Day 1,687: Hands

I've written about my son's night terrors before, and about how bad they were while I was doing chemo the second time. Within a few months of me finishing treatment, they all but vanished. He sometimes has bad dreams, and he's started to get what seemed like a terror one or two times and we've been able to nip it in the bud before it happened.

When I was nine, I had night terrors. It was at that specific time in my life, following my car accident, when I was confronted with death and my own mortality and I didn't know what to make of it. I have no memory of having disturbing dreams. I was actually terrified of sleeping. I must have been thinking what Augie once vocalized to us in a half-sleep at the end of a particularly brutal night terror:

I'm afraid that if I'm sleeping, I won't ever wake up. I'm afraid that when I'm awake I'm actually asleep.

And he was saying, I'm afraid this isn't real. I'm afraid that the line between sleep and wake, real and fantasy, life and death, is too thin and transitory. I'm afraid of the things I know in my brain that no one talks about in regular life.

It's that blurring, that glimpse, that is terrifying. With night terrors, we have a little bit of an ability to say that because the bad things happen when the person is technically asleep, the thoughts are not, well...real. That is somewhat comforting when your four year old flies into a violent rage with his eyes wide open and begins screaming in a nonsense language and pointing at demons that only he can see.

It's somewhat comforting, but not entirely comforting.

I had almost forgotten how witnessing those terrors made me feel--helpless, and so sorry for him, and sad that he was thinking about things bigger than his life and outside of his control. Empathy too, and understanding.

I understood.





But time passes and fills with things that aren't the hardest things because that is one of the incredible things about life. And so we found ourselves in Texas over spring break, driving to my brother's school from Dinosaur Valley State Park, where you can walk in a dried up river through 100 million year old dinosaur footprints. This was just a few weeks ago and I've been wanting to write about it, but it seemed such a small thing, and I thought it wasn't too important.

Augie fell asleep in the car. He stopped napping years ago, but car rides still have that effect on him, especially after such a long day of hiking in the sun. We got lost due to a road closure and a detour that didn't turn out as straightforward as we expected. Soon after we found ourselves on the right road, Augie woke up--or so we thought. His eyes opened wide. He sat there for a minute looking stunned. And then he started to cry.

Hey Aug, what's wrong? You just woke up, we'll be there soon.

NO! MY HANDS! CAN'T YOU SEE MY HANDS?! LOOK WHAT THEY DO WHEN YOU'RE DRIVING THE CAR! CAN'T YOU SEE? YOU DON'T KNOW WHAT IT'S LIKE! MY HANDS! WHAT IS HAPPENING TO MY HANDS!

Gabe looked at me as if to say, shit. should I pull over? Lenny tried to talk rationally to him. Augie, your hands aren't doing anything. They look totally normal.

He was inconsolable.

I told him he would be fine, go back to sleep. I told Lenny he was having a night terror. We let him cry. He looked absolutely lucid and wide awake. He spoke in perfect sentences. He was looking at his hands and seeing something that we didn't see.

Later, we asked him about it. He pretended to remember and say that his hands were shaking from the car. Of course he had no idea what had happened; he was just trying to play it off like it was normal.

We can tell ourselves he was sleeping. We can discuss in whispers whether that qualified as a hallucination instead. We can worry that there is something going on there that is more than the subconscious overworking itself in sleep.

It's hard to see something like that in such a little kid. It's even harder when your other little kid witnesses it. She usually slept through his night terrors, even the terrible ones when he was screaming and running and slamming doors. But I learned something from this small moment.

My daughter did not know he was "sleeping." She assumed that he really thought something was happening to his hands. She was very calm in trying to talk him down--and my kids fight and yell at each other all the time. She was patiently trying to explain, and then realized it wasn't working, so she talked to him about something else. Once he went back to sleep, we explained to her that he was probably having a night terror. She didn't seem fazed, or judgmental. The fact that her brother was hallucinating right in front of her (she, again, must have thought that's what was happening) made her feel kind of sad and scared for him, but not for herself.

Like I said, it's a small story. I don't know that it means anything at all.

But it's hard to see something like that in such a little kid. He was awake but asleep, in our world but not of it, straddling the line between what is real and what is not, and he was trying to tell us something. It was required of us to pretend we didn't know what he was trying to tell us. We have each other, and another child, to think of, to spare.

But I thought it all the same. Oh honey, I know. Look at your hands. Look at all that flesh and blood and muscle, moving and grasping and warm. Cry out from the shock of it, how quickly they go cold, and turn to nothing but bones. I know.

Day 1,678: The Lucky Dozen

Twelve years ago today, I met a guy. When this all started, we were 27 years old. I felt old, like I'd already lived a hundred lifetimes. I hadn't been married but had had several serious relationships, including one that lasted more than six years and seemed like a first marriage. He was trying his hand at being young and carefree and wasn't all that good at it. He had only had one serious relationship before in his life. We were so different, in ways seemingly opposite of how men and women are expected to be different. I was pretty sure he wasn't my type, even though I didn't have a type. There was a messy love triangle that summer that left me feeling emotionally spent; he didn't even know it was an issue. I've given the facts before, down to the absurd marriage proposal. I may or may not have recounted the fact that we almost got divorced within six months of getting married because he felt such pressure related to doing something he didn't understand. Our childhoods caught up with us, or maybe they brought us together.

He knew he wanted to marry me when I said the wrong thing, the inappropriately nerdy, non-romantic thing about orbital motion when we should have been basking in the romantic glow of that glorious beach sunset. I knew I wanted to marry him months later, when he helped carry my grandfather's casket because the originally-scheduled pallbearer didn't show up. He had never met my grandfather; in fact, my grandfather died the day I intended to introduce him to my boyfriend. Other people have rainstorms and never falling asleep and Paris; we have physics and funerals.

I guess it all makes sense, come to think of it.



A lot of things have happened.

Things happened slowly and all at once and within three years of knowing each other we were married with a baby and a house, having sold the condo I'd bought as an independent 25 year old. That is the kind of thing that people say when they try to explain how things were. But that doesn't really explain anything. Twelve years with a person cannot be boiled down to the things you did together, the houses, the babies, the jobs, the friends. Twelve years together is a long time and a short time. For everyone, the years fly by but are filled with tiny moments.

For us, the time was cut in half.

How could I know at 27 that at 39 I would be with a man who would have spent almost half his years with me as a person with cancer? One minute, we were young parents of two small children, including a nursing infant, and then...we were still those people, but one of us had an aggressive form of cancer and the other had to deal with that fact. And then, we had to deal with it again. We never saw that coming; no one ever does.

Did he love my long red hair, my two perky breasts, my health and assumed longevity, my impressive memory and manic energy? I suppose he did. But he loved me more. And whatever I was, was something I still am. He doesn't seem to think I have changed, at least not in ways that are important.

I've said before that I think love is a decision. It is that more than it is anything. No one can talk you into it, and no one can talk you out of it. But love has forms, and the forms change. Loving a lover who has been brought to a place where she seems a ghost of herself must teach you something. I think of how having children has enabled me to see everyone in the world as a child--including myself, and my husband, and my friends and old lovers and people's parents and everyone. I think about people as children and the shit that happened to them and I imagine how it should have been different because I know that I would have done things differently if I'd been in charge.

Seeing someone see me lose so many things and decide I hadn't lost anything important has taught me things about grace. Most of the time, it is possible to float through life without having to break things down to the lowest common denominator. For us, at some point, shit got real. He stopped caring that I am demanding and difficult and I stopped caring that he is dramatic and ridiculous. We stopped trying to change each other or ourselves and realized that we are glad to have found each other and to still be here. We fell in love with each other when we were young and healthy. We did not learn how to love each other better by growing older and facing death. We did not become stronger because of cancer, but we got to a point where we could compare the problems of marriage and work and family to the problems of life and death and make decisions on that basis.

It took years for Gabe to admit to me that he never sleeps inside our bed, in the comfort of the sheets and blankets, when I travel for work. He sleeps on top of the bed, lying horizontally across the comforter, or on the couch, or in the guest room. But he feels strange sleeping in the bed when I'm not there. Ten years ago, that would have seemed melodramatic to me.

I get it now.

He's seen that bed without me in it. He saw it years before the possibility became tangible, but it took cancer to bring the admission out of him. Since we stopped worrying about how it might sound, we have said crazy things to each other.

Me: I don't know why I love you, what business is it of yours? Just believe me.

Him: They could cut off your head and put it in a jar and as long as I could still talk to you, I'd be ok.

We've seen a lot of things in a lot of places. But I still haven't seen a sunset quite like that one in Barraboo, Wisconsin, over Devil's Lake, when I was 27 and he was newly 28.

Oh, who am I kidding? Of course I have. We have both been seeing that sunset all our lives, and that's how we've managed to remain who we are.

Twelve years ago today, I met a guy.

Day 1,668: An Ode to ChemoBrain

It's national poetry month and I'm supposed to be writing a poem a day. But I've never done what I am "supposed" to do, so I wrote the following, which isn't so much of a poem as it is one of the only things I've ever been able to say about the chemobrain that crept up on me and then exploded on me and then left me just like that. I had chemobrain whiplash. So I wrote a little something about that. I haven't had much of a mind for writing this blog lately--it's been almost five years, folks. Five. Maybe I'm just trying to wrap my non-chemo brain around that. Cheers to poetry.

Lists

by Katy Jacob

Post-it notes replaced my memory.
I had multitasking down to a science,
but science had other ideas for me.
I didn’t see it coming.
I don’t remember when I could no longer read,
but that’s the whole point—I don’t remember.
Memory was one of my best things.
Losing a best thing makes you feel lost.
For a time, I tried to replace it with something
that seemed adequate but was actually worse than nothing,
the way all rebounding love affairs are.

I couldn’t bring myself to number them
or use bullet points or dashes.
I wrote horizontally and haphazardly out of defiance
against the clean, vertical columns that
oncologists assured me would help.
I wrote lists of names and lists of lists.

And, I had my affairs in secret, kept the children’s
and young adult books hidden from the public eye
ashamed not of enjoying their content,
but of being reduced to tolerating their lesser natures.
At 38, I was meant for sophisticated lovers,
not hard bodies who cut to the quick
and didn’t mind if I needed to read
the same passage again and again and again.
I was supposed to have wisdom to impart,
but I couldn’t remember what it was.

Then, it happened. I had another first time.
More than 20 years later, it was just like I remembered:
Easy and surprising and fun and all-encompassing.
It was something I must have always known how to do
and could never, ever forget. How is it possible to forget?
I became addicted, which is so much different than love.
I read books like nothing else mattered,
like there wasn’t work to do or kids to raise
or actual love to get lost in.
Every book I finished, every name or task I kept in my head
was a conquest I didn’t tire of owning.
I couldn’t get enough.

We all have moments we recognize for being what they are.
I was stealing passages of a novel (or is the right word devouring? Deflowering?)
when I should have been doing something else,
and the sun was cold but bright on the wood of my desk.
The sunbeam picked up flecks of pastel
that were hidden underneath my laptop.
I dug them out, and there were so many of them.
Words upon words, messy and juvenile.
I couldn’t help but smile, close the book, get back to work.
My exes were teaching me a lesson.

Once, everything I needed to know
was written haphazardly on stacks of paper
stuck together with safety adhesive.
Once, the world was that small, that finite.
That’s how all good love affairs leave us:
with the most important words
imprinted forever in muted shades
as the memories we’d like to keep.
Our very best things, messy and frantic
in their stubborn squares of yellow, pink, and blue.