About Powerlessness

I miss Laser Cat.

It usually comes over me at bedtime, which was when she’d most often have her bursts of affection. It was easier for her when we were lying down; we were less scary, I think, when we were flat and lower to the ground. She would purr and curl up and push her head into my hand insistently, sometimes for ten or fifteen minutes before she’d give up.

And when my daughter was upset, she would jump up on her bed and purr and allow herself to be hugged and squeezed and all the other things she would angrily refuse at other times.

My daughter misses her a lot. She’s never had an animal love her like that. She’s never loved an animal like that in return.

None of this takes anything away from the kittens. (They are still kittens, despite the fact that Dexter is HUGE and heavy and looks very much like a grown cat.) Pets don’t replace each other. That’s both the pleasure and the pain of them. We are getting to know the kittens, and they are warming up to us as they age and their play changes. They have moments of being affectionate, but fundamentally they sort of breezily coexist with us. They’re happy, and they clearly feel safe with us, which is nice.

But there is still a gaping Laser Cat-sized hole in my heart. I miss Editor Cat, too. But she was older, and had been ill for a long time. Laser Cat was young, and we should have had her for so much longer. The pain of her loss is different.

Time moves one way.

This is a story of powerlessness. It has a happy ending. But while it was happening, I didn’t know that. I only knew it when it was done.

***

Last spring, my daughter casually mentioned, in the middle of another conversation, that she thought she was having seizures, and I had one of those moments where my brain instantly cast around to find some benign explanation for what she was describing. When my brain hit on nothing, the next step was to freeze. I went for casual, because I didn’t want to freak her out. I knew there were all kinds of reasons this might be happening. I knew I couldn’t answer any of her questions, and that we’d have to see a doctor.

I hit the freak-out point around about the time I called her pediatrician. Her pediatrician is lovely, and spoke calmly while I was crying, and gave me a referral to a neurologist’s office.

***

When she was an infant, everybody was talking about SIDS. There’s been some good research on that in recent years, suggesting that serotonin levels are a big risk factor, that babies at higher risk could be identified and monitored. But when my daughter was little, it was only “nothing in the crib, put her on her back, she might die anyway.” She had her own room, and I would get up frequently at night just to listen to her breathing. She was a terrible sleeper, and despite the fact that I was getting two to three hours of sleep in a row, max, I felt somehow safer when she was yelling for food or refusing to settle down. I used to be relieved when she had a cold, because I could hear her snuffling over the baby monitor.

One night when she was five months old, she slept seven hours straight. I slept, too. When I woke up and saw the sunshine I ran into her room in an absolute panic, convinced she had died in the night. But she was fine.

***

The first thing they did for her was an EEG. It was an interesting, albeit tedious, process, and the worst thing about it was that she was only allowed four hours sleep the night before (she needed to doze off during the test). We stayed up until midnight watching movies. Waking up at 4:00 am was less exciting. We watched more movies in the morning. We bought donuts on the way to the hospital. We did what we could to make it fun.

She’s remarkable, my kid. Every parent says that, and for every parent, it’s true. But she really is remarkable.

The next week in the doctor’s office, they showed us the spiky brain waves that meant absence seizures. The doctor was even able to induce one while we watched. Later on, as we drove home, she expressed irritation at that. Her brain was betraying her. That this could happen to her, and she could not even notice while everybody else did, seemed outrageous and unfair.

***

Seizures are actually not uncommon. One in a hundred people in the US is epileptic. I know this for two reasons: one, my daughter had febrile seizures as a child, and I’m a mad Googler when things go wrong; and two, I had to do a PSA poster for a graphic arts class, and I chose to do mine on epilepsy. The only thing I learned that I hadn’t known already was how common it was.

When she started having absence seizures, I learned all the many and varied reasons they can happen, including that wonderful medical catch-all of “Who knows?” Head injuries can cause them (she’s had a concussion). They can be genetic (nobody in the family that we know of). Benign brain lesions can cause them. So can tumors.

***

They scheduled the MRI as a non-urgent procedure. To “rule things out.” There was nothing to suggest that what she was going through was due to a serious brain issue. She had no change in personality, no coordination issues, nothing other than these moments when she’d just go somewhere else.

Throughout it all, I maintained big, cheerful, everything-will-be-fine momness. But my remarkable kid is no fool, and she knows me. She can pick up vibrations in my mood from halfway across the house. There are no false reassurances with this one.

I held her one night, when she was scared. I told her the truth: that odds were there was nothing whatsoever wrong with her. That this procedure would show nothing serious, that they just wanted to know what was going on. That I worried because that was the sort of person I was, but that if we looked at the facts, everything pointed toward her having a fairly common condition that she would most likely grow out of.

We took her to the hospital. We got donuts again that day. They had room to have one parent in with her, and I volunteered. They gave me poorly-fitting salmon-pink scrubs to wear, and I got to sit in a rocking chair while they secured her on the table and explained the machine to her. She had headphones so she could listen to music. She had a panic button that she could press if she freaked out. The machine was massive, and the opening was tiny. I’m claustrophobic, and I don’t think I could have done it. I smiled, and told her it’d be fine, and she could do it, and they slid her in where she couldn’t see me.

She’s a tall kid, but in that machine, she looked tiny.

I tried to read a book. I don’t remember what book it was now. It was good, and it held my attention. I don’t think I’ve picked it up since. Mostly I got used to the rhythm of the incredibly loud noises, and wept in terror. Not of the machine, not of my tiny child in that massive magnet, but of what they might find in her beautiful brain.

When she got out, she told me how close she had come to hitting that panic button. But she didn’t.

***

I got pregnant easily. This is not to say the path toward trying was simple; but once we got there, it was quick. I remember the positive test, and giving my husband a hug, and having this lurching feeling in my stomach like I’d just been locked into a roller coaster and oh God what had I been thinking getting on this thing. I was certain it was what I wanted. I was certain I was not prepared for what was coming.

There is nothing quite as uncompromisingly physical as being pregnant. People call it a miracle, which is a misnomer. Miracles are rare. Pregnancy isn’t rare. But it’s transformative, strange, unsettling, uncomfortable. All of these things, even when it’s desperately wanted.

I was so sure I’d feel less worried about her once she was born. I would be able to see her. I would be able to tell she was all right without waiting for her to kick or for the midwife to pick up her heartbeat. If I could get her safely through the pregnancy, everything would be fine and I could relax.

I was a fool.

***

The strange thing about medical results is that waiting becomes a good thing. When you don’t hear in an hour, you breathe easier. When you don’t hear in a day, your heart rate finally slows down. We didn’t hear and didn’t hear, and thanks to the wonders of the Internet, I was able to see the lab report online in five days, before anyone called me on the phone about it.

There’s one word I remember in the report: “unremarkable.” The MRI was unremarkable. My remarkable girl has an unremarkable brain. No lesions, no tumors.

She was fine. She is fine. She is epileptic, and she is fine.

***

I have trouble with powerlessness. I like to think of myself as rational person, but I’m insanely superstitious. When my daughter was a baby, I would never leave her room at 13 minutes after the hour. I never make jokes about truly awful things, just in case. Every morning, when my daughter gets on the school bus, I wave at her until the bus goes around the corner. I tell people I love them when we part. I hate going to bed angry.

But the truth of it is we are all powerless. There are little things we can control, but there is so much that is arbitrary. When something arbitrary happens to us, we eventually adjust. It’s so much harder when it happens to someone else.

I carried my daughter for 40 weeks and 5 days. I felt like I had control. I could eat right, and take my vitamins, and do all the right things. But even then, there was so much I couldn’t do. I couldn’t affect her genetic makeup. I couldn’t affect how she was growing. I couldn’t affect when I went into labor. I didn’t even have much influence over what happened during her birth. All of that was the alchemy of her chromosomes and the physical interaction between the two of us as she grew. Luck. Luck is just another name for powerlessness.

There are a lot of things in life that result from a web of conscious decisions. Sometimes the result is predictable. Sometimes we can’t see the web unless we’re looking back on things that have already happened. It’s a compelling idea, that if we learn to see the web before it’s complete, if we focus on our own part in it, we can change its shape to whatever we want.

And maybe we could, if we could see. But most of the time the web is too complicated for us to understand, and so much of it is assembled without our input. Powerlessness. We can’t know what steps to take until we see the result, and time moves one way. We have to make the best choices we can in the moment, and we still get it wrong.

This story had a happy ending. It was frightening. I would wish it on nobody. But the end is happy. Even with the powerlessness, I find the future looks happy, too.

But I remember that powerlessness. I remember how it feels to need control, and to not get it. I remember the overwhelming urge to bargain, sacrifice, do anything to take control of the situation, and the profound disorientation of realizing what I needed didn’t matter.

I have this sense that the act of embracing powerlessness would be incredibly freeing, that it would allow us to change our lives in ways we can’t begin to understand now.

But I suspect the truth is we’re all, always, too bound up in the web.