How I faced up to epilepsy

It was two many years ago that Matt Thompson met Helen Stephens, a freelance model. His plan was to go to Epping Forest and get shots of her against autumn leaves. He is a specialist photographer, and Helen nevertheless has a image he took that day on her mobile. She appears lovely but zapped: “I was lying down since I was exhausted,” she laughs. There is no puzzle about why he picked her for the task – the unsullied attractiveness, the porcelain skin and autumnal hair. And it was on that day – prior to they began a romantic romantic relationship – that she mentioned she had epilepsy, a situation that has an effect on 65 million folks throughout the world.

In the Uk, 600,000 individuals – one particular in 103 – has epilepsy. And – extraordinary statistic – 87 new circumstances in this nation are diagnosed every day. However in spite of its prevalence, most people know tiny about it, and Helen did not make a large deal of it that day. She would not have needed it to define her. In addition to, she is something but a moaner.

“It is a hideaway,” Helen says now of Matt’s stylish, secretive mews home in Walthamstow, London exactly where the 3 of us meet. It was in this sitting space, with the help of a dropdown screen and homely props (ladder, mops, sheets of card) that their photographic undertaking began. Matt had the concept of a series of portraits – about one particular a month across a 12 months – that would show the influence epilepsy has on the feelings: the confusion, exhaustion, the volatile states of thoughts. They would publish them as an e book, with captions taken from her diary to describe what the photographic portraits could not.

The consequence is a effective, moving document of eerie attractiveness that requires the measure of the minute. It is a double commentary: Matt on Helen Helen on Helen. And she is capable to do the extremely issue she are not able to in epilepsy’s grip: make herself emotionally current, fill in the gaps: “Whenever I’d experimented with to analysis epilepsy, almost everything appeared to be about the seizures. I desired to check out the emotional side.”

Epilepsy is the consequence of extreme, abnormal cortical nerve cell exercise in the brain, and is unpredictable – various in severity from individual to individual. It tends to have no underlying cause, although some men and women build it by means of stroke, brain cancer or damage, drug or alcohol misuse. Epilepsy Action says there are as many as forty sorts of seizure – and it is simple to get bogged down in the clunky terminology (tonic-clonic, tonic, clonic, myoclonic, absence and atonic seizures). People frequently presume epilepsy includes only convulsive seizures (tonic-clonic) and know practically nothing of the less conspicuous, non-convulsive seizures (atonic) – absences, with lowered consciousness, that may final no far more than ten seconds and look like a passing reverie.

There is small knowing of the condition’s emotional influence. It can lead to anxiety, depression and even, in uncommon circumstances, psychosis. “Every person knows at least a single individual with epilepsy,” Helen says. “I wanted individuals to consider: that is what I go via – or have witnessed.” For Matt, there was a further component: “I was struggling to realize what Helen was going through.” Now, their undertaking full, they hope it might point somebody undiagnosed in the proper path.

Helen has purpose to come to feel strongly about this: her epilepsy was not diagnosed until she was 23 (she is now 28). Her mom asked a wellness visitor: “Why is my little one shaking?’ and was told, “She’ll increase out of it.” A doctor dismissed it as “nothing”. Helen says: “My dad and mom even now will not forgive themselves.” If it had been diagnosed when she was a toddler, a ketogenic diet (higher unwanted fat, protein, lower carb) may well have arrested it. Helen is nonetheless striving to reassure her parents: they should not truly feel guilty for trusting professionals.

At college, she was a capable pupil whose grades, at 15, nosedived. With epilepsy gaining on her, she could not focus: “I gave up – it was quite upsetting.” She had loved reading but now could only “flip via the pages of a magazine”. She was not having flamboyant seizures, just mini-absences. Little ones would tease her: “I was thick-skinned and a bit mouthy, it didn’t bother me much.” As a teenager, she went by way of a wild patch with manic mood swings, “almost as if I have been bipolar”.

helen2 ‘Today I had a tonic-clonic seizure, the textbook hey-appear-at-me-I’m-epileptic type of seizure…’ Photograph: Matt Thompson

It was not until her intervals began, at twenty, that the key seizures commenced. She was living on her own: “It was scary. I did not know what was going on.” She assumed they must be panic attacks. Extremely, a GP once again failed to make a diagnosis. “Are you sensitive to flashing lights?” She was not – and was told she did not have epilepsy (only three% of folks with epilepsy, she has considering that discovered, are photosensitive). Nor did the GP know about the connection amongst epilepsy and menstruation: it is frequent for epilepsy in ladies to get started with their intervals and for the periods to commence late. It took the intervention of Helen’s loyal and “assertive” good friend Francesca to push for clarity: “She informed the doctor: ‘I’m not acquiring off this phone until you have referred my buddy to a neurologist.’”

There is no certain remedy (although epilepsy often stops of its own accord). For 70% of people, medicine suppresses seizures altogether but Helen is in the unlucky thirty%. Therapy varies for each person. And for Helen, medication has been a mixed blessing. She requires Lamotrigene: “You really feel worse just before you feel far better. The tablets exhausted me. I went from get together animal to feeling like an previous granny. I could not function.”

She tried other medication – she was allergic to some, other individuals made her truly feel suicidal. Now she is back on Lamotrigene and Clobazam, a benzodiazepine (“if I feel a seizure coming on, it often nips it in the bud”), and progesterone.

She grew up in Southampton and worked for ten many years in the nursery department at John Lewis – “I truly miss it” – until finally the epilepsy grew to become also significant to proceed. When she and Matt got together, she would devote weekends in London and travel back to Southampton in the course of the week. Days often started at five.30am. Tiring for anyone, shattering for Helen. She experimented with not to admit the toll that travel, a new schedule and the fatiguing drugs were taking: “I acquired so sick of being tired…I asked myself: would I rather have the seizures?’”And with out telling anyone, she stopped taking her drugs.

It was Helen’s epilepsy nurse, Kim Morley, who guessed what was occurring. “Kim is great – my lifeline – assisting with medicine trials, pinpointing what leads to seizures, informing me about my rights – asking: ‘Do you know you are eligible for a free of charge bus pass due to the fact you can not drive?’”

To Matt, it must have appeared inexplicable. “He was really upset. I located it tough to explain. I felt it [epilepsy] was taking in excess of my daily life. Medication was my a single bit of control. With out wanting to sound petulant, people stored reminding me to consider medicine which manufactured me really feel nearly a loathing…” Kim informed Matt: “You can not maintain reminding her, let her have that one particular issue.” Helen goes on: “Matt is quite sensitive. I was so concerned about obtaining a seizure in front of him, it elevated my seizure action.”

Matt describes how he felt when the 1st main seizure struck: “I was frightened. I remember obtaining to request her what to do. All you can do is make confident there is nothing at all she can hurt herself on. I created errors early on. There was one seizure where I was holding her and next minute, she was commencing to fit. I was striving to move items away and that was difficult. It is horrifying when you initial see it. As she had much more, in some approaches it grew to become easier due to the fact I knew how to cope. But the last one particular she had ahead of we broke up, she was clawing at the walls, her eyeballs popping out, arching and shaking – it was truly scary. I identified it difficult since of the feeling she was in distress.”

For Helen, it is not the seizures – which final anything at all from thirty seconds to two minutes – that are distressing, it is the lead-up: “It is horrible, even though at least I have a warning. Some poor guys fall to the floor. I am capable to get someplace safe, although my brain will have started out to go mushy and it can be tough to know the place to go. It is like a increasing feeling going up my legs and body, like some type of paralysis. Sometimes I can hardly breathe, tears go down my face but I am not crying. It is a despairing, sickening feeling that rises up. I want to kick out but cannot. It will get to the point in which I can’t swallow water or a tablet. But the actual seizure – because I’m not totally aware – is a release. [It utilised to take] a long time to rouse me from them. I would uncover it hard to talk. Typically I would sleep – my record was 22 hours.”

What Helen are not able to bear is upsetting men and women. What Matt cannot stand is not being ready to support: “It received to the point the place I realised nevertheless a lot I needed to support – and it’s in my male psyche to want to repair factors – I could not. It is hard simply because, when you love someone, you never instantly realize what they are going by way of.” Maybe the undertaking was their way of attempting to handle the uncontrollable and make something positive of it? Matt says it was difficult to mix the intimate and professional, to help and photograph Helen. “Matt would see me crying – and comfort me,” says Helen. But he also had to be detached. He would quietly set up lights, make room for her. Occasionally she would “pretend Matt was not in the space”. He would work fast to catch the second, a tear on the cheek, a moment’s vacancy, the tugging habit of the hands.

Helen’s seizures are brought on by intense emotion, “when I am over-thrilled or really blue”. She is investigating no matter whether the mood changes are “auras – warning indications. Some individuals see pretty colours, other individuals have a distinct taste in their mouths.” Whatever the verdict, Helen will function with it – she is plucky. But it is a shock when the final entry in the guide lurches into the news that the connection with Matt is over. They are still pals but she tells me she is “devastated”. “1 moment we have been discussing children’s names, the up coming I was possessing a seizure and Matt couldn’t manage it any more. That was such a shock – I am nonetheless receiving in excess of it but feel confident about new relationships. I have constantly been content-go-lucky…”

And she is living at the appropriate time. Before 1970, in the United kingdom, you had been not permitted to marry if you had epilepsy. There are nations exactly where stigma and superstition dominate – in Tanzania, people with epilepsy are thought possessed. She now lives back in Southampton with her sister, Jennifer, who, as a child, coined the phrase ‘going to the negative place’ to clarify epileptic absences – it became the family members joke. But she is heading towards a very good location: “I’m doing work once again – modelling, which is great. I have got independence.” Her method is practical: “I believe: Sod it, as extended as I tempo myself, will not make myself exhausted – management is essential.”

She is unswervingly good about this venture – and brave about its exposure (she jokes about appearing as a model in a newspaper even though hunting her worst). She would enjoy her story to encourage everyone who reads it – whether or not they have epilepsy or not – to communicate out about their lives: “Everybody has anything they uncover difficult.” And she adds – when I am on my personal with her – “Becoming able to speak about weakness makes you powerful.” “Did she truly say that?” Matt exclaims when I inform him about it later. His face lights up: “That is such a excellent issue to say.”

For data about epilepsy and programs for global epilepsy awareness day (Purple Day, 26 March), check out kingdom. Download Matt and Helen’s book for free at Photograph captions written by Rose Bretécher from diary notes by Helen Stephens.

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