I started writing about my personal journey with epilepsy because I felt that those of us who can, should start a cycle of sharing. The more we talk about a condition that has so often been whispered about - kept in the shadows - treated as a secret - the better off we all will be. When I speak of we - it's a collective we - any condition, be it severe allergies, asthma, epilepsy - changes not only the individual - but affects the family members and impacts the people who surround them.
The other day, someone reached out to me from halfway across the world from a part of the US that is close to my heart - the South --- and started asking me questions about my experience. I know I'm not a doctor. I do know the power of sharing an experience with someone who has undergone something similar. While we chatted for days, his story of hiding things to make people more comfortable, seemed so familiar - and yet I could feel how isolated he must have felt not having had anyone to speak about this with. So at some point, he asked me to tell his story. Let's call him Louie.
Louie was diagnosed as having ADD when he was in 13 years old in the 7th grade "...but they did no real test. They asked me questions and I took an academic style testt" Since then, Louie was put on ADD meds immediately, and then after high school a doctor told him his panic attacks would be resolved by Zoloft. " I did do good in school while taking it though, but I got sick of it before leaving high school and hid my partial seizures, thinking they were side effects of ADD."
"My parents are awesome ---- he said it was time to see a neurologist at age 22. From the age of 13 to that point at 22, I would get deja-vu and precede to vomit 4 or 5 times a week. I thought they were stress/panic attacks and being the idiot I was at the time, I didn't mention them to my parents because I thought I was just a big wimp who couldn't handle stress." It was only then 9 years later, that Louie was told he had been having
partial seizures caused by gray matter heterotopia.
A few things strike me about this: First, that Louie was put on pretty strong medication for ADD without any real benefit of thorough testing. Today, children who are diagnosed for any developmental issues go through a battery of tests - to see if their behavior changes in the context of the environment, Louie shrugs it off, and says, "Well that was 1995, a lot has changed then."
Second: Like many people with a condition, like epilepsy, or ADD, or anything for that matter: Louie doesn't want his parents or loved ones worrying about him, or spending so much time taking care of him. So much so that Louie, like myself, and probably like many others, will go to the extent of hiding things. I've not been completely upfront about some seizures, I admit. Louie, for 9 years, hid the fact he had been having episodes until his father witnessed it one day and brought him to the neurologist. "We were both shocked when we learned what it really was."
Third: I had never heard of grey matter heterotopia (GMH). And I'm sure very few of us have. In fact Louie spends quite a bit of time reaching out to other people in forums looking for other people like him - because he has never met anyone else with the same case. And that's the point really isn't it - no two people have the same case. We all have unique experiences. But I did some research - and again, I am not a doctor - so I asked my neurologist, and since it is so rare, she had to do a bit of research on it too. And of course Louie told me about it himself. So what is GMH? Grey matter heterotopia is a neurological disorder that is characterized by the grey matter in the brain being located in the wrong part of the brain. It is associated with epilepsy and can affect higher brain functions and motor skills. Seizures are generally resistant to medication.
"Apparently 98% of people with my brain disorder are severely mentally disabled...but I'm part of the 2%," says Louie, who at 32 is graduating this summer with degree in Computer Sciences.
I was shocked - I had never heard of a type of epilepsy that was resistant to medication. Then I recalled Louie's last episode. "Almost 3 weeks I went to the ER because I had a partial seizure that would not stop from10:00 pm til almost 6 in the morning with they shot me up with Dilantin and some pain medicine to stop the horrible headache that accompanied it....It was the longest seizure I have ever had in my life without losing awareness and I thought I was having a heart attack or stroke and could not think straight. My arms went tingling and numb along with the headache. I had a really long dream-like deja vu episode the whole time."
Since then Louie has seen his neurologist (take note: 3 weeks after a major episode), who has moved him off from Dilantin to Depakote. Louie had been struggling with headaches and the feeling of dullness that Dilantin gave him. I told him that I had experienced the same when on Dilantin - and that essentially most anti-epileptic medicine are downers to manage spikes in brain activity. He then asked me if it was ok that his doctor instructed him to wean off Dilantin while starting on Depakote. I could only speak of my experience where my doctor worked with me to get me down from 14 pills a day to 1.5 and we had to have a system to step down from various medicines to not induce any reactions.
Louie's mistrust of the medical system seemed to be so clear. But who could blame him? He had been misdiagnosed with ADD and anxiety disorders - and only 9 years later was he properly tested and diagnosed. He reaches out to other patients for assurance - and that too I think is important - to have others to speak with. To not feel like you are alone. We may not have the same diagnosis - but we have the same language. We talk about auras - and the power of having a journal so that he can articulate what he feels before and after a seizure - to see what are the contributory factors - a change in diet, stress levels, medication? This we can understand.
We also talk about how important it is to have been in an environment where our parents thought of possibilities - not limits. He's had dark days - where he got angry. I did too. You wonder : Why me? Why am I so different and why do I lose control? And you do things impulsively like get off your medication to try to control your condition and realize it's foolish. The one thing that's struck me is that Louie thinks those days are behind him - and it's time to focus on the future because he's part of the 2%. He's 32 and he's graduating. He has life ahead of him. He's appreciative his parents let him lead a life of a "normal" teenager. He continues to research on GMH and seeks to connect with others who have it too hoping he can also help them. In spite of the dire diagnoses of the doctors - Louie is hopeful.
"My parents are awesome people." It's such a simple and powerful statement. It's filled with admiration and respect for all the care, support and love he's received and continues to receive. That's what love and certainty can do, beyond any diagnosis. It can fill your heart with dreams and courage. It can fill your spirit with strength to withstand an 8 hour seizure while you think you're having a heart attack. It can fill your brain with dreams so large that a short circuit in a your short term memory is not a problem while you finish building a code frame before you graduate.
It makes you say, - look, there's a lot of people who don't make it, but me, I'm part of the 2%.