This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!
I’m sitting on the precipice of possibility and don’t know which way to go. I’m conflicted. And when I was told to write about the Epilepsy stigma, I thought, I’ve already done that. But the more I pondered my life with Epilepsy, the more I saw how the stigma doesn’t just affect the way others regard those with Epilepsy but also the way we treat “us.”
I’ve had this dream- one from which I wake up crying, so I guess you’d deem it a nightmare- where I’m trying to save this sometimes grown woman, sometimes teenager from dying. The gist of it is she’s been in an accident but walked away visually unscathed and so people consider her whole and healthy. But I’m removed from the scenes in which she interacts with people; she’s swimming in aqua shores laughing, or dressed elegantly in the renaissance period crossing the street, or in the last one, sitting at the end of my cul-de-sac in a kiddie pool with random people… (Am I freaking you out yet? Lol) And then there I am on the side, frantically calling 911 with tears streaming down my face. And I’m screaming into the phone that “she’s dying, she’s dying!” And the voice on the other end keeps telling me she looks normal, that there’s nothing wrong with her. “Look at her- she’s healthy.” But I scream, “She’s bleeding on the inside! Look inside!” By this time, I’m always hysterical and repeating that I’ve seen it. I’ve seen the future and she’s bleeding inside, and it’s spreading, but nobody believes me… She’s dying inside and I can’t save her because no one SEES it. That’s when I wake up with my face wet from tears, gulping for air…
I could never make sense of it.
I hadn’t had that dream for about two weeks until I went for my bloodwork yesterday and I had an interesting interaction with another woman waiting to be called back. She was one of those nobody wanted to make eye contact with, as she was bursting to tell her story… I made eye contact and smiled since we were in such close proximity (the place was packed) and regretted it immediately. She explained this was her 3rd day here and in a booming voice in the tiny waiting room described her body’s demise from mold poisoning. Detailed descriptions of the horrible effects of the mold on her body- things I never want to hear again. Things you’d never want to imagine. Details of which made the people on either side of her turn away and scoot as far to the opposite sides of their chairs as possible. I was equally disgusted but I felt bad for her; whether all of these stories were true or not, I’m sure there were valid elements of suffering in there and I felt for her. Everyone’s got a story.
When she’d released enough of her pent up frustration, she looked at me and my son sitting on my lap and said, “You look healthy and normal, what are you guys in here for?” lol I smiled. I laughed and replied, “Well, we’re both ‘normal’ but I’m here for my Epilepsy” in a respectable level of voice and without need to expand. She cocked her head to one side, said “Hmph,” with a confused look and then picked back up where she left off in her story of personal trials and tribulations. I got the sense she didn’t need to believe me, she just needed someone to listen and I did, for another 20 minutes. Quite a bloodwork day.
Anyways, this morning I woke up panicked and wet-faced, having had that nightmare again. And I started to think- what if in some totally bizarre way, that girl is me? (I know, I know, I’m freaking you out right now. lol I promise I’m not this strange.) Just for discussions sake, in a stream of consciousness, let’s look at it.
Things have changed in the last few months. I’m still seeing this new neurologist but I’ve also met with an incredible neurosurgeon several times who now believes there’s a possibility I’m a candidate (with more preliminary tests coming) for brain surgery to remove the cavernous malformation that may be causing my seizures… Seventeen years ago I was told this was not an option (for fear it would damage my language area) and let it go. Medication was our only source for reprieve and control. I’ve lived with all this for years and now, after reviewing my most recent MRI/MRA scans, I’m being told there’s possibility for the contrary. Whaaaatttt?!?!?! 😊
But if I’m a candidate, it’s BRAIN SURGERY. And that’s what I’ve been warring with. Not the various outcomes- it could fail, I could still be on meds, I could come out more screwed up than I am now, new problems could arise. Who knows? But I go back to- am I a candidate? Should I be a candidate? This new self-imposed application of the stigma…
Do I deserve it?
As the lady in the waiting room, and many others, said- I look “normal” and totally healthy… Why should I be eligible? I’m not in a wheelchair, wearing a helmet, drool coming from my mouth. I do not require a fulltime caretaker. I am not constantly seizing. Why would I be someone who’d take such a clear risk when I seem- at least to others- to live a fairly normal life?
I think to myself all the time- what justifies brain surgery? Considering the publicly acknowledged stereotype, I am far from it (thank you God), yet I reflect on the most difficult parts of my journey…
Would wearing a helmet or being relegated to a wheelchair erase my experiences with Steven’s Johnsons Syndrome with blisters in my mouth and my gums gushing blood as a result of the Dilantin, the rashes from Tegretol, the handfuls of hair falling out while trying Depakote, the weight gain and depression with all of them? The headaches and decrease in eyesight with Lamictal, the inability to drive and seclusion in my house when the majority of these drugs didn’t even stop my seizures? And currently, the constantly feeling drugged and angry at life while enduring clusters of seizures on a horse’s dose of medication?
Would drooling eliminate my joint aches, constant hand trembling embarrassment, urinating myself, forgetting my words mid-sentence and asking what I was talking about when interacting with other adults? The incessant insomnia, fear and basic loss of self? The feelings of inadequacy as a Mommy because we cancel often and I can’t do or go to all the things other mommies can?
Can the 9 months of terrifying seizures during pregnancy make up for not convulsing in front of everyone constantly?
Do I need to recount every horrific moment of bruises, black eyes, split noses, bleeding arms or legs?
And regardless of my history or answers to myself, I keep asking- How much is “enough” Epilepsy?
What quality of life do each of us deserve?…
When do I have the right to say, “I’ve had enough Epilepsy… I’ve just had enough.”
Countless times I’ve been on my knees, begging- pleading- for someone to take my Epilepsy away and here I might finally have the chance. So while we run these new tests, I count the minutes as they pass, let the seizures bring what they may, and continue trying to save that woman, sometimes girl, only I can see bleeding on the inside…
NEXT UP: Tomorrow is a Bonus Blog Day. Be sure to check out both posts tomorrow- Lundbeck at http://www.livingwellwithepilepsy.com and Beth Schill at
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for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.
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