1. I appear to be normal

1. I appear to be normal

30 September 2023

In the league table of conditions migraine is low. It’s down there with depression,  fibromyalgia, ME etc. Novelists use it to explain female absences or backsliding: ‘She has one of her migraines,’ as though she could have anyone else’s. I hate them for it. When I was young it was said that having migraines was a sign of intelligence. That was before they realised that most sufferers were female and that idea slowly died.

The worst thing about my migraines is not the violent pain, the loss of half my life and all my dignity, the inability to plan, or even the vomiting. No, the worst thing is that I appear to be normal. Yet every morning I wake wondering whether I am well because migraine affects every second of every day, every relationship, every commitment and mocks every attempt at living the well life. And this is what all sufferers have in common. Possibly the only thing. That, and letting everyone down.

For me, migraine is caused by a misfiring in the brain which is the result of some sort of overload: sensory, dietary or social. Normal functioning breaks down. It’s a physical not a mental breakdown. We all experience overload. We all react differently. 

When I am so sick I can only stare at the curtains not daring to move (the pain hates movement), I am strangely relieved and even amused by my condition. Relieved that I can no longer keep up the pretence the well world demands. I imagine being dead will be similar although with added unconsciousness. ‘Sorry,’ my corpse will be saying, ‘can’t manage any more jobs.’

Migraines mean frequently explaining yourself. The problem is that, if I am up and about, I am probably in rude health and, unless someone has seen me throwing up in the supermarket car park or their favourite lampshade, they understandably forget I am not normal.

But there are those who do not forget and I am grateful. Prime among these is my husband whose life with me has been ruled by migraines. His empathy offers the deepest concern and maximum help. His patience is legendary.

Whatever your condition, being understood helps make suffering more bearable. Ideally I would like my head to light up because then empathy would flow as a river of healing. But that is not going to happen. In which case I want to be matter of fact about it, even proud of it. It is part of the creation that is me: a person whose system plays up dramatically and randomly. I want it to come as I would wish all life to come, with a great dollop of levity. Nearly everything is funny in the end. Especially migraines. We are the playthings of the gods and that is hilarious. And liberating.

I also want it to be so normal that everyone understands that if they invite me to do something, e.g. marry them or work for them, I am likely to let them down.

So why do most not relate not just to migraines but to all human frailty? Primarily it is fear. Me and my ‘perceived’ weakness reflect all weakness back like a giant horror mirror. It’s deep in us to deflect everything we perceive as weakness. So any disability is best invisibilised. That would be okay except that weakness may just as easily be strength. Because I can be floored by late nights, glary lights, loud noises, random smells, that does not make me weak. A tiny spring flower can be trampled by a large boot but its gigantic strength has pushed it through the frozen earth. Something a boot cannot do.

Everything about our physiology, good and bad, creates our beings. While I may opt to be cured, or for a longish break, that does not mean that I regret my condition. I know it has made me who I am, that it has created as many strengths as weaknesses. No-one is well all the time. We all teeter on the edge of mental, physical and emotional disaster whether or not we have conditions. Our amazing bodies can be whipped into place to a degree. We can eat well, exercise and then walk under a bus or be hit by a speed skier on a Swiss mountain. I was. Control is an illusion we seem to need for contented functioning.

Worst of all is the not uncommon idea that it is my fault. Alternative practitioners, who should be grateful as I have kept many of them in business, tend to suggest I am doing something wrong: too much of something bad or not enough of something good. Mega myth this. And a medieval concept connected to the idea of punishment for sin which illness, disability etc was thought to be. It’s still there. Believe me.

There are many myths about migraines. Prime myth is that it is a headache, a fancy one but a headache for which there is relief. Headache is just one symptom. I have been told I don’t need to suffer as these days there is an answer. Maybe for some but not for me so far which implies that I am just not fighting hard enough in the condition war.

The language of battle is insidious: it implies you have a choice. That the two sides are equal. Cancer sufferers are on the front line of this war. But at least they are always brave even when they lose. Of course I might be lucky and hit on the cause. But that is not common. Problem is all media migraine stories must contain hope. Understandably. Yet the truth is that for a great many there is no medication that works or solution that gets to the heart of it.

Migraines are not like some conditions: there is no clear cause and effect of even the vaguest sort. A migraine attack is not one thing going awry. Neither is it organ specific as, say, diabetes or thyroid trouble. While you can list specific symptoms, migraine is only an umbrella term for many types of brain/stomach/circulatory randomness. No two people get the same symptoms and no one person gets the same things all the time. Headache is mostly part of my experience although it never starts with a headache but, as the attack takes hold, this pain dominates my physical body, my emotional functions, my senses, even my reasons for living.

I don’t know when all this started. I did not have childhood migraines. Yet, as far back as I can remember I had visual disturbances, once or twice hallucinations, as well as the delightfully named Alice in Wonderland syndrome. I had no idea what these visual disturbances were so assumed everyone had them. With Alice in Wonderland syndrome you shrink or everything else enlarges. Or it did for me. Charles Lutwidge Dodgson (Lewis Carroll) is one of many famous migraineurs who put these symptoms to great use. It happened to me when I was in terrifying situations e.g. a new school in a strange place (the teacher would get further and further away as the room elongated), a scary bedroom away from home. They tell me it is caused by abnormal amounts of electrical activity causing abnormal blood flow in the parts of the brain that process visual perception. Abnormal blood flow is pretty heavily involved in the hammering headache.

From puberty onwards I had period headaches which are pretty routine. The only thing which persists to this day is that they would last until I gave in and took medications. I tried sometimes for days to sit them out, but pain wins in the end. From my late thirties onwards three-day full-blown migraines removed me from the well world. They gave me a six-month year.

For the other six months I inhabited a parallel universe. One with no credibility.

Next: All dreams Die or The Venue Must be Trashed

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