A Personal Story By Tracey Alderson...
This topic is so complex, where do I begin. I could start by telling you this only happens to other people, but that would be an outright lie. Statistics show there is an estimated 1 in 100 people, over 320,000 Canadians living with Epilepsy. And 1 in 10 of us will experience some type of seizure in our lifetime. Epilepsy is a seizure disorder; simply put it refers to a non-contagious medical condition whereby a person has seizures that, may or may not be able to be controlled by medication, & that may or may not have a known cause for the condition. The severity of ones condition can vary dramatically due to the fact there are over 40 types of seizures.
At 4 years of age I witnessed my very first seizure. Or at least it's the first one so vivid in my memory I can picture it as if it happened yesterday. My stepfather had Epilepsy. He battled with various types of seizures, including tonic clonic (grand mal) seizures, up until committing suicide when I was 12. I'll never know exactly how my stepdad felt, trying to function normally in a world that still to this day struggles to understand & accept this disorder. But because I too now have Epilepsy it has given me a lot more insight & understanding into what my stedad may have endured. It's been almost 14 years since my first seizure. I started having seizures when I was 29 years old and little did I know at that time just how devastating of a battle I was in for. Imagine waking up thinking it's going to be just another day. I went from getting ready for work one morning to running in a sudden panic into the bedroom where my husband, Steve, was sleeping. I remember hitting him to wake him and my last conscious thought being, "why am I hitting him so hard". EVEN THOUGH STEVE HAD HIS CPR & FIRST AID TRAINING HE STILL FELT OUT OF CONTROL THAT MORNING. STEVE HAD NEVER SEEN A SEIZURE BEFORE AND I HAD NO PRIOR HISTORY OF ANY ILLNESS.
I remember my first few seizures feeling pretty horrific. No one knew yet what was causing my body to act this way. Medication wasn't controlling the seizures. And it took several months before specialists pinpointed the origin of the seizures. Accounting it to a small leision, deep, in the right front side of the brain. I was now diagnosed with Epilepsy (a seizure disorder). And due to several circumstances surrounding my seizures, I would never likely gain total control of my seizures. But I continued to battle, experimenting with different medications, trying to find a compromise. Something that my body could tolerate with minimal side effects & still help me obtain some quality of life. I remember thinking, at the time, there must be some mistake. I knew what a seizure was, I saw my stepdad take lots of them. But somehow when it's you, it takes a while to fully absorb what's happening. I've had a lot of mixed emotions over the years. Accepting doesn't exactly happen overnight.
In the first few years I would drop at any time of day, taking a partial complex seizure followed by a tonic clonic (grand mal) seizure. I felt so inferior & scared most of the time. I struggled with depression, and there were very few people I trusted, but at the same time, I hated being alone.
I lost my job, my licence for awhile, some friends, but most of all I was losing myself. The struggles within continued. I wanted so desperately to be able to function normally again; and my body wasn't letting me. The added strain I was putting on my family when I wasn't feeling well was enormous. I had no control & I began to feel I was failing as a mom, a wife, & an overall human being. The anger & frustration I felt was heightened by the unpredictability; I never knew when a storm was coming. My seizures would strike at any time with little or no warning.
Since about 1999, my seizures have been nocturnal. It was this change that allowed me to gradually take back some of my independence & self confidence which I had lost. Thankfully, as the years are passing, my seizures seem to be easing a little in intensity; but I will never underestimate the power they hold. If I were to describe Epilepsy as a type of person I would say "it's a very powerful manipulator & a controller, it keeps you where it wants you to be".
As unpleasant as it is, more & more people (of all ages) develop seizure disorders every year. The best defence against seizures, is the knowledge of knowing how to deal with one should it happen. If you would like more information you can contact your local Epilepsy Organization by going to www.epilepsyontario.org or www.epilepsyfoundation.org
If you have any personal questions or comments, please feel free to send emails "in confidence" directly to me at epilepsyhppresident@hotmail.com I can also be found on Circle of Moms at my site "Epilepsy Awareness 2009".
Sandy - posted on 04/03/2009 ( 40 moms have responded )
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I am Sandy Lora and I wanted to say hi. I am so happy with the response I have gotten from all of you. We are here for each other and that is what it's all about. Helping one another. I love being able to help others with their situations. We all have sick kids or are close or related to a sick child. Working together makes us stronger and wiser!!! I look forward to chatting with any of you and seeing all of you chatting with each other. What goes around comes around. Help your fellow mom or dad and you shall be helped. Take care, Sandy Lora
As of April 22, 2011 ~ we have almost 22,000 people who have joined my site!! It feels great to help others, give them suggestions, and get suggestions too. Thank you to all of my wonderful moms, dads, etc. for being a part of my special circle!! ♥
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