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 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.
While I struggled for many years, I never let it interfere with my work, goals or dreams. I went to school, work, had a wonderful career in theater, traveled on my own, and more.
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.
For those who have loved ones, or who have this disorder, you’ll find links to more information, including 10 Tips for Supporting Someone Living with Epilepsy. If you have a friend or family member who might benefit from the videos and information at HealthyWomen.org, please pass this important information to them.
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.
Carolyn G says
I had no idea. Thank you for sharing. I think your sharing will help others. (((hugs)))
So proud of you, Zippy!! You've shown amazing courage in writing this. I had no idea you'd gone through this. Makes me think more highly of you than ever. 🙂
Thank you my friends.
Krista, you have the most difficult story of all, and you're a true inspiration to others who've gone through what you have. This pales in comparison. I've dealt with a lot of physical and medical issues in my life. This one was actually minor compared to others, yet maybe because it was during my teenaged and young adult years that it was so difficult to revisit.
Thank you Zippy for writing about this time in your life. I understand…..My child has Tonic Clonic seizures and I live this life every day. Seizures have been controlled for 29 months on Keppra. So glad to know you are seizure free!
In the year of 2010 the year that some our "coming out" illness' are being discussed and so many people are understanding and interested in learning about WHAT makes another tick and if they are ill how to help them. No longer does anyone have to hide their illness. Illness is most definitely nothing to be ashamed of. Yes it is difficult; but there are enough people who care and are there to listen and help. Zippy you just proved this by sharing your article. thank you…..
I love you Zippy, and admire you so much for opening up and sharing this to help others. I'm sorry that you had to deal with it – but happy that it's gone now.
Rhonda – that has to be so difficult on a parent to watch (especially one that appears so violent).
Willow – Yes, it is like a coming out and you're right, we shouldn't have to hide, but it is difficult to show your weaker side, even if it's something that you have no control over.
Katja – YOU KNOW I LOVE YOU my friend. We ALL had our fair share of bumps in the road, haven't we?
Thanks for sharing this with us. In his later years, my dad had some kind of mysterious seizure ailment that no test could diagnose…he had all the brain testing…I can't even recall all the alphabet letters. One doctor had my dad's driver's license suspended…but still no diagnosis or medicines.
Finally, we found a GP who put him on Dilantin and the seizures were pretty much controlled.
Sadly, though, he wouldn't admit there was anything wrong with him and blamed my mom and me for 'making up stories.' (We didn't have a video camera to film the episodes, so had no proof.)
Years ago (and probably still today) there is a stigma attached to certain disorders like epilepsy (and others like mental illnesses). The fear that people will look at you differently or treat you differently is as powerful as the disorder itself. I can understand his reaction.