You Think I'm Dead, Don't You?

Well I'm not. I'm here, Readers. Sitting by Lars on the butterscotch couch. The Hellacious Hound is snoozing nearby, on the red rug, and Saskia is upstairs pretending to do homework but almost certainly doing other, more interesting things. (Trying on outfits that will not be warm enough when she leaves for school at 7:40 tomorrow morning, for example, or watching something like Parks and Recreation on Hulu, or maybe engaging in acts of Facebookery.)

The fact that I do not know and do not care overmuch tells you something about me right now.

It tells you I am tired.

I did talk to my boy tonight, after a three-day phone call hiatus that was not my choice but which we all survived just fine. My mother reminds me on a regular basis that no news is good news. And usually she is right.

He sounds a bit low these days but he is not in crisis -- yet. Maybe this will the first autumn in four years without a breakdown. Funnily enough, we'd forgotten that this is hospital season, that short days and long darknesses are incompatible with happiness -- in our boy, at least. It's because he has come closer than ever to happiness since I stopped being CEO of his life, that we'd forgotten about hospital season.

But here it is, and all we can do is cross fingers and act all German by pressing thumbs and shouting toi-toi-toi!, and hope he will be OK.

In other news, my short story "Hello, Kitty" will be published at some point (soon, I hope, but you never know) in the online journal YARN (Young Adult Review Network). I did not realize I'd written a YA story. I have never really written for children or adolescents. But my good friend and writing group buddy, Diana Renn, publishes for the young adult market and she told me that I had, in fact, done so.

And I said, "cool."

My other good friend and writing group buddy, Eileen Donovan-Kranz, has a wonderful story out on YARN right now, and if you read it you won't regret it.

Also, I registered Saskia tonight for the 2014 Classical Singer Competition. This is a biggie. She will compete in the first round of the high school division at Boston Conservatory (there are regional first-round venues across the country), and if she makes the semi-finals or beyond she will compete in San Antonio, TX in May. Her teacher thinks she will make it to semi-finals (probably not finals as she is on the younger side and singing art songs rather than arias -- and if you don't know the difference you are in very good company;). So we are excited but also terrified by the implications for our traumatized checking account.

(To be honest, I'm a bit annoyed by the fact that two out of the three composers whose work Saskia will be performing are people I'd never heard of. This challenges my inflated opinion of my own classical music intelligence. Oh well.)

And that, Readers, is that. Glad you didn't give up on me. :)

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?

"Benjy, Awake" is Live on Literarymama.com

The first time I ever wrote about the boy I decided to call "Benjy" was in 2009, I think. He was still so little, and already sad.

What happened was this. It took months and months of writing, and months more of editing. It took a while to find it the right home. So many earnest apologies from editors who loved it but did not quite know what to do with it.

Then I discovered the journal I should have tried first: Literary Mama. And I found "Benjy, Awake," the perfect home.

It's getting a lot of Twitter and Facebook love. (Don't get excited, Readers. It's all relative. But if you want to help it go viral I won't stand in your way. This is the kind of stuff people need to talk about -- when they're done discussing any pressing Kardashian updates.)

So, yeah. Share our story. Get people talking about the social, political, and very personal issue that is childhood mental illness. And then go drink a vanilla soy latte and enjoy my virtual hug.

Two Narratives of Decline Redux: Or Where's That Piece on My Own Disabilities I Promised You?

Remember when I wrote this post about Benjy's decline and my own simultaneous one? About how my Tourette's and my meds and whatever else was making me sick and hurt and exhausted and all that lovely stuff was getting in the way of life and work and writing? And I told you I'd be writing two posts for the Missouri Review blog, one about parenting Ben and the other about my own "troublesome parts"?

I tried to write the second post but exhaustion and ticciness got the better of me. Often it takes me months to write an essay or a story. Sometimes even years. Not only because of my child's issues but because of the pieces of me that often do not work.

Stay tuned, though: I am finally able (and willing) to write publicly about my own struggles, and the Missouri Review is looking forward to that second piece, whenever it emerges.

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?

O Yeah!

Many readers of this blog know that I am a writer. Yesterday I sold my first piece to a multi-million circulation magazine. This is cause for celebration -- not simply because many more people will encounter my work (which of course makes me very happy), but also because it gives me a tremendous boost after a long period of feeling like I'm treading water.

It is also a very well-paying venue and that's a new experience for me. The most I've ever gotten for a short piece (story, essay) is around 50 bucks and a dollop of prestige. My Dickens book, which was published by one of the top two or three university presses in the world, probably earned me about $500 in royalties over the past 14 years. This one, short essay will earn me more than six times that. That's a credit card paid off. Or two semesters of conservatory tuition for Saskia.

Woo hoo!

The piece will be published in O, The Oprah Magazine. I don't yet know when, but I'm hoping pretty soon. I'll let you know (this may require blowing my cover -- I am still trying to make a decision on that one).

It's called "Falsies." I'll leave the rest to your imagination.

What I'm Up To

Greetings, faithful Readers!

I hope your (waning) collective summers have looked like this:

And this:

Mine has not been QUITE so blissful. But I do love the light, the cherry tomatoes ripe for the picking in our garden, and the lack of stressful HOMEWORK. I also like the later wake-up. Oh, yeah.

Here at Chez Delaunay we are dealing with several issues on the junior varsity level. Severe tics and growing anxiety on the one hand, and painful joints (one more piece of the lupus puzzle) on the other.

One cool turn of events: in spite of aching knees and elbows, Saskia kicked butt at her freshman volleyball tryouts and made the team despite stiff competition. I just hope the rheumatologist doesn't tell her tomorrow morning, at her appointment, that she can't play. That is one scene I do not want to witness.

Anyway, when not driving children all around greater Boston, here's what I've been (or will be) up to:

• Submitting stories to journals
• Writing an essay about one of my life's great regrets (it happened thirty-six years ago and involved me receiving precisely what I had yearned -- and pleaded -- for since young childhood. Ironic? Yes!)
• Applying for  Radcliffe Fellowship which, if I am extremely lucky and get one, will fund a year's worth of memoir writing (and then some)
• Conceptualizing the memoir I will be writing about raising a child who wants to die
• Preparing to apply to Yaddo and other artist's colonies for next summer (another endeavor that will require great luck, which seems to be in short supply around here)
• Writing a column pitch to an online literary journal, about -- you guessed it -- parenting a child with mental illness
• Figuring out whether we can get Saskia on Mass health like her brother. I think if the lupus Rx becomes definitive we can -- which can't happen too soon as these medical expenses are BANKRUPTING us
• More stuff I can't remember off the top of my head
• Sitting just quietly and smelling the flowers, like my favorite bull, Ferdinand (great story!!)

Thank goodness for unemployment!

To Work or Not to Work -- That is the Question

Cheap reference to Hamlet aside, I am pondering if, how, and when to go back to work.

I NEED to work, because we are bleeding to death here. Our overdraft can only take so much abuse.

I may or may not WANT to work. I mean, when I work I have two full-time jobs. At least. And that is simply No Fun. I LIKE that when I'm not working, our house is bordering on clean at least half the time. I like that there is time for cooking REAL food (when we can afford it -- sometimes it's a box of spaghetti. Although I'm back on the low-carb bandwagon so I will have to find a way to make chicken for the price of spaghetti. Any tips, people?).

I do find that I accomplish fewer important things -- i.e. writing -- when I am not working. I know it's counter intuitive, but the less time I have the more writing I get done. These days I'm throwing in a load of laundry here, watching an episode of House Hunters there, and all of a sudden it's dinner time. After dinner I don't write, although when I'm employed I often write from 10 p.m. till midnight.

The unemployed Anna hauls her butt to bed by 10.

So, I have a few applications out, but I have a sinking feeling about them. I mean, this is a HORRIBLE job market. And I want to do stuff for which I am more than qualified but which I have not really done before. That is, I've DONE it, but not under that job title. And I am sure there are plenty of folks lining up for the job of Chief Widget-Maker who've been Chief Widget-Makers in the past.

I think in a year's time I will still be Googling for "$5 Low-Carb Meals" and making my own laundry detergent.

The real headline here is: BENJY IS DOING WELL ENOUGH THAT HIS MOTHER CAN CONSIDER WORKING. If nothing else ever comes my way I will be grateful for that.

While I wait and see if I am fated to work, I'll write. My agent and I have decided it's time to overhaul my novel, so I will devote myself to that endeavor, in the hopes that the damn thing will finally sell and bring in that twelve cents an hour the advance will be worth, after five years of working on it for nothing.

At least I won't be frittering away my time doing laundry and watching House Hunters. I hope not, anyway. ;)

Writing Dilemma

As a fiction writer, I have the infinite pleasure of dreaming up stories. Anything goes with fiction. But what about memoir?

A year ago I started writing personal essays. It all began when Benjy was seriously in decline, and the writing was more therapeutic than anything. But after six months I ended up with an amazing piece, so I changed all the names (to the ones you see on this blog) and sent it off. I decided to eschew my usual publishing haunts (literary journals) and try for a glossy magazine. I chose O Magazine and the editor there loved it, but alas, they do not publish much in the way of parenting pieces, so they passed.

So I decided to send it to The Sun, a gorgeous, New Yorker-esque literary magazine where it now awaits a decision. In the meantime, I wrote an essay about my relationship with my deceased sister, and a short (800-word) essay about parenting Benjy -- an up-beat one, but it does refer to his mental health issues and my concerns about his functioning in later life. This time I used his real name.

My dilemma, which is any personal essay writer's dilemma, is how do I deal with the fallout when I reveal things about others that could be hurtful, now or later? That was the reason I decided to blog pseudonymously, and to change all the names in my long essay about parenting a child who wants to die (although I have not changed my own name in that one). All of the essays I've written in the past year reveal things about me AND the other person that that person might not like -- all true things, but still.

In Benjy's case, he knows I write about him but he has never read anything I've written. He owns his Asperger's and his mental health issues -- he is not ashamed of them,  and he himself sometimes brings them up with others, even other kids.

But what if he reads one of my essays in print when he's sixteen, seventeen, and doesn't like what he sees? Do I have the right to publish this stuff, to think about myself -- for once! -- and consult my own desires? Because this is stuff I want to write, and I think people would want to read. Lots of people struggle with one thing or another -- most of us do -- and reading how someone else has dealt with their challenges helps us. I know it helps me.

What I do know is that I'm going to keep writing memoir. I love it, and I think I have something of value to contribute. The question for me is, do I change the names of others -- and if so, do I have to write under a pseudonym, or is changing their names enough? I don't want to hurt Ben, or anyone I love (or even just like), so I'll have to figure this out.

And that's what I'm working on this morning with my cup of coffee and a warm hound by my side.

Halcyon Days

It's been five days since I've blogged about Ben, Saskia, Lars, or the Hellacious Hound. I guess that's because things are going pretty well. For the same reason that the novels, TV dramas, and movies we all love are filled with tension and obstacles as opposed to serenity and happiness (note that the happy marriage usually occurs at the end), no one wants to read a blog about smooth sailing. Do they? Boooring.

As I look over at my boy slumbering peacefully on the adjacent couch -- knocked out by his nightly meds -- I'm reminded of the many, many nights when sleep was a desperately needed reprieve -- for him and for me. I think the two of us, on his most dysregulated days, longed for the peace a protracted sleep would bring. Sometimes, I'm ashamed to admit, I slipped him an extra Ativan in the hopes it would make him drift off. We both needed that. All four of us did.

Now, Ben is experiencing success. As a fencer. As a friend. His stable of comrades just increased one hundred percent. There were three more or less reliable friends. Now there are six -- well, okay -- five and a half. These new buddies are boys he met through the club I started -- a club for Aspies who share an interest in the computer game Minecraft. As of tomorrow, three of these boys will have had Benjy over. And that, Readers, is an astonishingly lovely gift. He's had two hour-plus phone calls with one of them. Will wonders never cease?

But still, I can't helping being on guard. Because quiet spells have never lasted. Ever. In eleven years we've never had more than a couple of months of easy living. Things have always gone south. So I cautiously embrace the halcyon days, but I do not trust them.

One of the happy things in my life right now is the loss of work. I am more relaxed, more present for my family, than I have been in years. I have not browsed the writing or education jobs on Craigslist since November. What a relief that is! And we are making it -- just. I feel sheer joy right now. I love my life. How long has it been since I was able to say that? Not sure. Several years, at least.

The best thing, apart from Benjy's general happiness, is that I am writing again -- and writing things that I'm passionate about. I've put my novel-in-progress aside. Time enough to go back to that when my agent sells the other novel and I have to finish the new one. So right now I'm writing personal essays. I ALMOST sold the essay about parenting Ben to O, the Oprah Magazine. The editor there loved it but they don't really publish parenting essays. So she's invited me to write something else for the magazine, and I have pitched an essay about coming to terms with my dead sister and the sisterhood we never shared. Now that I am not thinking about Ben every single minute I can process some of the other stuff in my life. I have another magazine in mind for the Benjy essay, and I have several other ideas for articles, including one on the price of disability -- the cost to people's (usually mothers') careers and the impact on family finances. I am also planning a profile of Ben's inspirational fencing coach (who left Cuba to come to America with literally nothing but the clothes on his back, and who, among other things, teaches fencing to the blind and to cancer patients). I am SO excited to be writing again!

Of course, keeping this blog is writing, too, and I have found it to be therapeutic and a lot of fun. People from all over the world are landing here. How cool is that? I don't have any plans to abandon it. I might have to rethink the content, though. If I can no longer  write about parenting a child who wants to die, I will have to find other things to write about.

I promise they won't be boring essays on how great our lives are going. Well, okay. Once in while they probably will be.