My mother recently found some loose diary pages I wrote in my first year of boarding school, aged eleven, whilst she was clearing out her house. The pages are titled ‘M.E.’, ‘Boys’, and ‘School’. Reading them now, it’s clear I was lonely. ‘As I have said before,’ I wrote, on the page titled ‘School’, which implies that I wrote more often than I remember, ‘there is no one I can talk to here.’ My theory appears to be that no one can take me seriously ‘because I am so small’: ‘People only listen to me when they ask how big my feet are. All they can do is measure them up to me.’ I recall a time from ‘my old school’, when I was measured by the other pupils in my class to see if I was a metre tall. ‘I felt like an object,’ I wrote, ‘being used to play jokes on.’ On the page titled ‘Boys’, I seem to have anticipated being ‘left out’ in social situations, seemingly without putting myself into them in the first place, and make excuses for not doing things. ‘I am on bed rest any way most of the time’, I wrote, which is also why I am ‘so behind with my work’.
I had kept a diary for a short time when I was around nine or ten and already knew better. In it, I wrote about my frustration with my mother, along the lines of, ‘Why can’t she be like everyone else?’ She had come out as bisexual. My parents were separated. She was ill in bed all the time. I left the diary at my grandmother’s house. She found it, and read it, and then my mother read it. I’m sure my childish spite proved something to my grandmother. I’m sure my mother was furious. I had betrayed her. From then on, if I ever wanted to write something down, I wrote on loose sheets of A4 paper, as if they were just notes, or a draft, and could be easily disposed of.
The ‘M.E.’ page of my school diary details my parents splitting up – apparently, my dad ‘buggered off’, which is not exactly what happened – and my mother being ill with M.E.: ‘but it’s not catching.’ The sentences on illness – my attempt at narrating my own experience of feeling ill – come off as impersonal. It’s if I am writing in character:
‘Sleep is the only thing I’m good at. Being ill is one of my great pastimes. Having a crap life is my hobby. My bed is the best place for me, not boarding school.’
I had been diagnosed with M.E. (Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome) aged ten, a few years after my mother received the same diagnosis. It was a process of elimination, for my mother and then me. Blood tests proved there was nothing physically wrong with us, but we still felt sick. I remember feeling pleased with my diagnosis. It made me closer to my mother, who also suffered with strange sensations and fatigue, which meant she had to sleep for much of the day. I’m sure she felt it was her fault somehow, that she was responsible for my symptoms. My illness was a kind of inheritance, a form of love.
My collection of symptoms expanded and contracted over my school years, but mostly I felt tired, and not at the times I was supposed to feel tired. I got used to the ache in my head. Flinching when touched. Lying awake all night, sleeping bodies all around me. An unexplained pain in my legs, which I could not remember not having: it felt like someone slicing open the muscle encasing my shins. (My mother says I told her my legs hurt when I was still in my cot.) An ache in my arms when I raised them above my waist. Light sensitivity. Cognitive impairment. Nausea. Insomnia. My mother’s illness had more of a narrative.
In the mid-1990s, my mother collapsed with pneumonia in the kitchen, which is where things seem to happen in my family – she had given birth to my younger brother on a different kitchen floor six years earlier. I don’t remember how long she was sick with pneumonia for, it couldn’t have lasted that long, but in the months and years that followed, she suffered with strange sensations, as well as muscular pain and crippling fatigue. My mother was not sick any more – she did not have an infection – but she still felt ill. Her pain relieved, and her fatigue got worse. Today, she says fatigue is not the main problem any more, not that I can ascertain what the main problem is. I was never as good at monitoring myself, at reading my body for messages, at narrating my ill feelings. I could only approximate what I had learned from my mother, and she was struggling with the same thing.
‘All I want to do right not is go home and go to bed,’ I continued, on the ‘M.E.’ page. ‘I suppose I have gone mad, talking to paper.’
You write a diary to say something to yourself and for yourself, but it is also for posterity. If you feel ill, and the illness you are diagnosed with has no apparent cause, perhaps that unseen, future reader is yourself. Your diary makes a space to speak your feelings, however incoherent or exaggerated: where you embroider, where you gossip, where you speak without judgment, fear, or shame.
The last sentence, in parentheses, reads, ‘I know none of this makes sense, but it just helps me to let it out.’
My mother ‘found’ – I haven’t asked how or when she got hold of them – and kept these pages. She didn’t want to send them to me at first, even though she had already told me she had found them, but not because she felt embarrassed at having invaded my privacy. This reluctance was her way of protecting me. It was as if reading my writing, hearing the small voice that I had somehow briefly found in myself before throwing it away, would have upset me. She did not yet know that I wanted to hear that voice, the evidence of which was so easily discarded and forgotten. I am piecing together a diary of that time from the scraps of correspondence my mother kept. I am speaking with her, and through her, rather than for her. Much like the mind and the body, my mother and I are not separate.
My mother made excuses for not sending me the pages – ‘My phone is full, so I can’t take photos’ – before finally sending photos of the pages to me. ‘It’s all too heart-breaking darling,’ she wrote. ‘I’m so sorry’.
My mother now keeps these pages in her ‘M.E. Diary’, which details her own experiences with M.E., a condition she has lived with for 25 years, along with a letter I wrote to her from school, age eleven.
‘I drew a picture for you, so you can look at it and remember me,’ I wrote. The sketch on the other side of the page is of two winged figures, drawn in light coloured pencil – yellow and blue. I must have copied it from somewhere. I told her matron had got me a pass for hockey and swimming. ‘I have been off all day today because I have felt horrible. That’s why I had time to draw this.’