In an attempt to look strong, we all hide pieces of ourselves. It may be things that we think are flaws, like body parts that we keep well hidden, injuries, illnesses, things that we’ve done in our past that we aren’t proud of, etc. Exposing ourselves online means that it’s out there for the entire world to see, and frankly it’s a bit scary to peel back the layers and allow strangers into our lives.
MomCentral offered a campaign to bloggers recently about epilepsy. I opened and closed the e-mail at least a dozen times before responding. You see, I knew that it would be EASY for someone who’s never had to deal with seizure disorders to simply go in and write a post about living and succeeding with the disorder. It’s not quite as easy for me…..
I spent my late teens and early twenties trying to figure out what was wrong with me. I had an odd series of symptoms that just never seemed to make any sense. I experienced -memory lapses, I’d have nerve sensations that felt like I had been plugged into an electrical socket, I’d rock back & forth and pick at myself until I was left scarred, I’d smell a sort of rubber burning odor, and occasionally lose consciousness. My parents thought I was crazy and sent me to psychiatrists, but they never helped. It wasn’t until it got so bad that I went off to the Lahey Clinic in Boston for a full work-up.. During my first EEG I experienced a full blown Grand Mal seizure and the diagnosis came in…..I had Temporal Lobe Epilepsy. Of course, those words were never uttered…it was simply said in a whisper that I had a seizure disorder.
Dilantin – Phenobarbital – Klonopin – I still remember how I felt when I took each one of these. I struggled with trying to find the lesser enemy. If the seizures were controlled, the medication made it so that couldn’t function from lack of energy, if the seizures were not controlled, I was not able to do the things that I really loved (like DRIVE). It wasn’t easy. Thankfully I had a neurologist whom I adored and worked with me (it didn’t hurt that he had a cute South African accent and I had a MAJOR crush on him). We finally found a combination of medications and biofeedback that worked for me.
Later on (at the age of about 30), when I was pregnant with Ben, Dr. Sergay took me off of all medication for the sake of the baby. He told me that my seizures could possibly get worse or they might even lessen due to the changes from the pregnancy. I got lucky. My seizures lessened and now I’m seizure free (although I have times when I worry that they’ll return).
For those who are dealing with epilepsy, either with a family member, child, or themselves…there are so many more resources than there were 25 years ago. HealthyWomen.org has created an AMAZING series of videos about living with epilepsy, that I WISH had been around when I was trying to research the disorder. You’ll learn how Amy has learned to help her son, who was diagnosed at birth and how Veronica FINALLY found the solution to free her to live independently.
As I sit here choked up, with tears welling over the emotions of having just exposed a piece of me that I’ve kept locked away, I know that if it helps just one of my readers who are dealing with the same thing, it was worth it.