Thursday, May 30, 2013

Tuesday, May 28, 2013

Benjy, Awake

A few years ago, some months before Benjy's first inpatient hospitalization, I began working on an essay titled "Benjy, Awake." It was my first real foray into creative non-fiction. I was filled to bursting with so many emotions, I simply had to write everything down, This was different from the other kinds of writing I had worked on for so  many years -- scholarship and fiction.

This was my life.

It sounds clich├ęd, but art is (often) born of intense pain. My best writing has accompanied our darkest days. Funny, that. And then again, it makes perfect sense.

That essay, "Benjy. Awake," took about two years to emerge in its current form, the form in which it will be published this summer.

But the reason I bring it up here and now is because the title of it seems so apt these days. For a long time it didn't. I wrote that essay with hope. I thought things were looking up. And then, for a dreary and weary stretch, things went steeply downhill.

For a long time, I did not feel much hope at all.

But now, all of a sudden, my boy is awake in all the best ways. Alive to the beauty of sunlit late afternoons, and the blue expanse of clear sky above his head on days like this one. Alive to family love. To the pleasures of physical activity and friends and just feeling good.

He seems a little less dazed. Sharper by a hair. His eyes are not so clouded. He can carry on a conversation.  He can engage.

He is getting better, I think. I hope.

There are reasons for that, and those reasons, now that we know about them, are helping us to help him. I think things are going to get better still.

I think he is going to wake, and wake, and wake some more.

And that will fill the rest of us, the ones who love him, with joy.

I can't say more right now. Patience, good Readers. More will come. And when it does, and if it looks the way we expect, the (virtual) drinks will be on me.

Saturday, May 25, 2013

Meet The Cutest Kid Ever

Her name is Elizabeth.

Here's where you can find her. Her mom used to be my sister-in-law. She is someone I have missed, thought about, Googled, but never managed to reconnect with.

Because I used to be a part of her family, and then one day I walked away, I was not sure Anne would want to hear from me. (Although we did see each other a couple of times after I'd married Lars, come to think of it.) But Anne is brave, and she is good, and she found my blog and then rediscovered me with an open heart.

That was awesome.

Reading her email made me happy. Reading about her beautiful girl, on the blog that chronicles their lives together, was amazing.

And I'm not kidding, that is one cute kid. I'm not even sure it's legal to be that cute.

Elizabeth is really lucky. She's found a great family, all of them -- and a very special mom.

Friday, May 24, 2013

Haven't We Met, Out and About Town?

Oh yes, right here. At The Nickel.

How could I forget? I mean, it's only been, what, 11 days? On the other hand, 11 days can be an eternity.

So much has happened in those 11 days. The sun has increased its volume by 35 percent. (Don't look it up, just take my word for it. You know you can trust me.) The grass in our yard has risen to ABOVE-KNEE HEIGHT. (And we live in a town where virtually EVERYONE has fancy landscapers taking care of their emerald plots. Embarrassing.) Every morning when I take the Hellacious One out for his walk I say, "Welcome to the jungle."

All kinds of things are waxing around here, and a lot of them are good things, for once. Except for the grass, and the weeds, and the weed trees on our property (the latter of which drop all kinds of disgusting, wet vegetative matter on our cars all spring, so we're driving around looking like the Beverly Hillbillies of Eastern Massachusetts, but before they found that oil well in their yard and got stinking rich. I've got the junker car and the house with peeling paint but none of the benefits of a supply of "black gold" on the property.

Oh. Well.

Anyway, the waxing of good things. Well, there's Benjy. He's been back in the hospital for about three weeks after severe suicidal longings, a desire to stab himself -- or for me to do it for him -- greater and more intense than I had ever heard . His stay in the acute inpatient unit went pretty well, but we had no indication he wouldn't end up right back in the revolving door to the hospital. And that was getting pretty tired. For everyone.

Then our insurance did us a favor, only at the time we didn't know it and we were pretty angry. They kicked him off Unit One onto a lower level of care -- the CBAT unit. (CBAT=community-based acute treatment.) It's in a different part of the hospital. It is a different beast. Still inpatient, but not a locked ward. Very, very structured -- more so, I believe, than Unit One. Every day Benjy has group therapy sessions and school and lots of outdoor activities (he has organized a regular ultimate Frisbee game there. He has taught the other kids how to play it. He turns out to be something of a mover and a shaker, at least within the confines of CBAT. We never knew he had that in him).

He is thriving on the structure there. He is rising to the challenge of participation in all aspects of his current life: groups, school, eating the bad food without complaint and without hassling me to bring him outside food (and baby, that food is BAAAAD). He has tripled the amount of time he is able to tolerate participating in school before needing a break. (Ten minutes to thirty, if you must know.)

And here is the BEST thing of all. The BEST SUNSHINY BEAUTIFUL HEART-STOPPING GOLDEN THING OF ALL: he has friends. A community. And we have realized for the first time how isolation, how not belonging to any kind of community outside your own family, can crush a person's soul. Make depression and anxiety ten  times worse.

So, let me spell it out for you: 24/7 structure and clinical supports + a built-in community of peers who really are peers and are there for him ALL THE TIME=happy and functional Benjy.

That gives us data we can work with. Finally. And we are working with it. With a wonderful team consisting of school administrators (some pretty spectacular ones in our town, I must say), clinicians and social workers, and a very special friend, we have moved a mountain and done it so easily I have to pinch myself every so often to make sure I am awake.

Lars and I spoke with urgency, passion and love about our boy and his needs to people -- one person in particular -- who could make things happen, and things are happening, For real and true. That's all it took -- passion and love and a clear idea of what was needed. And a person on the receiving end who cares about our child and our family -- all of the children and families he serves, I am quite sure -- and who accepted without question his ethical (and very costly) mandate.

I can't say more now. I will as soon as I can. But for the first time in a really long time -- at least two years -- I have hope for my boy. That feeling of hope waxing in my breast is so wonderful I could scream (but I won't because Lars is snoring away upstairs and I wouldn't want to disturb his beauty rest).

Other waxings: somehow, in spite of my own sometimes vexing symptoms and Benjy's implosion and that leaf-meal-encrusted junker that makes small blond children turn and stare as if I am some sort of freak, and my car is an even bigger one because it is leaf-encrusted AND not a German luxury car)*** I am writing like a demon (a good kind of demon. I'm sure that kind exists). And for me, that kind of productivity looks like four pages in three days. Three good days. But it is happening, and it's coming out in good shape.

I just "sold" (for the currency of tons of exposure and a nice feather in my cap) a personal essay on stress to the Huffington Post, for their series on...stress! I'll link to it here and on my website when it comes out in a couple of weeks. That was one of those four pages in three days kind of essays.

I most likely sold (for the currency of a small handful of greenbacks) a different essay to a glossy magazine. (That one has been out there looking for a home for about a year -- and if they accept it, it may be another year before I am paid. Publishing is slooow, even if you have the good fortune to be able to work quickly.) The editor who would like to buy it is awaiting an A-Ok from the Grand Poobah of Glossy Magazine Publishing.

And then I will take Lars out to dinner with the proceeds.

I was also invited by the editor of one of the most prestigious literary journals in the country to please submit some more creative non-fiction, pronto, because he was very enthusiastic about the last one I submitted although he was not going to publish it. (Win some, lose some.) This is one of those "50 bucks and two free copies" kind of venues. At the rate I am going I'll earn a couple of dinners out a year, if I am lucky, but it's gratifying.

Oh, and I have one more little piece, also written over a long stretch of weeks, in the hands of an editor at The Paper of Record. Hoping to hear back on that one soon. Again, payment in exposure (as far as I know). And probably a long shot.

On the downside, stress is waxing larger than ever for all of us around here but I hope and believe it will subside soon.

But we are laughing, too, and having a little fun. Our Saskia has been whisked away by friends for a weekend in NH. Lars and I are thinking of fun things to do with Benjy on his home passes this long weekend, while tackling, finally, the grass jungle.

Shit happens, and less frequently (for us, anyway), lovely things happen.

So there it is.

***I do, however, have a German Luxury Husband, whom I've only seen leaf-encrusted once, when he decided to get up on the roof and clean out the gutters during a prodigious rainfall. So there, smug blond children. There.

Saturday, May 11, 2013

OK, This Will Make You Smile

Even if you are not American. Also, Neeme Jarvi wins the Cutest Conductor Ever award.

Meacham's "American Patrol," Detroit Symphony

Once again, courtesy of Dad. Enjoy!

Wednesday, May 8, 2013

My Newest Medical Specialty*** UPDATED

Remember, Readers, how I have become practically board-certified in all those medical specialties I've been forced to deal with for so many years (neurology, psychiatry, developmental pediatrics, and rheumatology)?

Well, I am learning even more about the world of autoimmune disease. (That's rheumatology for all you uninitiated lucky folks out there who don't know.) Remember Saskia's possible lupus, and all those tests (and costs!) and symptoms and office visits? Well it turns out she's not the only one. Because all the ways in which I have been sick since November (very unpleasant ways, I might add) turn out to be likely inflammatory processes, and my blood work so far points in that direction.

Of course, I diagnosed myself weeks ago. I have a bad habit of doing that, to myself and others (do you know how many people I have diagnosed with Asperger's??? it's not even funny) -- and sometimes I am quite right.

This time I know I am. The burden is on my new rheumatologist to prove me wrong. (Some pending blood tests will tell all, I suppose.)

I think I have Sjogren's Syndrome. If I don't then maybe I have lupus with secondary Sjogren's (yes, that can happen, evidently, and you KNOW it would be just like me to get them both). I'll let you know what I find out.

What is clear is that the enormous stress of caring for Benjy all these years has not been good for my health, and has probably exacerbated my recent symptoms. That is a hard truth for a mother to hear when she loves her child so hard it hurts, but recently I have heard it.

So lots is brewing here. Benjy is doing better in the hospital than he was at home, and I am resting as best I can (while managing twenty phone calls a day and several meetings a week, not to mention visits with my boy).***** Today Lars made me promise not to drive into Boston to see Ben, because yesterday I was unbelievably tired and sick when I got home, I believe due to a longish walk in the sun with a good friend. You are not supposed to do that if you have an autoimmune disease because it makes you sick -- I know, that sucks -- but I did it to gather data. It just made me more convinced in my self-diagnosis.


But here is the beauty of it all: Sjogren's or lupus, or lupus plus Sjogren's, are not cancer. They are not heart disease. They are not one of those dreaded prion diseases I keep warning you not to Google.

In other words, they are not going to kill me -- not in 2013. (I believe the writer Flannery O'Connor died of lupus but that was in the 1950s so I am not going to worry about it.)

I may have even more crap to deal with going forward but I WILL be here for my children and my Lars. For Benjy, who will need me most of all, and for as long as possible. My sister was not given that chance. Cancer killed her while her kids were still so little there was no way of knowing what kind of people they would be come, or what they would accomplish. She did not ever get to know what beautiful and sweet and awesome adults the three of them became. And I would imagine, while her memory lingers in them, they do not REALLY remember her well at all. They were only ten and seven when she died.

That is more terrible than anything. So, I can deal with any rheumatological shit that comes my way. My biggest challenge henceforth (as is has been for several years now) is making sure, as best I can, that Lars and I do not suffer that most awful of losses, as my parents did seventeen years ago.

I have GOT to keep Benjy safe. We're working on it, with the best team you could ever imagine.

***** Not anymore, baby. I am done. Those phone calls wiped me out so utterly I could not do anything but sleep the rest of the day. Yesterday was a nightmare. And today once again I will not be able to drive into Boston to visit my boy -- I can barely function. I will not be able to get myself to Cambridge tomorrow for a medical appointment. I will not be able to get Saskia to her concert at the Museum of Fine Arts tonight without help. Oh, boy. Sorry for the SOB STORY readers. Just feeling...confounded.

Monday, May 6, 2013

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.

Saturday, May 4, 2013

Thank You!

To all the friends -- the ones I know personally and the ones I don't -- who have reached out to me/us via email, Facebook, and this blog, thank you. I don't have the energy right now to respond individually to everyone, but please know I am deeply comforted by your gestures of kindness and empathy.

Every time I insist to myself that this world is filled with haters and miscreants, people like you prove me wrong. Thank you for that, too.

This would be such a lonely journey without you. Even with you, at times it is almost unbearable. I told Lars this morning, on a walk with the Hellacious member of this family, that I feel every day like I am playing a coerced game of Russian Roulette.

Because from one hour to the next I do not know if the gun is loaded.

I hate that metaphor, but still it seems apt. If things are stable at ten o'clock we might descend to hell at 10:50. And by 2:00 in the afternoon Benjy and I might be playing tennis, only to find ourselves drowning in anguish at 4. His is the anguish of an unquiet mind, a despair so profound and  resistant to help that it transforms him materially and psychically into a person we do not know -- a fevered, aching, anxious, seeking, sobbing, sometimes furious boy. A boy who wants more than anything on this earth to make his pain go away, however he can. Mine is the anguish of a mother forced to watch her child suffer, and know she is powerless to make him better.

If the best doctors and medical centers in Boston cannot help him, then god knows who can.

Today Lars and I felt only relief. We stayed close together and enjoyed the beautiful Boston sun. We laughed a little. We savored the quiet. Spent time with Saskia.

It's hard not to feel like a Bad Mother when you feel so good when your child has gone away. I am struggling mightily with that right now. I love him with the heat of a thousand suns but right now I need him not to be here. More to the point (as this is not about me -- not really) HE needs to not be here. He said it himself Thursday night to the crisis social worker: I am not doing well at home.

I told Benjy that day that I would never stop fighting, as long as I live, to get him the help he needs. I will not quit until he is better.

"I don't believe that I will ever get better," he said. "There is no hope."

"I know there is hope," I told him firmly. "And I am going to make it happen."

That a child not yet thirteen should have given up, on himself and on life, is horribly wrong. And so, so sad. But these days my faith in my own power to aid him, and in the powers of all of our mighty helpers,  is faltering. I hope it comes back full-strength really soon.

In the meantime we have the sun, our ornamental apple tree out front is blooming, we have some respite, and we have some time for each other, Lars and I. Time to simply BE together.

There will be no Russian Roulette here for a while.

Thursday, May 2, 2013

Here We Go Again

My sweet boy is going back in the hospital, most likely tonight. I heard a thing today that no parent should ever have to hear. I heard it once before when he was ten.

Please help me end my life.

There are no words to describe the pain of that. I heard other things, too, that tell me I cannot keep him safe. Not now. Even though his evening meds have taken the edge off his despair he is not fooled, and neither am I. We know it will come back.

Lars cannot bear the thought of this. Can't we just try to make it better here? he said. I'll play tennis with him. We'll play Frisbee. We can hide the knives where he'll never think to look.

Lars forgets that someone around here has to earn money so we can eat, and that it's not going to be me. So tennis and Frisbee with Dad are not a sure thing. (And somehow I don't think that's the answer. I don't really think Lars believes it either, but desperation will do that to you.)

This will be Benjy's third hospitalization since October. The hat trick. It will be the fifth in all. And he is not yet thirteen.

Please, please, please let it be the last this year.

Wednesday, May 1, 2013

"There Be Mental Illness Here"

I was invited to write a blog post about writing and disability for the awesome literary Journal The Missouri Review. How wonderful!!

You can read it right here.