Monday, March 18, 2013

Two Narratives of Decline

It's been a while since I've blogged. There are a few reasons for that.

Benjy is not doing well. We have been inches away from another hospitalization. On the other hand, his EEG was normal, which is ultimately a good thing. When I first got the news it felt like I'd been kicked in the gut. I wasn't expecting that feeling, but there it was. I guess I'd hung my hopes on something that wasn't psychiatric.

I supposed I'd fooled myself into thinking that epilepsy was easy, something you just gave your kid a pill for once a day and it went away. And then in Benjy's case all the other stuff would go away too, and I'd have the boy back I once knew -- the boy I sometimes wrote about here, who may at times have wanted to die, but who was sometimes funny and bright and clever and made us all laugh.

But that was dumb. Because who ever said epilepsy was easy, or easily treated? My apologies to all the folks with seizure disorders out there, and their families, for that assumption. It was just a desperate hope. And anyway, all this stuff started long before the seizure-type symptoms reared their fearsome heads.

So yes, it is GOOD that my boy does not have yet another diagnosis to contend with. He contends with enough crap.

But we are trying to wrap our minds around what he does deal with, every day. and trying to help him get through every day. and trying to get through those days ourselves. And that takes a lot of energy. Sometimes writing, even for the blog, is the last thing I want to do.

There's been another thing eating at me recently, worrying me and taking up way too much real estate in my already over-crowded brain. (When I think of all the activity up there -- and I'm not talking about staggering works of genius here -- the image that comes to mind is Tokyo at night. And that is not what I would prefer, at fifty years old and in a state of near-constant FATIGUE.) That thing is my own disability, which has been much on my mind these days. I have mentioned it here on occasion but I don't write about it much.

This Tourette's may finally have gotten the better of me. For most of my life I did not even think of it as a disability. You were disabled, or so I thought, if you were in a wheelchair. Or blind. Or deaf. Or what we then called "mentally retarded." Now, of course, it is so much better -- and often, if not always, more accurate, to think in terms of "differently abled," and to use language like "intellectual disability."  And just as the discourse on disability has evolved since I was a kid, so has my thinking about myself and my Tourette's -- but inversely.

The thing is, while I struggled in school, socially and, while I was doped up on Haldol (AKA The Worst Med In The World) as a teen, cognitively, the disorder didn't hold me back too much. I've had two marriages, and number two is really pretty awesome. Did a PhD. Realized a long-held dream to become an author (that's just what I predicted I was going to be in my high school yearbook, btw). I did not have the academic career I had hoped for, and that was partly due to the pull of Benjy's needs and partly due to an impossible job market. At the time the plan for a tenure-track position went awry my Tourette's was not wreaking TOO MUCH havoc, although I guess I had started on my path toward unsustainable weight gain on Risperdal -- more on that later.

Well, in the past year and a half, the Tourette's has gradually gotten the upper hand over me. Because in defiance of the usual course of events, MY TS symptoms have actually become more severe with age. (This may be because the stress in my life has increased a thousandfold with Benjy's progressive illness, and stress is a well-known exacerbater of tics.) And here's the kicker: over the past thirty some-odd years I have tried virtually every medication used to treat this damned disorder (or at least every class of medication), and EVERY SINGLE ONE has had crappy, unsustainable, in some ways disabling side effects.

I am now on what I believe is my last-chance med (I WILL name you, you monster. Topirimate). I had such high hopes for it. The best thing about it, in my mind? It was going to undo the damage done by that dastardly Risperdal over the past 12 years and take off the 40 extra pounds I was dragging around.

It's working in that respect. Wanna know how? BY MAKING ME FEEL LIKE UTTER AND COMPLETE CRAP.

Actually I lost the first 18 pounds in two and a half weeks simply by trying my second-to-last chance drug and having a bad reaction to it -- I may have titrated up too fast. I could not eat or drink much for that whole period of time. (I wrote about this a while back but am too lazy to link to it -- sorry!) I've probably lost eight more pounds in the last two and a half weeks. As I said to my beloved sister-in-law recently: Who knew you could be almost dead and look so good?

So, the weight loss is great, but the GI distress, whopping headaches, and cognitive blunting are a pretty high price to pay. There's still a chance they will go away, but what if they don't?

Then I have to make a hard choice. Hard, because these tics are not easy to live with. (That is the understatement of the year.)

And no, I do not swear (unless I want to -- which, actually, is not infrequently ;). I don't have that particular kind of tic, coprolalia, which is always dramatized on TV, as if that alone is what Tourette's is. That involuntary swearing tic is actually rather rare, as far as I know.

But I do have vocal and motor tics that can be uncomfortable, both socially and physically (its TIRING when your body is constantly in motion!). Sometimes I can't type on a keyboard if my hands are very ticcy. Sometimes, when my tics are waxing, I am reluctant to go to the library. And so on. Use your imaginations.

And this, Readers, in ON MEDS. OFF MEDS, my life would be a nightmare. At this point, when every day is stress-filled, I do believe I would often not be able to drive a car safely. Every so often I decide I'm better off not driving even on the meds.

So why am I spilling my guts about all this? I bet you're wondering. Maybe you're thinking you'll go find another blog now. I hope not. You know, it took a LONG time for me to be able to talk about my Tourette's. And a longer time to use the word "disability" to describe it. But right now I am thinking a lot about all of this. About whether I really have exhausted my options for treatment. And if I have, what that means for me. Scary fucking thoughts.

All along, while I was writing and speaking one narrative of decline -- Benjy's -- there was another parallel narrative of decline I was suppressing. That one was mine.

Funny how much harder it is to talk about your own decline than someone else's -- even someone you would die for.

The difference between Benjy's decline and mine is, I am suffering SO MUCH LESS. What, after all, are my physical and social discomforts -- even my functional limitations -- compared to his acute psychic anguish? His terrible, aching loneliness? I know that, whatever life throws my way, I can handle. He's not there yet, He's only twelve. He may never get there.

I know that life is worth sticking around for, even if sometimes it truly sucks. Benjy does not know that. Not yet. My life's most important work has been helping him believe it, because it will be that much harder for me to continue believing it if he is not a part of this world anymore.

So there you go. That's why I've been AWOL. I've been in Tokyo at night. And in spite of how it looks in pictures, it's not been pretty.

What prompted this (insufferably long-winded) post is that I've been invited to write a piece for the Missouri Review blog, about how disability parenting has affected/informed my writing, and my identity as a writer. and as I've been working on that essay, I've been realizing that I'm only telling half the story if I exclude the story of myself. If I only write about being Benjy's mother and confronting his disabilities, and not the story of being me and confronting my own.

Well. that has opened up a big old can of worms. And you, Readers, are the first beneficiaries. You get to eat the worms first. Yum. ;)

Aren't you lucky?


  1. just checking in to say i'm thinking of you all...

  2. Oooooohhhhh Deeeeeebbbbb....Oooooohhhhh...

    I have absolutely nothing productive to say, except I was lying in bed thinking of you last night, and about that other Benjy with his hellishly expensive horse. And Boston.

    Sending you an enormous hug and much, much love and sympathy. And prayers too.