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#explainepilepsy

Young Epilepsy and the Epilepsy Society in conjunction with River Island are currently running a campaign titled Everyone Knows Someone in order to raise awareness about the condition during National Epilepsy Awareness Week (14 – 21st May, 2017)

Alongside this, they’re also asking for people who are affected by epilepsy – or know someone who is – to help explain what it means to have epilepsy, how it affects them and to help raise awareness using #explainepilepsy on social media.

I’ll be completely honest, when I was diagnosed with epilepsy I had no idea what to expect. I experienced absence seizures for about a month after I hit 21 – it was almost like watching a scratched DVD that jumped part of a conversation but it was happening in real life while I was chatting with people! – and then I had my tonic clonic seizure shortly after.

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To be frank, it was frightening. Not only for me but for those around me; my family and my friends. I remember watching TV, blacking out and then waking up at the other side of the room with no idea of the last few minutes.

My seizures are pretty typical of what you would expect to see dramatized on TV – I drop to the floor, my body jerks and I’ll probably soil myself! Yep, pretty dignified… It’s triggered by stress and tiredness (not, as I heard someone in my social circle describe it – flashing lights disease!) and presents itself whenever it pleases. Sometimes I’ve done some pretty weird stuff prior to having a seizure too – my mood can switch to exactly the opposite of how I’ve currently been all day (happy to sad, etc) or I can just decide to go and run every tap in the house without acknowledging anyone. I also get an aura across the bridge of my nose that makes it difficult for me to concentrate so that is usually my biggest warning sign.

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All that being said, and as daunting as being told I had epilepsy was, the biggest hurdle I’ve had to overcome is recognising myself not as an epileptic but as a person who has epilepsy. In my opinion, to call yourself an epileptic is to let the condition define you – that’ll be all people see, trust me, I’ve been there.

OK, so I am a person with epilepsy. I’ve had to make some alterations to my lifestyle. I can’t drive but I can use public transport. I had to leave a couple of jobs because of increased seizure activity but I now work at Yorkshire Wildlife Park; only yesterday I got the opportunity to get up close to a rhinoceros! How awesome is that?! I lost some friends who didn’t understand and didn’t have the time for the condition but I’ve got a much closer friendship group now and a family who ALWAYS have my back. I’m a father and a husband. I’m a painter, an amateur artist, a blogger, a podcast host, a nerd and a gamer.

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So, while epilepsy can be scary to look at and it can change your life, guess what it’ll never do – it’ll never beat me.

Please check out the Young Epilepsy, Epilepsy Society and visit riverisland.com/explainepilepsy to find out more!

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Issue Six: Purple Day 2017

Purple Day is an internationally recognized event to help raise awareness about epilepsy, to help support people who have epilepsy and to just have a great time in order to fundraise and educate others regarding the condition and the effects it has.

As I’ve said before, being diagnosed with epilepsy can be incredibly daunting and it’s certainly life changing. For many, the initial diagnosis can seem frustratingly limiting (for example, some have to give up their driving license, others may have to have round the clock observation or support, etc) and, for me, it was certainly something that worried me for a long time until I spoke to others who had the same condition and other hidden illnesses. What if was never able to drive? How would I look after my kids on my own? Could I even take a shower without someone waiting outside the room anymore?

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Over the years, I’ve learnt to resolve many of these problems with support from professionals, colleagues and family. The most important thing I’ve found though, and the one which breaks down the most barriers, is definitely being able to provide understanding. As soon as people realize you CAN almost everything they can (obviously this is dependent on your diagnosis, how epilepsy presents itself for you and what your triggers are), they begin to accept you again. I think, from my own experience certainly, they’re more afraid of epilepsy than you are – it’s certainly a huge responsibility supporting someone through a seizure – but once you can put their mind at ease, the tension seems to ebb.

So, the more people who are aware of epilepsy and have an understanding of the condition, the better, right? Of course!

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Purple Day 2017 is on the 26th March and it’s really easy to fundraise. Just ask for a pack from any of the many epilepsy charities out there – Young Epilepsy, Epilepsy Society, Epilepsy Action to name but a few – and they’ll send one out to you ASAP. Wear something purple, paint your face, hold a coffee morning or go out on a run – literally anything you can think of! Your fundraising pack will contain all the information you need, help planning your event and also resources to help promote epilepsy awareness.

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I’d like to run an auction. The highest bidder can have their own piece of art on a canvas that’ll I’ll produce using a mix of different media styles. Bear in mind that the majority of my artwork is based on current pop culture pieces, science fiction, comic books and monster movies, so if you try and link it into one of those categories, that’d be awesome.

Please hit me up on Instagram, Twitter, or message me via the blog for more information and we’ll see how much we can raise for the campaign.

Happy Purple Day everyone!

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Rob Richardson

Rogue Anteater Inks

Issue Four: Staying Positive

Sorry for the delay in getting another blog post up! Part of the reason I haven’t posted has been due to having another bout of seizure of activity and that, in part, prompted me on what subject to write about next.

It’s hard when you have any sort of hidden illness to remain upbeat all the time. Not only do you have the condition itself to face, the stigma from others but also feelings of anxiety and depression that come with that.

The way that both affect me is probably quite weird to understand but actually makes perfect sense to me. When I have a seizure, I lose consciousness. I convulse, I lash out, I spit and I soil myself. I often wake up battered, bruised and feeling humiliated. The majority of the time, I have a warning that I’m about to have a seizure but I can never really predict why or when they will happen. So that makes me anxious.

The longest I’ve gone without a seizure has been nearly three months. And I think I got complacent with it. I was then horrified the next time I did lapse and this upset me deeply. It made me think, once again, that I will never see an end to this. Hence, feelings of depression.

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It can be really hard some days to stay positive, some days are a lot harder than others, and it’s really flippant to just say “Cheer yourself up.”

I was very fortunate in gaining a position at Yorkshire Wildlife Park, a wildlife preserve that offers homes to lions, tigers, leopards, rhinoceros and many, many more animals. Being able to walk round and appreciate some of these incredible creatures everyday helps put things in perspective for me.

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Exercise also helps immensely. Going to gym, even just going on a long walk, helps release endorphins which naturally help the body feel better.

Most importantly of all though, is maintaining a strong and informed social network (and I don’t mean regular Facebook updates…). My family is key to me. My wife is my absolute rock and stayed with me despite of myself. My children are all experts in how to deal with a seizure – they’re true heroes and are rarely fazed by how their dad looks following an incident. My friendship group is small but amazing. No-one I associate with judges me anymore, they all support me when I’m not at my best and never, ever pity me. They can be harsh at times but they’re always honest.

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It might sound chintzy to simply say STAY POSITIVE when you feel limited by a condition such as epilepsy but it really is the most important thing you can. Find something you love and that you can be proud – for me, it’s my artwork – but it really could be anything. And surround yourself with people who love you for who you are, not those who see the condition first.

I hope my posts help a little and feel free to get in touch.

Many thanks,

Rob

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Rogue Anteater Inks

Issue Three: Dealing with Stigma

If I’m completely open and honest, one of the most difficult aspects of coping with epilepsy hasn’t been the condition itself; it has been finding out what people think of the condition. You would think, in today’s modern society, conditions such as epilepsy would be well understood or discussed openly.

 

Of course, that has frequently been an assumption I’ve gotten wrong.

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It seems that any sort of hidden illness seems to court a “don’t speak, don’t tell” attitude. My own experiences of this have often been, after disclosing that I was someone with epilepsy, everyone I spoke to knew someone who also had it – or had grown up with it, seen someone have a seizure, etc – but had no clue how to deal with it. I was also branded almost immediately as an ‘epileptic’ – a label that many saw defined all of my characteristics, what I capable of and the fact that I probably should have been walking round the village with a bell tied around my neck!

 

When I was initially diagnosed, my friendship group shrank dramatically. I once overheard a conversation describing me as having “flashing lights disease.” Interestingly, most of the branding I received (and this is REALLY important to remember) is born out of ignorance of the condition.

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Obviously, being labeled did get me down. I found myself going to job interviews and not disclosing the condition after failing three interviews prior to this. While the reason I failed to get the job was never discussed with me, it was quite obvious epilepsy had played a big part in this.

 

The best thing I found to do was to start informing myself first. If you know a lot about your condition, your support, your recovery techniques and your triggers, you can wear it as a suit of armour in the event of any adverse discrimination you might face. People won’t handle you with kid gloves if you don’t allow them to. I have written my own protocols on how best to support me in the event of seizure and how best to help my recovery. I’ve found that if you’re prepared to answer questions about your own unique condition, it helps break down a lot of walls.

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I’ve also been sure not to acknowledge myself as an ‘epileptic.’ To do this is to give power to the condition, to make it define who you are. I am Rob Richardson, father of three, married, worked in social care management for over 12 years, currently loving life at Yorkshire Wildlife Park and an amateur artist – who also has epilepsy. See how different that sounds to I am Rob Richardson, an epileptic. There are so many other things that make you the person you are, epilepsy is far from being that.

 

It did mean I had to look at my friendship group again. But that’s fine. People who judge you based on the fact that you have seizures aren’t worth your time anyway. People who really care, who don’t feel burdened by you, will stay around regardless. Let the other fall by the wayside – you don’t need them.

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Finding help with my art therapy group also helped my confidence again a lot. In that setting, no condition matter because everyone had one and everyone wanted to prove that they were more than just another label. We all refused to allow it to define us.

 

It’s hard to fight against stigma but it can definitely be done. Stay informed and stay positive. People will always judge you – just make sure you don’t end up judging yourself for something out of your control.

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Issue Two: Fists of Fury!

Danny Rand, AKA Iron Fist, is one of a long line of superheroes created at Marvel Comics that has continued to capture imaginations to this very day – including mine! The hero, orphaned and left for dead in the mystical, lost province of K’un L’un, where he lives among the monks there and learns ancient kung-fu techniques before defeating a dragon and gaining the power of the Iron Fist! And that’s pretty tame by Marvel’s standards…

Built to capitalize on the rise of Kung Fu and blaxploitation cinema and TV of the 1970’s, Iron Fist teamed up with Luke Cage, and later formed the Defenders, which is currently being adapted for television by Netflix. Last week, the trailer for Iron Fist was released and I was hooked.

So I decided on an Iron Fist-centric piece for my next project for the blog. Key to continuing the art therapy is to draw from things that make you emote and to try and gather things around organically. For me, if I have too many pieces lined up, I’ll get stressed out and that’ll make me rush through them or feel negatively about the picture (which is the exact opposite of what I’m trying to achieve) but if I have an idea lodged in my head that I can’t get out, then that gets pushed to the front of the queue!

EQUIPMENT:

A4 Canvas

2b Pencil

Brushes – medium hairs, variety of round and pointed tips

Paints (watercolour and acrylic)

  • Ochre Yellow
  • Lemon Yellow
  • Sap Green
  • Black
  • Titanium White
  • Vibrant Red

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STEP ONE:

For some reason, I don’t make things easy for myself so the canvasses I buy are notoriously difficult to paint straight onto. To start I sketched out the outline of Iron Fist’s head and his fist, punching up towards the air in 2b pencil (I’ve found that the softer the lead, the less likely it is to etch into the canvas). I then mixed up a green/black wash using a water and acrylic mix, covering the canvas – starting away from where Iron Fist’s head would be, allowing me to fade to a light green.

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STEP TWO:

Once dry, I started with a thin lemon yellow/water (acrylic) mix and built up the base colour of Iron Fist. This process took a lot longer than I originally anticipated but I was able to create an interesting blend of sharp yellow, which worked well to help add depth.

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STEP THREE:

I then used a similar mix, slightly more paint this time, but with watercolour lemon yellow. I went over the picture and was able to pick out the detail around the knuckles, shape of the hand and the mask. I then used a light ochre yellow watercolour/water wash to add depth to the jaw and neck. I was also able to use a very weak lemon yellow wash to highlight the ‘smoke’ rising from the character.

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STEP FOUR:

After allowing each stage to dry, I used black to make out the shadow around the eyes and jaw. I also used the ochre yellow mix to continue to build depth into the face and the arm.

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The really fun part! Here’s when I added the detail, using white/lemon yellow acrylic (mixed almost straight from the pot without adding hardly any water) and solely white to define the ‘glowing’ bone structure from within Iron Fist’s hand. I flicked red watercolour onto the face to get a nice blood splatter and touched up more ‘injuries’ around his face and neck. Finally I used a white wash and dragged the brush upwards to give a smoke effect, contrasting this with black using the same technique.

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I hope you like the finished result and let me know your thoughts! And please check out that trailer – Iron Fist is going to be awesome!

Many thanks,

Rob Richardson

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Rogue Anteater Inks

 

 

Issue One: Why I Find Art Useful

If last week’s post was a prologue, then consider this our first issue! Please bear with me; as I put together this blog, I’m experimenting with a few different ways of updating the page, ways of discussing my experiences and how to showcase any artwork I receive.

Firstly though, I wanted to explain why creating pieces of art works for me and what I gained from art therapy.

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As I had isolated myself, what first struck me is how selfish anxiety and depression can be. Coupled with my epilepsy and fear of leaving the house, I became solely focused upon myself, how I felt and how everything affected me. I’m not saying that people who have hidden illnesses are selfish; I’m saying the illness is selfish. It turns everything insular. And of course it does. If something affects how you feel and your self-esteem, why would you look anywhere else? The confusion lies in how you feel about yourself, how much you wish it would go away and getting yourself right again.

I was stuck in a vicious circle – my seizures were brought on by anxiety, I had anxiety caused by my seizures – so I was stuck at an impasse.

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I quickly realised, from joining my art therapy group, that I wasn’t alone. That was the first step. Everyone there had their own problems, personal to themselves, but the unifying factors between us was that we wanted to get better and we wanted to feel less alone.

The first few initial sessions, I kept myself to myself. I sat at a table and sketched. Don’t get me wrong, there were times some weeks that I didn’t want to go – and there were times when I didn’t – but the key (and I’ve found this crucial even more so now when putting together a piece) is persevering.

The art is something that grounds you and allows you to speak without using any words. It gives you focus and slows everything down. No matter what skill people had in the group, what medium they used (crafts, sketching, painting or music); we all found the therapy useful in channeling our feelings in a direction.

One day, everything just clicked. I started talking amongst the group and we shared our experiences. The relief was incredible and the joy at discovering you weren’t alone helped put your own problems and conditions in perspective.

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Art therapy gives you a sense of purpose and achievement. The goal is create something and to finish something while having fun all the while.

Once I’d learned how to manage my feelings and negative thoughts, I was able to better understand my epilepsy and identify further triggers.

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The most important things I’ve found useful during art therapy are as follows:

  • Don’t expect to be creating masterpieces. That’s not what it’s about. Art therapy is about finding a way to express how you’re feeling and to find an outlet.
  • Experiment with different things. You might not be the world’s greatest painter but maybe you can sculpt. Or sew. Or play an instrument.
  • Keep at it. If you start a piece, try and finish it, regardless of what you think. If you feel like you’re losing it, take a step back and return to it. Even if it isn’t your best work, still have a go. If you get into the habit of ripping your work up and throwing it away, it devalues your self esteem; you can always go back and learn from your mistakes
  • MOST IMPORTANTLY: HAVE FUN!!! I can’t stress this enough!

Thanks for reading and feel free to get in touch via the contact page if you want to contribute to the blog!

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Rob Richardson

Rogue Anteater Inks

Artists Against Epilepsy: An Origin Story

As you may have already noticed (if you’ve seen any of my Instagram page), I’m ever so slightly (massive understatement!) into comic books and comic book art. I have been since I was kid. So it made sense, to me anyway, to approach my introduction to my experience of epilepsy in the style of a comic book origin story. It was because of my experiences that I was encouraged to write this blog and hopefully reach out to others who may feel the same or give an outlet to people who may feel more comfortable expressing themselves and their feeling creatively.

Roughly 13 years ago now, I went out with some friends for a drink to celebrate the New Year. When we stopped to meet a buddy’s girlfriend, IT happened. A group of other guys took a dislike to us and we ended up in a ruck. It was only afterwards – after coming to – that I found out my head had been banged repeatedly into the curb.

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A month later, I had my first seizure. I mean, it was really weird; one minute I was watching TV in the front room with my folks, the next (well, actually about 3 minutes later), I opened my eyes to find I was in the hallway, a bruise on my head and I’d soiled myself. I wasn’t familiar with epilepsy at all so this was all extremely frightening at the time, not only for me but for my family as well.

A few more episodes later and I was diagnosed with Juvenile Myoclonic Epilepsy (JME for short), a seizure type  that includes myoclonic jerks (I twitch in my arms and neck), tonic-clonic (dropping to the floor and jerking rapidly) and absences (honestly, I’m not daydreaming or ignoring you!). Later investigations lead some specialists to believe that the head trauma I had received coupled with meningitis as a child had brought us to this place. I also had some elements of Non-Epileptic Attack Disorder, possibly due to the brawl, which made some of the seizures hard to treat.

Now, I’ll be honest, I had no idea what to do. There wasn’t much literature to read and support groups were hard to find. My nurses are brilliant and are also available at the end of a phone but they have an incredible workload. I trialed different medications and am fortunate now to only take on rescue remedy in the event of seizure clusters.

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Before that though, and here’s what lead me to art therapy, was how I felt personally. No one prepares you for how epilepsy will make you feel. I considered myself to be quite an outgoing, confident guy. I had a large circle of friends, I went out and socialized a lot but, following the initial seizures, I found that I just wanted to isolate myself. To be frank, I was scared. I didn’t know when the next seizure would occur, I was embarrassed about what people would think of me and I didn’t want to admit that I was a person with epilepsy.

Crippling anxiety grew out of this. I also became depressed. I lost jobs. I stopped seeing my friends. At one point the seizures grew so bad, I was unable to hold my daughter so that added to my low self-esteem. It was grim.

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Luckily, my wife has always stood by me. She pushed me to try and express myself in other ways. She had to cope with not only my seizures, looking after me in a post-dictal state but also my low mood. She knew I wasn’t (at the time) very open about my feelings and I needed a new focus, something to break the cycle of feeling down. Turns out as well that one of the triggers to my seizures is stress and anxiety so I was perpetuating the whole thing myself anyway!

She pushed me to seek a new avenue with a friend who had remained close and I practiced as an apprentice at a local tattoo studio. This guy was great – he knew about my seizures, my triggers and what to do in an emergency – and he said, in order to become a tattooist, I had to draw every day.

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Seems mad now, thinking about it. I used to draw when I was a kid but, personally, I was never down for art at school. Anyway, I tried and discovered, rather than having any discernible talent, that I enjoyed it. I could lose myself in the sketching and it gave me a focus. Being able to finish a piece of work meant that I had something to be proud of at the end – a sense of achievement.

I visited the Point, an art gallery in Doncaster, and found that they had an art group that met weekly, specifically for people with hidden illnesses, to chat, work on projects and just have somewhere to go where they didn’t feel alone.

It was amazing. Everyone was welcoming and I made some great new friends. It made me feel part of a collective and, after visiting regularly, I felt some of my negative feelings shift. Key to all this was that I no longer felt on my own. My problems weren’t the worst in the world. In turn, this helped me manage my seizures.

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I try and draw everyday now. Whether it’s a simple sketch or a watercolour, it helps. I feel better about myself. I noticed that I could handle my seizures better. And that prompted me to develop the Artists Against Epilepsy blog – an online way of sharing art, talking about epilepsy and the other issues it presents and attempting to help people feel a little less alone. No matter what your skill level or what medium you prefer, I’d love you to get in touch so we can share it on this forum and all push each other to make some really cool art!

And it means I can smash some superhero art while we’re at it!

I hope to hear from you soon!

Rob

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Rogue Anteater Inks

Our First Piece

img_20170204_213812_591Finally finished Arkham Batman piece using acrylics and watercolours on canvas.

One of my passions has always been superheroes; inspirational characters who bring the best out in all of us, moral figures who make us strive to be better, true heroes in every sense of the word.

This is the second piece I developed for the #artistsagainstepilepsy campaign.

The idea is to bring people together who are effected by epilepsy through art – no matter what your talent or medium, this community can help bring folks together and give us a creative outlet, some focus and offer support for those in need. If you know anyone who might benefit, please share, follow and point them in this direction. Thanks in advance.