Epilepsy Foundation

I've just received from family some newspaper cuttings referrring to a few people with epilepsy. Yes, there they are: the old cliches. Person X or Y is 'brave', or has 'battled with his/her condition for n years'.

I've heard these terms used of me too - and have rejected them outright. Why? Being 'brave' is when you do something special, something you didn't have to do and most people wouldn't do - and usually to help others in some way.

I'm not 'brave'. 'courageous', or anything else like that. I have a particular condition, like most other people reading this site. So what? I've only two choices live with it (or despite it) or lie down and die. It's as simple as that. I live with it. What's brave about that?

'Battle with it'? No, I don't. It's an occasional nuisance I have to put up with, then forget about it till the next time it happens, for it will. And in the meantime I just get on with things, like anyone else, regardless. I don't see why it should stop me.

It's possible some of what I've just said has annoyed some people. With children, it's a different matter, of course. But any adult just has to live with what nature puts in his/her way, bronchitis, arthritis, sinusitis or whatever else. There isn't any choice, is there?

Why do these words or phrases irritate me so much? Simple answer: it's victim talk. 'This poor sufferer' (children excepted, of course, from these comments). In my book, it's patronising. Possibly I'm wrong, possibly not. I don't think so. I'm just like anyone else, with a particular condition that people don't like to hear named, for some reason. I can do things that quite possibly they can't do. Well, what of it? Name a single person who doesn't have some condition or other. Yes, some are genuinely brave and have battles to fight. Most of us aren't and don't. We just get on with things, don't we? Just like anyone else - only that anyone else doesn't have a condition (s)he doesn't like the name of. They have a problem; I don't. It's the word, and the experience of epilepsy. I live with it, for I've no real choice apart from dying. And that I don't intend to do just yet. I've too much else to do first. Is that brave? No, it's just normal, isn't it?

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Comment by Bethany Hahlbeck on May 28, 2010 at 11:03pm
Hi Michael. I agree with you for the most part. i cry sometimes but usually because of the impact this has on my kids.But you had me laughing,im terrible but i get so mad sometimes when my mom or other family members speak for as if ive lost my voice.I know this may not apply to you directly but it sure brought up some very recent memories. im very close with my mom and she means well but i get down right mad when at the age of almost 36 i get a pat on the back for taking my meds.When i found out my loving husband and mom were talking to my dr. without my knowledge, I flipped. I have epilepsy, i know. Ihave the battle scars to prove it but im also a smart(most of the time)woman who has a voice! This is a great group for me because i had lost my voice and let everyone else control my life,my health.Im tired of hearing the whispering that stops as soon as i enter the room,"oh,poor baby, bless her heart, she had a hard day".Yes, i did have a hard day and i would have told you, because i was there.Sorry i went off on my own issues. I have epilepsy and bruises,some odd speech patterns too.I may not ever be the same woman i was ten years ago and that is ok. I do what i can to stay healthy,love my family and find joy where i never did before.Thats a gift that this has been brought to me by epilepsy. I can cry if im sad, and laugh without caring if its too loud. I find joy in things i never did before.Life throws curve balls and we need to catch them and embrace life. and rembember my name is not poor thing or bless her little baby heart, Im bethany.
Comment by Michael Igoe on May 25, 2010 at 1:35pm
I'm deeply touched by some of the comments I've read on here, from Jess, Bryan and (as usual) Sparky. Possibly I did seem a little sour, but I didn't intend to, when I first wrote what I did. Let me put it this way: I'm a keen swimmer (shallower water only, for safety reasons, in the local city pool). Going into the water isn't, for me, brave. It's getting exercise I enjoy, rather like getting up in the morning to stand on my feet. But to save someone from drowning, putting yourself at risk: that is genuinely brave.
Don't imagine I haven't sometimes been driven to the edge of wondering if it was all worth it. Many years ago, when our marriage was disintegrating and, with it, my ex-wife's mental health, I found myself in a dark room. There in front of me were bottles of medication. A handful of each would be all it would take. Then another thought broke into my mind: 'And are you willing to let them win? There was only one honest answer to that: no, they wouldn't win. I was going to stay, standing on my feet. 'Better that', someone once said, than dying on my knees.' And, obviously, I'm still here, 30+ years later. Sadly, my ex-wife probably isn't.
So, does that make me 'brave''? I honestly don't know. Was that 'battling'? I don't know that either. What I can say is that I hope I haven't offended anyone here, for I didn't intend to. What I can say is that I was speaking for myself, objecting to cliches. Some very unpleasant experiences - being confined in a psychiatric ward (in Malta) in the last short time, simply for falling over in a collapse and grazing my head - has affected me more than I could have realised. No, the unfortunate people there didn't trouble me so much as the loss of sleep their obsessive behaviour caused. That, and the need to force my way out, with threats of police action if they tried to stop me leaving. I don't know if it was brave to do that either. I'm surprised at the deep effect that has had. So, again, sorry if I've offended anyone. It was never my intention. And thank you for kind comments. I'd like to add the people who've responded so kindly to my friends list, if they aren't there already.
Comment by shelly g on May 25, 2010 at 12:16pm
Siezures can be alot of things to alot of people, but i've never known they were optional. Honestly, who would want to to opt for them? Everyone who has siezures has had it effect them and their lives, but how can that be called brave? Thats as dumb as thinking everyone with siezures should be put in a back closet.
Comment by East on May 25, 2010 at 10:03am
Its best not to think so much about 'being brave' or 'not being brave' thing. The more you think about it, it gets worst... I believe its best to engage thoughts into something different like something nice like a hobby or times when you felt happy, proud, loved ... and cherish those moments.
Regards.
Comment by sparky triggers on May 25, 2010 at 8:47am
hello all ! hi michael ,it's sparky.well there are a few words that re-late to brave that i'd like to share with you. COURAGE-ATTRIBITE-SPIRIT--FORTITUDE-HEART--SPUNK. there are many more.i picked those ones because they remind me of you.positive. what's in a name or a word ? it can be meant differently than other ways we may generally think of.the word "brave" has many views.. you are one of the hero's and friends to many.whether you know it or want to be or not,you do help so many people with epilepsy.in doing so you have had to go through much yourself as well.blessings my dear friend. sparky. p.s. i'll get back with you and let you know a spot in your book i may relate this discussion too.many times we all don't see our selves and what we have to do and have done in our lives..we are just living and accepting and cruising along.to another-they see things differently.thats what others in positives ways are saying.to walk in your shoes one is wondering how they would,and if they could .would they have the ability to be as strong.does this make sense my friend? talk to you later.
Comment by bryan farley on May 24, 2010 at 7:36pm
I am brave.
some days.
some days I am offended by people who think I am brave.
some days I am offended by people who think I am weak.
some days I am frustrated by my own weakness.

Michael, you asked an interesting question about whether choosing to live is considered brave. You wondered if choosing life were brave or normal?

Could it be both?

You wondered if some people were patronizing you when they called you brave? You wondered if some people were complimenting you.

Could it be both?

I do not see life as simple as you say you do. And I doubt that you see it as simply, otherwise you would not have taken as much time to wonder how challenges affect different people.

I also know that you said "most of us just get on with things." It has been my experience that most people do not get on with things. While most people are affected by something, most of us carry our burdens and continue to be affected by them. Many are so concerned about sounding like victims, we become victims of our silence. Perhaps we will die years early from stress or some other health problem. But most people do not deal. We just get on.

You seem to have a problem with people recognizing your bravery. I also think that is normal. Besides, as you say, you did not choose to be brave. You are just doing it. You do not think much about it. You do not feel as if you have a choice. In some ways, that is why people consider you brave.

You fall.

You get up.

I do not wish to tell you how to feel. It doesn't really matter to me if you feel brave. It doesn't really matter to me how you label yourself. I appreciate that you shared your experience. I would challenge you however, to make room for other people's experiences.
Comment by Jess on May 24, 2010 at 7:18pm
I hate victim words, hate them, and can not bring myself to understand those who expect me to lay down and die. Just as I don't see myself as someone bravely making their way through life, I do see someone who stumbles only to get back up. I'm not perfect. I don't see myself ever becoming that way, but I do see someone who has refused to give up hope. Does that make me even a little bit brave? No not really, but it makes me stronger. I was told that my best bet in finishing high-school was to become home schooled, but I get up every morning and go anyway. And now I can proudly say as I get ready to wrap up my junior year, that I'm holding A's in AP classes. Brave, no. Strong? I'd like to think. When it comes down to it, I still agree with you. We're not "brave" or "battling", soliders do that, they're the brave ones. We didn't get much choice in this as you said. We deal with it though, and that makes us stronger than the average person. I hope you can see that in yourself. Can we drive a car? No, we can't. Can we ride a bike? Personally I don't have the balance to do that anymore. But I can rely on myself to turn a hopless situation into one I can handle. I'm stronger than I was three years ago and I'm proud of that. Be proud of yourself too. All the best.


Jess
Comment by Michael Igoe on May 24, 2010 at 6:25am
I'd hoped that what I've said above wouldn't cause offence. I don't like terms like 'brave' or 'battle with', and refuse to have them said of me. I've one simple choice in the matter: die. Those words, I believe, are patronising victim-talk. And directly behind victim-talk comes contempt. Count on it.
Having a normal married life, with children, despite epilepsy, is commendable, certainly. I don't know if I could have done it. But I'm not so sure 'brave' is the right word here. 'Brave' would apply to a young child who kept his head and called for necessary help. I dearly wish I could have had a family of my own, but my ex-wife couldn't have children. Her own family drove her to distraction, because of me. I settle for being an uncle, I hope a good one.
No, however frequent they are (very), I don't 'battle' with them. I just live with them. Too bad, but who doesn't have problems? I did get through university and college - three times. Brave? No, normal for me. I didn't see why it should it stop me doing what I could do anyway. The same with overseas travel and the other work I do, some of it published. I'm a person first, not a disability. I want Joe Public to realise that.
Are my family 'brave' for helping me in earlier years (14 on), and now? I don't know, but I thank them for it. My ex-in-laws, for their hatred of me, I'd rather not think about. 'Brave' they were not. For what they did, they were and are contemptible.
Less than two weeks ago, I had to force my way out of a hospital overseas, where they held me in a psych. ward after a minor accident. Brave? No, doing the right thing. Going back to demand medications kept from me wasn't brave. It was doing the right thing. You could call that 'battling', I suppose. I'm not saying where, for there could be court action over this. Again, the right thing to do. Why should this condition stop me? I've done it before. Sorry again if I've unintentionally caused offence. I think I've been misunderstood. I was talking for myself, perhaps for a number of others too.
Comment by Monica Lovelace on May 24, 2010 at 12:09am
Don't you think that enduring the challenge of epilepsy is brave? Some people just give up. I tried to when I was in seventh grade due to my medication and family life. I overdosed on my meds and slept that night for sixteen hours till the following day. I was rushed to the emergency room and they gave me liquid charqoal to drink. Yuk! Shortly after that I got invited to go to church camp with a friend. God saved my life there and has brought me through trialing times.
I am now married and have 2 healthy kids and it kills me to look back and to see that I gave up but a gracious God didn't and instead brought me to faith in Him. I would've missed out on so many beautiful things in my life.
Am I still struggling with seizures? Yes, but His grace has and will strengthen me to endure. Some people have the strength to endure the struggle on their own. I don't know if you'd call that bravery or not but I know that I can't do it on my own and I am so thankful to have Someone to lean on. I'm not ashamed of it either. I wish you well.

Monica Lovelace

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