In a moving photo-journal made over a year with her photographer boyfriend, Matt Thompson, Helen Stephens documents the emotional toll of her epilepsy, a disorder that affects one in every 100 people in Britain.
Read the original story on The Guardian website, here : http://www.theguardian.com/society/2014/mar/09/how-i-faced-up-to-epilepsy-helen-stephens-photo-diary
13 July 2012
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.
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.
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.
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.
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?
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.
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…
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.
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.
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.
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.
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.