Tough Day (Parental Warning: Rated R for Rant-Oriented Material and Violence Against Optimism)

I am getting better acquainted with my new Ways of Being. The new ways of hurting, for example. Joints and muscles that ache and throb. Legs and arms weighted down with invisible concrete blocks. You can't see them but I can feel them. You betcha.

Last night, the right side of my face prickled and burned and numbed up (is that a paradox? Good. I like paradoxes. They confirm my belief that not  much in this world makes sense). When I touched my fingers to my right temple, the barest pressure hurt like crazy.

Like crazy. I thought I might be dying but then I Googled "fibromyalgia and nerve pain side of face." Apparently it's all good. I'm not dying; my body is just acting fibromyalgic. Cool.

I dislike the physical stuff because it keeps from doing useful things, and things that are not useful but pleasurable. And it is a near-constant (and wholly sucky) reminder that I am neither strong nor invincible nor much of anything right now.

I am that person who sits around and likes things on Facebook and sometimes watches TV and eats more than she should, and sometimes does nothing at all but stares at walls like a senile dog. Also, I sometimes buy myself little objets d'art at TJ Maxx, which are inexpensive and mass-produced and not really art at all, but I like to think of them that way.

Little blue-glass objects, like this:

[pretend you see a blue vase inserted here. I was gonna take an iPhoto but as it turns out I am too lazy to throw in extras tonight.]

$4.99, and they even swaddle it in tissue paper for the ride home.

I only do this TJ Maxx shopping when I am not too tired to drive two miles down the street. Once, twice a week? Maybe. Maybe not.

But you know what? If the pain and fatigue suggest I'm no longer the super-mombot I once was, they are also a reminder that I am alive. Warm-blooded and sentient and possessed of physical parts. I'm a walker of dogs (one dog, and not very briskly, I must admit) and a driver of daughters. A lover of husbands (one husband, if truth be known) and a some-time "good-cooker," as Benjy once pronounced me.

I appreciate the reminder. It helps. Because my other New Way of Being is pathless. I am a car without a road. A horse without a trail. I am totally fucking lost because my boy is gone and I am no longer his primary advocate.

I am not scheduling his doctor's visits. Nor am I triaging psychiatric crises. I'm not a short-order cook, a reluctant McDonald's enabler, a policer of computer-games. (Well, I was never really good at that one, anyone.) I no longer seek desperately for antidotes to despair.

Frozen yogurt? I'll get you a large one.

Cupcake?? Whatever kind strikes your fancy.

Tennis??? Of course not.

Well, how about an Ativan??!! (I'll take one, too.)

And even though I yearned and longed and even prayed (in my Jewish-atheistical way) for relief, for rest, for a little break -- just a few days, maybe a week -- I am so empty now, without him, I cannot bear it.

My god, I miss that boy. When he calls happy I can bear it, because HE can. When he calls and begs me, sotto voce so he will not be heard and reprimanded, to take him back home, I am frantic. Frantic. Because he is there and I am here and I cannot scoop him into my arms and make him better.

What I need to remember is, he is too big for scooping and would be even at home, and in any case I have never been able to make it better. Not longer than an hour, maybe a day.

That is my crappy truth. I have tried my very best and my very best was never enough.

Before I married Lars and had kids, I was going to be an Academic Star. Then when that didn't pan out, I was going to be a critically acclaimed novelist. I figured I could live on four hours of sleep a night, and I would just write after everyone else conked out, and I was not needed.

When that didn't pan out I was just going to settle for being the Best Mom Ever. See above.

So I'm trying to find my way. I am FIFTY YEARS OLD and trying to "find" myself. I know, it's ridiculous. I was supposed to do that in my early twenties -- but in my early twenties I had it all figured out.

And the joke was on me.

What I am trying to do is focus on my health -- to relax a little. But I don't know how to relax. That is something they do in Italy, in Spain, maybe. In some places people know how to sit and linger over a meal. They know how to just be in the moment. I don't think we're quite as good at that in America.

Or maybe it's just me.

There is a bright spot, however. In between staring at walls like a senile dog and not knowing how to just be in the moment and hauling my cinder-block appendages up and down the stairs of my house I am accumulating awesome writing fodder.

To paraphrase my beloved brother's immortal words, I have reached the apex of fucked-up-dom, and how lucky is that? I will never run out of things to write about. Fortunately, writing is something I do pretty well.

That might not be immediately apparent, as I've just held you hostage, Dear Readers, to a long and ill-formed and EMBARRASSINGLY self-pitying rant.

I'm sorry.

I do that sometimes. I hope you will not hold it against me. In return for your patience, here's an I.O.U. for a happy post.

Maybe in a couple of days, OK?

Neuropsych

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.

The Old Story

Sometimes when you think things are going great, you get a nasty surprise. For a few weeks now, Benjy has seemed happy, especially with school. He's been lively and engaged. He's been learning. (Tonight he informed us and the dear friends we were eating with of the causes of the French and Indian War, which the rest of us over-educated folks sitting around the dinner table had forgotten.) There's been a fair amount of humming and singing going on around here. Hes' been eating-- real food, that is -- which is a relatively new and welcome development.

So imagine my surprise and dismay when tonight at bedtime he thrashed about in his bed and begged me not to send him to school tomorrow.

"But you love school," I reminded him.

"But I can't go tomorrow."

"You have to."

"It's not FAIR, Mom! There should be more days off than there are school days. It's not right!" His body was so agitated, and his mind, too, that he almost wrenched himself off the bed.

I stroked his damp hair. "Go to sleep and we'll see how you feel in the morning." This is the oldest trick in the book. Tell him you'll think about it when you really have no intention of letting him stay home. He sighed bitterly. I kissed him goodnight and went across the hall to read email. And after a few tense moments I heard him weeping.

I sat there, not knowing what I would do, until he called me. Then I went to him.

"Can you lie with me?"

"Sure, honey," I said. I lay down beside him and his rigid body relaxed. His warmth was somehow consoling.  His arm, which he'd draped over my waist, slipped off. And as is always the case when I lie in his bed -- a rare occurrence these days, and rightly so -- we both fell asleep. That was an hour ago. I'm up again, and I'm thinking. Ben is such a vulnerable boy. He probably always will be. Probably every time I think we've turned a corner we'll slide back a little. Two steps forward, one step back. But that's okay. I've given up on that trajectory you dream about when you're twenty-six, or thirty-two, or even nineteen, and you start dreaming about babies. And you know what? Heart-ache be damned, I'll take what I've got.

He's sleeping peacefully now, and I will be sleeping soon. And we will see what tomorrow brings.