I Know Someone Who Is Severely Epileptic

I don’t like it when I am trying to talk to someone about epilepsy and they interrupt me or respond with how they know or are related to someone who is severely epileptic.  I just stand there and stare at them.  I can’t help it.  What’s going through my mind at that moment desperately wants to come out of my mouth but I won’t let it and I’ll keep it to myself here too.  This has happened on multiple occasions with both people I know and complete strangers.  One incident in particular stands out.

Ben and I workout at Lexington Athletic Club.  It’s an awesome gym in that it has every cardio, weight lifting machine and free weight you could need.  It also has a walking track, pool, spa, numerous classes, personal trainers, massage clinic, physical therapists…  You get the point, it’s everything you need in one place.  We’ve been going there for over a year and love it, so we were caught off guard at how they handled a situation that arose.

About a month ago Ben came home from working out (he’s a 5:30 AM’er~~YUK!) and told me a bottle he used to wipe the machines down had bleach in it.  Knowing strong smells can induce a seizure (especially a windpipe seizure for me) he told the staff .  They said they would look in to it so he said okay and left.  I go in to workout at 8:30 am, thinking it had been addressed. As soon as I sprayed it a strong smell of bleach hit my nose.  After I caught my breath, I finished my workout.  As I was leaving I talked to the membership director to let her know there was still bleach in the sanitizing bottles.  She had no idea what I was talking about.  No one had told her.  I explained that I am epileptic, have windpipe seizures and strong smells like bleach can induce them.  She then looked at me like I was from mars.  She just kept repeating over and over that it wasn’t bleach.  They didn’t have bleach on the premises and there was no way it was bleach.  She told me she would go look at the bottles and call me back later.

When she called, the first thing out of her mouth was, “it wasn’t bleach.”  I just handed the phone to my husband and told him to deal with it.  I was angry, wasn’t feeling well and didn’t want to have a seizure.  As he was talking to her it was like a great debate; him saying it was bleach and her saying it wasn’t.  He explained to her again about how it could induce seizures, she again assured him they had checked everything and there was absolutely no bleach on the premises.  She went on to say that she completely understood the situation and took it very seriously because she knows someone who is severely epileptic. When he finally got off the phone with her and told me, I lost it and yelled, “what does that even mean!”

We do not go around comparing ourselves to each other. We talk to about our seizure types, frequency, coping mechanisms, etc… But, we don’t “one up” each other in response and say; “I’m more epileptic than you,” “my epilepsy is worse than yours” or anything else of such nature.  No, we support each other, cry together, laugh together and celebrate milestones together.  I’ve never heard this “severely epileptic”statement from anyone except a non-epileptic.  We all know there are more severe forms of epilepsy such as Dravets, but still yet we don’t do that to each other.  We are all in this fight together.

A month passed with no bleach smell, until this morning.  My husband came home and told me there was bleach in the bottles, yet again. This time, he took the bottle to an employee and had him smell it. The employee agreed it had a strong smell of bleach and said we could give them his name and say he agreed.  I asked to speak with the general manager.  He wasn’t in and an employee advised me to call the president of the company as well given the prior encounter.

I spoke with the general manager who told me that he was just going to repeat what the others had already said.  It was not bleach, there was no bleach on the premises, etc, etc, etc…  He then went on to give me a chemistry lesson and explain that bleach has no smell whatsoever. I’m going to pause here for a minute so anyone who uses bleach can think about that.  Of course it has a smell; a distinct and not so pleasant one!  I asked him how he would explain his employee admitting it had the strong scent of bleach. His response was the same, “it’s not bleach, we don’t have bleach” along with an “I don’t know.”  He then went on to explain if it was bleach there would be stains on the carpet and then said he can’t control what people put inside the gym’s sanitizing bottles.  I at least give them credit for the genius use of plausible deniability as it’s against OSHA regulations to have bleach on the premises and they know it.  Deny, deny, deny.

I don’t know why but I repeated on last time that a strong smell like that could make me have a seizure.  The general managers next statement threw up a big red flag for me and Ben; he was listening to the entire conversation through my Bluetooth headphones.  The general manager offered to terminate our three year contract immediately then and there.  If you’ve ever been in a contract of any kind you know how hard it is to get out of them.  He said it was obvious we didn’t trust them so we shouldn’t have to come there.  I’m still scratching my head over that one.  I told him we would wait to see how our conversation with the president went before making a decision.  As for talking to the president, that hasn’t happened yet.  He hasn’t called us back.  I wonder if the “let them out of their contract” came from him.  You know, just get rid of the problem, make it go away.  I have no way of knowing and at this point don’t really care.

As for the person who said, “I know someone who is severely epileptic” I would love to know exactly what that means to you.  I want the details of how this person’s epilepsy manifested for you to give them that label.  I’d also like to know if I was “severely epileptic” like the person you know, would you have treated me any differently?  I would have to say no.  Again my epileptologist is right; “this is why we call ignorance-ignorance and stupidity-stupidity” and this interaction definitely straddled the line between ignorance and stupidity.

But, it’s a business transaction.  It’s not a friendship, relationship or marriage.  It’s merely a business transaction.  It’s well documented, done and over with so we can all move on now.

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