This is The Face of Evil

Don't let his goofy pose fool you. He's armed and dangerous.

Pensive? Self-controlled? I think not.

 

Do NOT look him in the eye or he will eat your brain. Just because he wears spectacles doesn't mean he's an intellectual.

 

I think these pictures speak for themselves: We're all in trouble. You can read about some of this hound's malfeasance in the October issue of O, The Oprah Magazine. After you do, go hug a toddler or a bunny.  Or pour yourself a stiff drink -- you'll need it,

"Falsies" has Arrived!

Only it has another name. ("Breasts are not a Requirement." I kinda liked "Falsies" better, but I can see that's more of a lit journal title than a glossy mag one.) It's hot off the press in the October issue of O, the Oprah Magazine. I am so grateful to be in such good company!

I'm featured on the Contributors page as well as somewhere in the middle of the magazine (the essay itself). Check it out!

Someday, when I am able to complete my essay collection, a longer version of this essay will be available. Readers, you'll be the first to know when the day comes!

Gone Like a Dream

The title of this post is taken from a letter Charlotte Bronte wrote to her dear friend Ellen Nussey, just after her sister, Emily Bronte, died of consumption (i.e. tuberculosis). "A sister, gone like a dream..."

That is such a sad thought, and a beautiful thought at the same time, although I'd imagine the reality of death is not often beautiful.

It was not beautiful the one time I watched it unfold, nor was or is it poetic when I am trying desperately to prevent it from claiming my child.

I too had a sister, gone like a dream. But it's Benjy who takes me back to that tiny cursive sob, penned on paper now yellow and brittle, around 170 years ago in Yorkshire. I held that very paper in my hands once, and took in Charlotte's controlled anguish. I tried not to drop my tears on it because it was fragile and terribly important and I did not wish to spoil it.**

It feels right and it feels wrong that I think of Charlotte Bronte and her bereavement -- an entire family, and a large one, dead before she hit middle age, and she herself buried beside them so that the father, Patrick Bronte, was the last one standing -- when I pine for Benjy.

In a letter to Ellen -- it might or might not be that same one, my memory fails me -- there speak three small but chilling words: Emily is dead.

My god, that is heart-breaking.

Benjy is not dead, just away. But he is a son gone like a dream.

It has been almost ten weeks. We speak most nights. Have visited him there, three times. And yet, his absence keeps surprising me, because he is in many ways so present.

I expect to hear his footfalls on the stairs, and then I am disappointed. It is only Saskia's, or Lars's steps I hear. It's not that I don't want to hear that they are with me, my beloved two. It's just that -- well, that one right angle of the square that is our family has disappeared, and the equation I had learned to understand no longer computes.

That's just a pretentious way of explaining that the old life seems like a fleeting dream. I can be pretentious sometimes.

BUT. I need to let you know that my boy flitted in and flitted out this weekend, his first visit home since starting the new school, and for a precious twenty-four hours our family was whole again.

Here for a wonderful 24 hours. Gone again, like a dream.

Mostly it was great. We had some rough spots. Some tears. We also had lots of sporty stuff going on -- tennis, biking, football tossing (Lars's domain, not mine).

But look, here's the best thing of all. We have renewed hope. When there is more time and less on my plate I will post a bulleted list of all the things Ben can now do -- things that many parents of young teens take for granted, but not us. He is as smart as a whip and completely impaired at the same time. An odd thing, but there it is.

Thanks to this new life he is leading, the impairments are very slowly diminishing. The smarts are still there, and with less anxiety and depression to hold them back, and many new life skills gained, I think some good things lay in store for my boy.

Happy, happy me!

** I have a short-short essay about the day I held that letter of Bronte's in my hands and tried not to cry all over it, coming out soon (I hope). Stay tuned.

Know What I Did Today?

I smacked down Mr. Blake Irving, CEO of the domain hosting company that makes www.deborahvlock.com possible. In the nicest of ways, because that's what I do.

Blake was soliciting feedback on his company's awesome new site design. Because, ya know, he CARES what his customers think. He knows we're courageous, and smart, and out to change the world, and he respects that.

I might sound snarky, but I believe he means it, more or less.

BUT... well, here's what I wrote. I think it speaks for itself:

Dear Mr. Irving:

 

Thanks for your email and the opportunity to comment on the new GoDaddy site design. It's both visually pleasing and user-friendly, so thanks!

 

Since you are soliciting feedback, I thought I would let you know that your commercials -- I believe during the last superbowl (but I could be mistaken) -- were so incredibly offensive to me, as an educated woman, that I almost went to another provider. (It was only my too-full schedule that kept me on board with GoDaddy.)

 

I hope you will consider the dignity of ALL of your users next time your advertising team is working on high-profile commercials. Overtly sexualized (and dumbed-down) images of women are a turn-off for more than half the population -- and I'm willing to bet a big percentage of your paying customers.

 

Anyway, I really do appreciate being given the chance to weigh in. I like what you've done with your site and your openness to dialogue. I hope to be able to continue indefinitely as a GoDaddy customer.

 

Sincerely,

 

Deborah Vlock

 

 

I.O.U. Redeemed. Hound Not Redeemed Yet, But He's Working On It.

Peoples? That happy post I promised you?

He's right here.

So comfortable he's almost comatose. Fluffier than a kitten named Fluffy.

Don't worry -- the blurriness is my crappy iPhone, not your middle-aged eyes.

You smiling now? :)))

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?

A Little Regret Creeps In

Only because in my sense of injury and feelings of outrage, I wrote a piece that might sound callous towards children with progressive illnesses not of the psychiatric variety.

Please do not think that I am. My sister died of cancer. Several friends did, too. They were not children but they were far, far too young.

My heart goes out to anyone who suffers from a life-threatening illness of any sort. Hey, I even feel sadness for those of us dealing with chronic illnesses. They can suck, too. I speak from unfortunate experience.

So, please forgive me if that last post came out the wrong way.

Just another reason not to pick up pen or keyboard until properly cooled off.

Well, Eff You Too, Famous Charity for Sick Chidren

OK, I should probably never wield a pen (or keyboard) while pissed off. It usually results in something I deeply regret an hour later.

This one I don't think I'm going to regret.

A couple of days ago I read in our local paper about a girl who suffers from a disorder that causes cognitive disabilities. There was no indication that this disorder is progressive or life-threatening but it may be. I have to dig out the article and do some research.

In any case, this child and her family have no doubt suffered quite a bit from living with this disability, and I was thrilled to read that she received a very lovely and generous gift from a charity I will not name here, but whose mission is to comfort children with progressive or life-threatening illnesses.

All good. I felt great reading about that. And then I had a thought: what if this charity we all know about and admire does not simply help children with cancer or other medical diseases that offer very poor prognoses?

What if, through all these years that Benjy has been suffering, his small shoulders bowed under the weight of a sadness so vast I doubt it will be sustainable over a lifetime, we could have appealed to this good charity for something that might have eased his burden just a little and made him smile?

Like that trip to Disney World most of his classmates seemed to have made multiple times? I always had to tell him no, and while it was mostly about money, it was also about Ben's inability to do some of the things that come so naturally to "typical" children. How on earth would he survive the trip and the crowds and the noise and the stares of other children?

There was no way we could make it happen. So again and again I grasped for a way to say it that would not hurt. "I'm sorry, Ben. We can't do it this year. Maybe another year."

I could not keep this horrible thought at bay: Maybe when you are grown up, or pleasegodno, no longer with us.

Anyway, even though Ben is living at his school now, and doing better, my interest was piqued. (Besides, I wasn't born yesterday. I know "better" is usually followed by "helluvalot worse.") I went on the website of this vaunted charity and read up. Turns out your kid does not have to be at death's door to qualify. In fact, many of their recipients go on to live full lives. They just have to have a diagnosis that COULD result in death.

Ha!

So I wrote a little query to our Massachusetts chapter:

Good evening!

I am wondering whether a child with severe psychiatric disorders (including suicidality) and a history of frequent psych hospitalizations would ever be considered eligible for [your program]? I did not notice anything on your website that addresses the issue of mental illness.

Thank you so much for whatever information you can give me -- and of course for all the wonderful work you do.

Best wishes,

Deborah Vlock

 

Here's what I heard this morning in return:

Good Afternoon Ms. Vlock,

Thank you for contacting us regarding a child with mental illness.  I am not sure if you are familiar with the mission of Charity X.  We [are concerned with] children between the ages of 2 ½ and 18 with life-threatening medical conditions, that are progressive, degenerative, or malignant.  I am sorry to share that we cannot help you and your family at this time.  If you have any questions, please feel free to contact me...

 

 OK, great. Awesome. Will you bear with me, Readers, while I exercise my super-duper lit crit skills and parse this response just a little?

 

The part I'm interested in is the part I bolded -- especially the words "life-threatening," "progressive," "degenerative," and "malignant." Apart from the fact that "progressive" and "degenerative" are pretty much redundant (yes, I can be a language bitch if I choose to), all four of those descriptors -- or at least the first three, and I would make a semantic if not medical case for "malignant, because Holy Cow is this crap malignant -- can and often do apply equally to such conditions as bi-polar disorder, schizophrenia, major depressive disorder, and any other mental illness that induces suicidal impulses in a child.

 

Let me inform you, Kind Representative of Vaunted Charity, that a child who has a long history of wanting to die, who repeatedly hurts him- or herself, who is on a revolving door into the hospital, has a progressive, degenerative, and life-threatening illness --  except for the lucky ones whose symptoms can be controlled or at least maintained through medication and therapy.

 

What I would like to ask this well-meaning, but perhaps not so well-educated person, is this:

 

Why is the misery caused by progressive cancer more worthy of your organization's attention than the misery caused by illness that originates in the brain? And does the non-eligibility of illness that originates in the brain take brain cancer out of the running? Or do you just discriminate against brain diseases that are nebulous and confounding to patients and doctors alike, and whose prognoses are harder to quantify. Illnesses that are not treated with surgery, radiation or chemotherapy, but treated with medications and hospitalizations that may help and may not, and which can wreak no less havoc with a child's body and spirit than chemotherapy drugs?

 

There is a problem here. It's that people do not understand mental illness as a real illness. And that has GOT to change.

 

Or else, people believe that every boy or girl (but especially boy) with a psychiatric disorder is going to shoot up a school or a movie theater.

 

Let me assure you, this is far from the truth. The vast majority of people who suffer from mental illness will hurt themselves before they hurt anyone else. My boy would not hurt the smallest insect, but he has injured himself many times. And many times he has wished he could summon the courage and the resources to end his life altogether. He has even begged me to help him do it.

 

So, I had this fleeting joy at the thought that there is a charity out there that wants to help kids at risk of dying. Just in case this new school does not work out and Benjy's misery returns to the old endless capacity.

 

How wonderful, that fleeting hope -- that maybe something could be done to bring him some pleasure in his darkest days.

 

Boy, what a let-down.

 

I think it's time to get active. I'm going to arm myself with statistics and get back to these folks. Not just for Benjy, but for all the children in this country whose illnesses are routinely stigmatized and brushed off. Whose suffering is compared negatively to the suffering of those with "medical illnesses" -- and really, I MUST take exception to that distinction, as psychiatric illnesses are very often due to malfunctioning brain chemistry.

 

So I'm going to get back to them, and if they blow me off I'm going to really get mad.

 

And then, they'd better watch out. I've been seeking a purpose since Benjy left us and my own medical issues have been keeping me down. Maybe this is it.

 

I'll let you know if I need your voices, and you can let me know if you're in. I know you will be, Readers.... you've been "in" since you started reading this blog -- and for that I love you.

 

#forBenjy  #forALLthekidswhoneedhelp

 

 

 

 

And the Party's Back On...For Now

Okay, for the umpteenth time I have written a post that turns out to be untrue.

It's not that I'm a liar. Or being "writerly" and making stuff up. It's just that my boy changes moods like a teenage girl changes clothes: frequently, and often for no discernible reason.

Hey -- is that why they call it a "mood disorder"?? Huh. Who knew? ;)

So I either need to wait a day before posting doom-and-gloom status updates, or I need to qualify them with "wait a day or two and things will be better."

The day after the episodes I described in my last post, Benjy was happy and even CHATTY on the phone. (All you readers who are parents of teenage boys will understand why I put "chatty" in caps.) And he continues to do well, as far as we can tell.

We miss him so much, even though our house is noticeably less stressful now that he is not in it. Doesn't that sound awful? Man, it sure feels awful when I say it. It makes me feel like a horrible mother -- callous and self-serving.

I am not either of those things, which is why the feelings bouncing around inside of me are so damned confusing.

How can you love a child as much as I do mine and feel better when your home is no longer his? This might make sense if he'd gone off to college at 18. But he's 13, a young 13. And one day we just let him go.

But that sounds all wrong. It IS wrong. We helped him go to a place where he has half a chance for happiness and success. And you know what? It seems to be working, apart from a relatively few moments of sadness on his part.

We had our eagerly anticipated bi-weekly visit with him on Saturday. Apart from a panic attack in the car halfway through (Ben, not me) it was wonderful. Just wonderful. He has grown in so many ways, I cannot believe it.

But Lars and I have to deal with his absence and it is harder even than we thought it would be. Last night we had a rare evening out, just the two of us. Oh, it was lovely. We felt young and happy. The last time we'd been at that restaurant Saskia was a very new baby and we thought I might get a job offer from Columbia University. (We were obviously mistaken.) We dreamed and planned and thought we might live in the Manhattan neighborhood my family settled in when they fled Germany in the 1930s. Washington Heights. We thought we might be able to afford it there, and besides, there is a wonderful, beautiful park overlooking the Hudson at the end of my Grandmother's street, Fort Washington Ave, and I always loved that place as I was growing up.

The dinner was great, but sadness crept in and we had to force it back out. We just plain miss our boy.

Funny how plans get derailed. The Scottish poet Robert Burns said it best:

The best-laid schemes o' mice an' men
Gang aft agley,
An' lea'e us nought but grief an' pain,
For promis'd joy!

I love that to Burns, a little field mouse was worth a poem. (Then again, he also wrote a poem about a louse he observed on a lady's hat at church. So you know...) I think there's a lesson in there somewhere, something about the value of those small things we tend to think are unworthy of notice.

I think there is a lesson to me in that, for sure, as I try to figure out my life going forward.

Readers, I think I will be blogging more about me in the near- to mid-future. I won't forget Benjy, no fear, but my own path has taken yet another unexpected turn. It's called fibromyalgia. I've mentioned it more than once before, and I am trying to master it. If I can't do that, then I will have to learn to live with it on mutually congenial terms. I am trying to figure out a path to physical and emotional wellness.

Anyway, here is a little parting gift, a  memento from our visit with Ben on Saturday:

I only put this in because you can't see his face. I love the colors in this photo. It was really like that -- a clear, bright, vivid day. The red building is Benjy's house. I think what I captured here was a pause in his Frisbee toss with Lars. A few minutes later he walked back to his friends and we were on our way. If we have to leave him behind I am glad it's in such a beautiful place.

Ben, I know you won't read this but my heart is so full of love for you it seems to take up all the space in my chest. Be well, my darling boy. Be happy. You are so loved. xo Mom.

And the Party's Over

Oh, I should have known it was too good to last. Even though the director of the school told us about that month-long "honeymoon" period, in which students love everything about their new lives, followed by a big dose of end-of--vacation blues, I thought we were in the clear.

I thought I could start worrying about myself, taking care of my own, increasingly significant needs. I thought I could try to relax. To sleep more and better. To exercise (as much as I could swallow -- unfortunately, exercise and I do not get along very well). I thought Benjy was all settled, with friends and activities and good food in his beautiful green-meadow-and-dry-stone-wall corner of New England.

I guess I thought wrong, once again.

The sad phone calls have returned. We'd only had two of those at the very beginning of his stay. Three at most. But they're back.

Fuck.

They always start out OK. With a forced optimism that makes me think (fool that I am!) that this time I've dodged the bullet. That he really is happy.

Benjy: Hi Mom!

Me: Hi Ben! How ARE you?

Ben (slightly flat in affect, but that is his usual mode): I'm good.

Me (all bouncy): What did you do today?

Ben: Uh, I played Mumbleply.

Me: I'm sorry, could you repeat that?

Ben: I played Monopoly. And mumblemumble with credit cards and you can mumble stuff.

(Benjy has developed a habit of rushed, slurred, and mumbled speech. I guess it's from all those pills he knocks back every day.)

Me: Wow, that sounds like FUN! A new version of Monopoly with credit cards? And did you play with your FRIENDS in your house?

Ben: Uh, I guess. Oh, and I have earned $20 in allowance. Tonight when we went to the store I spent half on a card game.

Me: Awesome! Good work! And you can play it with your FRIENDS?

Ben: Uh, yeah. Whatever.

Readers, I think you know where this is going.

Me: So, what else, Honey?

Ben (in a lowered voice): Look, can I just tell you something?

Me (heart sinking): Sure!

Ben: This place is not for me. I miss you,. I want to come home. No one will be friends with me here.

Me: Honey, I heard you've made a great connection with C.

Ben: C is leaving end of August. I want to be a day student. Can't you help me? Can't you get me out of here? I will go as a day student. I just miss you and want to be home.

And then, Readers, the tears fell. His tears and mine, although mine were, and must always be, secret. As hard as it is, I have to be strong.

I told Benjy that he cannot be a day student at a school that's an hour and a half from home. It just will not work. Of course he did not believe me. I am so afraid he thinks we don't want him with us. That we've thrown him away. Oh god, that thought is killing me.

I tried my best to remind him of his sadness and loneliness at home. Of how little there is to do, and how our lack of expendable income rules out most of the little there is. (Benjy is not a fan of free stuff, like strolls along the river, unless he can bring his fishing pole. But I don't feel qualified to supervise fishing.)

I tried to remind him about the revolving door into the hospital, how that is no life for a boy of 13.

It didn't work. He tried so hard not to cry but I suppose in the relative privacy of the porch of his house, with my familiar voice in his ear, he let himself go. It's what happens now.

I asked him to get the house mother on the phone. He said no at first, because he thought he would get in trouble for having a negative conversation. I promised him that would not happen.

"This was not negative," I told him. "You are feeling sad, and you shared your feelings. That is OK, and I will tell her so."

So he fetched the house mother and we talked about Ben. He is having trouble connecting with the other kids -- especially on weekends, because on weekends his house closes up and he goes to stay in another house, where the kids are less familiar and older.

This is one of the few things I don't like about the school. Most other kids in his house have been there long enough to have earned home privileges every other weekend. So with only one or two kids around, they close up Ben's house every weekend and consolidate with another. This would be hard for any kid, but for a kid with Aspergian social skills?

Argh!!

I can see I need to get to work on this. The next thing I do this morning will be to compose an email to Ben's therapist. Someone has to help him figure out this weekend stuff, fast. I don't know how many more sad phone calls I can take. And as I am trying to climb my way out of this well of pain and fatigue I now dwell in, I need to try to fix this fast. Because each time he asks me for help and I have to say no, I get a little sicker.

Today, at least, he's going to the beach. Sea-gods (or lake-gods, more likely), be kind to my boy! Let him have some joy and some fun. And maybe, if he does not find a friend today, he'll find some cool fish or crabs to observe. Ben has always loved poking around for those little constituents of the shallow waters.

A Room of His Own

We saw him. For two-and-a-half beautiful hours. I was so frightened of what might come of it, I shivered halfway to Connecticut.

The drive took forever. We sat for an hour around Worcester, trying to crawl our way out of Massachusetts.  I dug in my purse for Ativan, but came up empty. The reason being, I am on a new med to combat my fibromyalgia symptoms -- severe pain all over the place, fatigue, and sleeplessness are the most confounding of the lot -- and I have no idea whether my as-needed anxiety drugs will kill me if taken jointly with Elavil.

So I removed the temptation before we left home.

We arrived half an hour late. Benjy was waiting for us in his therapist's office. His back was to the door, his head bent over some object he was fiddling with.

"Ben?" I said tentatively.

"Mom?" he said shyly.

"Can you stand up so I can hug you?"

He did, smiling. And for ten or twelve seconds I had the feel of his warm body, the itch of his wiry hair against my cheek, all to myself.

For those ten or twelve seconds he was mine.

Saskia and Lars hugged him too. We remarked upon his incredible good looks: he has lost most of the weight put on by his cocktail of medications. He is fit and tan. He still looks dazed, but that is what Abilify plus Lexapro plus Tenex will do to a person.

He is also very much alive. That is the other thing Abilify plus Lexapro plus Tenex can do.

We sat and talked with the therapist for half an hour, and then Ben and Saskia and Lars played some Frisbee. There was one close call -- a moment of frustration and self-loathing on Benjy's part when he did not perform at Frisbee the way he'd hoped to, in front of his family -- but I figured lunch would avert the storm, and it did. When Ben needs to refuel he needs to refuel.

We went to the pizza joint down the street and ate al fresco. It was lovely, being there all four of us together. Benjy seemed quiet, but content to just be in the moment. There was no restless seeking, no yearning for the Wide World to be his own, to fill the aching void inside him.

I'm not sure that void exists anymore.

I said to him, "I think this was a good choice we made for you, don't you?"

And he nodded and smiled and said, "Yes."

We asked him what he would do when we had to leave, and he said, "Just relax."

I asked him what that meant, and he said,  "You know, just hang out with my friends."

My friends. I am almost weeping even now, two days later, when I think of that. so little to ask for. Saskia does that all the time. Hangs with her friends. Lars and I do, too.

Benjy never really had that, and now he does. He seemed emotionally flat the other day, but also content. Quiet but comfortable with his new life. As Lars reminds me,  flat and quiet are Ben's baseline. Comfortable and content are not.

Readers, this is something to rejoice. When I held him again for another twelve seconds, laid my cheek against his curly head and told him I loved him and would miss him, I felt his absence like a gaping wound in my chest. Right where I suppose my heart beats.

He is in some ways already gone, even though we will see him again in two weeks, and for more hours. He has found his place, a home that works for him. It is not the same home the rest of us inhabit.

I am trying only to be glad about that, to think of my boy and not myself. This is my crowning achievement.

Think about it: my crowning achievement as Ben's mother has been to find him another home. Writing that just now nearly killed me. It defies logic. It is not supposed to be the way of things. Not at all. Not in families like ours.

That is our heartbreaking truth. If our child is to be okay, to live and live an independent and productive life, he must move henceforth on a trajectory away from here. From us. Most every child does that, but not so often at 13.

Yet, mental illness defies the "normal" way of things. There is nothing to understand about unquiet minds, not really. Not in the same way that numbers or landmasses can be calculated and mapped and darkness can be penetrated by light. You can only learn how to tiptoe softly around the landmines, locate the best and most reliable paths and then cross your fingers -- because invariably, from time to time, you will tread in the wrong place.

As sad as I feel about it, I think we have trod in the right place this time. Ben's new home is working for him in ways you would not believe. He is doing things we never dreamed he would -- and in one short month. I'll write more about these wonderful accomplishments soon -- small steps toward a state of functionality in this World we all have to function in if we possibly can.

All in all it was a wonderful visit, except it left me with a horrible migraine -- probably the result of my own emotional turmoil.

I am trying so hard not to blame myself that it has come to this. And to overcome the physical and emotional dysfunctions that eleven years of living on high alert have wrought in me.

I am trying to be happy for Ben, that finally he has found his place on this earth, that he is happy and successful, and that he is able to be those things without me by his side.

And I am trying to quell the fires in my head. Migraines suck. This is my first one, and it's a doozy. Saskia knows all about them, and she's given me some pointers. Tonight we will be with my brother and sister-in-law and their family, which I think will be healing in itself.

Count Down

In two short days I will see my boy. My young man. Less than 48 hours.

Oh, I can barely wait.

I will report back on the visit. We only get three hours total, which won't nearly be enough. But at least I'll get to feel his hugs and see his green eyes and listen to him tell us about his new life. I bet I will even  see some smiles.

I feel like I did when I was a little girl waiting for something special to happen, and the wait was unbearable.

A New Diagnosis for Me

"No, really," I told the Universe. "It's OK. I have more than my share already."

But the Universe can be heartless. It silently, and without apology, handed me another one.

It's called fibromyalgia. It sucks. But it explains almost all of my symptoms since the winter: pain everywhere, enormous fatigue, GI stuff, revved-up anxiety, and depression. I had a brief reprieve -- maybe two months -- and now the symptoms are back with furious intensity.

This fibromyalgia is most likely the result of persistent and prodigious stress over the many years of trying to keep my child safe from his own self-injurious impulses. Of trying to keep him alive and happy (the latter quite unsuccessfully) and never knowing from one hour to the next when or where the next bomb was going to strike.

Man, that is one hard job. I kind of feel like I've earned a ginormous salary but someone forgot to cut my checks. At least, when I let myself think about it, which is not often because it is too damned depressing.

So I have to figure out how to manage these symptoms AND live this new life that is not bounded on all sides by disability and crisis. (Although I guess it is -- my own and not Benjy's.) I started a medication last night because there is only so much sleep you can do without until you start obsessing about Fatal Familial Insomnia (remember that? Yes, I am obsessed with it and have written about my obsession in the past. That has got to be one of the worst ways to go. I'll spare you the agony of a link to a site about it. You're welcome. ;)

Pain all over = no sleep. So I started this new med and of course I feel like crap today -- completely drugged up and still in pain. Because meds and I apparently DO NOT MIX. Kind of like Vicodin and Vodka.

Awesome.

I find it all very confusing. So off I go into the world of medical research once again. I'll let you know when I figure this stuff out. I think I will, if I can muster the energy to put in some effort.

If anyone out there has any ideas, let me know!

Seven Endless Days

 That's how long till we see Benjy. It will have been a month. That's about three weeks longer than we have ever been completely apart, and I think that one other week was before it all went downhill. (I'm guessing a trip to Germany when the kids were really little -- just Lars and I went, and they stayed with my folks.)

Readers, I cannot wait.

I had this sensory experience of him the other day, while sitting in my therapist's chair and trying to listen to that part of me which is so sad, to hear what it had to tell me. I felt him as though my arms were around him and my cheek was laid on his curly head. I felt the roughness of his hair and the substantial warmth of his body.

He was turned away from me, but the part of me that is sad allowed him to turn to face me, and to return my embrace. My god, that felt good.

I miss the physical sense of his presence, and I miss his footfalls upstairs, when I am just beneath him, and his beautiful green eyes. I miss his rushed, slurred speech, which I guess is a side-effect of one of his meds -- although I get to hear it every might when  he calls me. I wait for those calls like you would not believe.

He sounds so good on the phone, as if they switched him out with some other kid who is happy, and also a very good mimic.

But I think it's really Benjy who's happy. I am so thankful for that.

And I'm getting lots of time with Saskia, which is a gift. The pleasure of just sitting on the couch and watching something dumb on TV together! (And the bizarre experience of having to ask her about something we heard on Family Guy, and having her say, "Uh, Google it." And then, hastily: "No, don't!" Oy.)

Last night we watched this:

So. Much. Fun. Even Saskia loved it, after a few minutes of grumbling and fiddling with her phone. (She's convinced nothing good came out of the 80's except her cousins. I could not even wheedle her into conceding that Jessica Lange's outfit at the end of the movie was kinda cute. Then again, Saskia is not easily wheedled into anything. She was born highly opinionated.)

In publishing news: you will be able to read something mostly funny -- yes, funny! -- by me in the fairly near future. Two things, actually -- the first in O Magazine, in October; the second in More -- but who knows when? Publishing is a sloooow business. I'll let you know when I know.

So yes, I do depart from the usual pathos every so often. Long-time readers of this blog have actual proof of this. I remember writing a few funny posts in the distant past, when life seemed to hold more humor inside it.

Anyway, it's really too gray outside to write anything else. Or else, too gray inside me?

More soon, Dear Readers. And remember:

Walking in My Son's Shoes*

I think I know now, at least in part, what it feels like to be Benjy. How hard it is to catch your breath when you are panicking. The tightness in your throat and chest that makes you feel you might die. The wish that you could just curl up on your bed all day, coupled with a pretty sure idea that if you do so you will be just as miserable as you will if you go out and try to live your life.

Oh man, that feeling just sucks.

It's called fear, I guess, and it has all these physical parts to it that you would never guess if you have never had an anxiety or panic disorder.

I've had anxiety my whole adult life. I got it from my mother, and she got it from hers. And Benjy makes four of us. At LEAST.

But never like this. Like my boy has it. Never the kind of thing that makes you feel you've swallowed a bee and are going to asphyxiate because it stung your throat. Never the fear that makes your heart work so hard you think it might break with a mighty crash.

Oh, no. Not until I had the leisure to be panicked. To stop long enough to be anxious for more than a little.

I do not like this way of being at all. Most of all because it makes me so sad for my child. I guess it's the difference between sympathy and empathy, which is not simply a semantic one. I always felt compassion toward him. I always will. And there will always be parts of him, of his experience in the world, I can merely sympathize with.

But now I have palpable evidence of his suffering. I have felt it, too. And what kills me is that, if I had felt it four years ago instead of now I would have hurled a lighting bolt at the metaphorical feet of our school district and stopped the madness in its tracks. The madness of trying yet another service, another program, another school, that Just Wasn't Going to Work.

I would have found the place he's at now and I would not have rested until I'd gotten him there.

I know, talk is cheap. But I would have been there fighting, red in tooth and claw. And maybe he would have suffered less.

But he is where he needs to be now, and for that I am so grateful. He sounded so GOOD again last night! I hope this does not end.

And now it's time for me to start taking my tiny steps, panic or no. I've made a resolution: I must leave my house every day and DO something. Coffee with one of my wonderful friends or my brother or sister-in-law (or both). In a couple of weeks I hope I can go farther afield. I have a great therapist who will help me, I know.

The best therapy of all has been the responses I often get, even from total strangers, to my writing. Oh, wow. Talk about heart-lifting! Whether it's blog readers or readers of my published stuff, so many people CARE. I can't believe it.

And whether they're compelled by sympathy or empathy (both wonderful impulses), they feel the urge to let me know.

My god, what a gift, to me and my family. That's what's going to break the panic, I think. Just knowing that there's so much goodness out there in the world, and that people all over the place are rooting for us.

Sometimes I feel like the unluckiest person in the world. (Of COURSE I know that's not true, but emotion is not rational or it would be called rationality. ;)

But when I think about the community that has gathered round me, in person and in the ether, I feel like the luckiest person in the world. I am working on reconciling those polar feelings -- but really, logic is overrated. Sometimes it's better not to search for meaning in irrational things.

* Holy crap, I wrote this entire post without making a single typo. This marks a new high in my life as a Tourettic blogger. (Unless Blogger's spell checker is broken, because I notice it did not flag the word "Tourettic.") What's next? Sitting down for twenty minutes without having to straighten a picture or re-arrange the rug tassels? I can only hope. ;)

Benjy Update. And Me Update.

He has been at his new school for almost two weeks. Most evenings we talk. If we do not it's usually because he's busy and he's OK. I am beginning to learn the art of walking past his empty room and not catching my breath.

All these gasps, as if he just disappeared from where I was expecting him to be.

This school is a beautiful place. The staff there are beyond belief. Two cats named Clyde and Cleo live at the farm on the premises. Not to mention horses, sheep, chickens, and a little bunny with a sad laboratory history who has found his safe, forever home.

Yesterday, Benjy got to feed and water the chickens. For some reason that lies completely beyond my imaginative ken, he really likes chickens.

Yesterday there was no visit to the sheep, but that was OK. It is very likely there was a horse-kiss or two, though. Benjy is learning the pleasure of horse-kisses, which are one of the greatest things a person can experience in this world. This may be true of the next world too, if one exists. In case one does, I sincerely hope there are horses there.

The school part of school is fine at this beautiful place. Those are more or less Benjy's words. I do not believe I have heard the words "school" and "fine" is succession in quite some time. It helps that there are two bunnies in his classroom (well, one in, one just outside, because, as I have mentioned before, if the two bunnies consorted with each other there would soon be six or eight or ten of them, which might be a distraction). Bunny-time is a given. I would imagine holding a bunny to your heart when your heart hurts is akin to holding a cat there (but without the humming motor). A glorious comfort.

We will see Ben in a little more than two weeks. He is marking the days off on the Lolcats calendar I sent him. It took a lot of looking to find a 2013 Lolcats calendar, let me tell you, and when I did it was 75% off.

Double score!
I am also counting the days. We all are. And in the meantime I am focusing on the rest of us -- and most importantly, on me. That is a novelty. But man, do I need it.

You thought I was sane, didn't you? It turns out I am most definitely not. My logic is intact, don't get me wrong. I live in the same world you do, more or less (no people or places only I can see). But suddenly there are no daily fires to put out. There is beginning to be regularity in my life. I can make and keep appointments. I am not living with the constant fear of crisis.

And I have no idea what to do with myself. With the quietude. With my own grief, my sense of loss. This new expansiveness scares me. Literally.

I have to relearn how to be a "normal" adult, living a "normal" life. (I know, there's no such thing. But there may be degrees of normalcy. Of "proper adjustment." I have forgotten all about that zone, and how you live in it.)

Now that I'm not fueled by fear and adrenaline (hey, that adrenaline is some major stuff) I can look into what else is inside me. What I see in there is a whole lot of broken stuff.

So now comes the fixing. I have good people on my side, too many to list here with hands not so co-operative this morning. I know will get there.

I wonder if a bunny would help?

"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.

One Foot in Front of the Other

It feels like a thousand years have passed since I last blogged. I feel like a different person, living in a new house. A new life. Even though I'm sitting here on my usual butterscotch-colored couch, in front of my same old noisy air-conditioner, and my back is achy in the same way it usually is when I first get out of bed.

I am me, and I am here, and Lars is sleeping with the covers off him upstairs in our bed like always, but everything is different now.

I am trying to figure out how to put one foot in front of the other and move forward now that the person whose care has been the primary focus of my life for twelve years (give or take) no longer lives with us.

And it is damn near killing me.

Talk about mood lability? God knows I've talked about it, here on this blog and to doctors and  therapists and family and friends, for years. I have it now. Happy. Crying. Dully silent. Talking so damned much my friends and family cannot stand to be with me.

My heart is ripped in half, that is the problem.

We left Benjy at his new school on Wednesday. It is one and a half hours away from home. I guess it IS home now. His, anyway. He was FINE with all this, because it is a place with lots of kids like him, and lots of animals for him to love and care for (and do it right): a farm with sheep and horses (which he can ride if he can muster up the courage to do so) and chickens and cats. A family of foxes live near the barn, and when Lars and I visited we saw a couple of fox kits wrestling in the riding ring.

"What ARE those animals?" I asked, squinting at them as we pulled up to the barn with our very nice tour guide. He informed us that they were the younger members of the school fox constituency. Lars said, "Benjy will want to hold them." And we all laughed.

The day we dropped him off we had lunch with my best friend, who lives not far from the school, and I felt elated. I could see my life opening up before my very eyes. We talked about ME, and what I might begin to do for myself now. It was extraordinary, and in two hours I only thought about Benjy once or twice because he had done so well when we left him, and I knew he was at an amazing place. He'd gone in the pool with a few kids and played some sort of water basketball, and  he'd make lunch plans with another boy, and as we drove to our friend's house I was weepy with joy.

In Benjy's classroom, along with a lovely teacher and assistant teacher (who also happens to be the farm manager and who advocated for Ben to be in that classroom because she recognized him as a kindred animal-loving spirit) live two rabbits. Well, technically one of them lives just outside the classroom, because, as Ben informed us, that one is a male, and the inside one is female, and letting them live together would not make a lot of sense.

How that made me smile!

I asked him on Thursday when we talked briefly around eight p.m. whether he'd been able to hold the rabbits during school and he said yes, he had. That made me smile, too.

 I haven't smiled so much since.

Thursday was the last time I talked to him. Every night since Wednesday I have called. Wednesday's and Thursday's conversations have been difficult for us both. I hear from his housing staff and his therapist that he is doing quite well during the day. Playing LOTS of outdoor sports, swimming in the pool multiple times a day. I know he's been to the barn once or twice. But at nighttime there is less to do, and homesickness sets in.

After our first call I thought I was going to die. He cried, and said so softly we could barely hear him (I guess he did not want anyone around him to hear), "I can't do this, Mom. I want to be home. I miss you,"

I tried to keep my voice upbeat and bright.

"Sure you can!" I said, feeling like a miserable felon. "You've done FAR harder than this! And remember how sad and lonely you've been at home. We could never give you what you have at your new school." But he continued to cry quietly and I had to hand the phone to Lars.

What could I do but take a Klonopin, my new tranquilizer of choice, and go to bed? But as is my new normal, I didn't sleep very well.

Last night it took a while for me to reach someone in his house (they live in houses there, not dorms). I always speak with the house manager first, which is good because I get all the details I need. Benjy is allowed to call us, too -- we had to provide him with a calling card for the purpose -- but so far he has not. So last night I called and called, and when the staff on duty finally answered -- these folks are ALL so amazing, I cannot tell you -- he told me Benjy was tired had gone to bed. He had considered calling us and then decided not to. It's just too hard, he had said, and I will just ask them to take me home.

Oh my god, that hurt. And yet, I believe he was thinking of us, too. He knows how hard it is for us to hear the pain in his voice, and to endure his pleas to come home. (He also probably realizes such pleas are futile.)

In one very long month we will begin the process of regular visits -- first on campus, then in the community, and finally -- every other weekend -- home. Until then all we can do it talk on the phone if he will allow it.

I am trying so damn hard to hold it together. To not swing from happiness to sobs to peace to gloom in the space of three hours, I guess I am getting a taste of what it's like to be Ben -- although I hope I will never feel the relentless, soul-crushing depression that has been his dominant way of being for most of his short life.

So here I am, with a house empty of everyone except Lars and the Hound, and so much I could do I can hardly bear it. How do you manage that? How do you learn how to handle openness at age fifty when you have lived on alert, your sole focus quenching the fires of psychiatric crisis, keeping your child, your family, and yourself intact since you were forty? What will I do when I'm not driving to hospitals several times a week, doling out an ever-growing cocktail of medications, twice, thrice, a day? When I'm not calling the crisis team at nine p.m. to get him a bed in the psych unit because I fear I cannot keep him safe at home? Watching him during his waking hours like a hawk, but pretending I'm not? How will I deal with no longer yearning for the sound of his van pulling up to the house and fearing it at the same time? Living life by the hour and not by the month or year, or lifetime?

Readers, I have no idea. All I know is that I am lonely and I am puzzled, and I am desperately hoping he soon misses me less than I miss him. And that he grows to love his new home. Our home has changed drastically, at least for the time being. I hope I can grow to love it the way it is now.

Right now I am just waiting to speak to him when he feels he can, and also for the next text from my darling Saskia, who is in Italy in her opera program. This is the best thing that has ever happened to her, and one of my crowning achievements that I was able to make it happen for her. Although really, the achievement was and is hers. All I did was scrounge up the resources to let her go once she was accepted.

Early readers of this blog might remember my old mantra: One day at a time. I have a new one now:

One foot in front of the other.

Progress

We are no longer in the doldrums around here. Not at all.

(I know, Readers. You weren't born yesterday. You've been through this before. Tomorrow I might cry on your collective shoulders, right?)

Anyway, tonight we are happy. First piece of good news? Benjy is starting his residential school next week. Yes!! It worked out. So many people spent so much time striving to make this happen. Not just Lars and me. A whole team of folks who want Benjy to succeed. Who will do whatever it takes to keep him learning and active and give him the community he has never, ever had. Man, I LOVE those people.

It's like my boy has ten parents, all of whom are determined to make his life better. How lucky is that?

Let me tell you, we take NOTHING for granted.

So next week there will be kids in his life (I am afraid to say "friends" in case I jinx it). And horses. Sheep. Chickens. Cats. A couple of 3-D printers and other tech stuff I don't understand. A swimming pool. Ropes course. Did I say cats? I see that I did, but cats deserve a second mention. There is going to be school as well, but what can you do? Oh, and three favorite sports: archery, tennis, and ULTIMATE FRISBEE.

So there you have it.

I wonder if I will be lonely without him. I assume I will be. But then again, so much will open up for us. For me, especially. My life has been on hold for so many years now. Not on hold, exactly, but it's been a life of triaging crises and driving to hospitals. Dispensing medications. Holding my boy and trying not to weep with him. Weeping with him anyway.

It's been a life of writing whenever possible. In waiting rooms and emergency rooms and latelatelate at night while my whole house slumbered, even the dog. A life of not reading. (What a loss. There was a time when reading was all I did. I miss it.) Of trying to remember I had another child. (I hope she will forgive my relative neglect. Maybe she'll write a memoir about my crappy parenting when she grows up.)

Now I can begin to think about me. How I'll fill my time without Ben to fill it for me. I'm not going back to academia. I'm thinking things through, though. You'll be the first to know when I figure it out.

In the meantime I have a piece coming out in a couple of weeks in a wonderful online journal, Literary Mama. This essay marked the moment I switched from writing fiction to writing creative non-fiction -- my very first attempt at writing about our lives, Benjy's and mine. It's completely out of date at this point. I think I started it shortly after that first time he begged me to help him end his life (2009??). His first hospitalization came after that, and so did this essay about the mental illness in our lives. I will link to it when it goes live on the site.

I found out the essay I sold to O, the Oprah Magazine will come out in October. That has been a loooong wait! Just did a big revision on that one, and sent the photo editor some pics, so it's really happening. For a while I thought they might kill it.

There are a couple of other publications in the works, as usual. And there is a fluffy hound with his paw on my knee. And there are no more hermit crabs in this house anymore, which makes me both glad and sad. (A story for another day.)

And now I am finished with non-sequiturs and going to bed.

Good night, friends!

On Saskia and Singing

I'm sneaking in a little update on Saskia, who does not wish to be the subject of my blog posts.

We dropped her off yesterday at her summer opera program at the Walnut Hill School for the Arts.

Such a coup she got in. Such a chance (I hope it is not the last such chance we are able to wrangle her) for intensive study of her art, surrounded by kids who get her, who share her passion.

Such a beautiful place that school is.

Such a beautiful country she will visit as part of this program. (Italy, Readers, Italy!!)

Such a voice. I am waiting for the day she feels less burdened by praise, less like someone undeserving of her gift. Less embarrassed by our utter joy in her.

I am waiting until she allows me to post a video (or audio recording) of her performing. I hope that day comes soon, because I can't stand the wait. I know it is TOTALLY NOT COOL to brag about your kids, but man, I just want the world to hear her.

Fifteen-and-a-half years old, and this summer she is singing Fiordiligi in Mozart's Cosi Fan Tutte. (A scene, not the whole shebang, but wow.)

This is the duet, "Prendero quel brunettino," that she'll sing with another girl as part of her scene:

 

(NOT Saskia, just in case you were wondering.)

 

So that's my Saskia post. Stay tuned, because I'm hoping after these three weeks she will allow me to show her off a little more.