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New Member

Date Joined Mar 2005
Total Posts : 18
   Posted 3/20/2005 9:00 PM (GMT -7)   
I want to open a question, which, in my opinion, is to often neglected: overprotectiveness of some parents of children with E. Maybe some of you will find this harsh, but please, this are just my feelings, my personal story:
For some years my only trouble with epilepsy were - my overprotective parents. So I rebeled in all possibly forms -"good" and "bad" ones. I studied like crazy, I traveled like crazy, I partied like crazy ... and I survived. I had to fight like crazy for every small piece of freedom. Fortunately, my neuro - nearly always - stood by me. Today I can tell that my youth was great. And this is something, isn't it?

If I were living life my parents wished for me, I would be probably still in my home town, living with them, probably without university degree etc. Probably miserable.

Later I was nearly 20 years without seizures, but my parents still talk about it whenever I speak to them. When seizures came again two years ago I just didn't tell them.

I am 40 now, I live with understanding partner, I have free-lance job which I adore and I am successful at. I can't stand the idea of my parents' overprotectiveness. They already know what to do if I have a seizure, so there is no need to alarm them with all this again. I know I should tell them, but I won't do this, because I know their reaction. I don't want to deal again with their unhappiness, fears, endless phone calls, asking about my diet, sleeping, taking pills (in 9 years of taking them I have probably forgotten them twice or trice - without their meddling), about all the dangers which lie in wait for me - etc., etc., etc., etc, etc.
Instead of being happy that their daughter is capable of normal life (except for those quite rare minutes of absences, so to speak), they were/are constantly reminding me of what I can't do instead of what I can do. I had to learn this by myself.
Yes, my parents cared for me - but on the other side, no matter how good the intensions are, that's not an valid excuse for meddling with somebody else's life or making her/him into disabled person without any need to do this.
OK, my case is some sort of happy end story. But what with all those children who don't have a heart for direct fighting which is necessary if you have overprotective parents?

New Member

Date Joined Mar 2005
Total Posts : 18
   Posted 3/20/2005 9:14 PM (GMT -7)   
Dear Jennifer,

I read Danny's story and visited your website just few minutes ago. It's always so sad to read this kind of stories. I can't imagine the sorrow you and your husband must feel, since I have never experienced such a loss.

My best friend of more than eighteen years died three years ago - he died in a diving accident and I still feel such sadness.

I wish you and your husband a lot of happiness with your baby!


New Member

Date Joined Mar 2005
Total Posts : 18
   Posted 3/20/2005 9:31 PM (GMT -7)   

Dear Jennifer


Well, people are just not replacable ... so doing what you are doing is probably the most you can - this way you can even prevent someone else's death. It's a big work!





Post Edited (Axa) : 3/24/2005 6:35:59 PM (GMT-7)

Regular Member

Date Joined Feb 2005
Total Posts : 241
   Posted 3/21/2005 12:00 AM (GMT -7)   


This is my own experience with my parents as far as overprotectiveness...

When I first was diagnosed I was already in my 20's, out of the house...I was on my own by then and my parents would call me all the time with the kind of concern you would expect from worried parents.  When things got better and my seizures got under control, they stopped calling me so much and things went back to "normal" again. 

A few years ago when my seizures became uncontrolled again, my parents were calling me every day asking me how I was doing, did I get enough sleep, etc.  I got all kinds of lectures about the relationship between caffeine and seizures, chocolate and seizures, stress and seizures, loud music and seizures, etc, etc.  It was driving me crazy.  Not only were my parents doing it, but somehow, my parents had talked to my Aunt, Uncle, Sister, and Brother on the phone and they were giving me the same lecture!!!    I was getting pretty tired of all the calls and lectures.  I felt that I couldn't do anything without someone's permission! 

So, one day, despite being given a hundred warnings not to be by myself at any time, I decided to walk down to WalMart - which is a 2.5 mile walk.  I went shopping and loaded up the backpack that I wore on my back, and walked home.  The whole trip took me 4 hours.  When I got home, there were several messages on the answering machine... from various people, wondering where I was.  A few minutes after I got home, the phone rang!  It was my sister - she was frantic wondering why I hadn't answered the phone.  I said, " I went shopping at WalMart."  She said, "How did you get THERE?"  I said proudly, "I walked!"  Well, I never heard the end of that when my parents heard the story as you can imagine. 

I think when a person's independence is taken away, not having the freedom to go places,  having the feeling of being treated like a little kid, ... all these things make it hard for a person with seizures to feel normal.  I mean, I know they mean well... but,   I don't want to feel Special, I want to feel normal....



complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d

New Member

Date Joined Mar 2005
Total Posts : 18
   Posted 3/21/2005 5:58 AM (GMT -7)   
Dear Glenda,
yes, this kind of things I had in mind when I started this thread. I will get a seizure if I am at home or at the business meeting. In a way for me it doesn't matter where. Seizure is a sezuire. If I take precautions like not driving a car, not to swim alone and similar things I totally agree with, then I've done all what really matters. And I can live instead of waiting for the next seizure.
Family and friends sometimes mix what is mine and what their problem. I had enough troubles with E without this kind of meddling. I understood their care for me, but I wasn't prepared to live like they expected from me just so they'll feel better. Their worry is their problem. I proved with my independent life that my life-stayle is working - I am still alive and well. Even if I wouldn't be - I would prefere shorter life in exchange for its fullness.
Again, I am apologising to all parents here if I sound harsh. But I would be glad if this writing would make them think more about their child's quality of life, not exclusively about it's safety, number of seizures and their own good conscience.
I would be really glad to hear opinions of other members. This was always my greatest trouble, connected with E. How about children who doesn't have enough resoluteness to resist this kind of - good intended - bothering?
Hi to all

Post Edited (Axa) : 3/24/2005 7:16:29 AM (GMT-7)

Regular Member

Date Joined Jun 2004
Total Posts : 82
   Posted 3/24/2005 7:10 AM (GMT -7)   
I also, was already  not living with my parents when I was diagnosed, but I was only 23... I was married, and having my first child... Yet I was being treated like a child again... I know where you are coming from..  To this day.. I get that from my parents...
My dad has been very sick in the past couple of months, and I have been doing as much as I possibly can to go see him, I would have to actually argue with him and my mother to say... Shut up..I am coming to see you !!  They live an hour away... My husband would drive me... But I would have to hear... " Oh no... stay home.. you need your rest... you have to be careful "
Well I will tell you... Thank God.. I saw my dad as much as I could.. He is gone now, and you know what, I didnt have one seizure during those times that he was ill.... Now that he is gone, I am having breakthroughs....
I dont think, our parents realize that we know our bodies.... I explained that to them .... How can you tell them though......
And please.... I think all my Aunts and Uncles at my dads funeral looked at me like I had a disease... OHH are you OK, how are you feeling... How is your head doing.... My mother tends to tell everyone about my disorder.... I think everyone she works with knows my life history too.... It is very frustrating....Sometimes I wonder If she does it to get the attention of her coworkers... because I know I sure dont want the attention.......
Feel good :-)
diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

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