An Exchange Of (Cyber) Friendship

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One of the greatest pleasures of blogging that I had not considered when I began was how friendly a network it is.  Through my regular postings I’ve ‘met’ so many different people from all walks of life.  Many of us become connected through similar interests.  Some are working towards a specific cause and document it through their own personal experience, for others it’s sharing a skill, to educate or simply an insight into their own lives.  Regularly, I find myself completely lost in blogs and the outside world ceases to exist because of that immersion.

Out there you will find blogs about anything and everything, the common denominator running through each is the content that is derived from an ignition of passion within its author.

Blog exchange is something that I have come to love.  These past few weeks posting other people’s stories have been particularly gratifying.  We each have our unique writing style but to be able to share the personal opinions, encounters and thoughts that someone has taken the time to sit down and write is a pretty special thing!

So in light of that, having posted Megan’s story from a few weeks ago we have just done the ‘blog exchange’ and you can find my story on her page at:

http://www.inmegansshoes.com

Living with Epilepsy – David Symes

With a plethora of causes for the development of epilepsy many of which are unknown, heredity is yet another to throw into the melting pot.  Ironically, a number of my own family members suffer with it but my condition isn’t related to heredity.  I come under the ‘one in seven’ category whose epilepsy is of unknown origin.

Both my uncle and his two children suffered, although I believe one of my cousins grew out of it.  However, my uncle and remaining cousin have their seizures controlled through medication and currently lead lives that are not marred by the consequences of seizures.

With this in mind, when asked, my uncle was good enough to write his experience with epilepsy throughout his life so he will be the feature this week.

 digableplanet

So then, to borrow the words of the song in the old Michael Caine film, What’s it all about, Alfie?  Or rather, what’s it about, being an epilepsy sufferer?

It was half a lifetime ago (I’m 70 now so I’ll leave the math to you) that I had my first fit or, as the medics prefer to call it, a grand mal seizure. But you’ll know that there’s nothing grand about blacking out with no prior warning whatsoever and coming to an hour or so later, most times in a hospital ward, with a splitting headache, a half-chewed tongue that’s swollen to twice its size and a string of questions such as “What happened?” and “Where am I?”. Grand mal is French for great sickness – you can see where the term mal de mer, meaning sea sickness, has its origins – and it’s the granddaddy of all kinds of seizures.

It’s very nasty, not to mention frightening, to watch someone in the throes of a convulsion. My seizures occurred, thankfully, no more than a couple of times a year when I was having them. You hear of people having half-a-dozen seizures a day and you begin to realize how fortunate you’ve been. Hang on to that word, fortunate, because it becomes part of your way of thinking in the end.

Nowadays, I jokingly class myself as an occasional epileptic. It’s been more than 10 years since my last episode, and it was 12 years before then that I’d had what is quaintly called ‘a turn’, a term which conjures up pictures of elderly ladies taking a whiff from a bottle of smelling salts.

I feel that my epilepsy is well under control these days although it took a considerable time to get the balance of my medication right. Friends still express disbelief when I tell them how many tablets I ingest each day and the amount of medication they represent.

I should be able to reel off my medication, just as old soldiers can instantly recall their service numbers, but I’ve become so familiar with the twice daily dose – two orange ones, one pink one and two brown ones – that I need to look at the labels on the bottles to accurately tell you my prescription. In all, I’m on 500mg of phenytoin sodium (or epanutin) and 800mg of tegretol – ten tablets in all each day – to keep me on the straight and narrow.

The large percentage of my seizures happened in my 30s and 40s. They weren’t choosy where and when they struck – on a crowded bus, in the office at work, outdoors during a game of softball or some game involving hitting a ball with a stick, in a neighbour’s house while decorating the stairway, in a London hotel, in a car (twice), and even in a crowded pub where I was laid on the floor while thirsty customers walked around me to get to the bar. The latter isn’t to be recommended as I later discovered I’d been lying in a puddle of beer slopped on the floor by a careless customer.

I learned to live with the condition. My initial bitterness at learning that I was epileptic was gradually over taken by resignation and then acceptance of the fact.

One of the questions I found myself asking in the early days was “Why me?”. It’s a question without an answer that worries a lot of epileptics.

A friend of mine, now in his 40s, has just been diagnosed and his world has come apart at the seams. I know from my own experience that it takes time to adjust, but once you can acknowledge that you have epilepsy, you realize that you have to pick yourself up, dust yourself off and start all over again (my apologies to whichever lyricist penned those words).

You haven’t come back from Afghanistan or Iraq maimed for the remainder of your life; you’re not suffering from terminal cancer; you’re not a victim of some sexually transmitted disease; you’re not addicted to drugs or alcohol; you don’t need a heart or liver transplant; you’re not mentally impaired.

Most epileptics respond to a course of treatment. Your life may have taken an unexpected turn, but you can still lead a normal life. You can cope.

I did.

Living With Epilepsy – Megan Davis

With an idea that struck me like lightening having manifested itself in my head over the weekend, I decided to change up my plan of writing about that subject.  Instead, I will focus solely on those who have willingly agreed to divulge their personal and inspirational stories further to Ann Eshaw’s last week.  The tales belonging to these individuals who continually conquer epilepsy, who convey their achievements, lifestyle, attitudes and capabilities, display an immeasurable strength.  As an epilepsy sufferer, I find there are always elements of these stories that I can take away to improve the outlook of my condition.  Each and every one of these men and women welcome every day with a gumption not all of us possess. And so, on that note, I think my original idea of incorporating the completion of my first major project of apron making, however proud I may be, can wait for another time – now I have you all waiting with bated breath!

So this week it’s Megan’s story…

Megan Pic

People can develop Epilepsy at any age, but I, myself, was diagnosed with Epilepsy in my first year of college. I remember waking up one morning in my cramped little dorm room at UCLA and I had a throbbing headache, I was exhausted, my limbs felt like lead, and I couldn’t speak well as though I had something wedged in my mouth. Feeling dizzy, I made my way over to the mirror and opened my mouth- my tongue was grossly swollen, black and blue, and there were pieces hanging from it… I panicked and started to cry. What was wrong with me? I’d always been in perfect health – my Mom’s an amazing cook so I ate healthily, and I was extremely athletic. Crazy, but I knew – I’d had my first seizure. I was terrified.

I won’t bore you with the daily details from 1999 ‘til now, yet I will say a few things. Over the next year, I continued to have seizures while trying numerous drug combinations. Tegretol gave me a rash, Depakote made me lose huge clumps of hair, Dilantin gave me Steven Johnson’s syndrome (from which I lost tons of weight b/c I couldn’t chew or my gums would bleed), Neurontin, etc. I had tests. I wasn’t allowed to drive anymore. The drugs and the seizures made me feel as though I had no control over my own functioning… I was self-conscious and scared. I’ve fallen, sliced my nose and gotten a black eye (the dresser obviously won that battle). I’ve gashed my arm on a shower door as I fell into a seizure while washing, choking on water, and had to crawl on all fours out of the tub. I’ve watched myself have one in front of a mirror, etc. And I’m a fortunate one.

To wrap up my story, I’ll say this, I gave birth to a beautiful baby boy in April 2013 and pregnancy was one of the most incredible times in my life. Yet, it was also one of the scariest. After not having a seizure in several years, I began having them again due to the fluctuation of hormone in my body. And again I was back to that uncertainty of my first year- Why is this happening now? How come my pills aren’t working? Am I going to hurt my baby? And my greatest fear- if there’s something wrong with him, it’s my fault…

I decided then that I needed to talk about it.

I started first with a Facebook page dedicated to epilepsy awareness through my experiences, and raising money for my participation in The Walk to End Epilepsy put on by The Epilepsy Foundation of Greater Los Angeles. I raised $5,000.00 in the first 2 weeks alone… It was my first time really asking people for money, which I find uncomfortable, but my history with Epilepsy trumped my hesitation. It was an incredible experience. So, I kept my FB page and eventually established a blog just so I could document my writings all in one place for my own safe-keeping. With encouragement from others, I’ve recently started to share the blog and post more of my experiences. Although my Facebook page and blog site are both humble in the number of “followers,” I have had numerous interactions with so many others just like myself who have always been hesitant to share their own story. Those exchanges are invaluable and I find my epilepsy has added a whole new sense of purpose for me… we’ll see where it leads.

Thank you for allowing me to share my story and feel free to visit my pages and/or contact me!

Megan Davis

FB: www.facebook.com/meganswalk

Blog: www.inmegansshoes.com

Twitter: @meganswalk_

And you can find me on Linked In under Megan Davis.

Living With Epilepsy – Ann Eshaw

This blog post comes much later than anticipated.  I have experienced what every writer, in fact every computer owner dreads – a virus.  Living with a computer doctor it took five days of countless operations.  Yesterday saw a slow but positive recovery but only after intense surgery where the poor thing became practically skeletal.

Now back to good health, reflecting on the lead up to Purple Day it seemed to really hit a chord with a variety of you folks out there.  The connection between the reader and the pictures and quotes was strong.  With such positive feedback I considered the direction that I want to take this little blog. First of all I felt it time for an upgrade on its appearance so I hope you like its new sparkly layout.

Something I was inspired by was the idea of relaying other people’s experiences with the condition; after all, each journey is individual.

I contacted a number of people whose stories I had learned of and will post one each week.  Living with it myself, although helpful in many aspects it is not mine alone that the readers can always relate to. The first piece I have chosen in this series is by Ann Eshaw.

Ann Eshaw Pic

Hi, my name is Ann, I’m 24 and I got diagnosed with epilepsy when I was 11. From that moment there were a few changes and I started a new journey. Let’s go.

One day at school I felt something strange and ran to the bathroom. By the time I was in the bathroom the strange feeling was over. I got home and told my parents about it, but I couldn’t quite explain the feeling I was having. A few doctor appointments and tests later the doctors figured it out: I have epilepsy. They even found the cause of my epilepsy, which doesn’t happen often. So in a way, I was blessed. The epileptic seizures were being caused by a tiny brain tumor – benign though, which means that it doesn’t grow. However, it is causing the seizures. To be more specific: simple partial seizures. A few months and a few more tests later the doctors decided to do a brain surgery to remove the brain tumor. We agreed. Let’s pause here for a minute.

Even though my life had changed a bit because of the discovery of this tiny thing (really tiny: as small as a dot) in my body, I didn’t feel any different. As I look back, I now realize that the support of friends and family made the difference. My friends didn’t treat me any different after they heard the news. Even though we were all about 11 years old, apparently we were wise enough to know that behavior is important. Because nothing changed in our friendship and because of the equal treatment I was receiving from the people around me, I didn’t feel different. The change didn’t affect me much. And press play again.

On April 27th 2001 I went into that operating room. There was no fear, I just couldn’t wait for it all to be over. A little strange, I know. But like I said before, support from family and friends can mean more than you think. Merely being there for someone. The only worry I remember having was that one side of my head needed to be shaved. Girl problems; we can exaggerate, am I right guys?

So I went into that operating room and a few hours later it was all over. Unfortunately, the brain surgery failed. The tumor is too deep and the risks were too high to continue the surgery. So they stopped. The possibility of being cured was a little more difficult than anticipated and thus we turned to treatment. I started taking medication to control the seizures. However, they were never completely controlled. How did this affect my life? Let’s fast forward to middle school.

I’m 13 years old and my mentor tells me to stand in front of the class and tell everyone that I have epilepsy. He wasn’t being a bully, there was a reason for this. I used to have seizures during class and had to go out of class all of a sudden without asking the teacher for permission. The students were wondering what that was all about. Why do I have that privilege? So I gave them the answer. That was probably one of the hardest things I’ve ever had to do in my life. I was horrified to do it. Ridiculous, I know. I’m just not the kind of person that shares everything with everyone. (So realize that sharing this is indeed a huge step.) Anyway, I stood in front of the class, I shared my story and got over it a few days later. Let’s fast forward again.

I’m 19 and I’m in university. I had changed the medication I was taking and my body had to adjust. In case you have no idea what the side effects might be, here are a few: being tired all the time, sometimes concentration problems, getting angry all of a sudden. Mainly being tired all the time to be honest. However, don’t let it get you down! Nothing is impossible. You might have to work a little harder than the rest, you might have to fail a few times before eventually succeeding, but in the end the feeling of accomplishment is all worth it. Trust me. It’s worth it. I finished my Bachelor without any delays and I’m now close to getting my Master’s Degree in Health Sciences.

What I’ve learned in the past 13 years is that as long as you don’t let it affect you or define you, you’ll be fine. Change is inevitable in life. Don’t let it get you – that will only cause more seizures as negative emotions are a trigger. This would also mean that you will be the cause of your own misery. The fear of the unknown is not something that only exists within you. A student who took a test has the fear of the unknown – fear whether he has passed the test or not. A mother whose child will go to school for the first time experiences fear of the unknown – fear of whether her child will survive on his own. These are all just a few simple examples, but I’m trying to explain to you that everyone experiences the fear of the unknown every now and then. So embrace it as it’s part of humanity.

I’ve also learned that you need a few people around you that will give you the support you need and that will treat you the same always. Let me stress the word “always”. If you meet new people and are planning to keep them in your life, try to explain to them what epilepsy is and what they should do in case you have a seizure in front of them. Basically, tell them what they can expect.

Finally, I’ve learned that nothing is impossible; you just have to put your mind to it and make it happen. It might take some effort, but really, which great things in life don’t need some effort to feel as great as they truly are when they’re accomplished?

Smile, have goals and live your life as any other human being on this planet. Nothing big has changed. Life is a continuous change. The only constant in life is change itself. So embrace it.

Ann has her own website and you’ll find the link is below.  It is yet another glimpse into another method of advocating epilepsy.

http://simplythinking.wix.com/letstalk

and can be contacted at

lets.talk.now.community@gmail.com