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Robb G

Am I doing everything right?

  I don't have E., but my wife does. I posted here, instead of family and friends 'cause I wanted the "siezure-haver's" point of view :) When my wife has a gran mal, I try to catch her and help her to the ground in a slow, safe way. I'll keep my hand behind her head to soften the head-banging (while not trying to keep her still. I've learned that apparently makes her muscles sore and does'nt work so well). if space is limited (as E rarely chooses a safe place to happen), I'm likely to loosely hug her, to help "control" her limbs (it'd do noone any good to kick a TV over on ya both). All this time, I'm talking very calmly and comfortingly, in as soothing of a voice that I can muster, saying things like "I got ya." and "It's alright. Everything's okay." This is to alieviate some of my stress (I sometimes cry, I'll admit it.) and stress of anyone else who may be around (911 calls for a gran mal can be really expensive), but mainly to give her an "anchor" to grab on to when she starts to "come back". As I understand it, at least with her, she'll start to become aware again aurally before visually.  Okay, so yeah, I've been drooled on every time and pee'd on once, but that's just nature of the beast. I reckon if I cant accept that when it happens, I've no bussiness being married :)  I also know the whole "make sure they dont swallow thier tongue" thing is a great way to loose a finger lol.

  When a siezure is'nt happening, I do tend to make fun of epilepsy (read: the condition itself, not the having of it or people with it.) I hate the condition, but I respect it. I do this because, TBH, my wife and I have kindof twisted senses of humor, and the ability to laugh at something increases one's ability to deal with it better. My favorite is referring to it as demonic possession :) it's just so ridiculous how can it not be funny? :)

 So my question, basically, is to those of you whom have gran mal's: Am I handling them right? Is what I'm doing helpfull? And Is there more I could be doing to ensure my wife is as comfortable as possible?

 

Comments

Re: Am I doing everything right?

Hey Robb,

You may find those on these threads who disagree quite loudly, those who might say that to laugh at a seizure is a terrible act of disrespect. I think that as long as your wife understands in what sense your humor is in, and shares in that sense of humor, then you have no need to look further for justification for your actions.

Humor exists when you have let go of self-righteousness.

To know the humor of being pee'd on might be the ultimate lack of self-righteousness. 

It sounds as though you and your wife are trusting of what is; as if your humor about life creates an enjoyment to what comes your way in each moment, even when it is a seizure. This remarkable state of being reminds me of one of my favorite quotes by Tolle, "Accept each moment as if you have chosen it." 

Many people who ask for advice on these threads start from the concept of "WHY ME, WHY ME?" 

Yet so few people realize they might benefit more from the thought, "why not me?"

Keep researching, Robb. There is an incredible amount to learn about seizures, seizure triggers and how and why a seizure threshold acts the way it does for each individual- some neurologists can be extraordinarily difficult to communicate with, so the most relevant information about your situation will not often come from her doctor appointments. 

Keep laughing, too!

marty

ps-one piece of advice-

Reexamine the idea, the concept, and the medical label and belief that epilepsy and seizures are bad/wrong and abnormal.

just for fun, consider the following-

What if a seizure is not an ABNORMAL event, what if a seizure is a normal event? But why do we consider it an abnormal event then? Well, in the worst case scenario, a seizure can "lead" to death. If the medical industry does not treat death as "normal", then the medical industry does almost everything possible to consider death as abnomal so they can fight it, so the medical industry has a reason to exist in the first place. But this means that we all have been duped to believe that death is abnormal and bad and wrong and therefore death should be feared and definetely not accepted for what it is.  

I think when a person realizes very profoundly how ridiculous it all is, like getting pee'd on, laughter is an extremely natural reaction to accepting this moment as it is. This is such an incredibly powerful state of being that requires nothing accept letting go of wanting things to be different than how they are.

 

 

 

 

 

Re: Am I doing everything right?

Hi Robb,

  Yes, holding your wife as the seizure plays out in her body is a good way to keep her safe until she is on the floor. I had a seizure last year (I am new to seizures since mine was caused by a assault that caused me to have a head injury resulting in my seizure disorder). When I had my recent seizure last year, my mom was luckily there since my muscles felt paralyzed and I couldn't move. It was a little scary to me, but luckily she was there to lay me down on a soft couch and then called 911 for emergency help. I hope your wife is ok--how is she doing? What medications she takes? I take Keppra.

 Sincerely,

Gina