Pro-Decision supporters hold placards. Photograph: Peter Muhly/AFP/Getty Photographs
What does it indicate to be professional-selection? What does it suggest, nowadays, almost 50 years after the Abortion Act, when we say we help the correct of a lady to make her own decision about whether she wants to go through with a pregnancy? I request because, more and more, even amongst those who say they are pro-option, individuals who tut at the protestors outdoors Marie Stopes clinics, people who might have had abortions themselves, there would seem to be some confusion.
When, at the end of April, escort, aspiring glamour model and mom-of-two Josie Cunningham informed the Sunday Mirror she was organizing an abortion to guarantee her area on Massive Brother, there was mild uproar. The earliest response was from Mirror readers, 93% of whom said they’d boycott Huge Brother if she appeared on the present, but the anger – and bloggers, when they weren’t promising to pray for her, have been angry – swiftly spread. She received death threats somebody explained they’d throw acid in her encounter she was invited to commit suicide. These alongside disgusted tweets from large-profile medical doctors and liberal commentators. Cunningham altered her mind. “I have not heard from BB bosses, but I am not bothered – I have received much better possibilities lined up. I’m in talks for my own present. It really is going to be a cross among Keeping Up with the Kardashians and Jeremy Kyle.”
A week or so later on, a YouTube video of an abortion went viral. The clip, by 25-yr-outdated abortion counsellor Emily Letts, focuses on her encounter as she breathes, calmly, by means of the brief method. At the finish she says: “I come to feel excellent.” “We speak about abortion so a lot,” she explained, “and however no a single actually understands what it in fact looks like.” It has been viewed over one.5m occasions. “Females are like: ‘Of course everybody feels bad about this of program everyone feels guilty’, as if it’s a provided,” she says in the video. “I will not come to feel like a bad person, I don’t come to feel sad… I knew that what I was going to do was proper, because it was correct for me.”
Once more, the reaction has been fierce – the two from anti-abortion protestors (some responded to Letts’s video with their burning images of her the messages were so aggressive that YouTube disabled remarks) and from those who are passionately professional-selection. The Telegraph‘s Dina Rickman wrote: “I’m not denying there are many issues we want to demystify – I just never believe people conversations must involve YouTube. For me, the video displays there are some taboos we just do not want to break.”
For me? The reactions have illustrated a widening gap amongst the concept of becoming pro-option and the true, day-to-day “Oh shit… oh properly” of abortion. The actual bus to the clinic, the actual flicking by way of Appear magazine, the true tuna sandwich afterwards, the genuine emoticons to buddies. The actual 185,122 abortions in England and Wales every single 12 months, some of which are crushingly unhappy, some of which are difficult, some of which are a huge, large relief, and some of which make every thing much better. How a person feels about an abortion (and, too, a birth) depends on her family, her romantic relationship, task, age, religion, education, the reactions of people around her. Each and every abortion story is various, and some are positive.
These two instances have brought uncomfortable truths about numerous pro-choicers’ emotions to the surface. They’ve proven that many feel that not only are there proper and wrong motives to get an abortion but that women’s (legal, deemed) selections are up for examination.
“If only Josie had stayed quiet about her pregnancy,” you can come to feel folks muttering, “rather than employing it to even more her career, if only she’d been possibly a tiny bit raped, if only she had expressed shame.” If only Emily Letts had cried, just a little, then possibly our liberal shell would still be intact. There is no correct or incorrect purpose for a lady to get an abortion, and there is no proper or wrong way for her to feel about it. For professional-choicers, there ought to be no confusion.
E mail Eva at e.wiseman@observer.co.united kingdom or follow her on Twitter @EvaWiseman
Rob and I were starting to know a handful of folks who have been ill, even though we even now did not use the phrases AIDS or HIV. A good friend would be absent from operate with “critical illnesses”. A colleague at some point died about 1988.
By then we had moved to Brighton, exactly where we discovered ourselves part of a vibrant gay and lesbian neighborhood. But I wasn’t feeling properly – aches and pains, and weight loss. At some point my GP offered me HIV testing, far more to eliminate that likelihood than something else.
To be trustworthy, I had a niggling suspicion, a foreboding, and when the outcomes came back two weeks later on, and I had examined optimistic, I felt numb.
There wasn’t something we could do at this point – no medication to consider, and anyway I was even now apparently healthful. A few months later, Rob made a decision to get examined – he was positive also. But he was unluckier – he fell significantly ill with pneumonia not prolonged right after. Who know which one particular of us had it 1st? Certainly, there was no blame or guilt.
HIV is a quite opportunistic virus. After you catch it, you can get a significant illness like a flu really rapidly, but the physique fights back, and the virus retreats, biding its time in your physique. It can tick over for years, waiting for a possibility when your entire body is weakened by one thing else, to re-emerge.
Then it could lie behind quite a few signs and symptoms and illnesses, like Karposi’s sarcoma, the traditional blotchy skin problem observed on a lot of late stage sufferers. (We utilized to contact that AIDS of program, though that term is not utilised significantly now – “late stage HIV” is more usual.)
We did not inform our households at initial. This was nevertheless regarded as an untreatable condition which impacted folks outside the mainstream, and in Brighton we were in a type of protective bubble.
For two or three years Rob was in and out of hospital. I took medical retirement on the grounds of my very own shortened existence expectancy.
By 1993, Rob was diagnosed with lung cancer – no matter whether due to HIV or coincidental, we didn’t know, and he died in the second week of July that yr at the Sussex Beacon palliative care centre, with out discomfort and with dignity, with me and a handful of pals close to him.
I grieved for Rob, but I didn’t really feel dread for myself. I figured that statistically I was most likely to die of HIV but that wasn’t like saying I am going to die up coming yr.
Above the next number of many years, medical breakthroughs steadily emerged.
My overall health remained alright, but that sword of Damocles was hanging over my head. Men and women close to me have been dying all the time now. Some individuals went to every funeral going. I decided fairly early on I would go to none except my partner’s – and I’ve only broken that after or twice given that.
It was around this time that I observed that AIDS and HIV had been turning out to be a lot more acceptable to talk about. Elizabeth Taylor, tha actress, had a constructive effect and Sir Elton John was carrying out great fund raising. But it was the effect of Princess Diana meeting men and women with serious signs and symptoms in hospital which truly diminished the stigma.
The Conservative politician Norman Fowler, then Secretary of State for Well being, also did a massive volume of excellent – and still does.
Then in 1996, there was an announcement at the Planet AIDS Conference at Vancouver that a mixture therapy had been designed which appeared to handle the virus. It was tough to take, requiring a challenging regimen and typically leaving patients feeling sick and weakened.
But it felt like the dying had stopped – we talked about the “Lazarus impact”. There was a tangible sense of relief.
Then came a sort of survivor’s guilt between us. I grew to become profoundly depressed my partner had died, had friends died, what was there to celebrate? I couldn’t even deliver myself to commence therapy.
Slowly nonetheless, with help from an extremely capable clinical psychologist I started to come round, and 10 many years ago, commenced on combination therapy. I had reached the stage in which I could take after a day treatment method – in my case Nevirapine plus Truvada – with no guilt.
I knew it was working when I grew stronger, and realised I desired to get my life back. I moved back to London in 2007, took a degree in politics and sociology at Birkbeck University, and a Masters in Health-related Anthropology at UCL.
I now perform at King’s School Hospital, London as Patient Representative in the HIV unit where I assistance newly diagnosed patients – and reassure them their lifestyle isn’t above.
Hunting back in excess of the previous 30 many years, clinically there have been enormous advances – a particular person diagnosed now with HIV (and nonetheless in fairly great health), on a nicely selected drug regimen, can count on a typical daily life expectancy. They are possibly not infectious either.
Sadly, a important number still think you will die rapidly with this diagnosis. I can only hope that when I walk into a room – with a white beard, diagnosed back in the 80s, yet nevertheless alive – it sends out a clear message that HIV is no longer to be feared.
For more details, visit the Nationwide Aids Believe in at nat.org.united kingdom
Rob and I had been starting up to know a number of men and women who had been unwell, despite the fact that we still did not use the phrases AIDS or HIV. A good friend would be absent from operate with “serious illnesses”. A colleague at some point died about 1988.
By then we had moved to Brighton, in which we discovered ourselves element of a vibrant gay and lesbian neighborhood. But I wasn’t feeling properly – aches and pains, and fat reduction. Ultimately my GP presented me HIV testing, a lot more to get rid of that likelihood than anything at all else.
To be trustworthy, I had a niggling suspicion, a foreboding, and when the final results came back two weeks later on, and I had tested positive, I felt numb.
There wasn’t anything we could do at this stage – no medicines to consider, and anyway I was nevertheless apparently healthy. A handful of months later, Rob made the decision to get examined – he was good as well. But he was unluckier – he fell seriously unwell with pneumonia not lengthy following. Who know which one of us had it initial? Certainly, there was no blame or guilt.
HIV is a quite opportunistic virus. Right after you catch it, you can get a significant illness like a flu very quickly, but the physique fights back, and the virus retreats, biding its time in your entire body. It can tick above for many years, waiting for a opportunity when your body is weakened by something else, to re-emerge.
Then it might lie behind several signs and symptoms and illnesses, including Karposi’s sarcoma, the traditional blotchy skin issue witnessed on many late stage sufferers. (We utilized to call that AIDS of program, although that term is not utilized a lot now – “late stage HIV” is far more usual.)
We did not inform our households at very first. This was nevertheless considered an untreatable illness which impacted people outside the mainstream, and in Brighton we were in a sort of protective bubble.
For two or three many years Rob was in and out of hospital. I took health care retirement on the grounds of my personal shortened daily life expectancy.
By 1993, Rob was diagnosed with lung cancer – whether due to HIV or coincidental, we did not know, and he died in the 2nd week of July that yr at the Sussex Beacon palliative care centre, without having soreness and with dignity, with me and a couple of close friends about him.
I grieved for Rob, but I didn’t truly feel dread for myself. I figured that statistically I was probably to die of HIV but that wasn’t like saying I am going to die subsequent yr.
Over the up coming couple of many years, medical breakthroughs slowly emerged.
My well being remained alright, but that sword of Damocles was hanging in excess of my head. Men and women around me have been dying all the time now. Some folks went to every single funeral going. I determined quite early on I would go to none except my partner’s – and I’ve only broken that after or twice because.
It was about this time that I noticed that AIDS and HIV were becoming more acceptable to talk about. Elizabeth Taylor, tha actress, had a constructive impact and Sir Elton John was performing great fund raising. But it was the influence of Princess Diana meeting individuals with critical symptoms in hospital which really decreased the stigma.
The Conservative politician Norman Fowler, then Secretary of State for Overall health, also did a massive amount of good – and still does.
Then in 1996, there was an announcement at the Globe AIDS Conference at Vancouver that a mixture therapy had been created which appeared to manage the virus. It was difficult to take, requiring a challenging regimen and usually leaving patients feeling sick and weakened.
But it felt like the dying had stopped – we talked about the “Lazarus result”. There was a tangible sense of relief.
Then came a type of survivor’s guilt amid us. I became profoundly depressed my partner had died, had pals died, what was there to celebrate? I couldn’t even carry myself to begin remedy.
Progressively however, with aid from an very in a position clinical psychologist I started to come round, and ten many years in the past, commenced on blend treatment. I had reached the stage where I could consider when a day treatment – in my case Nevirapine plus Truvada – without guilt.
I knew it was operating when I grew stronger, and realised I desired to get my life back. I moved back to London in 2007, took a degree in politics and sociology at Birkbeck University, and a Masters in Health care Anthropology at UCL.
I now perform at King’s University Hospital, London as Patient Representative in the HIV unit exactly where I help newly diagnosed patients – and reassure them their existence is not over.
Hunting back in excess of the past 30 many years, clinically there have been huge advances – a particular person diagnosed now with HIV (and nevertheless in reasonably very good wellness), on a nicely chosen drug routine, can expect a regular existence expectancy. They are possibly not infectious either.
Sadly, a considerable quantity nonetheless believe you will die speedily with this diagnosis. I can only hope that when I walk into a space – with a white beard, diagnosed back in the 80s, nevertheless nonetheless alive – it sends out a clear message that HIV is no longer to be feared.
For more data, go to the Nationwide Aids Believe in at nat.org.united kingdom
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”.
‘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 epilepsy.org.united kingdom. Download Matt and Helen’s book for free at mattthompson.co.uk. Photograph captions written by Rose Bretécher from diary notes by Helen Stephens.
Today I had a tonic-clonic seizure, the textbook hey-look-at-me-I’m-epileptic kind of seizure, with convulsions, teeth-gnashing, groaning – all the big boys!
It started, as it always does, with the rising feeling – a sickness and despair coming from my toes, like the feeling of nightmares – crawling all up my body and paralysing me so that I couldn’t call for help. Then the dread closed in all around me and everything went fuzzy and unreal.
The seizure’s never the worst bit, though. The worst bit’s when I come to and I see the faces of the people I love. It must be pretty horrific for them to see me all twisted and spitting like that. After every seizure my body mends me, but the guilt is always the last thing to heal.
Soon I felt weightless and kind of euphoric, like I was really stoned. Then the tiredness came. Seriously, nothing can lift the exhaustion once it’s there. It makes my bones feel like they’re too heavy for my body.
Usually after a big seizure I need to sleep all day, but today was different. Today Matt made me get up and go into the sitting room of the house we share in London, where he placed me in front of his photography lights. I sat there, too tired to speak, and he took this photo.
I’m exhausted and the left side of my face tingles where I burst some superficial blood vessels under the skin, but I feel kind of hopeful, now. I’m thinking this could be the start of something.
30 August 2012
I’m fucking scared. I’ve had so many tonic-clonic seizures in the past two weeks – like, ten or more; sometimes twice a day. They come in clusters and this is the worst cluster I’ve had in a very long time.
It probably goes without saying that I can’t work. Occasionally I do a bit of modelling – it’s a hobby I really love and I try to do it whenever I can. But right now I can’t even think about it. My speech is slurred and I’m so tired I can barely move; with every shoot I miss, my confidence takes a beating.
Maybe it’s just the exhaustion talking here, but I really feel like I can’t cope any more. The seizures are now so frequent they’ve left no space for me. What’s the point of being here? What’s the point of taking my epilepsy medication?
Even as I write these words I know that any second the switch could flick in my retarded brain and the epilepsy could take away my dignity and threaten my life and frighten the people I love. And the guilt. It just gets worse and worse. I’m so very, very sorry. Talk about a clusterfuck. Just before Matt took this photo, he asked me to think about how I was feeling, and uncontrollably, I began to cry. I haven’t told anyone yet, because I feel so ashamed of myself, but for the past few days I’ve been having suicidal thoughts.
13 September 2012
I’m out of the other side of the tonic-clonic cluster now, thank goodness, and I managed to get through it without confessing the extent of my depression to Matt. But the epilepsy’s still getting me down in lots of little ways. You see, this condition isn’t just about writhing on the floor in response to flashing lights (contrary to popular belief, only a small percentage of sufferers have this type of photosensitive epilepsy).
There are other kinds of seizure, like the one Matt caught me having in this photo. I just zoned out and ‘disappeared’ for a moment, hence my highly attractive, saggy-jawed zombie face. Sexy, right? Little seizures like this happen pretty often, and for those few seconds I’m not thinking anything, not a sausage. I only know I’ve had one when I miss a juicy bit of gossip in a conversation, or if I’m welcomed back to planet Earth by a fellow human saying my name. In a way this photo is funny. Now I finally see why my friends and family have called me Space Cadet and Dolly Daydream for so long. But in a way it intensifies my sadness. The tonics didn’t start until I was about 19 but I’ve been having these zombie seizures all my life. Why didn’t the doctors recognise them as epilepsy? Looking into these vacant, goggle eyes, I wonder how different things would be now if I’d been diagnosed when I was a child.
9 November 2012
Shortly before Matt took this photo, we’d had a huge argument; that’s why I look so exhausted. It was just petty, domestic stuff, blown out of hand. We’d been packing to leave London for his Nan’s 80th birthday party when we started needling at each other, and then, before long – BOOM – we were at each other’s throats.
Anyway, it was all too much. I couldn’t take it on top of everything else. I was at breaking point. So, mid-argument, I told him my secret that I wanted to die, and watched the wind get knocked from his chest.
Instantly I felt an overwhelming urge to leave, to run away. I was so ashamed. But then he held me, and the relief washed over me in waves. I felt safe. I’m so, so glad I told someone.
I have another secret that I’ll never tell him; I’ve stopped taking my epilepsy medication. It’s so stupid, I know, but I can’t help it. I don’t know why I don’t want to take it. I guess I’m just sick of it making me feel shitty, and sick of being controlled by it. No one knows this and no one can, only me.
25 November 2012
It all came out during my appointment with my epilepsy nurse the other day, when I confessed that I hadn’t been taking my tablets. I hadn’t planned to tell her but when she asked me if I had been taking my medication, I realised she just knew. Matt had come with me for moral support, and he was shocked to say the least.
After the appointment in Southampton (the town where I grew up) I was going spend a few days there with my parents while Matt went back to London. I got a taxi with him to the railway station and we were silent all the way, then he had to run for the train so we didn’t kiss goodbye or anything. All he had the chance to say was this one little exasperated sentence: ‘Your epilepsy’s got worse since you’ve been with me.’ I just stood there watching the train move into the distance.
Mum and Dad thought I should move back in with them so they could look after me; and to be honest, those few days with them were so cosy that I started to think they might be right. They were so supportive! But when I came back to London Matt was saying that we’d make it work, somehow. My parents want me to move back.
Matt wants me to stay. I’m sat in the middle of them like a freaking lemon. Matt took this photo today. I look so torn in it. I just don’t know what to do. Right now I feel like I want to run away and that I don’t want anyone trying to control me. Maybe I’d feel better if I started taking my tablets again?
3 January 2013
I’ve just got back from my first holiday abroad in ages. I went skiing in France with Matt, his mum and her husband for a Christmas break. Overall I had a marvelous time but there were some bad days. The real bummer about epilepsy is that it’s triggered by intense emotions. Like one day I got over-excited and had a seizure on the slopes. I remember very little of it but I know that I was rescued and sled down to safety by Matt and his family. I had to rest the whole of the next day. Dealing with the frustration of inactivity is a big part of learning to cope with epilepsy. Sometimes you want to go outside and climb a mountain or go on an all-day bender, but you’ve got to learn when to reel it in.
I’m back on the tablets now and my seizure activity and mood have calmed, although it took a few weeks to readjust to the meds – they seem to make me worse before they make me better. I’ve got into a good routine and haven’t missed a single tablet, I don’t think… I just can’t stand the exhaustion they bring.
Before Matt came home and took this picture, I’d sneaked on a bit of make-up. When you’re a bit special like me, you don’t get to feel like a bombshell very often, and I wanted at least one photo in the series where I didn’t look completely rough. Unfortunately, being a bit special means you often forget to do things, like take off your boyfriend’s scruffy jumper for said bombshell photo.
7 January 2013
Today was a really good day, mainly because I went to the gym. It might sound silly, but when you’re taking each day as it comes, even the tiniest of achievements can make you soar. Right now I’m tired, but extremely proud.
At the gym I did an exercise class and managed to keep up with the group for most of it. You feel kind of daft doing the moves, but then, everyone else looks pretty lame in those classes, don’t they? It was just loads of fun. I did zone out and get a bit wobbly at one point, so much so that the instructor asked if I was OK and suggested I had a time-out. But my competitive nature forced me to stay on until the end of the lesson.
I slept most of the afternoon, but got up for a photo when Matt got home. His face always lights up when he finds me in a good mood. It’s weird. Tomorrow could be entirely different, but I have days like this when I feel like I can take on the world…
3 March 2013
Sheesh! Epilepsy messes you around. Just when you think things are looking up, your body deals you another blow. I’ve been on my period for a couple of weeks now, and my epilepsy’s got worse again, which makes me think it might be linked to my menstrual cycle, somehow.
Apart from the big tonic-clonics and the zombie, zoning-out seizures, I also get these mini fits where I tightly clasp my hands together, my upper body fidgets, and my arms twitch and rock. Sometimes my head will fall to the left. It only lasts a few seconds.
When we were children my sister used to helpfully and rather endearingly inform my parents that I’d gone to ‘the bad place’ when I was having one, and the name stuck. They really aren’t too bad at all. They’re not dangerous like the full blown tonic-clonics, but now they’re becoming much more frequent and it’s starting to worry me. They’re exhausting me.
Right now I feel like this project is all too much. I’m finding it very difficult to write because I feel so lethargic. And because my emotions impact on my epilepsy, I’m now getting this sick feeling every time I try to describe how I feel. Like the illness has hollowed me out.
I’m in the bad place in this photo. I’d never seen myself having this type of seizure before, and it’s sort of thrilling to see it captured. But it’s eerie, too – coming face to face with that massive unseen part of me for the first time.
13 March 2013
I had a big seizure the other day and I made Matt cry. I’d been out modelling the day before, and in the evening I’d gone out with friends. The tiredness from that is what probably brought it on. I know it’s selfish, but I still want to go out and live my life, whatever the consequences might be.
Matt is finding it more and more difficult. I think he’s slowly coming to terms with the fact that he can’t do anything to fix my epilepsy. He’s such a motivated, ambitious person, so I can imagine how hard this is for him to accept.
We had a long, calm adult conversation about whether it might be better for the relationship if we lived apart. We still want to stay together as we both love each other very much, but it can be really tough being so close to each other all the time. I still want to be with him more than anything.
I’m very reliant on familiarity and routine, and this uncertainty about my living situation is unsettling me. Without certainty I can easily get confused and forget to take my tablets. Plus, any shift in my emotions can really impact upon my epilepsy.
15 May 2013
I’m in the middle of a cluster of seizures. I’m having loads, both big and small, and my body feels heavy from the exhaustion of this current barrage. The lethargy is really starting to do my head in. I want to keep up my gym and housework routine but I just can’t when I’m like this. Still, I’m trying my best to stay calm and allow this cluster run its course. Deal with it, Helen!
Interestingly, after the first of the big seizures in this cluster, I started to menstruate later that day, and it seems more and more likely that my seizures are linked with my sporadic periods.
When epilepsy is affected by the menstrual cycle in this way it’s called Catamenial Epilepsy – a really common subtype of the condition. Periods screw with seizures because oestrogen is a convulsant. So I’ve been having injections of progesterone (an anti-convulsant) in the hope that my periods will eventually shut down and improve my ‘time-of-the-month’ seizures.
When you’re in the middle of a cluster it’s hard to see out the other side, but I’m recovering well from each seizure, and although I’m tired, I feel safe and secure with Matt. We’ve decided to carry on living together.
18 June 2013
Realising that my epilepsy is probably linked to my menstrual cycle has given me an incredible boost. I’ve now discovered that I can have a progesterone jab more frequently in an attempt to nip my periods (and therefore perhaps a cluster of seizures) in the bud before they happen.
I’m feeling so positive at the moment. I’m experimenting with a low carbohydrate, high protein diet, as I’ve read this may help to control my energy levels. Seems good so far. Plus, I’m on top of my routine, which includes housework, gym, replying to emails and writing this diary (routine is what keeps me going). I’m even starting to have the attention span to read books again, which is just smashing. Matt and I are doing well. I’m trying to make a real effort for him now that I’m feeling a bit better, so I’ve been applying make-up and choosing my outfits to feel a bit more girly. It might sound like small stuff, but these are the little, tell-tale signs of a normal life that I’ve craved for so long.
For the first time in as long as I can remember, I feel optimistic about the future.
6 October 2013
So much has happened.
Matt broke up with me in July. I was devastated. One night while we were holidaying in the countryside I had a huge seizure – Matt said I was making demonic noises and my eyes were popping out of my skull; that it was like watching me die. I guess he couldn’t cope anymore. I miss him so much. I miss seeing his mum. I miss London and the friends I was making there.
I’ve moved in with my sister in Southampton, now. She decorated my room with pictures of friends and family, and I felt instantly safe and at home. Every day I have old friends contacting me and asking to meet up. I’m so lucky.
Despite the huge changes in my life, my health is improving. My speech is better and I’m reading more. It sounds silly, but I just can’t stop reading books! It’s such a wonderful feeling to be able to read and understand something without struggling. I’ve been researching more and more about nutrition for epilepsy, and have really upped my game. I’m now doing a ketogenic diet of high fat, moderate protein and almost no carbohydrates. This stimulates the release of ketones, which are natural anti-convulsants. It’s incredible! I can’t explain how much of a difference it’s made. I’m still making sure I take my tablets regularly, but if my progress continues I’ll see if I can lower my dosage.
I’m now hoping to start working regularly again, and I’m researching courses for study. I’m no longer ashamed of the person I am. I feel awake and everything is clear. For the first time in ages, my epilepsy is not defining me, and for the moment, at least, my life has a shape of its own.
