Tuesday, February 26, 2013

Oh, Lars

I thought it was high time someone wrote a post making fun of Lars. It's been a while. And if I don't do it, who will?

I always get the dirty jobs around here. ;)

So this one is about Lars and technology. Now let me start by saying that Lars does a HIGHLY technical job. English major notwithstanding. He is a principal software quality assurance engineer at a very cool high tech company doing very cool and complex stuff, and by god the junk he brings home to read is LESS READABLE THAN THE DEADEST OF DEAD LANGUAGES. And the deadliest, too.

He can trouble shoot almost any computer issue we have at home, even the ones that have Saskia in tears at one a.m. the night before her assignment is due. He can converse with programmers in their language. He knows what certain dorky acronyms mean. Like RTFM (delicacy prevents me from translating that into English). He's DOWN with that tech stuff.

Unless it has anything to with television remotes, microwaves, oven technology, or DVD players.

For example, when he wants to turn on the TV, he does not know which remote to use to do it. Granted, we have three of them, so this is not quite a simple operation, but still, they are each visually distinct. For example, the DVD remote, which we almost NEVER USE, is dove gray. The TV remote, with which one turns on the TV (I know, radical idea) and also accesses Netflix on the TV (OK, a bit more complicated) is all black. And the cable remote, with which one changes channels and accesses on-demand features, is black with multi-colored buttons.

But you all don't need the explanation, right?

I have painstakingly explained these processes to Lars a hundred times. Just like I have presented the use of the digital controls on our stove, again and again. ("No, the way you set the timer is by pressing the "TIMER" button. Crazy, isn't it?") And how I haverepeatedly described the way you set the clock on the microwave, which occasionally has to be done again when we lose power. ("See that "CLOCK" button? Yeah. Now push it.")

Lest you think Lars is dumb, let me assure you he is quite extremely intelligent. One of the smartest guys I know. And also one of the most helpless. But only in very focused ways. So if a mullioned pane of glass (circa 1919) in the vestibule of our house shatters, as happened last year, and I run to call a glazier, Lars will stop me and say, "I can fix that!" No matter that he has never done anything of the sort in his entire life. And he does it, and does it well, saving us probably a hundred dollars.

There are lots of other things he does that I can't -- or won't. Which is probably more to the point.

As long as Lars has me to turn on the TV for him, why should he bother?

So the other night when he said, "Now HOW exactly do I do on-demand again?" I killed him with kindness.

"I KNOW," I said. "It's really hard. It's kind of like programming. I mean, I know you are really really good at QA, but you're not a programmer. You would struggle with that. And this is kind of like programming. It's REALLY hard. But I have faith in you, Lars. I know you can do it. BECAUSE YOU CAN READ THAT DEADER THAN DEAD LANGUAGE CRAP YOU BRING TO BED EVERY NIGHT."

"That is what I read to put me to sleep," he said.


I showed him the little on-demand button -- really, much too little, I don't know what Verizon was thinking when they designed that remote -- and he pushed it, and I guided him through the process of selecting a movie.

He did it all by himself, and it was a lot easier than programming. Actually, it was even easier than software QA. The question is: Will he be able to do it again tomorrow?

I'll let you know as soon as I know. Because I know you want to know. Who wouldn't?

Sunday, February 24, 2013

So, What Am I Supposed To Do?

It was pointed out to me this morning, by someone I love more than life itself, someone who has been a crutch to me, a financial support in desperate times, a loving advisor, a shoulder to cry on, that perhaps I should focus more on the good things in my life.

And I heard her loud and clear. I mean, I have a home, and it's actually quite a pleasant one, if small. I am able to feed my family. I am richly loved and befriended. I have not died of breast or ovarian cancer, as might have been my lot had I been born even ten years earlier than I was.

Of course, on Friday my van -- which I affectionately refer to as the "scheissbox" -- broke down on the MassPike as I was driving Benjy to a much-needed psychiatry appointment at Mass General, so I may not be QUITE so lucky, all things considered. I mean, that was SCARY. And the last time our family broke down on the MassPike, in 2008, it was 2 years before Ben would ride on any highway again. Even a big road would cause acute panic. (I bet you thought only soldiers got PTSD.) So I did feel pretty sorry for both of us that day. Especially Benjy, whose fear, as usual, waxed ginormous. And he never got his psych session.

On the other hand, yesterday I got to spend two-and-a-half hours at a salon having my hair colored and being treated like someone special -- although most people probably just take things like that for granted.

So yeah, there's some stuff to be thankful for. Also, I do not live in Syria or Afghanistan or a myriad of other places it would be unfortunate for me to live in at the moment.

Wow, I felt awful. I know she did not mean to make me feel so. I know it was meant as a helpful suggestion. All this sadness is toxic, both to me and the people around me. I KNOW THIS.

So I sat on my couch and cried a little and resolved to be a better person and more thankful for what I've got and to talk less about Benjy when I talk to people.

Five minutes ago he woke up walked down the stairs, wrapped in a blanket.

"Hi, Mom," he said, and sat down beside me. I was on Facebook. He looked down at the lower right corner of my screen.

"Two-twenty-four-thirteen" he said. He said it again. And again, as he made his way toward the stairs. I knew what had happened. His laptop sometimes decides to change the date on him. We don't know why, but it screws up his gaming.

When he was halfway up the stairs I said, "Do you know what day it is?"

"Yeah," he replied. "Saturday. No, Sunday."


But of course he lost the date. "So Mom, what's the date again?"


"But what's that? April? June? November?"

I tried to keep my voice from shaking as I answered. "February, Ben. It's February."

"OK Mom. Thanks."

My son is wearing Depends. He is not certain whether the second month of the year is April, June, or November. He barely connects with anyone anymore. He is not the person I used to know.

Why the fuck do I have to be grateful for anything right now? I guess I just have to be aware of how my grief affects others. Because I can see that it does -- and the very last thing I want to do is bring anyone else down with me.

That includes you, Dear Readers. Sorry this blog has become such a bummer! There MIGHT actually be some good news to report soon. So don't jump ship yet!


Friday, February 22, 2013

What We Know Now

Nothing. Except that the MRI was normal. That is grounds for celebration, of course, but what it really means is that the diagnostic journey continues.

The neuropsych will be finished on Tuesday, and then I will BEG the psychologist to expedite her report because the neurologist really, really needs it. I will resort to bribery if necessary (as in, "If I pay extra, can you get it done in a week instead of a month? Or can you just call the neurologist TODAY and talk to her before you write the report?").

On Wednesday we drive forty-five minutes to Woburn so Benjy can be wired up for his 72-hour EEG. And maybe our answer will come out of that particular pediatric torture. I sure hope so.

But you know what's weird? Wednesday and Thursday his neurological symptoms seemed better. Actually, after he returned home from his MRI he seemed better than we'd seen him in a couple of months. (Maybe the anesthesia has unknown magical properties?) The doctor told us he'd be a sleepy couch potato for the rest of the evening. Instead he was chatty and -- for him -- quite lively.

He came down and jumped these flat-footed jumps for his grandma and grandpa. "Don't I jump HIGH?" he demanded.

"Oh, YES." said Grandma and Grandpa. (No, he does not, between you and me.)

So the neuro stuff seemed improved, but yesterday we saw the old restless seeking return, and the profound sadness. Asking asking asking for things he thinks will change his life.

When he asked for a cockatiel I grasped his arm and said, "Stop." I offered him the usual list of things he could do or things he could eat, but he merely dropped his head back on the couch in despair. He stayed like that, despondent, flaccid, glassy-eyed, for a while, until I gave up and made him take his meds, hoping he'd simply go to sleep. Sleep is sometimes our best hope.

He was up another three hours, but with his typical mood lability he recovered his (relative) good spirits after a while.

Today we have a psychiatry appointment -- back to MGH, our new second home -- and that, Readers, is a very good thing.

Wednesday, February 20, 2013

Brief Update, Before I Keel Over

Not from despair. Just exhaustion.

So, let me say this first, and let me enunciate very clearly:

My. Boy. Is. An. Inspiration.

I hope to be more like him when I grow up.

In spite of the fact that he had had no food since ten o'clock last night, and no water since 10 o'clock this morning, and in spite of the fact that his 12:15 MRI appointment was delayed for two hours (i.e., two more conscious hours without food or drink), I never heard one word of complaint.

No talk about hunger, except once in a matter-of-fact way. No whining about boredom. (Hey, I have been around the block a few times. I know about bringing a laptop to the hospital.)

No self-pity. No pissed-offedness. And when we met briefly with the anesthesiologist to talk about what was to come, and said anesthesiologist used the word "seizures" (I just say "staring spells" when I talk about it), I could read the utter terror on Ben's face.

"Seizures? I have SEIZURES??"

"Staring spells, honey. Staring spells."

He sat quietly after that, and bravely. If he was scared still, and I know he was, he endured his fear with such courage. My God, I can't come close to that.

And here, finally, is what you've been waiting for: There is no tumor in his brain. There is nothing that would require surgery tonight or tomorrow or even next week, as far as I know.

But there is much more data in those images than we know about at this point. And I will probably have to wait until tomorrow to hear about it from his neurologist.

There might be something in there that explains the fluctuating cognitive impairment, the incontinence, the staring spells, the occasional replacement of the boy I know with a foundling, another boy who looks like he is on drugs or intellectually disabled. And maybe it will explain why an hour after the foundling arrives he leaves again, and then Benjy does something like spend the next hour on the phone with tech support to figure out a glitch in one of his computer games.

(The tech support guy yesterday thought he was talking to someone named "Penny," which was a little unnerving for Ben -- "That could be a boy's name, right??" "Oh sure, Darlin,'" I assured him -- but together they figured the damn thing out.)

So maybe the MRI will let us know what's up, and maybe it won't. And then I'll pin my hopes on next week's EEG.

I know he's pretty normal now that we're back home, though, because he's asking for Dunkin Donuts every half hour.

For the first time ever, that is a very welcome request.

I'll post another update tomorrow when I know more. Dear Readers, sleep well. I think I might, for the first time in a few weeks. I can't wait.

Taking a Page From This Guy's Book...

And trying to sit just quietly and smell the flowers.

Oh yeah, and drink some coffee.

Tuesday, February 19, 2013

Update #2

He made it three whole hours. Half an evaluation, which usually runs five or six. The psychologist brought him out and said, "He's done for today. And he did just great."

We scheduled the second half for next Tuesday. I got no feedback from the psychologist -- I never had her to myself, so I couldn't ask. But she felt no need to call the neurologist, so that seemed reassuring. And she said Ben was the nicest boy she's worked with in a long time -- a real pleasure.

That comes as no surprise whatsoever. Even when he is not well, Benjy is a mensch.

I asked him on the way to his McDonald's lunch whether the testing was hard. It was.

The memory stuff is what threw him. Of course, as expected. Oh, and the numbers. Also predictable.

But here's why this child is so confounding. He could not successfully complete the memory testing today but he remembers still the three words the neurologist on call at MGH that night he was admitted asked him to hang onto. He recited them to me in the McDonald's parking lot. And they sounded darn familiar.

Only now I've forgotten them again.

I, at least, am consistently unable to remember things like strings of random words. Benjy either remembers like an elephant or forgets like *Mog the Forgetful Cat* (FAVORITE kids' book in our family! Mog is QUITE forgetful, but also an inadvertent hero.)

And that's what I don't get. Is his brain working or is it not? I don't think a simple answer is coming my way anytime soon, though.


Entering hour two of neuropsych. One twenty-minute break and then he had to go back in because the psychologist came for him and because he was going in anyway to escape the high-pitched squeaking of a very little girl -- four? five? -- in the waiting room. No hand-held device could cancel out that agony. (I think it's rather a cute squeaking, but admittedly after fifteen minutes it does wear on one.)

Two hours is much better than the one I'd anticipated. He did emerge looking either like sleep was immanent or he was on some sort of mind-altering drug. Again a boy I don't know very well.

But on the other hand when he couldn't get the game he wanted on his PSP he willingly read his zombie novel on my Kindle. Whether the words made any sense to him I do not know but he did seem to be following them.

Now he is back in there. I wonder how he's doing on the tasks she sets him? He said so far it's all been pretty easy. They do start out easy and then get harder as the hours pass.

I keep hoping he's going to surprise me and exceed his performance from three years ago. Or even just match it. That would be such a joy. I am really hoping I'm just an overanxious mom who is overreacting. Except every time I've "overreacted" about my kids -- at least according to Lars -- they've ended up hospitalized or thoroughly worked over by specialists who were also concerned. And then diagnosed with crappy stuff. Almost always, my hunches have been right, and Lars has been waaay off.

So here is my hunch about Benjy: I think something is wrong with his brain. Not just because of the seizures, which in themselves indicate there is something wrong in the brain. I mean, I think there is a structural problem in there. I am praying in my Jewish-atheist way that I am wrong. I think the Universe owes us BIG TIME. I am calling in its debt.

I'm thinking the best case scenario is that the seizures are just-because, and they can be easily controlled with med. No problems inside that handsome head except some neural misfiring. I can live with that. It might mean my boy will come back to me fairly intact. It probably does mean that.

And maybe they are NOT EVEN SEIZURES I'm seeing. I mean, I know I claim to be some sort of expert but the truth is I'm a Dickens scholar. And Dickens really has no answers for me at the moment.

Hey, maybe he's JUST TIRED. Or JUST TWELVE. Or JUST GOING THROUGH PUBERTY. And I and his doctors have just jumped the gun. Maybe this is really not a big deal.



Benjy's neuropsychological evaluation is happening at 9 this morning. I was just reading over the one from three years ago. At the time we were fairly distressed over the findings -- super high cognitive functioning in some areas, borderline something-or-other (intellectual disability, perhaps?) in others. These weird, weird spikes and valleys, indicative of impressive intelligence and severe learning disabilities. Oh, and the anxiety, isolation, and sadness. They were in that report, too.

He apparently talked to the psychologist about things he really cared about: Greek mythology, sketching, playing the violin.

God, that makes me want to weep.

Because I do not think the conversation will go that way today. I don't think he has access to anything he used to care about. I think he spends much of his days now in an altered mental state. I saw it yesterday at Supercuts: he sitting in that chair looking like a boy I never met, not only because of his Abilify-induced weight gain but because he looked sick, his eyes looked funny.

I texted my mom: Mom, he looks sick. His eyes don't look right. I don't know what to do.

She did not know what to do, either.

His eyelids drooped in this odd way (I have seen it once or twice before in the past couple of weeks). His eyes themselves looked almost clouded. His entire face registered a kind of loss of sensibility, although unlike during the petit mal seizure I witnessed a week ago, he did seem to maintain some kind of consciousness. I thought I saw him respond to remarks by the hair cutter but I'm not totally sure. I tried to grant him the dignity of a little distance, which at twelve he deserves. So I stood anxiously over by the seating area, but I did not take my eyes off him except to text my mom.

Interestingly, he came back to me as we were leaving Supercuts. Eyes normal, eyelids properly raised. He felt well enough to accompany me to the supermarket, and that was a temporary relief.

However. Today will be a severe test of his mental capacity, his emotional endurance, and my ability to keep myself from crying in a public space (aka the waiting room). Can you imagine what he will feel, when he cannot (as I anticipate) perform any (or many) of the tasks the psychologist sets before him? When he is forced to acknowledge that he is losing his ability to think, to do things he used to do? Oh, this is going to be a hard day!! I don't know where I am going to find the strength to endure it, or where he will, either.

I mean, what can I say to him when he sinks into despair? He is not yet so impaired that he doesn't know he's losing the ability to know certain things. He told me last night he's scared. Who the fuck wouldn't be?
I am scared too. I have never been so scared in my life, ever. Not when I got talked by a friend into skiing (worst decision of my life. SKIING??? Not my sport) and fell off the T-bar at the entry to the expert slope instead of making it up to the slope for beginners, which I'd been headed for. (You can fill in the blanks here.) Not then, and not when I went in to Beth Israel get the results of my genetic testing for the breast cancer gene, and not when I was heading in for surgery to remove my breasts so I'd have half a shot at a full life. Not even a few weeks ago when my toxic reaction to a medication made me think I might be dying.

I am scared and I can't take a Klonopin because then I can't drive Ben to the place to get his testing. I don't think a glass of wine at 7:13 a.m. would be a good idea, either. (I've considered that remedy more than once in the past years though, I will admit.)

All I can do is wake him cheerfully at 7:45, feed him a good breakfast, hold him for a few minutes, and promise him a kick-ass video game when he's done. Whether he lasts one hour or six.

Oh yeah, and McDonald's for lunch. And Swizzle's for frozen yogurt.

What I really wish I could give him is a new life. I would take his in a heartbeat if it meant he could start over. Sadly, that's not how life works. I'm trying really hard to get over that crappy reality.

Monday, February 18, 2013

My Newest Medical Specialty

So, I've spent the past week reading obsessively about epilepsy and seizures, because I am pretty sure at this point that's going to be the newest diagnosis for my poor boy. The tests of the coming two weeks should tell for sure.

At this point I have so many medical specialties under my belt they should just admit me straight into the residency of my choice, without bothering with actual med school coursework. Who needs that?

Doctors LOVE me. I speak their language, man.

Do I want to be a psychiatrist? Neurologist? (I know just how to do those goofy neuro exams, having had them myself and watched my two kids have them innumerable times.) Developmental pediatrician? Rheumatologist? Dermatology, orthopaedics and urology, although I have logged some hours there as well, I'm a little less informed about so we'll count them out.

But hey, who has time for work when you spend most of your waking hours in all of the above specialists' offices, or talking to them on the phone, or researching the symptoms they treat, or triaging your kids? Or in the damn ER?

So close to being riiiich, and yet so far. (Apologies to my doctor friends, who know I am stereotyping just a bit, right here.)

Anyway, we've seen the petit mal seizures, and so have others. The cognitive losses, the confusion and disorientation. The incontinence. I read that some children can have 100 of these "absence" seizures a day. Can you imagine that? Losing consciousness 100 times during the school day, and your teacher thinks you are not paying attention? Ah ha! Maybe That's why Benjy has not learned much in school since -- forever. And why school is a HUGE source of anxiety -- even the "Joy School" he now attends. Makes sense to me -- although on the other hand, I really think this is a relatively new development.

Last night while he slept I was fretting about him, so I decided to sneak into his room and watch him sleep. What I saw made me very sad.

His sleep is incredibly disturbed. Lots of movement. Head raised, eyes opened, head lowered, again and again. Efforts to breathe through his chronically congested nose (he refuses any kind of nose spray so he's out of luck on that one). I went and sat down on the edge of his bed. He half-woke.

"Mom? Dad?"

"It's me, honey.Can't you sleep?"


"Then come into my bed."

I have not done this in a long time. But I needed to be near him while he slept, to see what happens all night. Even if it meant I would be up\ all night. I needed the data, for his doctor and for my own information.

I told Lars he would be spending the night in Benjy's bed. He looked mournful but agreed. Good idea.

For the first hour, I kept my hand lightly on Ben's back. Again and again I felt his body twitch. Saw him raise his head and open his eyes a couple of times. After a while his body quieted and so did mine; I fell asleep. What woke me early this morning was his leg, or legs, twitching and kicking.

My poor child is not even granted the reprieve of a peaceful sleep. He is not granted a reprieve ever.

And I had the audacity to complain  a few days ago about wanting my two-months respite.

I got up pretty early this morning (I always do these days, because I am too anxious to go back to sleep after I get up at six to pee) and after trolling Facebook for a while I started Googling.

I've got my usual reputable sources. WebMD. The Mayo Clinic. Children's Hospital Boston. There are a lot of good resources out there if you know how to parse them. As an honorary medical resident, I mostly do.

And I have concluded that Benjy was seizing last night. They say the person wakes with a headache and dizziness. I will have to ask about that. He's never complained about those symptoms before, but sometimes I have to ask. And sometimes he is not a reliable reporter anyway.

I wish the next two weeks were over. Not only do I want a firm Dx so we can move forward with treatment, I want to know WHY this is happening. Idiopathic seizures have no known cause, except that they are usually hereditary. I do not know of anyone in our joint families who has epilepsy...but then again, Lars's family doesn't really talk about stuff like that (or communicate with each other well at all). So maybe they do carry that genetic predisposition.

If they don't, then what is it? A tumor? A hemorrhage? Aneurysm? Degenerative disease? Inflammatory process?

I know what you are thinking: Whoa, Anna! You are jumping the gun. And you are absolutely right. Chances are the MRI on Wednesday will reveal no structural issues. And then we will have to begin the laborious (I assume) process of figuring things out.

That's OK. I just want my dream to come true. My dream that the Benjy we used to know will come back to us. Maybe even healthier than ever. That I'll resume my education in things arcane and wonderful, courtesy of my young scholar.

That he will once again ask me to explain Marxism to him, and then ask me if we can have more talks about politics. That he will recover his strongly-held opinions about the price of gasoline. That he will know every species of bird and the names and the creatures of every pre-historic period, and which military helicopters were used in Vietnam and which in WWII, and whether the Panzer or the Sherman was a better tank and why.

Maybe he still knows some of that stuff but he has no desire to talk about it.

Boy oh boy, does that hurt..

Saturday, February 16, 2013

What I Want Out of Life

I think I have figured out what I want out of life. The list has changed since I was in my twenties and thirties. Even my early-to-mid-forties.

I figured it out while walking the Hellacious Hound with Lars yesterday, post-school pickup, pre-work.

We were walking in the cool sunshine and holding hands. I had been crying the past hour about things beyond my control. (An unkind word from a scheduler at Mass General. The death from Tay Sachs disease of a very young child I knew only from his mom's blog.)

The fresh air and sunshine did me good; I had not left my house, except to go to the hospital and pick up Saskia from school, in a couple of weeks. So we were walking and my eyes were wet but not I was not really crying. And it came to me.

"I don't want a vacation," I told Lars. "Or a week at Canyon Ranch." (I know of someone, incredibly enough, who insisted on a week at Canyon Ranch after her child was diagnosed with ADHD. I fear this probably makes me a bad person, but I hate that woman.)

"I don't want fancy stuff, a big house" -- that used to be on my list, a house which could actually accommodate our bedroom furniture, and in which two people could comfortably work in the kitchen at the same time -- "or jewelry. I thought I wanted riding lessons but I don't."

Lars just held my hand and listened.

"You know what I want? Two months, just two, of normalcy. Of waking up and feeling safe and quiet, and without dread. Two months without frequent medical and therapy appointments, and without the stress of constant pleas for items that cost money and that will surely ease our son's anguish, but never do. Two months of spending more time with Saskia. I want to get our nails done together, even though mine are bitten to the quick. (It will have to be toenails, for me.)"

"I want to live like 'other people' -- those folks who may be mythical (I prefer to think not) and whose kids are happy and healthy and (I hate this word) 'normal.' 

"I want to just be me and not this machine who schedules appointments and amazes doctors with how much she knows about illness and disability. I want to have two months where I am not going through the phalanx of medicine bottles, like a long row of soldiers but always at ease (as with everything in our house, the meds are disorderly) twice a day, and figuring out what is what and when it is taken."

"TWO MONTHS OF RESPITE, Lars," I said, "and then I could go back to it." I was crying again.

Lars held my hand tight and we finished our walk. I was so glad he was there beside me, my silent strength.

What a Week

Oh, what a week. Am I still standing? Walking? Barely. I just popped an anxiety pill. I hope it works.

My wonderful parents have been with us since last Sunday. They canceled a long overdue and much deserved vacation in Florida because Benjy was sick and going in the hospital and they felt their place was with him and us.

They NEVER fail to be there for us when we need them. Just like they did not fail my sister and her family over those long four years she fought the cancer that finally killed her. They made that nine-hour drive to Cleveland again and again and again, and in the end my mother just lived there while my dad had to stay home in New York and work. The guilt over that almost destroyed him, but he had to do it.

So they have been here and are planning to go home today until Tuesday. Then they will return in time for Benjy's new MRI, performed under general anesthesia. I feel rather like I did when they left us a week after Saskia was born. I stood in our driveway holding my little bundle and weeping, arm outstretched toward their rolling car. How on earth was I going to bathe and feed that tiny girl, and find the right clothes to dress her in, and soothe her colic, without my mom to help me?

So, it has taken a BLOODY WEEK to get this MRI scheduled. And in the meantime all of Ben's concerning neurological symptoms continue, and maybe worsen. Plus, what they call "absence" seizures have now been noticed, by me and his teacher and his therapeutic mentor. Those are the ones where the person checks out for a few seconds and then magically reanimates. I am scared to death he's going to do that on the stairs and break his neck. Oh, and did I mention the personality changes? Yeah, those too.

Yet, this is not a case where they would look at a child and say, "Off to the Operating Room, NOW!" Are they concerned? Yeah. But we seem to have a little time to sort things out. On;y taking a little time is KILLING my whole family.

The MRI would have been done by now except for some madness involving a sleep study that was done a month ago to rule out apnea. His neurologist was not TOO concerned but checking it out made sense. So Ben and I spent the night at the Massachusetts Eye and Ear Infirmary, across the street from Mass General, and he was all wired up and slept just fine, and at eight in the morning the technician let us go and said the doctor would receive the results in two weeks.

Fast forward to this week. Anesthesiology tells me the imaging cannot be performed until those results are received. Hmm, I think. I guess they never sent them to the neurologist. So I call Mass Eye and Ear and ask for the sleep clinic. At which point I learn two things: the hospital contracted with a company called Sleep Health Centers for its sleep studies, and that Sleep Health Centers (which I learned when forwarded to their line) had abruptly closed up shop ("due to problems beyond their control").


Thus began a week of emails and phone calls and frantic searching for those results -- on my part and the part of many others at Mass General. Really, on the first day, when the anesthesiology nurse told me SHE was told there WERE no records -- either they never existed or did not exist now -- I felt this was a Quixotic search. I mean, REALLY?

"Let's just move ahead," I urged her. "How about I bring him in to MGH tonight for a sleep study and then you do the MRI tomorrow?"

No dice. They were gonna find those results if it killed them. But of course, they didn't. Meantime I called in the big gun -- aka my brother-in-law Mike, who is a bankruptcy attorney.

"Mike," I said, trying to hide my UTTER DESPERATION. "What the hell is going on here? Could these records exist? Could they have disposed of everything whrn they knew they were going under?"

Mike looked into it. Found out the name of the court-appointed receiver and and shot him an email on his "client" Benjy's behalf. (I thought that was kind of funny. His client.) But he said, "Don't hold your breath. I doubt he'll write back. And of course so far he hasn't.

Now, try to imagine being the mother of a kid who has always been disabled and is progressively declining in some scary, scary ways. Who knows the doctors need to rule out some really frightening things, including but not limited to a tumor or other structural problem with the brain, some sort of inflammatory process, a degenerative disease. (On the other hand this may all be attributable to a simple seizure disorder and easily treatable with meds. We just don't know yet.)

And imagine you love this kid with the heat of a thousand suns.

And imagine you have to wait. And wait. And wait. For answers. For comfort and relief.

And meantime, your kid's having bad days and slightly less bad days. (I hear he tossed a football at school yesterday. Yay! But last night he totally went off the rails. Boo!)

Well, the good new is, he is having his MRI on Wednesday of school vacation. FINALLY. And his neuropsychological testing the day before. And a psychiatry appointment on the following Friday.

Yeah, it's gonna be a great February break for Ben.

The following week he gets to endure a 72-hour EEG. I am not making this up. We'll go to this place and they'll wire up his head and wrap it in gauze and and send us back home and for the following three days I will try DESPERATELY to keep him from feeling like he is going to die because he is bored. I will probably be forced to buy a new video game every hour on the hour.

But maybe at the end of it all we will have some answers.

There is just one thing that terrifies me. (Well, far more than one thing. But right now.) And that is that he broke down last night, with that growing  restlessness, that desperate seeking (more video games! Please! Can't you just help me??) And the tears, and the thrashing, and the utter, utter despair.

I guess I can be thankful it wasn't an animal taht would save him this time.

I prayed for his meds to kick in and put him to sleep. They did, pretty soon after. Then I went downstairs and did something I have not had to do for over a year. I hid the knives. I just had this creeping dread he might get up while I was asleep and look for them. It was probably an irrational fear. He has not wanted to end his life, or asked me to do it, for more than a year now. But last night I got spooked.

Before I went to bed I asked the Hellacious Hound if he would kindly sleep outside Benjy's door. Just watch over him while he slept. And when I woke up early this morning, my roiling stomach preventing the sleep I'd hoped for, there he was, right outside Benjy's room, a fluffy sentry. Noble hound! You will receive a bounty of cookies today.

So now the question is: what will happen when Ben wakes up? And if what began slowly emerging this week and culminated in that breakdown last night continues today, my big question is: whom do I call for help, neurology or psychiatry?

Because this case is confusing the crap out of me. What everyone thought was psychiatric might be neurologic. Or a combination of both, more likely. So how am I to know what to do?

 Fortunately I have doctor friends who can help me make that decision. All I can really do now is hope we make it through today, and tomorrow, and so on through the end of all these tests. And take as much of my anxiety meds as I can without sleeping through the whole damn week. (Which is really what I would prefer to do.)

And reprise my old mantra, with which I used to close every post when I first started this blog:

Tomorrow is a another day. We'll see what it brings.

Saturday, February 9, 2013

Benjy, My Hero

The weirdest thing happened last week. Within two days of each other, two of my friends, both of whom are acquainted with our family's challenges, sent me job listing with the note, "Thought of you when I saw this!"

Well. That has not happened in a very long time, and I felt a pang when I read about these jobs, which did seem very interesting.

My response to both friends was, "Thanks for thinking of me but I could not possibly be a reliable employee. I don't think work is in my cards for a very long time, if ever."

It was harder than I would have thought to write those words. When I was working (and trying desperately to keep my family, my Benjy especially, afloat), I urgently desired to be a "full-time" writer, writing during my scarce quiet interludes and otherwise taking care of all the stuff that never got done in the past, or got done when I was supposed to be working and caused me relentless anxiety and stress. I did not like being simultaneously a half-assed professor and a half-assed mother. Not at all.

When it finally came to pass that I could mother and write and chauffeur and clean (only occasionally) and cook and pay bills and walk dogs and so on, I was happy, although the feminist in me revolted a little. I still am, really, unless I think hard about what might have been -- retirement account and professional growth and satisfaction and intellectual stimulation and a savings account with more than $35 in it and an overdraft of only theoretical utility. Then I sometimes feel a little sad.

The past month has simply confirmed my unavailability for work. Starting with my own two-and-a-half week illness, leading on to a five hour battle with MassHealth on the first day I'd begun to feel better, followed by some alarming developments in Benjy's physical and cognitive state last Wednesday, which led to his admission to Mass General on Thursday. He and I spent most of Thursday and half of Friday in the hospital. He underwent an MRI without sedation -- against our wishes -- and it was agonizing for him. I had to insist they stop but was paralyzed myself with anxiety and anguish for the first half hour of the damn thing. (Of course it was a bust; the doctor told us the good news was they'd confirmed he had a brain. That was about it.) He will have to go back this week for another, but will be fast asleep. He had lots of blood work (some thyroid dysfunction) and an EEG (some abnormalities). I hopehopehope the MRI will be okay. He met with three medical teams, each composed of between two and twelve doctors: the general pediatrics team, the neurology team, and the psychiatry team. I am girding myself for a long medical investigation. The word that popped up the most was "complex." Benjy is a complex case.

But here is what I would like to say: This boy was forced to listen to me catalogue his "deficiencies," the ways in which he is broken, again and again to different people. I made sure to throw in the wonderful, wondrous stuff about him whenever I had the chance. He had to endure physical and emotional agony in that MRI machine (and if you aren't familiar with autism spectrum disorders you will need to be told that these kids often have serious sensitivities to noise and other sensory stimuli). I use "agony" without hyperbole and with great sadness. He had to lie still for about half an hour with sensors glued to his scalp and a chaos of wires tethering him to a machine. A bunch of doctors, male and female entered his room without much warning and he was sitting on his bed dressed only in boxers (the johnny was uncomfortable). Toward the end of his ordeal his cheeks were bright pink and he looked like he wanted to curl up and die.

He does not completely understand why all this is happening. The basic knowledge he has lost (of the sort one learns in preschool or kindergarten) does not seem a troubling loss to him, because he knows that Napoleon's last name was Bonaparte, and can spell "world" backwards without thinking about it too much. To him it was a lot of pain, humiliation, and bother for nothing -- a mountain of trouble over a problem the size of a molehill.

And yet. I did not hear one word of reproach. Not one bitter complaint. He never once said, "This is not fair." Or, "Why me?" As always he bore his challenges with grace and courage well beyond his years.

I will do whatever it takes to help him have a fulfilling and, I hope, productive life. I am not ready to throw up my hands and say, "That's Benjy. He has the intelligence of an adult and of a toddler, all mixed in one." It will be a long time before I do that.

The good news is that a whole bunch of super smart doctors are ready to travel this road with us. I asked them point blank: will you just let us go if you can't figure this out today or tomorrow or next week?

They said they wouldn't. They're up for the challenge, and so am I. I just hope Benjy can endure whatever lies before us.

Tuesday, February 5, 2013

An Ongoing Dilemma

Today I was able to write again for the first time in three weeks. That felt wonderful!  I had some minor revisions to make on my essay “Benjy, Awake” for an online literary journal. I’ve admired this journal (name to be disclosed once the deal is done) for a long time now. It’s the perfect home for the essay, and the editors are very excited about it.

What’s so cool about publishing in this venue is that it’s a pretty highly visible website – I think I read somewhere that they receive about 40K unique hits per day (but that might have been per week). And all the writing they publish is truly excellent. It has a niche focus – more on that another time – but there are tons of readers around the world who fit into that niche!

So, here I am, making minor edits to this essay I love and believe in, and the old doubts creep in. Is it right to publish work that deals largely with my son, and publish it under my own name, even if I change his name and everyone else’s? That was the dilemma I faced with the blog, so I reinvented myself as a woman named Anna.  But all of my other publications so far are under my real name. If I write anything about anyone in my family I will continue to change their names, of course. But if I don’t publish this essay and all the others I have in the works under my own name, I guess I sort of have to start all over.

I don’t want to start over. I’ve worked hard to get here. I’ve already sacrificed the career I studied years and years for, and worked so hard to excel at, for my family. For Ben, really. And I think that’s a GOOD thing. Because how on earth would he make it in life if I didn’t make him my full-time job?

But my writing is the dearest thing to me in this world, aside from the people I love. I have had some nice successes and a lot of rejection. I sense my star is on the ascendant and I want to go for it. But what if Benjy Googles me, or himself, one day, as I know he will, and finds something that makes him sad? Something that hurts him? What if he feels betrayed and exposed? He knows in a general way that I write about our family, but I’m not sure he knows what that means. He owns his disabilities – all of them – without shame and without fear. I am so proud of that. He’s a bigger man than most.  

But does that mean what I’m doing is right? If it’s good for me, good for other families struggling with the same issues, and good for Ben, then of course it is right. But what if it’s good for me and those other folks but not good for Ben? Does that make me a bad mother?

I might have to consult with this guy:
He’s sitting nearby looking a lot wiser than he did while lounging on the above sofa.

Come what may, I have decided to publish “Benjy, Awake” under my own name. And of course, after it’s up on the journal site, anyone who Googles that title will find me. What, then, is keeping me from putting my own name to the blog? And linking my writing website to it? The more readers, the better for me. That is an unequivocal fact. I have blog readers and I have readers of my fiction and my non-fiction. Some of them may unwittingly overlap. But wouldn’t it be great if they all just became General Readers of The Person Currently Known as Anna Delaunay?

(In the same sort of way that listeners to the Artist Formerly Known as Prince were able to continue listening once he became a guy with an unpronounceable symbol for a name.  I think it’s the same. Well, maybe not. But I just couldn’t resist.)

It is so hard, balancing Benjy’s needs with my own. I rarely, rarely, put myself first. Maybe never. And maybe now it’s time I did something for me.

I’m waiting for Zeus to hurl the thunderbolt and end the conflict within me. So far all is quiet, except for some faint snoring in the corner. The wise one has fallen asleep, the Chief god will not intervene. The burden is on me to make the right decision. I think I've made it, and I sincerely hope a sinkhole doesn't open up beneath our house and suck us all away.
If you don't hear from me in a couple weeks send help. And stay tuned for whatever happens next.

Monday, February 4, 2013

Sick, but also Blessed

Last Thursday I thought I was going to die. I am not speaking figuratively.

When the nurse at the endoscopy clinic at the hospital took my history and then told me I’d get a call from the doctor sometime after returning home that day, I cried tearlessly and whispered, “I was hoping I would not be going home after this.”

The nurse looked startled. She studied my face carefully and said, “I’ll speak to the doctor.” Then she led me over to a recliner, where I was to be hooked up with IV fluids and wait for my procedure.

I thought the hydration would ease the throbbing at the back of my head and my temples. I was wrong. Two bags of the fluid did not save me from that wretched pain.

That mornning I had not eaten for forty-eight hours. I had not been thirsty the past two days either, even though my eyes were sunk into my head. I had sipped water diffidently because I thought I should, but my ravaged gut did not like it.

I think I scared the bejesus out of the gastroenterologist. I laid back on her table and when she turned to look at me and saw my face crumpled up, weeping tearlessly, she had no words for a moment or two.

Then she said, “Anna, what’s going on? This was supposed to be a routine endoscopy. I wouldn’t have taken you on if I’d known you were so sick.”

“I am so sick,” I told her, trembling uncontrollably. It was cold in that room. “I have not eaten or drunk water in two days. I’ve lost fifteen pounds in two weeks.” And other gory details I will not burden you lay people with at breakfast time.

She did the procedure, of course. And my esophagus and stomach looked beautiful. Just like all my other organs, my urine and my blood, which were tested thoroughly on two visits to the ER in the preceding days.

“I have to send you home,” the ER doc said both times, and both times I cried and cried.

At least the second time they sent me home with Percocet.

So the bottom line is that I was exquisitely healthy and wretchedly ill at the same time. I was having a toxic reaction – what my PCP described as a “remarkable reaction” – to the new medication I had started just before my symptoms came on. It was possibly my last hope for a tic medication that would not make me ravenous all the time except during sleep. My last hope, I thought, to take off the weight these beastly meds have put on me over the past twelve years.

How ironic that the toxic medication did just that! (Well, about half of it. I’m down 18 pounds now, and looking more like my “real” self.)

And finally I am feeling better. Eating small amounts of food. Thinking I will most certainly live. The tics are a problem, but I have promised myself to try non-pharmacological methods to control them now. Maybe acupuncture. Maybe hypnosis. No. More. Drugs. (Unless I get truly desperate.)

But Readers, there was an INCREDIBLE bright spot in my two weeks of woe. You might remember I told you, back in September, that our Rabbi, who is a faithful reader of this blog, invited me to speak at Yom Kippur services this past year. And I spoke about raising Benjy and confronting challenges with what I hope amounts to grace and resilience (not that I always do. Not by a long shot).

And because our congregation is unbelievably awesome – a group of folks that is eclectic in every way except for in their passion for social justice, their compassion, their learnedness (OK, that’s eclectic, too) – they responded in ways that brought me a lot of joy. Hugs from people I did not know, earnest hand clasping, thank-yous, reciprocation in the form of telling me their own stories of pain and resilience.

And some of them began reading this blog because they cared about following our family’s lives. How wonderful is that?

I don’t want to go into details, but some beautiful person or people among them have blessed us in the most astonishing and lovely way – for Benjy’s sake – and Lars and I found out about it during our second trip to the ER. Let’s just say tears of anguish turned to tears of gratitude. And then we laughed. And then Lars said, “Maybe you should not write so openly and honestly.” And for a few moments I thought he was right.

But then how am I going to let the world know about the various costs, to families and to society, of disability – especially mental illness? Those costs take different forms, and it almost feels like an ethical obligation on my part to start a discussion about them. Certainly in light of recent events – and the challenges of accessing good mental health care for children and adolescents in this country -- it seems so.

It has always been hard for me to accept help of any sort.  My bestie visited this weekend and wanted to clean my crazy-dirty kitchen. And I hemmed and hawed and said no, I can do it, until finally she said “Just sit your ass down on the couch and let me clean the damn kitchen! That’s why I’m here, Dummy.”

(“Dummy” is a term of endearment. She loves me.)

I’m not sure why it’s so hard to let people help. But I’m working on that, reminding myself that I help others in our situation when I can, and am happy when they let me do so.

That’s what community is about, right?

So all there is really left for me to say to some special person(s) whom I have touched and who have deeply, deeply touched us is:

 We love you. And thank you.