We're happy to publish this special blog post, written by a guest contributor. Tim has been living with epilepsy for over 10 years, and he's been involved with our Society for just as long. He's attended events, organized fundraisers, and now given the most important contribution - sharing his experiences with epilepsy.
I was first diagnosed with Epilepsy in the spring of 1993 - at 23 years of age. I had a Grand Mal seizure in the middle of the night, while I was sleeping – so I was completely unaware of it. When I woke up in the morning, I did not know that it had happened.I remember feeling a bit tired… but I was just going to hop in the shower and get ready for work. My partner at the time asked me “where are you going?” I said, “to get ready for work!” He said “oh no you’re not… you’ve got to go to the doctor today – right away”. He explained to me what happened… and that he had called 911 in the middle of the night. I was shocked.
How could such a ‘thing’ happen to me? I’m young? I work out. These things don’t happen to healthy, young people. And – to be honest, the word Epilepsy just wasn’t ‘cool’. In my mind – there was such a stigma attached to that word – and it would not be attached to me.
Over the next few weeks and months, I learned a bit more about Epilepsy. I went to support groups and to lectures on the subject (all via the BC Epilepsy Society). I learned that it is not a disease – but rather a disorder – a seizure disorder. My Neurologist was able to get the seizures completely under control… and for the next five to seven years, I just popped my medications down - and it was not an issue for me. Most of my friends and co-workers didn’t even know I had Epilepsy.
My life-affecting experiences with Epilepsy started in approximately 1999. I started to have the complex-partial seizures. These are not the physical kind that most people think of when they think of seizures. These ones were more ‘in my head’. Initially, I was only having these seizures while I was asleep (and they would wake me up). They were like vivid dreams that wouldn’t stop when I woke up – and I sort of learned to tell myself that it was “one of them seizures again” – and I would try not to panic. I coped with those ones to some extent.
It has only been in the last couple years that I started to experience newer ones during the day. I believe I started to have simple-partial seizures during the day. My first one was shocking. They would affect what I see and hear, and making me unable to speak – for the duration of the seizure – and a bit afterwards.
Even then, I didn’t worry about them too much because I never lost consciousness, I always knew where I was, what I was doing, who I was with etc – and that it was just a seizure that would subside in a few seconds or at the most - a minute. If I was having one with my partner, I would simply hold up my hand, signalling that I was in my “zone” – as we’d call it.
But, just at the start of this year…itstarted to affect me at work. They were happening more often and soon people at work were starting to notice “something strange about Tim” – and I felt that. Plus, it was really affecting my quality of work and most definitely - the quantity. I had no choice – I had to take time off work and work with the specialists on a solution before it got worse.
Since then, I’ve been through lots and lots of tests… and I am now waiting for a possible date to have brain surgery. Although scary, I welcome it… because it could mean the start of the end of my issues with Epilepsy. But – as we all know, nothing in life is guaranteed. I just like to focus on the positive.
While off work, I’ve had lots of time to think about me and Epilepsy. Surgery is not guaranteed – nor is the outcome. I know my memory has been affected. Let’s be honest - it sort of ‘sucks’. Sometimes I have to miss a social outing with friends. I accept that. Every one of us has to learn to cope/live with life challenges. This is my take on me and Epilepsy.
Overall, I have a good life – with a great family, great circle of friends, and a great home-life with my partner (and my dog Jackson). I know I don’t have a life threatening disease, for which I am grateful… but I have a disorder that I may have for the rest of my life. So… what can I do to live the best life possible?
I read a great saying in a magazine a few months ago - and I just loved it. It said, “It’s not enough to be alive… but instead, it’s time to thrive!” For me, a day without having a seizure is a day to “feel good”. Sure… I’m going to have my days with a few seizures. But - on my good days, I’m going to do whatever I can do - to “thrive”.
I tell myself that my story is not unique. There are others with Epilepsy – some more severe than mine - and there are others with other health or life challenges. I’m a firm believer that you can’t have a happy, healthy spirit without a happy, healthy body. You can’t have a happy, healthy body – without a happy, healthy spirit.
So I say… get out there on your good days! Do things that empower your mind, body and spirit. Eat right as much as you can, exercise to get those endorphins going, surround yourself with people you love (friends & family) and people who inspire you, go for a hike, a walk at the mall, go to a fundraiser, organize a fundraiser, or start a home business. Give yourself goals – and then go for them. Do things that empower you physically, emotionally and spiritually. We all should make our good days so good that they over-power our down days… because you know what? - With Epilepsy or not - we’re all going to have them! We must do whatever we can on our part to further enhance the treatments/medications we are taking – to make our lives just that much better.
That’s my story. Thanks for reading. What are your next seven days going to look like?
With Philadelphia one game away from a spot in the World Series for the first time in 15 years, the team is likely looking back at their greatest players, and hoping to live up to their legacy. One of those great players was Grover Cleveland Alexander, who pitched for the Phillies from 1911 - 1917. Alexander is the winningest pitcher ever in the National League, and the third winningest pitcher in Major League Baseball history, with 373 wins. If these accomplishments weren't enough, Alexander earned all these wins while living with epilepsy.
In his first season of what would be a very successful career, Alexander was beaned by a ball on a run to first base, and suffered an injury that likely contributed to his seizures later in life. While we may still have challenges today, epilepsy was a whole lot harder to deal with a hundred years ago, and Alexander was up against a lot, in terms of medical care and public education. Despite the hardship, Alexander achieved greatness in life, and in sport. I have to admit - I'm not usually this interested in baseball, but I like to think that a few Philadelphia players are channelling Grover Cleveland Alexander this week!
Scholarship Winners Speak About Epilepsy Awareness
The BC Epilepsy Society awarded nine scholarships worth $1000 each to individuals living with epilepsy. Each applicant submitted an essay about their experiences and ideas about how to raise awareness about epilepsy. Below are some of their thoughts.
"Though it may not always be easy, I believe spreading this knowledge to my friends and community is of utmost importance. Ever since I came down with the condition I noticed a need for the public to be more aware of what epilepsy is and of what effects upon both ones psychical and emotional being are; through such awareness, the sort of myths and misinformation that may actually hold someone with the condition back may be dispelled. I have never shied away from my seizure disorder, opening discussing it with my friends and family, and this is undoubtedly the most effective approach to increasing awareness of epilepsy; indeed, first hand information is always the most compelling and is most likely to make an impact."
"Where my parents came from in Uganda epileptic seizures are incorrectly believed to be a demonic possession and even in places where they are aware of what epilepsy is it is sometimes dealt with incorrectly." "These perceptions are the types of misconceptions I wish to change through my work in international development. Though the task of making such changes in BC and in the world is great, I think that it is one which must be done, and the weight of making it happen falls on the youth of today, in partnership with the already existing resources such as BC Epilepsy. Alone I make a small difference in my community, but with the support of organizations, other youth, volunteers, and my education in international development I believe I can make a difference in my global community as well."
"Being diagnosed with epilepsy was a difficult experience for me to go through, given that I had absolutely no prior knowledge of my condition. For approximately one year prior to being diagnosed, I had been having these strange little jerks, like jolts of electricity passing through my body. I also had periods of time where I seemed to zone out and lose my concentration, without having any recollection of it later. Sometimes people thought I wasn't paying attention. My friends always thought it was odd that I would jerk around and some were even scared and did not know what to do." "I believe that raising awareness about epilepsy in my community is very important, especially educating young, elementary school aged children. If I would have learned about epilepsy when I was in elementary school, it would have been an easier thing to cope with when I was diagnosed with it. It is important for children to understand what epilepsy is and how to react if one of their peers is having a seizure, and also if they ever receive a diagnosis of epilepsy themselves it would be less traumatic having knowledge of the condition beforehand."
"To me epilepsy is not a crutch; it is more like a catapult. It has given me the courage to do things I never would have done in the past and to work harder than I ever have before."
The BC Epilepsy Society offers an extensive range of materials in our Resource Library. This includes books, DVD's and videos, comics, CD-R's, games and other materials on a range of issues for different ages. Everything from personal stories from people with epilepsy, general epilepsy information guides for parents and individuals, storybooks for children, employment and transition planning workbooks, and books on complementary and alternative therapies. Materials are available to loan for up to a three week period to current members. Upon request we can also provide free shipping for individuals or organizations outside of the Lower Mainland.
Some new Resource Library additions include:
Epilepsy: A Guide To Balancing Your Life
Author: Ilo E. Leppik, MD
People diagnosed with epilepsy face many difficulties and lifestyle changes, but a proper understanding of the disorder is a vital first step toward maintaining a normal life. Written in simple terms, this invaluable resource answers commonly asked questions about epilepsy and explains how it is diagnosed and treated, both with medications and other treatment options. Filled with helpful tables and illustrations, the guide offers current, reliable information on diet, surgical treatments, pregnancy, sports, and much more.
Edith Herself
Author: Ellen Howard
In this children's novel about a little girl growing up in small town America in the late 1800s, we see a picture of epilepsy as it was treated then. Edith's mother has just died, and her older sister Alena has taken her home to live, along with her husband John, little boy Vernon, and new baby Letitia. When Edith develops 'fits', Alena is terribly concerned and wants to protect her. But John, who is the local school teacher, insists she must go to school. A seizure during her very first week brings on the teasing she has dreaded, but Edith shows her courage and stands up for herself with some help from Vernon and new friend Rosa. This is a short novel, full of wonderfully believable, truthful family relationships, both warm and difficult. "Beautifully written, this is a tale to take its place beside those of Laura Ingalls Wilder".-- School Library Journal, starred review.
We've also added three new resources from the Planned Lifetime Advocacy Network (PLAN). PLAN is a not-for-profit charity created by and for families committed to future planning and securing a good life for a relative with a disability.
A Good Life for You and Your Relative With a Disability
An inspirational guide to rethinking disability and the value of people with disabilities in a caring society. It provides families, caregivers, and those worried about the well being of people with disabilities with insights, stories of inspiration and practical advice. It offers a step by step guide to creating a plan for the future which provides for the safety, security and well being of people with disabilities.
Peace of Mind
An practical and interactive CD-R to help you plan for the future of your relative with a disability. It combines personal stories, testimonials, tips, and worksheets to get you started on your path to peace of mind.
Safe and Secure
A book that offers clear, practical guidance for planning for the future. It provides information relevant to families within the framework of policy, regulations and practice in British Columbia. Safe and Secure includes specific information on BC Benefits and other government benefit entitlements, alternatives to adult guardianship, financial planning, Will and estate planning, discretionary trusts, home ownership and establishing a network of friends.
For more information on these resources, or if you're looking for information about a specific topic or for a particular audience, please contact our office at 604-875-6704 or info@bcepilepsy.com
We'd love to hear your suggestions about other resources and topics to add to our Resource Library!
It's that time of year. No matter where you are in the province, whether you're looking at cherry blossoms or melting snow, birds coming back or crocuses blooming, it is undeniably Spring. Thank goodness, right? That means that it's also time for us to start thinking about summer camps, and all the opportunities that are available for kids with epilepsy. These days, there are quite a lot, and they are definitely worth looking into.
Last summer, after I spoke to the kids who had just come back from Zajac Ranch, it was obvious that they'd all had a great time, and that the experiences and acceptance they had enjoyed in that short week would stick with them for months. With those testimonials in mind, it was no surprise for me to read this article from the Associated Press on the rise in camps for kids with chronic conditions, and the great results being seen by facilitators and parents. As the article states, kids benefit from participating in sports and activities that are tailored to their safety needs, and they also get to normalize their condition a bit by meeting other kids who also have seizures, and can relate in a way that no one else can. I especially loved the quote by one little camper saying
'"You get to learn about each other, how you're not different from
everyone," he says. Plus, "It was kind of special because not just
anybody can go there."'
It's not that we want to encourage elitism, but it's nice to hear that kind of pride for a change. I'm interested to see that studies are actually being done on the psychological and behavioural improvements enjoyed by kids who attend camps, since it can take more than anecdotal evidence to gain the funding and resources needed to make these experiences available to more and more kids. In the meantime, the BC Epilepsy Society is happy to offer kids the chance to attend camps around the province, and experience those good times for themselves.
First off, there are the Easter Seals Camps. This will be the first year that we have had an official relationship with this group, and we are thrilled to be involved. Last summer, Elvira, Shawn and I visited their Squamish camp, and with all the ropes courses, organized games, and involved staff, we didn't want to leave. The Easter Seals have camps in Squamish, Winfield, and Shawnigan Lake, so they are accessible from many parts of the province. They schedule week by week all summer based on various guidelines of age and ability, so if you would like guidance regarding the appropriate pick for your child, give us a call, and we will put you in touch. Camp attendance is free on a first come, first serve basis. The applications have been available since the beginning of April, so if you would like to apply, please visit their website, and download a registration form. The BC Epilepsy Society will be offering travel subsidies for camp attendance, so please contact us for more information.
The Zajac Ranch is another great spot for kids with epilepsy. Each summer, they schedule one specific week for kids with seizures, and this year, that will be from July 14th to the 20th. Their camp is in Mission, and it's also full to the brim of great activities and events that would rival any summer camp in the country. In collaboration with the Zajac Ranch, the BC Epilepsy Society is happy to offer subsidies to offset the cost of registration. If you are interested in the camp, please visit their website for more information, and a registration form. To be eligible for our subsidy, please send completed applications to our office, at #510-999 West Broadway, Vancouver, V5Z 1K5. They will be due in no later than 6 weeks before the camp date.
As if these camps weren't enough, through our great relationship with the Epilepsy Foundation Northwest in Washington and Oregon, we have been working out the possibilities of sending some kids down to their great Camp Discovery just outside of Tacoma. Stay tuned for those details! In the meantime, enjoy this warmer weather, think about camps for kids, and get outside, no matter how old you are!
The BC Epilepsy Society and 11 lucky kids owe a big thank you to Marcus Naslund and all the staff at Orca Bay for a fantastic experience at the Canucks game on Monday night. He generously donated his private box to us for the evening, so we watched the Canucks beat the Coyotes from the best seats in the house - Nazzy's Suite! It was a great game, so I'm pretty sure we were good luck. We certainly cheered loud enough!
In between hockey, hotdogs, and pizza, the kids also had a chance to get to know each other a bit, chatting about their personal experiences with epilepsy, and their favourite Canucks (I'll always be loyal to Linden). Some of you may have seen my shining moment of stardom - in the first intermission, Tasha Chiu stopped by to profile us for a TV time out. The interview was only about 60 seconds, but the exposure for our Society was great, and I think I was able to squeeze in the important points. Thankfully, I wasn't thinking about how many people might be watching!
This was our second year in Nazzy's Suite, and with his generosity, I hope we'll be able to continue to make it a yearly event. If you didn't get to join us this year, sign up for our eNewsletter so that you won't miss the call for entries next season! In the meantime, Go Canucks, Go!
As Valentine’s Day approaches, remember that this special day
is not just for lovers, it’s for people with epilepsy too.While most people associate St. Valentine with
being the saint of lovers, he actually was also the patron saint of people with
epilepsy.
How St. Valentine became the patron saint of choice is
uncertain.Epilepsy was once known as
the “falling sickness” because some seizures cause a person to lose
consciousness and fall down.One
theorist points out that Valentine sounds much like the German word for
“fallen”.Still other legends propose
that a 3rd century bishop named Valentine von Terni freed the son of
a Roman orator from an epileptic seizure.
Because many people in ancient times believed their medical symptoms
were due to spiritual forces, it made sense for them to combat these perceived
forces with saints.Patron saints in
particular were believed to have restorative abilities for specific conditions.
Today, medical research and an increasing variety of
scientifically proven therapies have helped bring relief to the lives of over
30,000 people living with epilepsy in British Columbia.Valentine’s Day can be looked as a reminder
of this progress, and also highlight the critical need for more awareness,
support, and understanding to improve the day to day lives of individuals and
families affected by seizures.
