Other’s Stories

Laura’s Story

I am not just another 1 out of 26. I am a teacher, I am a traveler, I am a learner, I am a writer, I am an artist and I am a person who just happens to have epilepsy. I am here to help inspire and support others by sharing my story and hope to spread awareness. I used to be ashamed of having seizures and the stigma that comes along with them, but I finally realized it is just a part of my life at this point. So, I decided to “Seize the Day” and try to find resources for myself and others. my website is intended to inspire others to travel and explore the world and not be held back by their epilepsy or other health problems they may experience over their lifetime.

Angie’s Story

I had my first tonic clonic seizure on top of one of my first hairdressing clients. I was 17. Split open my head and woke up in the back of an ambulance with a bunch of scrambled thoughts and the paramedics talking to me in what I thought was a foreign language.

In retrospect I had been having Complex Partial seizures for a couple of years but hadn’t told anyone because I thought I was going mad. Also because as anyone who has epilepsy knows, how does one explain those unexplainable feelings. Unfortunately I developed epilepsy due to my dad using my head as a punching bag while I was a teenager. However, I was put on a minimum dose of Dilantin and kept on that even though I had I several more seizures.

Determined not be a hairdresser forever, I had always wanted to go to art school so I saved up and started art college. Unfortunately my memory is so dreadful because of all the seizures and medication I was on, I only have a limited memory of my time there, but apparently I did very well and had a blast. I recently met with some old friends from that time and they filled me in chunks of things that had happened to me that I have no memory of, like the time I had a seizure and insisted on going shopping straight after, wandered the cosmetic counter putting all sorts of random things in my bag. The shop owner locked the front door and called the police thinking I was some mad shoplifter. My friend explained to the police that I had epilepsy , they called the college who confirmed that even though I looked weird (black spiky hair, crazy make up and ripped and torn black clothes) I was in fact epileptic and prone to strange behavior ! I was let go. Clearing out my parents house recently I found a postcard from myself to my mother, sent from Ireland about 20 years ago. I have no memory of being in Ireland. According to my lovely friends apparently I had made my way from London to the west coast of Ireland, stayed a week (it sounded lovely, seemed that we stayed in an old school house overlooking the sea), also transpires I have no memory of holidays on a remote island off the coast of Scotland, Devon, Cornwall and who knows where else?

Anyway, keeping a very long story short, I moved to Los Angeles and even though I had epilepsy I became a boxer, much to the horror of my poor neurologist. But as I said to him, I already have epilepsy, whats the worst that can happen ? Strangely enough it seemed the intense training schedule seemed to keep the epilepsy at bay. However after four fights, I realized I was a rubbish boxer and trained to be a yoga teacher and massage therapist instead. I’ve never let epilepsy stop me from doing anything I wanted to do, I travelled around Egypt, Europe and Borneo alone to see the orangutans (I do remember that), even though I had a seizure there and the hostel owner was screaming that I had the devil in me. Been on so many different meds, with varying horrific side effects, but am now on Lamictal and Vimpat, with Ativan as my rescue drug should I feel a seizure lurking. The seizures are managed but not gone.

All my artwork now has developed from my experiences and living with epilepsy . I made a film last year called Sacred. The ancient Greeks called epilepsy the ‘Sacred disease’, in the mistaken belief that people with epilepsy
were in touch with the gods and we had access to the Delphic properties of prophecy. I filmed myself over the course of five days while having intense seizure complex partial seizures. I have no memory of filming any of it, so editing it was very, very strange, leading me to the concept of “am I who I remember or am I who I forget”.

My last piece was a video installation ‘Alchemy Unveiled’, I had committed with three other artists to doing a self portrait every day for a year, we would then send the images of them to each other. We used anything that came to hand, I would sometimes paint using nail polish, bleach etc. The only criteria was that it had to be done everyday. As I put all my images together onto a film, something became immediately apparent. For the two weeks leading up to a seizure , whether tonic clonic or clusters of complex partial seizures, the work I was producing became darker, lots of deep reds and black. The brevity of the effort I put into the images became apparent, they were short, sharp almost angry, more powerful and intense. Put altogether it was possible to document the onset of the seizure, subconsciously my brain knew a seizure was coming.

Also made a short film called “Don’t Panic” about what to do if you see someone having a seizure, made it quite light hearted and funny so people hopefully will remember it.

Anyway, sorry this is so long, but just to wind up, meeting Cassidy and the lovely Lara at the Hidden Truths exhibit felt like great weight lifted off me. After talking to them I realized its ok to say to people “sorry I don’t remember”, in fact I shouldn’t beat myself up for being forgetful, we should just live in the moment. Its also ok to take care of ourselves and have compassion for ourselves and if the meds make you tired and exhausted, its ok to say to friends , “sorry, I can’t come out, I don’t feel well”. I’m hoping Cassidy knows what life changer that is for me. So today I feel like seizure is coming so I don’t feel guilty to lie on the sofa and just read a book. Thank you, Cassidy, you inspire me.

P.S. The films are on www.vimeo.com/switchbitchery and the artwork is on www.angelastimson.com

Erick’s Story

A photo of me wearing a portable electroencephalogram (EEG) after my breakthrough seizures in 2011

A photo of me wearing a portable electroencephalogram (EEG) after my breakthrough seizures in 2011

In 2006, a journalist in Norfolk, Virginia (me) was on assignment to interview an entrepreneur who ran a charity to support families with a history of abuse. She was there with her husband, a Norfolk lawyer.

The interview took place at the Town Point Club, a members-only venue that caters to rich people. Where prices are not listed on menus and men are required to wear suit jackets to enter.

Well, this here working-class journalist would shake that all up, literally. In line at a buffet, I couldn’t tell you what happened next. Because I don’t remember.

I woke up staring at a metal ceiling with no idea what was going on. Shocked and scared, I looked around frightened, with my head strapped down and my arms tied to metal railings. My first impression was: “kidnapping”. But it was also daylight, and this would seem brazen for a rich couple in the middle of a downtown with a police precinct nearby. The woman I just interviewed placed her hand on my shoulder and said: “It’s going to be all right. You’re going to be OK.”

 

My piece “Coming To Terms” was created in Studio E and retells the story of my first seizure

My piece “Coming To Terms” was created in Studio E and retells the story of my first seizure

I was in an ambulance, and spent the next three days in the hospital. It took a second time two years later to diagnose both as tonic-clonic seizures. After a third time in 2009, I was diagnosed with epilepsy.

 

Presenting my piece “Valentine And Dymphna: Saints vs. Seizures” at the 2015 American Epilepsy Society conference in Philadelphia

Presenting my piece “Valentine And Dymphna: Saints vs. Seizures” at the 2015 American Epilepsy Society conference in Philadelphia

It was a puzzle to talk about it for the first time. How can I explain this to people I care about when they never heard about it before?

I hated the first medication. I think it hated me back. Eventually I found one that worked, but in 2011, the seizures came back. And I was so angry and confused. I thought it was in the past. That I didn’t have to worry about it anymore.

It was then that I understood what I was up against. Epilepsy is like trying to outrun something that doesn’t have to chase you. It’s an internal earthquake that you don’t remember and takes away little pieces of your life.

I learned over time, and as I have to remind myself, you don’t have to let it win. My longtime friend Lisa said it better than I ever could have. “Who’d a thunk it all those years ago that you would have such a frightening interruption come crashing into your life, only to have it followed by a precious gift.”

Today, I don’t fear epilepsy. It is a stress, and having to be on medication almost every day for the last 10 years is annoying. But I can’t say it’s been all bad. I learned how to turn the worst days of my life into the brightest colors from my heart.

My piece, “What Awaits In The Neurostellar?” (lower right corner) at the 2016 Hidden Truths: The Mind Unraveled exhibition in Newport Beach, California

My piece, “What Awaits In The Neurostellar?” (lower right corner) at the 2016 Hidden Truths: The Mind Unraveled exhibition in Newport Beach, California

In 2013, I participated in my first Studio E art therapy sessions in Washington, D.C. This program is intended for people with epilepsy. Since then, I have been able to travel from the Atlantic to the Pacific with my art.

We, and all those who found comfort in places we never thought to look, show that we don’t stay down after we fall down. We will get back up until it is time to be called home.

We will be miserable in our shaking, but we will find comfort from strangers and our loved ones.
It takes the ones who say “we still love you”, the ones who don’t condemn us in front of a child.

The ones who listen, the ones who don’t understand your emotional pendulum but hold on anyway, and the ones who don’t care what happened…they just want to know if you’re OK.
In other words, it takes the ability to find God’s love out of loneliness.

Katrina’s Story

katrinaI struggle daily with Epilepsy and Crohn’s Disease, a combination which has led to an ultimately careful and health-focused lifestyle. Though it is not something I would ever wish on another person, it has resulted in a passion I never expected for health, stress management, and a balanced life.

I was diagnosed with Crohn’s in Fall of 2013, after spending the last year of college going through medical evaluations and tested theories – but, the bigger stall to my “where you see yourself five years after graduation” plan was when I started unexpectedly having seizures. I was diagnosed with Epilepsy (Polymicrogyria) in April 2015, during the second of six closely related hospital trips within nine months.

Epilepsy is a widespread issue that entails much more than short bursts of uncontrolled episodes; many repercussions come with the diagnosis. I lost my ability to work in my normal setting for a year, due to frequent hospital visits and the suspension of my license. It is more challenging than I am able to describe to be held back from completing tasks and being as independent as you feel you can be because of a condition where you lose control.

I have made great strides in managing my epilepsy and, with the phenomenal help of my epileptoligist, Dr. Millett, have been seizure-free for a full year, as of September 2016. It is, even now, a challenge to stay positive in the face of this enormous obstacle. I frequently remind myself that I am able to accomplish so much more than the stigma that comes with an Epileptic life.

One truly uplifting common theme I have seen is art; it doesn’t matter the medium. The ability to create reminds us of our strengths, our confidences…our weaknesses, and how we’ve overcome them. While at my most ill, I tuned into an entirely new passion for art, health, and life balance.

Christopher J. Williams – Artist

Creative Arts, Therapist M.P.S., Illustrator B.F.A., Artist, Music Pedagogue
Painted GuitarTo create Art is something extraordinary. to experience the Power of intrinsic motivation and the subsequent impact it can have on a life… I Have always, even in my youth, embraced what art can cultivate as both a form of expression and communication. It is particularly appropriate to note that there is no such thing as a solitary endeavor on the journey of becoming. My grandfather, a war hero, as well as a profound sculpturist built this foundation for me. He taught me the fundamentals of drawing, painting, and engraving. He also gave me a solid understanding of how the gifts and talents of an artist can tap into one’s individual strengths, allowing the artist to explore, express, and document an array of thoughts, feelings, and emotions that may be difficult to put into words. I was fortunate enough to work by his side and I am very grateful for the ingenuity and spirit that was passed from his hands to mine.

In 1987, I was diagnosed with refractory epilepsy as the result of a nonmalignant brain tumor. Over time, the seizures dramatically increased in frequency and intensity. The hospital became a second home, and school became more of a torture chamber than a foundation for educational pursuit. I soon realized that my love for the arts, became a cure for my suffering. As I became more disciplined in my studies of art, I enhanced my ability to map out a composition on paper and canvas. It is there that I developed a diverse avenue of signature artistic styles, such as photo-realism, fantasy art, stippling illustrations, and others. Throughout this journey, I never underestimated that the only thing getting me through my exhausting battle with epilepsy was my ability to project my emotions into my art. As I continued with critical examination of my craft, I learned that art had been used for centuries as a therapeutic tool, and realized it had become my therapeutic intervention.

Bio:

Born in Brooklyn, N.Y. and currently living in Stockholm, Sweden, Christopher Williams acquired a Master’s degree in Creative Arts Therapy from the Pratt Institute and a Bachelor’s Degree in Illustration from the Fashion Institute of Technology. He currently works as an Artist and Activities-based Therapist using expressive modalities such as art, music, drama and movement within special education, rehabilitation and psychiatric settings. He is constantly striving to develop inventive therapeutic techniques, utilizing creative modalities and sensory stimulation as tools for behavioral intervention and quality of life enhancements to enhance communication through art and music making. Christopher has exhibited Internationally in collaboration with several charity organizations to assist in building self-esteem and self-image. He has also single- handedly developed and implemented Arts in education programs to assist International educational development.

Recent exhibitions include:

Royal Academy of the Arts London: InPractice 2016

Various vendord in the Stockholm region: 2009-2016

www.fegs.org (Artist and Art Therapy exhibitions)

Epilepsy foundation of California in conjunction with (Hidden Truths, The Mind Unraveled 2016)

Epilepsy Foundation of New York, Staten Island, NY: 2001-20007

In collaboration with Chrissy & Friends non-profit organization (www.chrissyandfriends.org).

Snug harbor Museum Staten Island, N.Y.1999

Commissions and exhibition are welcome, please follow: www.instagram.com/christopher.j.williams

Morgan’s Story

Morgan Evens 4My name is Morgan Evans, and at the age of 14 I had my first seizure. They sent me to a neurologist in Greenville, and that’s how I found out I have epilepsy. I started having random seizures after that. They put me on a lot of medications and did many tests. They were trying to see what was causing them.

Throughout the years, the seizures changed. I could tell when a seizure was coming. It was a weird feeling in my head just telling me or letting me know what was about to happen. That lasted for about 6 months. Then I would have a seizure and not realize it until I woke up. I also had very dangerous drop seizures that would come out of nowhere.

In high school I played volleyball and softball. I would randomly just fall and have one and I ended up realizing that after seizing, I couldn’t speak for at least 5 minutes. The coach kept on asking me if I was ok but I couldn’t reply so they thought I was going to have another one.

After Greenville I ended up in UNC Hospital, I stayed in the hospital doing EEGs and MRIs. They sent me to Boston to get a new MRI called MEG in January. They actually took me off my medication so the doctor could see my seizures so he could examine it.

I ending up being in the hospital for at least a week many times. They were still examining me so they could do a procedure or anything to help me get my life back in order.

Morgan Evens 1In August of 2015, I was in the hospital for 2 weeks. I had 4 brains surgeries and it broke my heart because they told me that they had to shave my head. One surgery I had was called a craniotomy, in which they basically opened my skull and removed a bone to do it, just so they take a look and see if they could fix the place the seizure was coming from.

Sadly, they could not fix it. They made me take one test to see if they could hopefully find the spot in my brain to cut off, which is called mapping. They put probes on my brain and basically controlled my brain. They ended up finding a spot but then told me they couldn’t operate because an operation in that area could easily damage my brain.

Morgan Evens 2At the end of all these surgeries, they ended putting a NueroPace inside my brain and placed it in the spot where my seizures were coming from. If anything happens, the NueroPace is supposed to shock it without me feeling anything. I have to use a remote looking device called a wand. It’s connected to a computer and I have to use it every night. I put the wand up to the NueroPace so it can gather all the information in my brain that happened that day and then connect it to the internet so I can synchronize it to their computer. I also have a magnet that a carry around in my purse so if I have a small “break-through” seizure, I to have just take the magnet and brush it across my head and when I wand my head at night, they can tell what happened.

Morgan Evens 3Since I have had the NueroPace, I don’t have drops seizures anymore. Instead, I have what are called break-through seizures, which are caused by my medication. They can’t take me off my medication so hopefully this NueroPace will cure the issue. Currently, I still have the break-through seizures, but they are nowhere near the same as they used to be. Hopefully one day it will all go away and I won’t have to worry about anything!

Practice, Practice, Practice!

Dating Blog Collage 2.2Have you mastered dating? I totally haven’t! I have a couple of dreams in my life. The first is to be the girl in the black dress in the Michael Jackson video, “ The Way you Make Me Feel.” The second is to be an amazing, strong, and confident dater. I was recently talking to my new friend Vincent, who is on a dating app. Vincent, like myself, is a bit of a late bloomer. As I was talking to him, a stroke of genius hit me: we could go on a practice date together and then tell each other what to work on. I must admit, I kind of got this idea from Steve Harvey. These girls would go on these horrible first dates, watch themselves, and then fix it for the next guy. Instead of having Steve Harvey and a camera crew, I had Vincent as my source of utter honesty. We promised each other we would be completely honest, yet still remain friends. The result: I feel like everyone should do this with a trusted friend, because it’s a lot of fun!

Vincent picked me up and we went to The Anaheim Packing District. FYI, this is a great date place, because there are a ton of food options in a really cool environment. I came prepared with first date questions to break the ice, and to get to know him better. Vincent is unlike anyone I have ever met, but in a good way. I am pretty convinced he is the last von Trapp child after Gretel, and I think he hears the theme tune to The Andy Griffith Show when he walks. He is a great person and he will make a great husband someday.

We started with grilled cheese and questions about pet peeves. Vincent’s were totally normal. He simply didn’t like doing things out of obligation. This question happened to be where my freak flag flies. I think I should stay away from this question. My pet peeves are mostly grounded in children’s apparel, which I know sounds completely insane. I hate any kind of light-up children’s shoes. It is as if a little four year old were running around taunting me, and they could give me a seizure. The McDonalds play-place is like my version of hell! The other children’s clothing I dislike are the onesies that say, “I love My Mommy or Daddy.” Well, guess what! They’re only weeks old, and that’s not old enough to know whether they love their parents or not! It’s putting words in their mouth. Or on their shirt. Same thing. Why doesn’t Carters make onesies that say, “ My Attachment Parent Gave Me Anxiety,” “ My Mommy Thinks Measles are a Buzzword,” or “ I can tell she going to make me go to a lot of therapy.” Yes, I know these are all things I should not admit to on a first date. It may very well scare my date away. Fortunately, Vincent was a really good sport, totally went with it and just laughed with me.

Later on that evening, Vincent and me were conversing about things we have and haven’t done. As it turns out, we are pretty innocent, quirky people! The game kind of goes like this…have you ever smoked a cigarette? No! Can you quote all the words to Casablanca? Yes! Vincent also asked me if I read the Bible, to which I answered yes. I asked him if he does anything artistic, and it turns out he sometimes makes wire sculptures! Hi answer was “why, yes I have been perfecting them since High School!” Last but not least, through this get to know you game I found out Vincent has not danced even ONE day in his life! He was telling me this and I was just picturing a young Ren McCormick dancing his little heart out in a white tank, because dancing was banned in the city of Beaumont. I can’t imagine ever hearing the song “Where have all the good men gone” and not wanted to get up like a tight jeaned Ren McCormick and dance. I must admit, I did feel a little bad for making him feel weird for not liking something I liked so much. It’s just that I was so flabbergasted! Nonetheless, I realized I do need to be more understanding of people’s differences. After all, I am a dyslexic epileptic with a spinal cord condition, so  I don’t know why I wouldn’t be understanding. In that regard, I do feel like I learned a valuable lesson from the practice date.

I feel as though those of us that have such a disease are inclined to feel quite vulnerable, and so sometimes it is easy to get stuck on a certain point and not want to budge because it might require making yourself vulnerable on another level. Despite this, it may very well be worth it to take the risk. I was lucky because I had a really nice guy agree to something kind of weird like a practice date. I certainly hope you have a friend you can do a practice date with. If you do, please write in and tell me about it!