Elaine H
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Just got to share this with you guys, after 25 years with TLE, and no end of ignorance and prejudice from society, I think I may have finally discovered the problem with Epilepsy and society!
I was recently out for a meal with my father, and a group of people that have known me since I was a little girl, although I haven't seen them for manyyears, they were aware of my epilepsy, my surgery, etc and have been in touch with Dad, regularly asking after me, how I was etc, anyway, last night, after many years, we all got together for a meal, and I was so looking forward to seeing them all, I was also expecting the usual questions, how are you doing, did it hurt, are you still having wobblers, has the surgery helped, are you still on tablets, you can't catch it can you, what caused it, have you got a job yet...etc etc!! I was also looking forward to arriving, as a well dressed, confident articulate intelligent woman, and shattering the myths and probably some of their expectations that I would be pushed from the back of of an ambulance in a wheelchair, snorting, foaming at the mouth, legs akimbo, screeming like a tortured banshee, eyes rolling like tumbling dice, and generally not the old Lainey they knew in nineteen hundred and fast asleep!!!!
We all said hello, got our drinks, some people I recognised, as bad as my memory is, I never ever forget a face, Dad made sure I remembered everyone, and of course, we introduced Mark, my partner to everyone too. We sat down, and the couple we sat opposite, I have known for about twenty years, kept looking at me, and spoke easily enough, but I can honestly say, that throughout the whole evening, notone person asked after my health, my epilepsy, my surgery, my general well being, please don't get me wrong folks, I wasn't expecting anyone to drop everything for me, but you can guarrantee if I'd had open heart surgery, they would have asked how I was doing, but no, because guess what, it was the brain, and you don't talk about stuff like that, because as my Dad said afterwards, people in general think epilepsy is a mental illness, and so they would all have avoided talking about it, bringing up the subject to avoid upsetting me for Chrissakes!!! I felt so awkward sitting there, it was like (for anyone reading this who knows the Fawlty Towers sketch) "Don'tmention the war!" I felt like standing on a chair and shouting "It's ok guys, it's only epilepsy!"
So, I think that is our next plan of attack, to educate the world, that epilepsy, is NOT a mental illness, but a physical disease!!
I hope that you are all ok, and that 2011 will be a good one for all of us?!
Love and best Wishes
Lainey
xxxx
I was recently out for a meal with my father, and a group of people that have known me since I was a little girl, although I haven't seen them for manyyears, they were aware of my epilepsy, my surgery, etc and have been in touch with Dad, regularly asking after me, how I was etc, anyway, last night, after many years, we all got together for a meal, and I was so looking forward to seeing them all, I was also expecting the usual questions, how are you doing, did it hurt, are you still having wobblers, has the surgery helped, are you still on tablets, you can't catch it can you, what caused it, have you got a job yet...etc etc!! I was also looking forward to arriving, as a well dressed, confident articulate intelligent woman, and shattering the myths and probably some of their expectations that I would be pushed from the back of of an ambulance in a wheelchair, snorting, foaming at the mouth, legs akimbo, screeming like a tortured banshee, eyes rolling like tumbling dice, and generally not the old Lainey they knew in nineteen hundred and fast asleep!!!!
We all said hello, got our drinks, some people I recognised, as bad as my memory is, I never ever forget a face, Dad made sure I remembered everyone, and of course, we introduced Mark, my partner to everyone too. We sat down, and the couple we sat opposite, I have known for about twenty years, kept looking at me, and spoke easily enough, but I can honestly say, that throughout the whole evening, notone person asked after my health, my epilepsy, my surgery, my general well being, please don't get me wrong folks, I wasn't expecting anyone to drop everything for me, but you can guarrantee if I'd had open heart surgery, they would have asked how I was doing, but no, because guess what, it was the brain, and you don't talk about stuff like that, because as my Dad said afterwards, people in general think epilepsy is a mental illness, and so they would all have avoided talking about it, bringing up the subject to avoid upsetting me for Chrissakes!!! I felt so awkward sitting there, it was like (for anyone reading this who knows the Fawlty Towers sketch) "Don'tmention the war!" I felt like standing on a chair and shouting "It's ok guys, it's only epilepsy!"
So, I think that is our next plan of attack, to educate the world, that epilepsy, is NOT a mental illness, but a physical disease!!
I hope that you are all ok, and that 2011 will be a good one for all of us?!
Love and best Wishes
Lainey
xxxx
, but I think you're right; if I were dealing with something less "weird", they would be at least a little more open.
) at avoiding talking about what I've been through. Like you, I don't expect them to drop everything for me, but a, "how are you really doing?"- not just a general inquiry-would be nice. I know my family loves me, but I sometimes feel that secretly they think I'm just a hypochondriac, drama queen, or something. None of my doctors think that.
