Before the Diagnosis

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I have epilepsy and at times I have let it own me. I hope this blog will take me on a journey and I can leave the big E trailing behind, at least for a while.

I am a wife, mother and grandmother who loves music and books, film, theatre and reading and writing poetry. Yet I feel I am defined by one thing, epilepsy.


Before  the Rains Come

Our aspirations are our possibilities”. — Robert Browning

I long to go
to other destinations
where everyone
can take off to the moon
and pocket a star.

Maybe I must stay
here with my heart;
but hopes will always
have wings

I am like a willow;
watch me bend with the wind.
From my highest boughs
I can still see the footprints
that lead to me;
each day I ask the sun to shine
before the rains come.

© Christine Magee


There is life before epilepsy. I am one of four siblings, born in Reading in what was then an English rural area. It’s now a very different place and I doubt  I would recognise it, being so built up and the population increased. At nine years old the family moved to London. Actually it was to Greenford, a few miles out of West London, but my mother thought London sounded better. Why, I can only guess. At eleven I was sent to a Roman Catholic private convent and spent school days, up to the age of eighteen, with nasty, bullying nuns and a few  lay teachers. One of them was a complete dragon. A few  nuns were pleasant enough, I suppose. The elderly Mother Superior was the school’s saving grace and I will never forget her kindnesses to me.

In my mid teens a group of friends and I picked up guitar playing, and spent many an evening jamming. During these sessions I had fun and learned to play well enough to accompany myself singing.

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I then became heavily involved in the folk and blues scene. This was in the late 60’s and early 70’s, with the LPs of Joni Mitchell and Cat Stevens, Eric Clapton and Stevie Marriott, spinning on my turntable amongst countless others at that iconic time. I sang in many of the London folk clubs of the day and performed on the stage of The Marquee Club during its monthly Folk Nights organised  by Judith Piepe who worked for the Soho homeless and was an early influence on Paul Simon.

I loved to sing, especially the blues. If I could live my life again I would sing my way through it. It was my joy and my salve. But life didn’t go the way I expected it to.


” Music was my refuge. I could crawl into the space between the notes and curl my back to loneliness ” – MAYA ANGELOU


 

These are mere snippets of my teenage years bringing me up to meeting my future husband and going to Goldsmiths College to train as a teacher. I spent three happy, healthy years there, meeting new people, doing as little work as possible to pass my exams  and making a lasting relationship with two special friends who have stuck by my side, and my husband’s, where others have cut themselves away. When epilepsy becomes  a constant companion, it doesn’t leave much room. That’s how it seems to me, anyway, but maybe it’s not too late to change my mind.

There are many other defining events before the diagnosis and I need to be reminded of them.

 

In Her Shadow

 

Poppies

I moved with her in her shadow,
always running behind,
keeping in perfect step with her mood
and trying to usher her out into daylight
so that I could gather poppies in the sun.

And if I succeeded, I was invited to dance
and we’d twirl round and around.
I’d throw back my head
as I burst into her laughter,
weaving in and out of her displeasure
and leaping onto the pages of her good books.
I would become so dizzy with delight
that I’d topple over and slide with her,
back into her darkness.

But years smoothed the tucks and folds
of her troubled mind
and sometimes she brought fresh flowers to my table.
But I never knew how much she loved me
until I fell from between the pages
of the book that dropped from her dead hand.

© Christine Magee

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Loss

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An Early Winter

You’ve survived the dying of a womb
and the severance of four cords,
cool summers and pale autumns,
and now, as I wipe the ravages of time
dripping from your chin
and kiss the crumbs off your mouth,
I can see the scars
where you must have clawed at your neck,
to peel away layers of withering skin.
You seemed to grow old so gracefully;
but perhaps you knew
winter was coming early,
my mother, my child.

© Christine Magee

Always

She sat sewing on the verandah
not alone; in those days
a chaperone was present
at all stages of courtship,
from the early mating display
to the conquest.24646340-178B-4C73-BB29-CA7335422496

She put down her needle
when she saw him standing there,
with one hand fanning her face
flushed from the heat of his stare
and the other, brushing away his attentions
as though they were flies.
But these were merely gestures
and his eyes, which she always maintained
were the bluest she’d ever seen,
won him first place on her list of suitors.

That is the day they met
and she stitched him into the hem of her dress
for the next fifty years.
When death asked to be her partner,
there was no mannerly courtship or chaperone present,
or time for her to unravel the thread
and leave some of his heart behind.
Now, the rustle of full white skirts
and the promise of always
have called my father home.

© Christine Magee

My parents were married in 1945 in Columbo, Ceylon, my mother’s homeland.

 

Sunshine On Their Shoulders

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At Sunset

They listened for the last sounds to fade;
of little ones, plucked from the sand,
carried off kicking and screaming
as they waved new friends goodbye.

They saw the trail of sea shells,
dropped by chubby fingers,
and crabs scurrying back under rocks,
grateful for a narrow escape.

At last the beach was theirs
and they giggled and pranced
as capricious summer breezes
whisked the surface of the water
and tickled their feet.

Then the sands began to whisper,
gulls quietening their cries to listen
and a crab crawled out of a seashell
to sniff the salt air.

My children stood motionless,
eyes wide and holding their breaths
and the ocean sighed
as the sun settled down for the night.

© Christine Magee

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Hunting for Geckoes

Bronzed limbs and sun licked hair
under peaked caps and tropical skies,
three children crouched in the sand
hunting for geckoes.

A running commentary
on the habits of a lizard
(and the beauty of a bulging eye)
High pitched squeals of discovery,
a victorious whoop, kisses on cheeks
and sighs of absolute wonderment.

I watched them and I loved them;
an indelible memory.

© Christine Magee

I Am Only Sleeping

I sense you tiptoeing on the rim of my night,
so please don’t pass me by without calling in;
I am only sleeping.
Whisper your way into my ears
and push through the shadows
until you reach my heart and find yourself there.
All I ask you is to stay awhile and
when you leave, my friend, go quietly
and do not wake the sleeping dawn.

© Christine Magee

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Attic Room

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I climb the stairs every morning,
to this attic room
and we both turn our backs
on a windowless house;
I have found my peace here.
The paper on which I write
lines the walls,
hiding decay
and inks flows from my pen,
vibrant shades
swirling around my grey world.
On this spring day in winter,
the sun has escaped
and is dancing on the window;
when I applaud, he takes a bow.
He knows I come here
to enjoy the daylight;
I have taken root
in all four walls of my attic room
and I am beginning to flourish now.
© Christine Magee

Triggers

Not all of us with epilepsy know for sure what triggers our seizures and some of us do. These individual triggers don’t cause epilepsy itself, but might provoke a seizure.  Although they are not identifiable in some people, it is important to recognise some of the factors that are more likely to cause a seizure. However, what is a trigger for one person may not be for someone else. Keeping a seizure diary over time, noting all details about seizure, often a pattern will emerge and it can become clearer what the individual’s triggers are.

SOME COMMON TRIGGERS

  • Forgetting to take medication is perhaps the most commonly known trigger, or not taking the correct dose. Research shows that missing just one dose could cause a seizure. Forgetting has always been a problem of mine and a tablet organiser (and often my husband!) helps me keep track. I also have the correct doses written down for those days when I might need help from someone other than family..
  • Feeling tired or not getting enough sleep can be a trigger. Although it’s not always easy to get adequate rest, it is important to try, so as to reduce the risk.
  • Alcohol, particularly having a hangover, is a common trigger because that is the stage when the brain is dehydrated. Also recreational drugs – illegal drugs and legal highs because there is no control on what goes into these substances and they could provoke seizures or interact with medication.
  • Stress doesn’t actually cause epilepsy but it may trigger seizures for some people who already have it. Also, epilepsy itself causes stress, therefore it’s a vicious circle. Living with the threat of losing control of your body weighs heavily on the mind and is the cause of a great amount of anxiety and stress. Some people don’t sleep or eat well, drink too much, turn to recreational drugs and suffer from anxiety and depression. Therefore, there is a close relationship between stress and epilepsy.
  • Flashing and flickering lights, strobe lighting and certain patterns can trigger seizures in people with photosensitive epilepsy.

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On my first visit to the epilepsy clinic in Manchester, I was encouraged to keep a Seizure Diary and to be as detailed as possible about each seizure, the time and place etc. I wasn’t keen on the idea as I found it tended to focus my mind on seizures, and my method of coping was to do the exact opposite. However, I knew keeping a seizure diary had earned its place as a very helpful diagnostic tool. If someone had asked me, at the beginning, if I had any obvious triggers, I would probably have said  there were a few, but over the next few months, a pattern had emerged. I had seizures under supermarket lights and felt dreadfully unwell when looking at food displayed under direct light e.g. the meat counter. I had a seizures when fluorescent lights flickered because they were faulty. Over Christmas, flashing tree lights affected me and also camera flash, mainly when a photo was taken in dark surroundings. During an open air carol singing concert, the singers and audience all held candles and the flickering flames triggered a seizure. Sometimes there were lights and flashes on television which triggered a seizure but not the television itself. I was ironing a gingham skirt and the pattern triggered another one.

It seems hard to believe that I didn’t make a connection between my epilepsy and all these events, or at least, only a loose one. I had frequent seizures and didn’t think beyond that. I do remember telling a doctor that I’d had seizures when out shopping with my family in supermarkets and, in fact, that’s where I had the first ever event, before epilepsy was diagnosed.. His answer was a sarcastic  “No, I don’t like shopping either.”  Eventually I had hospital tests and was told that many of my seizures were triggered by flickering and flashing light. I am also sensitive to certain patterns like stripes and checks.

Only  3% of people with epilepsy have photosensitive epilepsy although many assume it’s more common.  My life has been very affected by seizures being triggered by lights, and having to avoid certain lights. Flickering and flashing lights are everywhere! I have been into a shop with a flickering faulty fluorescent light and it was still faulty weeks later! Camera flash causes many problems. Everyone loves to take a photo and they take them everywhere. One of my children’s Christmas concerts was disrupted by me having a seizure, when several cameras started flashing. It was very distressing and I couldn’t bring myself to go to any  other similar occasions because the same would happen again and I risked my children being distressed. I stood outside the school, just for them to know I was there. And when my daughters were bridesmaids, I stood outside the church- I have had to miss many weddings. Over the last ten years my son and daughter and other members of my family were married. I was so moved when they asked guests not to use flash camera settings for medical reasons. At last, I could take full part in the day. Although, a cinema film itself won’t trigger a seizure, flashing, flickering and strobe lights that may be in the film, can. I have not been to a cinema for about twenty years because of it. The same applies to the theatre, until a few years ago, when our son and his husband and our two good friends, encouraged my husband and I to go, first to London and then to Chichester, to see shows. They took the trouble and went to the expense, of going to see some of them first, to check the lighting. It’s hard to describe how good it felt to see a show at last. If anything is going to make my heart beat fast, it’s music and dance and before my life took an unexpected turn, it was music and singing that was a big part of my life. We saw quite a few shows with them until, life took yet another turn; but that’s for another time.

During a routine appointment with my epilepsy specialist in Manchester, I was talking about my problem with lights and how badly it was limiting my life. By then the majority of our friends had drifted away, because our relationships had changed since I’d been diagnosed with epilepsy and I was experiencing so many negative attitudes towards my seizures, that I’d lost confidence. I was unable to leave my house on my own, so also having to avoid the light triggers as much as possible, my world became an obstacle course and it virtually closed down.

My consultant was specially understanding and stands out, in my experience, as one of the few doctors who appeared to get under the skin of his patients. He gave me the tip of covering one eye when exposed to a flash etc. as the brain is only affected if both eyes are open. That has worked for me on many occasions. He also arranged for me to see Professor Arnold Wilkins, a scientist working with the Medical Research Council at Cambridge University, who had an interest in the research of Photosensitive Epilepsy. There were early reports of coloured glasses, usually blue, reducing some photosensitive seizures. He developed a diagnostic instrument which allowed a more scientific way of choosing the best colour. My husband and I travelled to Cambridge and Professor Wilkins proceeded with his test. The results showed that blue lenses could help me and may reduce some of my seizures. When I went to my next hospital appointment, I still hadn’t had the appointment from Cambridge, to pick up my glasses. Also, my consultant was on leave and I was seen by his registrar. The communication between the two seemed to have been non-existent, as this doctor didn’t know about Professor Arnold, the glasses, and the work he did, and he wasn’t really interested! He wanted me to start a new drug, Lamotrigine, and to start straight away. I went to Cambridge shortly after and I was soon wearing the startlingly blue glasses! My seizures did reduce in number but whether that was due to the new glasses or the new drug is anyone’s guess.

I wore the embarrassingly blue glasses for a few years. I am short sighted and so they were prescription glasses. The reason I stopped wearing them is another story and again, one for telling elsewhere in this blog.

Photosensitive Epilepsy- Epilepsy Action

Photosensitive Epilepsy – Epilepsy Society

Photosentive Epilepsy- Young Epilepsy

Epilepsy Foundation- Triggers