Using "excuses"

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skyfire322

skyfire322

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So, part of my job is to give tours of the winery to customers. I talk about the history of the place, how we make wine, etc. For the past few weeks, I've had auras and staring spells, causing me to pause in the middle of my speech. I typically then forget what I was talking about.

I usually make up an excuse, saying something like "I haven't had enough coffee this morning". However, during my latest episode, someone had said jokingly "Sounds like you were partying pretty hard last night" and started laughing. Needless to say, that got me down in the dumps.

I have spoken to my manager about what is happening, so they're aware of my episodes, but we are so understaffed that I'm usually always stuck giving tours.

I was wondering, does anyone who has a job dealing with the public make something up to cover the fact that you just had an episode?
 
skyfire322

All the time making excuses, I used to say "sorry I was away with the fairy's for a minuet, what was it we were saying" I have even said sorry I was just thinking and others.
 
My seizures are nocturnal so very few people have ever seen the actual "events" but I know what it's like to be making excuses the next day for being tired, unfocused, and generally out of it. I sometimes claimed migraines which wasn't too much of a stretch since I often get one as an after effect of a seizure.

One of the things I like about being retired is that I can have a PJ day if I need to and I don't owe anybody any excuses.
 
I have to say as someone who doesn't have epilepsy I can only imagine how awkward if would be for you skyfire322.

People should not assume anything really about people they do not know.

I know that before I had kids I would recall some situations when there was a kid or two that would act strange and repeat words and I would think to myself "can the parent shut that kid up?" Now having a child being impacted by Autism & Epilepsy I realize that repeating of words is an Autism trait for those who are verbal.

People are naturally ignorant to what they don't experience.
 
The one word that comes to my mind often is, "tolerance." We all need to practice this in All our daily affairs.
M
 
Is there any way you could totally be honest with the public and let them know you just had a minor "incident"? And now everything is cool. At least the public would know now what to do when they witness a SP seizure and not act so stupidly insane. You would have educated a few.
 
I would like someone to be with me and have to take my epilepsy meds for 1 weeks and make it through there day.They would also have to do everything else they have to do, I don't drive so they can't driive. They have to take public transit to get around like I do. I would like to show someone what it is like being me.
I'm not ashamed when I seize so why should it bother someone else? I don't alway's know when I've had a seizure anyway.
 
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When that happens to me, I call it a "junior moment" (I'm gonna claim that I'm too young to have senior ones). And I might say that my train of thought was derailed.

If it happens every time, you might let your tour group know up front. Just tell them that you have occasional junior moments, that it's nothing to worry about, and that they should bear with you and help you get back on track if it happens.
 
I don't think you need to make up excuses. It has happened to me while giving presentations, having discussions, once during an interview, and - I kid you not - once when I was cold calling during a political activism campaign.

There are always awkward moments and everyone's response, how assertive they feel comfortable being, etc. is different.

Do whatever makes you feel best. Even if it is saying, "Oh... F@ck!" during the middle of an oral presentation - much to the consternation of a small crowd - because you feel it coming on.

(insert appropriate emoji here)
 
I wasn't there, but sometimes I think I'm more sensitive to that sort of thing than the person listening. My big problem is word finding. There is no doubt that people notice, and I loose their attention, but when I recover I think they forget about it. Sometimes when I'm seizing (people can't tell) I feel like I'm looking at the world through a little window and thick fog. I feel like "Jim" from Taxi. *Blink* *Blink* I'm positively struggling to follow the conversation, but people can't tell. I even asked a Psychiatrist one time how I seemed, she didn't have a clue. Whatever you say is fine. Sometimes I just say, "Just a second. It's coming." (The word I can't remember.) Sometimes I apologize, like, "I don't mean to be taking so much of your time.". (Especially over the phone.). They always respond very positively to that.

Try not to let it get you down, it's not your fault. You are doing awesome. People without seizures would be afraid to do that.

FWIW... I've noticed that no matter how bad the jokes are, docents always get a laugh. I think it's because people are there to have fun and want to think you are awesome. "Now where did I put my drink? Oh yes, the tour. Now where was I? I only had five or six glasses...with breakfast, or was it lunch? What time is it anyhow? Oh, the tour. Yes. Welcome to Wine-o Winery, where there's always a fresh glass...if only I could find it..."
 
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Skyfire, I hope I didn't hurt your feelings.

Somebody made a joke at your expense, but didn't realize that you had a seizure. You are upset, frustrated, and struggling, then someone laughs at you. It's totally cool to feel bad about it.

I can relate. There are a lot of times when I'm trying to do something "normal" people can do. I can't tell people what's going on, and if I did it wouldn't go over well. It seems to be part of the deal. All I know is that you are working harder than the "normal" guys, and that takes perseverance and guts. It may feel like an empty victory, but you are getting it done, and that speaks well of you.

I like this old very not-PC song by DEVO, "Mongoloid". It's about a guy with Down's Syndrome. The guy goes out in the world "found out what he could do" and "brings home the bacon", so that "no one knew". He's a hero living a normal life under adversity. He has a disability, but he's ok, because that's who he is.
 
It would be nice if we could always be 100% honest about our medical conditions and make sure that ignorant people get some information about the issue at the same time.

But then there is real life in which you sometimes just get tired of having to explain yourself. It's just easier to say, "Sorry, I'm having a killer migraine, what did you say again?"
Sometimes you have the energy to hold it together and make it through what you need to do that day but just barely. There isn't any extra left over to make it a "teachable moment".


Now that I don't have seizures as often but I still have my seizure alert dog with me whenever I go out, I do get into a lot of conversations about it and do my best to give people a better understanding of this condition that goes beyond the hollywood depiction of it.

Now I have the energy to do this and I don't have a boss to think about.
 
Thank you all for your responses. It stinks because there's a stigma with epilepsy, as people only think of falling to the ground and convulsing. I'm not the most confident guy in the world, and sometimes I'm worried about what people would say/do.
 
skyfire322

Non of us are totally confident and I understand what you are saying but to be honest the ones you hear saying these things are the ones who should be on medication, its what you think of yourself that counts not what others think.
 
Some would say job from heaven.Is it possible because it happened you stressing when in this position and stress can make things worse
 
Fedup said:
skyfire322

its what you think of yourself that counts not what others think.
Click to expand...


skyfire
This is what says it all and Fedup has brilliantly stated it.


Learn not to be too hard on yourself and try and not be sensitive to what others think. If they are not understanding, than its their problem not yours.

If I had to worry about what people think when my girl has a seizure in public I would go nuts. People will either get it or not.
 
My mother use to always tell me I was to hard on myself and and she would say Belinda your your own worst enemy and to this day I don't understand that statement.I just expected a lot more out of myself is all.
 
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