14. Amelioration

14. Amelioration

7 July 2024

My search for explanations, cures or even temporary relief never ceased until relatively recently when I finally grasped that shutting down when overloaded, in whatever way, was just how I operated/survived. Having accepted this, I stopped being in conflict with myself. Better still I stopped trying to project a well person unhindered by a condition (perceived as a weakness). I also knew that others would never understand. How could they? Conditions we have never experienced will always be a mystery despite empathy and sympathy pouring from us. Plus, malfunctions or even differences are seen as conditions in search of a resolution, or best hidden. I did try for decades to hide its full effect. And perhaps this too is survival.

Some years ago, before I gave up my search, I decided to go for a daily swim. This was long before it was called ‘wild swimming’ and a ‘thing’. The sea, in the form of Loch Linnhe, is outside my gate so I reasoned that this exposure to salt water would boost my circulation, excite my brain and perhaps calm the blood vessels’ habit of blowing up and deflating themselves and so causing the throbbing so typical of this condition. For several years I swam everyday whatever the weather, despite being told I could have a heart attack. The reality is that the sea temperature doesn’t vary much here on the west coast of Scotland and is between 10 and 13 degrees, which I soon got used to. A wetsuit was always too much of a nuisance and I wanted the salt water on my skin, not on some man- made protective layer.

When swimming didn’t have the hoped-for effect, I kept it up but decided to add writing with my left hand to my increasingly outré remedies. This wasn’t entirely random but based on the fact that when I was not well and seeking treatment, some health professionals would remark (in an accusatory manner) on my board- like neck muscles. Being totally right-handed, I hoped resting the right neck muscles may be effective. So, among my new year’s resolutions in 2009 was to write with my left hand, which I did for more than a year. (Another resolution that year was never to mention the word migraine again). Couldn’t keep that up, obviously.

While my left-handed writing became legible, it had the added effect of slowing me down mentally in a good way. With yoga practice and teaching I had tried to favour my left side whenever possible, knowing that we habitually favour the side we overuse. It was not the cure I sought.

Then along came Botox for migraine, which the Scottish Medicines Consortium (SMC) offered in 2012 before anywhere else in the UK. While I was not thrilled at the idea of Botulinum toxin being injected in several places around my face and neck, I was willing to give almost anything a go. But before I could risk losing my frowning muscles and perhaps the use of one or both eyelids (I read the bumph), they changed their funding minds. These days, though, it is available in the UK for those with chronic migraines, i.e. at least 15 headache days a month, with eight of those being migraines. In Scotland, you have to have failed to respond to three oral preventive treatments and sorted out any medication overuse.

It’s not clear why, or if, Botox is effective in migraine. Word is it may block neurotransmitters that carry pain signals from within the brain. I have not yet tried it.

Of course I continued my yoga practice, as well as biking, walking and running, but I stopped headstands, handstands and shoulder stands. Being upside down is extremely good for the circulation, but it is possible to stimulate this with aids or leaning over chairs etc. I had long suspected head and shoulder stands may not be helping, as it is not always easy to do them safely without irrelevant muscular tension.

Ironically, because the word ‘stress’ is so often posited as causing migraines, yoga is prescribed for migraineurs and others with ‘stress-related’ conditions. This is based on the fact that yoga is relaxing! Yoga is, in fact, very demanding and subtle and promotes physical, mental and emotional changes that may or may not address migraine triggers. Savasana, the posture which concludes yoga sessions, is the relaxing pose, and that alone is seldom going to address such a mysterious set of symptoms as a migraine presents.

Being overloaded will have many causes, not the least being our social order, viz., planetwide patriarchy, whether extreme or apparently benign. Patriarchal power is always in the hands of very few and it can appear selectively sympathetic, especially nowadays when it is discussed as it never was earlier. But we have always been programmed not to notice inequities. Noticing a few obvious ones does not fundamentally change our status. Females, of whatever colour or creed (and the majority of males but that is for them to state/investigate), can never know the effect this has on us as a gender or as individuals. I believe it to be profound.

Being thought lesser from the moment of your birth whether by your actual parents or not, and often certainly not by them, is not something that has ever been measured or will ever be measured. It is so taken as read as to be invisible. Much cant is spoken about the future being female and females can do whatever they wish these days, but vested interest is never going to let that happen. The future is always female, as without us there is no future. (Herein lies the seat of male fear but that is too large an area for a book on migraines.)

Whatever the root cause, we are a colonised gender and just like colonised countries we exist to be exploited or considered a delight if we play along. Simply being prey to random male violence is shocking. Even more shocking is that it is not seriously addressed by the power holders. Many humans are prey to other humans, but when one gender is programmed to see the other this way it means that an entitlement and guiltless licence goes with the preying. This alone should give us all migraines or something.

But this social distortion, whether or not we are aware of it, is always going to lead to having to fight on every level, even on a cellular level. The social order is not there for us and that is certainly true of medicine. We may benefit or not, but the biological blueprint they are following is white and male. Which is really limited. And yes, we notice.

When we are younger, we have the energy to fight consciously or unconsciously. When society is fundamentally unbalanced then all will be unbalanced on some level and to some degree. The entitled, and they are a relatively small group, can live blameless lives, never investigating their entitlement. But they are damaged by it too.

For better or worse, I was very young when I sensed, and then saw, the apparently invisible barriers. Whether I can thank my migraines for this I will never know. But it was not a comfortable knowing. A small example: I wanted to be an altar girl. Of course I did. Who wouldn’t? All that poncing about at Mass looked important. Even today, girls (daughters of the patriarchy) are urged to dream not of being important but of being princesses. Because of this knowing, for a long time I had to live with being called a man hater and other absurdities.

For some females in the past, entering a religious order was a refuge they opted for or, more commonly, were banished to. A famous creative migraineur, Hildegard of Bingen, is said to have spent many hours in her darkened room having, it turned out, visions. In the 12th century, composers who were not male could enter religious orders and live out their lives in a female friendly world. There, relatively unbothered by the male religious hierarchy, despite it being the blueprint they followed, they could often be quite self-sufficient. Her role as a musician (and much else) would not have been possible outside this cloister. And neither would her visions have been tolerated. Visions of any sort have always had to be sanctioned by a patriarchal religion. A non-participant in such groups would simply be mad.

Visions, we now think, are part of the aura phase of a migraine, which can have many manifestations, the most common being parallel zigzag lines across one’s field of sight. People who never get headaches can see these; they are so common. The more elaborate light shows or apparitions that are so real they cannot be denied, are less common or are more readily associated with a fever. As a child I certainly, at least twice, had a vision – once when an adult man appeared beside my bed and began talking. I screamed so loudly my mother said: ‘You go Bill, she may be being eaten by a rat!’ Most memorable was that my father believed me and went all around the house with a torch looking for this man. To this day I can see his torch waving about outside the bedroom window and can feel the gratitude I felt on being believed.

Another vision involved my body being used as a playing field for boys to play rugby on. It’s not hard to interpret that. Aged seven, it made me feel I was being slowly suffocated. I can experience both these clearly to this day. Had I identified the male apparition as Jesus or a saint, you may well know about me and Palmerston North may have a shrine.

A less spoken of but common experience is feeling super well and effective the day or several hours before an attack. So well, in fact, that I seldom think, ‘this is odd,’ but accept my prodigious abilities as normal.

Unlike Hildegard, modern migraineurs are not cloistered with their everyday needs met by lay nuns, a lesser class of person whose role is to selflessly serve. Increasingly whatever our situation or condition, we are expected to live as though normal and that, I have finally concluded, is the hardest part of this mysterious condition and many others. As society becomes less and less inclined to support what they call ‘the weak’, and more and more insistent on our being productive and a ‘success’ as defined by them, simply making a living, or feeding, clothing and supporting oneself becomes a mountain to climb.

If I could change anything, I would change that. I would like all humans to be fed, sheltered and clothed so that life is possible with or without conditions, illnesses or disabilities. Access to these things should never be extras we have to earn but basic needs met. A social setup that does not meet these needs is cruel and exploitative. It is based on a very narrow definition of what it is to be human and creates a huge proportion of the difficulties we all face.

And with all that goes the very narrow concept of success. Accumulating wealth, status and possessions is not success, but a gigantic delusion leading only to a desire for more. Success lies in our depth of understanding, our ability to accommodate with warmth and levity our own and all human conditions. And thus, kindness to each other is easy and normal, and the social order is transformed. While suffering happens in all species, the very planet is now suffering.

While pain is not a joy, it is a lot more bearable when understood as part of life on our planet earth. Fundamentally, all life is connected and requires communal nurture. And with levity as the seam that runs through our beings, we minimalise self-pity and this, melded with kindness, compassion and empathy for ourselves and others, leads us to depths and heights no condition, even severe and frequent migraines, can destroy.

There may not be an answer to an individual’s condition, but there are plenty of answers to alleviating personal suffering and the horrifying destruction of this astonishing planet.

A migraineur may dream.

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