Tuesday, February 19, 2013


Benjy's neuropsychological evaluation is happening at 9 this morning. I was just reading over the one from three years ago. At the time we were fairly distressed over the findings -- super high cognitive functioning in some areas, borderline something-or-other (intellectual disability, perhaps?) in others. These weird, weird spikes and valleys, indicative of impressive intelligence and severe learning disabilities. Oh, and the anxiety, isolation, and sadness. They were in that report, too.

He apparently talked to the psychologist about things he really cared about: Greek mythology, sketching, playing the violin.

God, that makes me want to weep.

Because I do not think the conversation will go that way today. I don't think he has access to anything he used to care about. I think he spends much of his days now in an altered mental state. I saw it yesterday at Supercuts: he sitting in that chair looking like a boy I never met, not only because of his Abilify-induced weight gain but because he looked sick, his eyes looked funny.

I texted my mom: Mom, he looks sick. His eyes don't look right. I don't know what to do.

She did not know what to do, either.

His eyelids drooped in this odd way (I have seen it once or twice before in the past couple of weeks). His eyes themselves looked almost clouded. His entire face registered a kind of loss of sensibility, although unlike during the petit mal seizure I witnessed a week ago, he did seem to maintain some kind of consciousness. I thought I saw him respond to remarks by the hair cutter but I'm not totally sure. I tried to grant him the dignity of a little distance, which at twelve he deserves. So I stood anxiously over by the seating area, but I did not take my eyes off him except to text my mom.

Interestingly, he came back to me as we were leaving Supercuts. Eyes normal, eyelids properly raised. He felt well enough to accompany me to the supermarket, and that was a temporary relief.

However. Today will be a severe test of his mental capacity, his emotional endurance, and my ability to keep myself from crying in a public space (aka the waiting room). Can you imagine what he will feel, when he cannot (as I anticipate) perform any (or many) of the tasks the psychologist sets before him? When he is forced to acknowledge that he is losing his ability to think, to do things he used to do? Oh, this is going to be a hard day!! I don't know where I am going to find the strength to endure it, or where he will, either.

I mean, what can I say to him when he sinks into despair? He is not yet so impaired that he doesn't know he's losing the ability to know certain things. He told me last night he's scared. Who the fuck wouldn't be?
I am scared too. I have never been so scared in my life, ever. Not when I got talked by a friend into skiing (worst decision of my life. SKIING??? Not my sport) and fell off the T-bar at the entry to the expert slope instead of making it up to the slope for beginners, which I'd been headed for. (You can fill in the blanks here.) Not then, and not when I went in to Beth Israel get the results of my genetic testing for the breast cancer gene, and not when I was heading in for surgery to remove my breasts so I'd have half a shot at a full life. Not even a few weeks ago when my toxic reaction to a medication made me think I might be dying.

I am scared and I can't take a Klonopin because then I can't drive Ben to the place to get his testing. I don't think a glass of wine at 7:13 a.m. would be a good idea, either. (I've considered that remedy more than once in the past years though, I will admit.)

All I can do is wake him cheerfully at 7:45, feed him a good breakfast, hold him for a few minutes, and promise him a kick-ass video game when he's done. Whether he lasts one hour or six.

Oh yeah, and McDonald's for lunch. And Swizzle's for frozen yogurt.

What I really wish I could give him is a new life. I would take his in a heartbeat if it meant he could start over. Sadly, that's not how life works. I'm trying really hard to get over that crappy reality.

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