Most Don't Make It, But That's Not My Story

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.
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I met a guy online.

He said something really powerful that has made me think about how powerful love and certainty are when medicine just can't seem to fix things: "Look, there's a lot of people who don't make it, but me, I'm part of the 2 percent."

Christian has Grey Matter Heterotopia (GMH), a rare neurological disorder that is characterized by the parts of the brain being located in the wrong area. It is associated with epilepsy and can affect higher brain functions and motor skills. Seizures are generally resistant to medication.

"Apparently 98 percent of people with my brain disorder are severely mentally disabled... but I'm part of the 2 percent," says Christian, who at 32 has just graduated with a degree in Computer Sciences.

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.

When Christian reached out to me the the other day, from halfway across the world, and started asking me questions about my experience because he had read a post I had written, I thought this is the power of sharing -- it opens gates for others to also share, to open up and let go. We chatted for day: 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.

Christian 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 test. He 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."

"From the age of 13 to that point at 22, I would get deja-vu and proceed 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." After nine years, Christian, was told he had been having partial seizures caused by GMH.

A few things strike me about this: First, that Christian 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. Christian 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: Christian doesn't want his parents or loved ones worrying about him, or spending so much time taking care of him. So much so, that Christian, and probably like many others, will go to the extent of hiding things. Personally, I've not been completely upfront about some seizures, I admit. For nine years, Christian hid the fact he had been having episodes until his father witnessed one and brought him straight to the neurologist. "My dad was the one who sent me to the doc at 22... I had hid it before that. 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 Christian 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 Christian told me about it himself.

I was shocked -- I had never heard of a type of epilepsy that was resistant to medication. Then I recalled Christian's last episode. "Almost 3 weeks ago I went to the ER because I had a partial seizure that would not stop from 10 p.m. until 6 in the morning. 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 and a really long dream-like deja vu episode the whole time."

Christian's mistrust of the medical system is so clear. But who can blame him? He has been misdiagnosed and reaches out to other patients for assurance. 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 aura, 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 Christian thinks those days are behind him -- and it's time to focus on the future because he's part of the 2 percent. He's 32 and he's graduated. 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 -- Christian 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 eight-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.