After my endocrinologist appointment the other day (during which I got a fantastic report!), my mom said, as she often does after taking me to the doctor, “I don’t feel like going back to work.”

And, as always, I said, “So let’s go somewhere!”

Mom always says that she can’t, that she has to go back to work, that Aunt Mary needs her…

This time she said, “Where should we go?”

I squealed!  In case you’re wondering, we went to my favorite Mexican restaurant (where Mom would go back that night, so it was very, very nice of her to take me) and then to the fabric store to get new things to make.  I was antsy and cranky by the end, but it was a lovely time with Mom, and on a weekday!  What a treat!

While we were in the car, we talked about the conversation Mom had with the man who’s doing my reevaluation.  She mentioned that she told him about how, when I was little, I wasn’t really “present” a lot of the time.  I was… gone away, somewhere else.  I asked her if I am present now, and she hesitated.

“Well, maybe sometimes, yeah.  But sometimes definitely not.”

I sat with that for a minute.  I know what she means.  Sometimes, when I go “away,” I can’t even get my eyes to focus, the sensory stimuli is so overwhelming.  Things morph and blur, and I can’t make sense of them.  It’s just like when you hold your hand two inches away from your face and you can’t focus on anything, except the whole world becomes like that.

And my ears feel like they’re underwater, kind of.  Voices hurt because they’re so loud, but I can’t sort out the words.  They come at me in waves, and I get the crest of each wave, at best.  Sometimes I don’t get anything.

My skin feels like someone has taken a cheese grater to it, or like I’m being attacked by fire ants.  I hit and pinch and punch and scratch and bite, trying to calm my body down.

And my molecules.  Oh, my molecules feel like they’re either so tight that I can’t think, or like they’re floating away.  I can’t feel where my body is in space, so I run into things and bruise my arms and legs.

My thoughts float in and out, but they don’t catch on anything to stick around.  I can’t make good sense of them.  There is only what I feel, not what I think.  When I sit down to type, I can watch my thoughts take shape on the screen… but unless they’re typed out, I can’t get hold of them.

There is an odd combination, sometimes, in that I am not really present but my speech still works.  Somehow, I must hear what you say, and I respond… but it never sinks into my head, what anyone’s said.  This is why I actually get angry at myself when I talk, because I don’t know what I’ve said or what you’ve said and I get scared that I’ve offended someone.  There’s no way to tell.  It’s worst on the phone, so I keep most communication to email.

Sometimes, it looks like I’ve gone away, but I’m actually very much there and know exactly what is going on.  Be careful in your assumptions.  If you think your child isn’t hearing you, don’t just say whatever you want, because he very well may be hearing every word!

I guess the best way to know if I, personally, am present is to ask me, because I can let you know.  It’s not always easy to discern by what you see.


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