So THAT happened …

I have just tons I want to write but am just not getting a chance to. Maybe I’ll even be able to write WHY soon here.

I am still waiting to edit my previous story enough to my liking before I really post links to it anywhere. I am a bit of a perfectionist sometimes, although I have to let go at some point because otherwise I would never post ANYTHING … I’d just keep editing, a-hand editing, a-hand editing.

That’s a very poorly done Pee Wee Herman reference by the way.

Unfortunately, I keep finding more and more idiotic statements in blogs about Lyme. Some are quite a few years old, so if I do another post scientificating the science blogger (does an octopus have legs?), I will keep it to within a year. Or 2 if it gets me really perturbed.

But none of that now. Instead, I am going to tell you a quick story that can even NOW still make me so mad I almost want to want to strangle a fairy.

Before I understood I had narcolepsy and what it did to my brain–not only during regular “working” hours but also to my waking-up self. Long story short: I need no less than 2 separate alarms going off at about 120 dB each while simultaneously shaking my bed like an earthquake. This was back when my son was in 3rd grade. He was late a couple of times because of my narcolespy brain, and I was called down to the principal’s office. Not like when I was in school, but in a grown-up way via letter. Kinda more scary even.

I actually knew the principal of the school. She was a sort of ok lady, but I remember her being a bit …I’m still not sure the word for it. She actually retired the following year or 2 as she was getting up there in age.

When I explained why my son was late a few times here and there that year (they have a limit), the conversation sort of went like this:

*small talk*
Scary Principal Lady: Ok so let me make sure I have this right: Oliver has been late because you can’t get out of bed in the morning.” This was said in a Minnesota nice type of way. Nice but condescending at the same time.

Me: Not exactly. (I explained again that I had Lyme disease recently diagnosed, that I had it a long time, and sometimes my brain would not hear my alarm–and my doctor and I didn’t know why yet.

SPL: “Well why don’t you have Oliver set an alarm clock next to his bed?”

Me: “Yes, we did try that; however, he doesn’t wake up either. He is a sound sleeper like a lot of kids are at his age.”

SPL: “Hmmm ….So why don’t you have your neighbor come over and make sure you are up every morning?”

Me: *blink* *blink*

Now even forgetting the fact that this was not the 1950s, and the neighbors moved in a few months prior … but why in the world would she think I would hear a knock at the door (or ring of a doorbell) when I can’t hear a very loud alarm clock blaring right next to my head?

Me –sheepishly:  “They just moved in recently, and I don’t know them very well yet. I probably wouldn’t hear them knock anyway.”

SPL: “Mmmm hmmmm …” Long look at me. “Well what if your smoke alarm went off?? Would you be able to hear that? Are you sure you are capable of raising your kids? PLUS …. ”

At this point she kept saying stupid stuff like that while I concentrated on not tearing off one of her bony arms and beating her with it.

I said something about something and left. I said it nicely.

These days, I know quite a bit more what is going on with the Lyme itself, my narcolepsy and all the science of it so if I had to deal with that again, I would do much better and NOT feel as bad as she made me feel for quite a while–even though I knew I didn’t do anything wrong.

But to say that sort of thing to an incredibly ill mother who had absolutely NO history of being a “bad parent,” a teenager who was also sick and previously went to this school, and a son currently attending the school and who had not been in trouble (other than me being sick) is so utterly ridiculous.

Imagine saying that to someone with MS. or someone with brain cancer. Oh the outrage!

Why don’t we get the tiniest bit of acknowledgement of having a complex illness? We don’t want to go around making excuses for ourselves; we just want understanding.

This is why I work hard on educating others.  So people don’t have to hear such ignorant statements.  Heck, I may even save them from getting high-fived in the face with their own bony hand.  Two birds and all … 

–Loon Out

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