Monday, August 26, 2013

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.


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

Monday, August 19, 2013

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.

Saturday, August 10, 2013

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.


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?


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.

Sunday, August 4, 2013

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.