I enter my other world where pain – a brutal sun – rises so slowly I hardly know its pointless orbit has begun Then – too late – it floods my landscape. Higher, harsher more violent rays find my soul and all dreams die I live of course – nothing as numb as death appears – and remembered life offers the hope this senseless sun will set. Only relief matters I have no defences and as for plans, ideas, and my spirit's love of flying. They are senseless ghosts bleached by the light intense pain turns on all dreams My body doesn’t crash like an obliging computer – it goes haywire: stomach in stasis, temperature yo-yos senses recoiling from light, sound, smells, blood vessels blowing up then shrinking like mechanical balloons. I throw up of course; peristalsis has to join in. My body is a party and the venue must be trashed Sometimes – if not alone and offered kindness I weep ridiculous tears grieving for my functioning world barely remembered. Days and nights later after the party’s over the brutal sun begins to set and I journey back slowly ghosts of ideas growing flesh as dreams re-inhabit my exhausted being and senses calm ready to feel the real sun. And on the third day I rise – again.
That’s how it was for three decades. The pain was violent, I could not stand any sensual stimulation, I vomited compulsively, needed assistance to walk and was often icy cold. For several days and nights I had no sleep. I always had a bucket beside my bed.
I say was because the worst of these attacks is over. I’m not cured; I still get migraines, but I would not be writing this were they so violent. The fact is, as we age, our vascular system gradually weakens and becomes less good at hammering. So my migraines evolve. They don’t progress. They just recur. And recur. I call it the pointless pain. Pain is supposed to have a point.
I vividly remember my first attack. It was a one-off and I had no idea what it was. I was in my late teens living in New Zealand, doing a Music/English degree at Victoria University, Wellington. My mother was in a mental hospital very broken down and I was in Palmerston North ‘doing’ for my father and three younger siblings. It was overload. One day my father caught me smoking. It was one of the many things he couldn’t abide females doing. Whistling was another. I thought some understanding plus gratitude was called for, so threw a transistor radio at him. I’d never thrown anything at anyone before. I must have realised he loved and depended on it for distraction. I don’t remember what happened except that he was too shocked to kill me and an unbearable pain started in my head. It did not subside for days.
And that was it until two decades later in London, after a yoga course in Oxford. I had travelled by train from Paddington with my bike and on the return bike journey to West Hampstead I began to feel dangerously ill on the busy Edgware Road. Earlier, during the class, the teacher had us lift a partner off the floor back to back. The woman who insisted on partnering me was large and floppy and she fell on her head. I can still hear the noise. The teacher blamed me although, as a teacher, I know she should not have done this with people she did not know. A four-day illness with violent headache followed. I still wonder about her.
Very gradually these attacks increased. I was living in London and Dorset and travelling between the two. That journey in my beloved cream automatic mini always resulted in days of vomiting with hideous headaches which I somehow programmed time for. It was a while before I went to a doctor and was diagnosed. I was teaching yoga and writing articles, both of which became hard, and eventually impossible, to keep up.
During this time, the 1980s, my father died and I was back and forward to New Zealand helping to take care of my mother. Every plane journey made me so ill I decided to travel on a cargo ship where I met and married my one and only husband. Together we moved to Lismore where I was alone with my condition for months at a time because he was away at sea and, although I sometimes went with him, they went too.
Living in a small community, where at that time females were expected to slip noiselessly into servicing roles, was terrifying as I had no idea how to explain myself. Fact is, to most people, I wasn’t explicable. I couldn’t say I was terrified of committing myself to anything for fear of getting worse and always letting everyone down, although this was the truth. Letting yourself and everyone else down is the hallmark of this condition. The fact that it was essential I live a quiet routine life was seen as a refusal to join in and contribute. Migraine did not explain this while anti-social and odd did. Meanwhile I was struggling everyday to stay well.
Migraines come anytime and are always expected. They have seldom provoked sympathy for many reasons, but mainly because without them I look well, healthy and active. But I loved the island and wanted to stay. It was a long time before I worked out how I could accommodate my hidden disability and the community’s expectations. I did in the end solve the insoluble. I wrote about Lismore for the local paper, for the website or for anything that would let me. It meant attending and recording a lot of events, but I had a choice, a focus, and a role and, as I set about making Lismore more visible, my oddness became less visible.
Living in a small community, as with all life, is a skill.
Next: Chasing Cures