that he’d still support me as a friend. I’d known him for 12 years but didn’t hear from him again.
I felt the darkness of despair engulf me: what is the point of such an existence? ME is an illness for which there is no cure and little effective treatment (so it’s a minority who make any recovery). Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University, captured it well when he said “[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” Who would willingly endure that? People do die from ME/CFS itself and some choose to end their suffering themselves, the cruel irony being that those most severely affected probably wouldn’t have sufficient energy to take their own life.
I was determined to get better, but it isn’t a question of determination; positive thinking helps but it’s no substitute for reliable treatment, lesser still a cure. I followed my medical teams’ advice to the letter and I clung onto a quote from Maya Angelou:
“You may not control all the events that happen to you, but you can decide not to be reduced by them.”
There might not be a way out of my diagnosis, but perhaps there is a way out of the darkness. An important part of managing ME is finding less-taxing activities which bring pleasure, for me reading seemed the obvious drug of distraction.
Trying to read with severe ME is impossible. This excellent article by Isabel Walter explains exactly what it’s like to try. I missed reading terribly, the chance to escape my sick bed which one of my friends described as ‘prison’. In civilised countries, prisoners know what crime they’re accused of, and the length of their internment. I do not. So, I liken it more to purgatory, because I’ll spend an indeterminate amount of time here and I may recover somewhat, or I may not. I yearn for the heaven of milder ME and a ‘relatively normal life’ and try to remain hopeful that one day it may happen.
I followed the advice of my hospital team (consultant, physiotherapist and occupational therapist) which involved: being very disciplined with pacing (even taking rest breaks during meals), gentle physio (all of which I did in bed), using energy for pleasurable activity, and taking medicines and supplements. After nearly two years, I started to get short periods where I could read something simple for a few minutes, so I picked up the children’s stories I’d read at school. I read a paragraph followed by an hour’s rest, some months later I could manage a page, eventually a chapter. The absolute joy of re-visiting Nina Beachcroft’s magical adventures is difficult to fully express. Although I was re-reading these stories and the chapters were short, I’d have to make notes of character names and plot lines, otherwise I’d lose the thread completely. I also noticed that there was joy to be found in little things in my day, although some days you had to search so much harder. My Mum, who had become my full-time carer, would put a flowering plant (unscented!) in my room, or a friend would send me some chocolate or a kind message. My Dad moved my bed near the window so on my worse days I could watch the passing clouds and birds. These little things were such big things to me and being so sick made me appreciate them far more than if I’d been well. I realised that probably the little things had been the big things all my life, I’d just been too busy to notice.
I’ve since regained a little more functionality; I’m housebound but I’m able to read a little faster and absorb a bit better although many books still need character lists for the ‘getting into the story’ stage. I don’t believe this lessens my enjoyment of books, nor does it render my insights any less meaningful, than when I was a ‘highly functioning’ academic. It does mean however, that reading means much more to me than it ever did; there’s much more effort undeniably, but also so much more reward. It is one of my favourite treatments and constant sources of joy. I’m also reading much more widely now and although I no longer discover the world for myself, I do it vicariously through the words of others. When the pain is proving hard to bear, or I’m frustrated that I can’t even bathe without help, there’s always a book offering escape: I can be someone else and live the protagonist’s liberated, pain-free life, or I can empathise with a character who is struggling with their own battles. ME has robbed me of so much, including the one thing I valued above all: my independence, but it can’t take away my imagination or my love of reading!