Bear woke up at 2 am. “It’s burning hot in here,” he said. “I have to turn on the air conditioner.” The giant floor unit wheezed to life as he fiddled with it.
“I have to open a window,” he said.
I was barely awake. “Just not too much,” I mumbled. “Minute…” I didn’t want the cat to jump out the window. Do cats even do that?
Bear was lumbering around, sleep-haired and bleary-eyed. “I need cold water,” he said. “I need really cold water.”
“OK, honey, OK,” I said, pulling myself out of bed. “There’s water on the counter.”
“I need it to be COLD.” He sounded desperate.
“There’s ice in the freezer…”
He was already opening a bottle of fizzy water, and I knew it would spray everywhere, because the last one had. “Wai–” I said. It exploded. He jumped back, making a furious sound.
Great. Here it comes.
“Why can NOTHING go right?” he cried. “Why is everything terrible?”
Yup. There it is. Bear’s blood sugar was high. It had been high all evening, and it wasn’t going down. He had already worked out, which usually helps keep it even. He had not eaten any carbs. We’d had chili and buffalo chicken thighs and baby bok choy for dinner. Maybe he’d just eaten too much of everything. Maybe his pump wasn’t working again. Sometimes the catheter is twisted a little and the insulin can’t flow into him the way it’s supposed to. Maybe he was getting a stealthy cold– that makes his blood sugar crazy even when he doesn’t get other symptoms.
Bear went back into the bedroom. The door slammed. I stood in the kitchen in my underwear. I looked around. It was a mess. I started cleaning. Minute, the tiny golden cat, was mewing and weaving all over the place. She had been knocking things over since we went to bed. She was having a very enthusiastic night, tinged with franticness. She jumped up on the counter, where she was not supposed to be. I ignored her. Bear says I’m really bad at discipline. I don’t like yelling at her.
“This is how you’re going to be with our kids,” he says.
“No!” I protest. And then, “Maybe. I don’t want to yell at our kids.”
The counter was a disaster. Dirty dishes spilled out of the sink. Another light was out above. It’s a different one every day. I moved slowly, putting things away. Mew mew. Minute wanted chicken. She is obsessed with chicken. She doesn’t like cat food. SHE WANTS CHICKEN. It’s a good thing I’m always making chicken.
“Don’t make it just for her,” Bear always says.
“I wouldn’t do that!” I say. I never do. But I make her her own piece when I make us some.
“Kate!” came Bear’s muffled voice from the bedroom. I almost didn’t hear it.
I go in. He’s sprawled on the bed.
“I need you,” he says. “I feel so sick. I’m so hot. I need your support. I need you to be sweet to me.”
I get into bed and hug him. I stroke his sweaty head. He’s so miserable. His cute face is scrunched up.
“I’m so thirsty,” he says. “I’m so thirsty.”
(I wish I could give him this. source)
(and this. But really I just want someone to cure this damn disease. source)
“Do you want more water?”
“My stomach is full of water. I can’t drink any more. It’s my blood sugar. I have to wait.”
“Can you tell me a story?”
I tell him a story about a young man growing up in a tiny cow-herding village at the foot of a great mountain range. Past the ancient forest, deep in the mountains, there are dragons. The king, who lives far away in a glittering white marble palace at the edge of the deepest, clearest lake in the land, has sent his best huntsmen to kill a dragon and bring back its head for his wall. But the young man, Finn, thinks that dragons shouldn’t be killed. Sometimes he hears them singing in the night– keening, mournful song that seems to be their form of communication. Sometimes he wonders if they’re trying to talk to him. All Finn’s life, he’s loved Kaeli, the beautiful golden-haired girl who the other two young village men of his age also love. But when he ventures into the ancient forest on his manhood quest, which he has decided will involve meeting the dragons, he meets another young woman– one with a bow and arrow and a scowl, who warns him to turn back. Who tells him that she has already met the dragons and they want nothing to do with him. Her name is Brellen, and she will be the beginning of Finn’s great adventure.
“Don’t talk about the lake,” Bear mutters. “It makes me more thirsty.”
But he relaxes. And eventually, he’s bored of the story.
“To be continued,” I say. I am really tired. It’s after 3 am. I try to roll over.
“Please don’t fall asleep,” says Bear. “I need you to stay with me.” He flips me back over.
At least he hasn’t said the other thing he says when his blood sugar goes too high at night, too many days in a row. The other thing he says is “I’m killing myself.” His voice is always tight with frustration when he says it. It’s always his fault. His fault that he’s not being better at managing the disease. Even though he works out nearly every day– has cut carbs out of his diet completely, and has to constantly test and regulate his blood sugar. It’s nonstop. If he slips up. If he’s in a meeting for too long and forgets to test. If he gets too hungry. If he eats too many snacks. It is never ending. And then there’s all of this horrible, threatening looming stuff– the dark consequence of too many mundane mistakes– permanent nerve damage from consistently high blood sugar over a period of many years. Heart problems. Organ– I don’t want to think about it.
The first time he said “I’m killing myself,” with that fear and anger in his voice, I cried. Now I try to push the words away. He’s just upset. He gets irrational when his blood sugar is high. He gets paranoid. Those are common symptoms of high blood sugar. My dad was even worse.
But even now, when I see him suffering, in the middle of the night, suddenly everything is fragile. This life we’re building– so much of it depends on us being able to be healthy enough to participate in it. And his illness is always there. Sometimes it’s in the background. Sometimes it’s lying in bed with us, throttling him, driving him insane.
“Please don’t fall asleep,” Bear says again.
“I won’t,” I promise.
And so I stay up. Until eventually we can turn off the blasting air conditioner. It’s freezing in the bedroom by then.
Until Bear can finally fall asleep.
* * *
Anyone else living with someone with a chronic illness? I know some of you have chronic illnesses yourself. I wonder how you think about your illness in terms of your relationships with other people?
Unroast: Today I love the way my hair, growing shaggy now, has formed a mane. I am lion girl!!
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