Hurricane in the Brain, Part 2

Hello! I’m back — with the shocking, appalling and at times downright absurd sequel to my tale of the worst week ever.

But before I get into that, I just want to thank you for the many wonderful, kind and comforting responses to my post about Clio’s seizure. Writing that post, and feeling your support, really did have a healing effect for me. So, thank you.

And maybe I should have written about the experience sooner; maybe if I had, there wouldn’t be a part 2 to this story. On the other hand, I knew I wasn’t ready to write about it yet. Just as I knew last week that I wasn’t ready to write part 2 yet. Also, I was totally preoccupied by the election. (Whose outcome(s) I am very excited about!)

But enough throat clearing, as they say in the creative writing workshop world. Here’s the deal:

When Clio had her seizure, I spent the first two nights in the hospital with her. (And basically in her bed with her.) The third night, we switched, and Alastair spent the night while I stayed home with Elsa. Almost immediately upon my arriving home I started feeling shaky. I guess I’d been holding a lot of emotions at bay for the previous 72 hours — I had to, in order to be there for Clio — and now that I was back home, they were starting to break through.

Coming home from the hospital is always strange; it’s such a world unto itself. But this time was stranger. Haunting, even. Seeing our couch, specifically the left side of it, where Clio had been lying when she had her seizure, made my breath catch.

There was a book half-lodged in the back of the seat cushion of the recliner, and I couldn’t imagine how it had gotten there, until I realized I must have been carrying it when I came downstairs that morning, and flung it there when I saw what was happening to Clio.

Thank Goodness for Elsa — awesome, resilient, brave Elsa, who was (by all outward appearances) so unfazed by the whole thing. She kept me on track simply by her presence. I couldn’t crumple and cry; I had to give her dinner, put her to bed, then get her dressed and walk her to school in the morning. Normalness! Then I had a meeting to go for work. I wasn’t particularly looking forward to it, but once things got rolling, again, the normalness felt good.

(Stick with me; the crazy part is coming up soon….)

But then the meeting was over, and I had a pit in my chest, and my mind kept going back to that moment of seeing Clio there on the couch, ticking. And then the terror of those first hours, in the emergency room and in the ICU.

Knowing I wasn’t going to get much accomplished that day, I decided to go spend a couple of hours wandering around the mall. This is something I have a (bad, I guess) habit of doing when I am having a depressive episode — which this most definitely wasn’t; I can tell the difference between chemical and situational blues — or feel otherwise emotionally crappy.

There’s something soothing to me about the anonymity of being in a mall or store, and the brainlessness of wandering around looking at pretty things. I don’t go around blowing through vast amounts of cash or anything; But I can always think of an item or two the girls or I “need” and the immediate gratification of buying something is pleasant.

I mean, hey, it beats binge drinking or cutting myself, right? And I can always return stuff later if I come to my senses and realize that “need” was probably a strong word for that full-price sweater I got at Ann Taylor Loft, or the buy-two-get-one-free tops I bought at The Children’s Place. Especially given my decreased income of late.

Anyway. Clio and Alastair came home later that afternoon—this was Halloween, and she’d gone trick or treating at the hospital, and came bearing two huge bags of candy and other loot, one for her and one for Elsa, as always—and we got the girls into their costumes and went trick or treating with some family friends. While I managed to rally a bit, I still felt shaky. At one point, seeing Clio joyously running down the sidewalk to catch up with the rest of the kids, her Count Dracula cape flying behind her, I broke down and cried.

“I think I have a touch of PTSD,” I told Alastair later that night, only half joking.

But it was the following night that the shit really hit the fan. (Pardon my Francais.)

Alastair had left after dinner to spend the night in Hartford, where he had a couple of school performances early the following morning. After I put the kids to bed, I ate a couple of pieces of pilfered Halloween candy, watched an episode of Colbert, and spent too much time on the Internet.

Almost every night, it seems, one of the girls sleeps in our bed for a while at some point during the night, claiming she can’t sleep or had a scary dream. That night it was Clio. And at some point between three and four in the morning, I woke up thinking she was having another seizure.

I thought I felt her arm pulsing up and down, the same way it had when she had her seizure five days earlier. And then — it was the strangest thing — I felt *my* arm moving up and down in the same way, in synch with hers. And then it seemed that it was just my arm, not Clio’s, but I couldn’t stop it from moving. Finally (I think?) I held it down, and it stopped. And Clio seemed to be OK, too.

But then I started feeling light-headed and nauseous, and I knew that I needed to get to the bathroom in case I needed to throw up. So I got out of bed — but immediately fell on the floor, my head banging against it. And I couldn’t get up. Each time I tried, my head banged back down. My limbs didn’t work. I was groaning.

Clio was awake  now and I heard her saying, “mommy, stop it!” and “What are you doing?” and “Are you dead?” Then she was calling for Daddy. My heart wanted to split.

And I tried to answer her — I just wanted to reassure her that I was OK (Even though I wasn’t)– but all that came out was a scream. An awful, terrible scream. It happened again and again, each time I tried to speak. And then Clio was screaming, too.

I cannot even express how wretched I felt, hearing her distress, and not being able to get up and go to her, or talk to her.

I don’t remember the order of things. I remember feeling confused: did I need to go to the hospital? Did Clio? Would I go to Children’s? Call her doctors? Call the emergency room? Was I having a seizure? Could that be why she’d had a seizure — that it ran in our family somehow? It wasn’t the chemo after all?

I remember vomiting, more than once. I remember lying still and trying to breathe slowly, not hyperventilate, above all not to pass out. I remember wanting to get to my office, to my purse, to Clio’s dose of Klonopin in my wallet, so I could take it for myself. I remember my limbs bouncing and my head bouncing against the floor again and again. I remember managing to shimmy myself over to the rug.

I regained my voice, to some degree, such that I could say one word at a time. I called for Elsa, because I realized that I probably needed to go to the emergency room, or at least get some kind of medical care, and I knew that Elsa would be able to make it happen. (“No, it’s Clio!” Clio cried, misunderstanding.) Eventually she understood, and went and woke Elsa up.

Elsa — brilliant, brave Elsa. She sprang into action. Got the (land line) phone from downstairs. Tried to dial 911. She had trouble dialing, confusing “talk” and “off” (Jesus, why do phones have to be so complicated these days? Bring back the plain old rotary phone!!) I tried to help her, but couldn’t really hold onto the phone — kept dropping it, flinging it. Somehow, finally, we got it done.

My body felt like it was convulsing, flopping. I still couldn’t lift my head. Couldn’t open my eyes. Couldn’t say more than a word at a time. Was hyperventilating. Most of all, felt terrible — heartbroken — at doing this to the girls, after all they’d been through. Or, screw that, at ALL! How could this be happening?

I heard Elsa talking to the 911 operator — telling them our address. Saying she thought I was having a seizure. (Four days earlier she didn’t even know that word!)

I remember her calling up to me that she couldn’t unlock the front door. (The deadbolt lock is really hard to open.) The back, I said; the back. (The sliding door to the back porch is easier.) I think Clio conveyed this down the stairs to her.

The EMTs arrived. And I was able to answer their questions somehow: Name. Age. (Actually, I couldn’t remember if I was 37 or 38. Ha!) No drugs or alcohol, no. Yes, take medications. No, didn’t OD. No, didn’t swallow any whole bottles. Yes, pretty sure I took my usual dose.

I asked for the klonopin, they said they couldn’t give it to me. I told them about Clio — leukemia, children’s, seizures. I think they told me she was OK, don’t worry about her.

I was so out of it, I almost told one of the paramedics he was cute. Because, I thought, in my fuzzy sort of way, hey, I might as well, right? I could get away with it. (And he would have been charmed, I’m sure, because no doubt I looked just fabulous in my PJs, convulsing, hyperventilating, stinking of puke.)

Call my husband, I told them. Get my purse, get my phone. Kids across the street — it was the only place I could think of for them to go, close by. That poor freakin’ woman!! Same one we sent Elsa to a few days earlier. Barely speaks English, we barely know her, only that she’s a good neighbor (brings us fresh figs from her trees, asks after Clio) with a granddaughter our girls play with. And I’m sending my girls to her house at 4 am because I’m having some kind of ridiculous episode or seizure or God knows what.

Somehow they got me to the hospital. I think I threw up, or dry heaved, anyway, in the ambulance a couple of times. They dumped me in the ER, the nurses took my vitals, I think someone slipped me an Atavan, and then I just lay there for a while listening while a nurse berated a woman who’d been brought in for overdosing on, as it happened, Atavan.

I think maybe 45 minutes later a doctor came by to ask a few questions and tell me, dismissively, without physically or neurologically examining me in any way, that t I’d had a panic attack. (What about the convulsions? I asked. “You could have felt tingly or trembly; that can happen with a panic attack. But you couldn’t have been convulsing. You wouldn’t remember it.”)

Actually, you know what? I’m not going to get into the details of how hard that ER sucked, or what a dick the doctor was. This was at Lawrence Memorial Hospital in Medford, by the way. Don’t go there, if given the choice. I wish I hadn’t. Then again, we’ve been dealing with a world-class hospital with Clio’s stuff, so I’d probably find fault with any dinky suburban hospital.

A bit later I sort of berated the doctor (ah, the things drugs and trauma allow one to get away with…) for not being thorough, and for at one point suggesting that I should take a cab home when I was still unable to lift my head or fully control my limbs. I was crying through my questions, and crying just thinking about the girls, feeling terrible for all of this. The doctor asked if maybe I’d like to speak to one of their social workers.

“Because,” he said, “You seem like a complete mess right now.”

(Did I mention how awesome this doctor was?) But to his credit, it was a good idea, and I did talk to a social worker later, and she had some good ideas and resources to suggest.

Alastair, meanwhile, drove back from Hartford in the wee hours, came to me at the hospital, then got the girls from our neighbor’s house. My mom, God bless her, drove down from Maine to be with them. I slept at the hospital for a while, then we went over to see my primary care doctor. (I could still barely walk. Atavan, I guess. Anxiety. Whatever.)

I love my primary care doc. She’s smart and thorough and caring. She thought it was probably a panic attack (something, I should note, I’ve never had before) but also said it could have been a psychogenic seizure. Unlike the ER doc, she actually did a neurological exam, too, and wanted me to meet with a neurologist just in case.

Another piece of the puzzle fell into place that night, when I went to take my depression meds and realized that the dose for that night was already gone. Which meant that in all likelihood I’d taken two doses by accident the previous night. (Something I’d never, ever done before).

I only recalled taking the one dose, but I did have a hazy memory of looking at my pill case in the dark, trying to figure out which day of the week it ended with, to confirm that I’d taken that night’s dose. So maybe I took an extra dose half in my sleep?

SO, I called my psychiatrist and asked: could this be the reason for this whole thing? The double meds? But hearing about Clio’s seizure and all the stress I was under he said that most likely it was a combo of the two. My PCP, after talking with him, concurred.

So, reconstructed, the episode looks more or less like this: I was stressed enough to unknowingly double dose on my meds, and to wake up into an intense dream that Clio was having a seizure (no coincidence, probably, that Alastair was away, as he had been when Clio had her real seizure). I felt lightheaded, dizzy and nauseous because of the double dose. Perhaps my limbs were still in semi-paralysis, as can happen when you wake up abruptly, and that’s why I fell on the floor and couldn’t move.

I started panicking, thinking I was having a seizure myself (even having some pseudo-seizure symptoms) and freaking out about the very fact that this was happening, and that I was traumatizing the kids — not to mention that I was messing up Alastair’s plans and professional obligations.

Yeah, that dick of a doctor was right. I was a complete mess.

I spent a lot of time sleeping over the next few days.  A couple of friends sent flowers. Another visited with aromatherapy mineral bath powder and chocolate and a scented candle and a People magazine. Other friends checked in after Alastair posted something on Caring Bridge.

I feel so lucky to be surrounded by so much love.

But I also feel embarrassed as hell for causing such a fuss, and for this happening in the first place. I mean, I feel less embarrassed now, I guess. But still. I’m the gal who gets through it all with flying colors. Aren’t I?

I still feel terrible for Elsa and Clio having to go through the trauma of seeing me like that, and having to deal with the situation. But they seem OK. They’re remarkable. AND they’ve been getting lots of props for their heroism. In fact: the police officer who was the first responder came by a couple of days afterward to talk to Elsa, get some details about her (age, school, what happened before she called 911, etc.) because the chief of Police wants to give her some kind of citation or award for being so brave and helpful.

And I didn’t even know this, but apparently when the police arrived, Elsa went out the back door, went around front and got the policeman, asked if he was there to help her mommy, took his hand and led him around to the back door and inside.

I am so freakin’ proud of her. And Clio, too.

(The policeman also said he couldn’t believe I hadn’t had a seizure; he’d seen dozens in the course of his career and it sure looked like one to him. Apparently I hadn’t responded when tried to talk to me.)

As for the aftermath: well, we’re all going to try to take better care of ourselves. I’ve met with a social worker, who I really liked, and will talk with her again. Alastair has been talking more with the social worker at the Jimmy Fund Clinic,  and we’re getting Elsa more looped in with the sibling program. And we’re trying to make sure Clio gets plenty of  emotional support as well.

Meanwhile, I’ve taken two mineral baths while reading magazines. Isn’t that what us ladies are supposed to do to relax? Well, I liked it. I’m trying to find other ways to take care of myself as well. Exercise. Mindless crocheting. Deep breathing.

The truth is, though, I still feel more anxious and worried and sad than I did before Clio’s seizure episode. It has made me / her feel more vulnerable. Since my panic attack, I’ve had two dreams where I’m the one who has cancer. (Paging Dr. Jung….) And her new treatment protocol is challenging as well — more intense, more time consuming. So. There’s still a lot. A lot.

Now.  When do we get to go to f**ing Disney World?