Friday, March 22, 2013

epilepsy: the fear


So a few days ago I told you all about my most recent seizure, which I experienced back in February.
I've been asked by a few people, "How do you live with the fear of having a seizure?"
So let's talk about the fear.

My typical answer to this questions is, "I just don't think about it. If I thought about it I wouldn't get out of bed in the morning. I wouldn't be able to live my life. And I can't live my life in fear."
Yes, that's the answer I will give 99% of the people who ask, 99.9% of the time.
But I'm going to go out on a limb here and tell you what's really going through my head:


What I fear most, is having a seizure while driving. That's kind of an obvious one, right? I regularly get behind the wheel of a decent sized pile of metal and plastic, with my one and only favorite person in the entire world buckled into a plastic carseat in the backseat. I fear hurting him or anyone else on the road the most. I'm not that concerned about myself. I mean, I know I should be, but I'm almost 40 - I've lived some life. But my six year old... sheesh...I can't even go down that road. That's fear, friends. So why do I get in the car and drive - you might ask? Tell me how you'd manage your life if you couldn't drive. Hello, I'm not wealthy enough to take a cab everywhere. And I can't be constantly calling friends and neighbors to run my errands. Living in the suburbs requires that I drive. I take precautions - I take medication every day to hopefully prevent a seizure; I avoid driving on the freeway if I can; and as of late, I really avoid driving my little, two-door Honda Civic. I don't drive other peoples' kids in my car - ever - and my family and most of my friends know about my seizure disorder and know they are taking their chances when they get in the car with me behind the wheel. That said, any one of the drivers out there on the road at any given time could have a stroke or heart attack or seizure behind the wheel and cause an accident. And we all know how many people go have a few drinks and then get in the car and drive. So, the way I see it - I'm taking medication to control my seizures - I'm being proactive.

This past seizure experience was a little more scary simply because I was on medication that was controlling my seizures. It had done it's job for almost five years. So why did I suddenly have a seizure? Who knows. No one will ever know. The fact of the matter is that meds can suddenly stop being effective at preventing seizures. Plain and simple. It's called a breakthrough seizure. When I initially went on meds after having my two seizures in May of 2008, I just naturally assumed "I'm on meds, I won't have a seizure." Okay, so I knew deep down inside that wasn't a sure-fire guarantee, but it seemed simple, and it was an easy way to get over the fear and move on with living my life. Taking meds = no more seizures. So now that I know that equation isn't realistic, yes, I'm a bit more fearful. I didn't think my meds would stop working for me. I wouldn't be that person I had heard stories about. I would be the exception. It changes things. I guess it puts me back to square one in some ways in terms of thinking, "Okay, you could really have a seizure at any time." My meds have been adjusted and the hope is that will keep any more seizures at bay, but the reality is that I will have another seizure or two or dozen in my lifetime.


I don't take baths and I don't swim. Overboard? Maybe. But folks, I already live with enough risk when I get in the car everyday. I tried taking a few baths over the years, but five minutes in I start thinking, "I shouldn't be in here. What if Max or Eric comes in and finds me blue and not breathing?" It happens. People with epilepsy have been known to drown because they seize in the water. I'm afraid of water and don't know how to swim anyway, so this isn't any great loss for me.

I tend to avoid activities that are physically risky. I broke my shoulder-blade when I had my seizure in 2008. I couldn't pick-up my 18 month old for two months. I don't want to go through anything like that again, where I can't take care of myself or my child, and I have to depend on others to care for me.

I had my first seizure in the fall of 1994. My mom found me face-down, unconscious in my pillow. Had she not found me when she did, I might not be typing this right now. And I'm not being dramatic. People can have a seizure and suffocate in a pillow. It happens. Am I scared to sleep? No. I love my sleep. My bed is one of my favorite places to be. But I did lay awake worried about going to sleep after I had my last seizure. You can't help but go to the place of wondering, "If I fall asleep I sure hope I wake-up in the morning."


Besides the driving, my second biggest fear is that the meds will change (have changed?...) my personality. Any medication you take for the sole purpose of changing the way things function in the brain is going to affect more than just what you want it to. It's an "all or nothing" thing. The first med I was on (when I was sent home from the hospital back in May of 2008), Dilantin, left me feeling buzzed to slightly drunk all the time. (No, not as fun as it might sound.) And after a few days my feet itched like crazy (allergic reaction). The next med, Gabapentin (which I was on for nearly five years), wasn't too bad - I was tired all the time though. I was ready to take a nap at any point in the day. I tried Topamax and was a complete and utter, crying and depressed mess - every single day. Additionally I lost my appetite on that one and had a bad taste in my mouth all the time. Oh, and carbonated beverages no longer have that carbonated feeling when you drink them on Topamax. Next I tried Lamictal - which really was really good other than the headaches and hair loss. All the while I was trying new meds, I was still taking the Gabapentin three times a day. Since the fall I've been on Keppra XR. And after a few months on that I was able to wean off of the Gaba. Keppra has been okay so far. I think the hair loss I'm experiencing is related but my neurologist disagrees. I'm a little depressed, but that really just comes with the territory of anti-seizure meds. Most of them slow down the brain and have that affect. And the sucky reality of it all is that at some point I will likely be on more than one of these lovely medications.


Am I the same person I was back in May of 2008 before I started taking medication everyday? No. I know I'm not. I'm not sure how my personality has changed, but I know it's changed. Those that live with me and interact with me a lot might be able to tell you more. I feel like I've aged a lot in the past four and a half years. I'm a lot more doubtful, and insecure, and reserved than I used to be. I don't get quite as excited about things anymore, and I tend to keep people at a bit of a distance. I'm sure it's all some sort of wonky coping mechanism of sorts. If I can maintain a quite, little, simple life with people at arms length then I won't have worry about breaking-down about all of this at any point in my life.
Because yes, I'm afraid if I let an ounce of all these fears come to the surface it might just consume me. And really, what's the solution?... There is none. It is what it is.


People have used words like brave and courageous to describe how I handle living with epilepsy.
I suppose I put on a brave and courageous face mostly for the sake of my child, and simply because I don't really have any other choice.
The other choice would be to crawl back in my bed and pull the covers over my head and wait out my life.
And even though that's tempting to do some days - that's not the life I want to live.


Carla said...

*sigh* Love & hugs. ♥

Marisa said...

Thank you again for sharing. You are one strong, brave lady.

Liza said...

I'm speechless and in awe of your sense of adventure despite of your daily fears. This is an extraordinary account of your life. Wow.

Janet Kay Goettsch said...

Thank you for having the courage to put this out in the open. Do you have any warning at all before it happens?
You're right that heart attacks, strokes etc. can happen to anyone at anytime, but we aren't aware, unfortunately, you are. That would be scary. Sending prayers your way!

Janet Kay Goettsch said...

Oops, I almost forgot, these pictures are great, full of emotion.

Bunch of Barrons said...

I had an aunt who dealt with epilepsy as well throughout her life. She often had seizures even while on meds also. I know from watching her how hard this struggle is. Praying for you!