When You Have Plans and Illness Has Other Plans

Lights Are On But……

On Thursday, August 20th, I was diagnosed with focal epilepsy that has the potential to be generalized epilepsy. What that means is that only specific areas of my brain are having electrical malfunctions, but my EEG shows that there is a tremendous potential for it to spread and affect my entire brain.

I don’t have the kind of seizures you see on TV where the epileptic is flailing about and convulsing. Mine are more insidious. For anywhhere from 10 second up to three minutes, I check out and flip the switch for the Vacancy sign. I am peripherally aware of what people are doing or saying, but, for that time, which feels much, much longer,I lose voluntary motor control. No matter how loudly I scream at myself in my head, I cannot force myself to move. Someone else can move me, but the limb they pick up, simply flops back down. From the outside, I look like a marionette whose strings have gone slack. My eyelids also flutter like hummingbird wings in the middle of one of these episodes. At the end, I go right back to being fully alert and normalcy resumes.

No strings....
No strings….

My neurologist has started me on a baby dose of a long-standing seizure med called Lamotrigine. It’s supposed to regulate the sodium channels in my brain. Since I’m so sensitive to medications, I can’t start at what would normally be the therapeutic dose. I’m already having headaches and nausea but I’m not sure if that’s what is referred to as an “aura”, or if I’m experiencing an oft reported side effect of Lamotrigine.

Time is measured by perception.
Time is measured by perception.

An aura is basically a precursor to a seizure. It is also considered the beginning stage. The type of aura a person experiences varies from individual to individual. Mine is headache and/or nausea. Of course an aura can’t be the scent of chocolate chip cookies or the sound of rain on a tin roof. No it’s got to be unpleasant. But it’s basically an early warning system that tells you that, any time in the next few seconds to hours, you’re going to have a seizure.I lose track of time very easily between the point that I notice an aura and the time I have a seizure so my aura might only last a few seconds, or it could be half an hour. I honestly don’t know. So please don’t ask me.As if losing control of my body and misplacing minutes wasn’t bad enough, Florida state law stipulates that someone diagnosed with epilepsy cannot legally drive for a minimum of six months. So now, my husband and son are scrambling to arrange their work schedules so that neither lose their jobs. Public transportation is basically nonexistent in our little town and it’s going to be at least two more weeks before our son has his license again

Driving at home isn't fun....
Driving at home isn’t fun….

Of course I understand logically why the state has that law. It’s just really upsetting knowing that I’m causing problems for my family. And yes, I know I’m not doing it intentionally. Yes I know it’s not my fault. But (there’s always a “but”) if I had a normal brain, we wouldn’t have to deal with this.

I can already hear the objections to my statement because my friends and family have already said these things time and again. But that doesn’t keep me from being sad, angry and frustrated.

It will get better eventually. I have to believe that. If I don’t, I’ll start worrying about having to have brain surgery and some people get worse after that. Or I’ll start worrying that I’ll have to wait longer than 6 months to drive. I already have to put off going to school for another semester, but a year long driving restriction will put me even further behind on my personal timetable. I can already kiss my research goodbye because I’m not in school and I can’t drive to get over to the lab for experimentation. So, thank you Epilepsy, for sending me back to square one.

But that’s enough whining for now. I’m sticking to “It will get better”, because my other choice is “My life as a biology major is over.”.

*****************************************************************************************************************************

Thank you friend for sharing your story.  I think you express so well the frustration that is part of any serious illness.  It’s not our fault, but there is a feeling of guilt.  Our families have to help us, and I know the author well enough to know she would much rather be helping others, than being helped!  The illness rules all, timetables, vacations, plans all bow down to the illness.  I missed my daughter’s wedding, and part of me can never forgive my illness for that.  We have plans and lives and so much to do, and medication takes time.  Adjusting to it, finding out about the side effects, waiting to see if it works at all, what dose works…..this takes a very long time.  It’s hard on everyone.  

However, my friend is incredibly strong and has a great husband.  I wish there were awards for friends and family that step up again and again, not only to help us but to let us know we are loved.  I want to let my friend know, she’s truly worth having in my life!  I came to the conclusion we’re all slightly broken, no one is “normal” 100%.  I’ve learned so many illnesses don’t show on the outside.  This is why it’s so important when you meet someone, to know you can’t see what’s really going on.  Empathy is important.  

I would also like to share my other friend with epilepsy smells CHILI before she has a seizure.  She can never eat chili.  She can’t stand it, because of the association of the smell and a seizure.  When she asked her doctor “WHY CHILI?” he was “We don’t know why!”  Many thanks for writing this to the author!  I hope she is soon back driving (I’ve seen the drivers in Florida, trust me, epilepsy is the not the thing they most need to be worried about!), and back at school!  

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One thought on “When You Have Plans and Illness Has Other Plans

  1. still fighting

    Yes! I’m very lucky I live in a place where I can walk or take a bus, and I love being at home, but the wait for 6 months of no seizure is very hard!

    Like

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