Saturday, October 01, 2016
-- Mr F has been having a bad time again
-- I have been tired
Those two things are hand-in-hand, really, so a bit about them.
Mr F had a relapse of sleeping, or not sleeping, to be more precise. Starting about 10 days ago, he began having more and more trouble going to sleep, and even though we were tough-loving it and making him stay in there it was troublesome, because he would pound on the door and wake up Mr Bunches, and then twice he wet the bed too, and we couldn't tell if he simply couldn't hold it or if it was a protest (which he's done in the past.)(I'm going to point out that on both occasions he'd been taken to the bathroom just prior to bed and hadn't gone).
Then, while we were trying to figure out that, Mr F also developed tics again. The last time he had any bad tics was something like a year or two ago, when he spent the week doing involuntary eye-rolls, up and to the right, every 7-10 seconds. The neurologist said that there wasn't really a treatment for them that was necessary, especially because they'd abated by the time he got in to see a doctor about them.
Over the summer, he developed a tic of a sort of a rhythmic breathing, a kind of three-quick-inhales-two-puffs out, over and over, but that went away after a few days each time. The doctors figured it was a reaction to stressors in his life. What stresses him out? Everything, maybe.
This time around, the tics are much worse. MUCH. He has them all over: his legs jerk, his arms jerk, his head snaps back, he inhales, his chest clenches.
He started this past Sunday night. He'd been sort of restless and edgy Sunday afternoon, and kept it up even after I'd taken him out to ride his Green Machine down the hill a bunch of times. So he and I and Mr Bunches went for a walk around the block to help burn off some steam, as I like to say, before bed. During the walk he started getting tics and by the time he went to bed they were full force.
They've not gone away since, going on 5 full days now. We took him to the pediatrician, who prescribed a very mild sedative. "It won't stop the tics," he said, "But it might help with any underlying anxiety." We'd decided that maybe this was more stress, or anxiety, because Mr Bunches is an anxious kid, so why wouldn't Mr F be, too?
A kid who doesn't talk is hard to pin down. We get so much information from people by talking, by the tone of their voice, by the words they use or don't use. Try spending a day communicating without using words at all, no mouthing words or writing them or pantomiming: all you can do is point and pull. That's how Mr F talks.
When someone's quiet, you tend to think there's nothing wrong with them. Anxious people cry or tell you they are upset or ask a lot of questions. Mr F sits quietly, about 90% of time time, and then explodes into a reaction of one sort or another: laughing or crying or running from room to room or something. He might mix those in with each other, so it's hard to tell what is on his mind. But just sitting and not talking? That might be that he's content. Or it might be that he's suffering crippling anxiety and is off in his corner because everything's got him upset.
He does get some things through, if you pay attention. We've realized he's afraid of the dark: he wouldn't come near the stairs at one point, where I was sitting, because I didn't have the stairway light on and it was night so the stairs and upstairs hall were shrouded in darkness. When I turned on the light he came right over. He sometimes panics when he does something he doesn't understand on the computer, like opening a new tab accidentally so the video he's watching is still playing but he can't see it. We know these things, which in the ocean of information you usually know about a person, is like trying to guess what a book is about by being shown two random paragraphs.
We made an appointment with the neurologist. We called on the 27th, with a referral from the regular doc. The neurologist couldn't see him until October 10th.
"Don't you have anything sooner?" Sweetie asked.
"It's only about a week and a half away," the nurse said.
I didn't point out that we were calling at 2 pm to set up an appointment for 2:30 pm 13 days from now, which made it far closer to two weeks than 1 1/2 weeks.
When Mr F rides in the car with me at night his he sometimes leans on my shoulder when he gets tired, and I can feel his arm jerking back and forth. I try to tell him some things to help. If you can just relax, I say, you'll go to sleep. People don't have tics in their sleep; a tic is your body's voluntary reaction to an involuntary stimulus. To feel what a tic is like, try not to blink for as long as you can: that's a tic, when you finally blink. Telling someone to relax is never helpful. If a person needs to be told to relax, they are probably in a situation where they cannot easily relax. Telling Mr F to relax is worse; we don't even know if that's the problem.
Mr F and I listened to Regional Office on audiobook on our rides, before the tics started. The book is about a place called "The Regional Office," a sort of shadowy organization that recruits superpowered women to fight various forces of evil. The book, as it suggests, is about an attack on the Regional Office, and the story begins with the attack, and then jumps back and forth to the start of the Office, the history of various important characters in the book, and the actual attack.
It's a pretty good book -- funny at times, thoughtful at times -- that sort of reminded me of Nick Harkaway-light, a book that manages to take some fairly serious and sometimes grim or gruesome or frightening scenes and make them feel almost lighthearted. It's got a quirky feel to it, almost, but not in an annoying way.
It's in the same vein as Soon I Will Be Invincible or The Rook: the 'what if superheroes were just sort of here and nobody made a big deal of it' line of fiction, but doesn't get as detailed or weighty as either of those books, while still not shying away from the sorts of themes all superhero stories seem to trade in.
What I kept thinking as we listened to the book is that the underlying theme really was that being a superhero, and the kind of life having superpowers would lead you to have, aren't that great. Lots of the women in the book are troubled in one way or the other, and it's not clear, really, who is good and who is evil; sometimes the same people seem to be both. That shifting sense of morality makes it hard to root for or against a side, an ambiguity which works well in the book.
The characters are troubled by their powers and how because of them, they are set aside from the rest of the world, at times, even as they take the powers for granted or revel in them. They're people like anyone else, people who want connections and interesting lives and work that means something. They have complex motivations that can't be figured out: Sarah, one of the main characters, gets a series of truths revealed to her about her connection to the Regional Office, and how she reacts to that, and to the attack, and to her life, is somehow inexplicably perfect in its inexplicable imperfection: nothing she does really makes sense if you were trying to create a linear person, a literary character who reacts to things in the way literary characters react, but Sarah (and the others) feel a bit more real than a typical literary character: the book keeps caroming off into unexpected directions, feelings that don't usually crop up in superhero stories about attacks on skyscrapers in Manhattan.
Mr F and I finished Regional Office about a day or two before his tics started, before his bad week this week left everyone feeling drawn and tired as Friday drew near, before Mr F began screaming, sometimes, in frustration as his arms and legs and head involuntarily swing and pull and draw.
Superhero stories are an escape; we dream of people that have greater powers than us and can transform the world, save us from threats that otherwise would be the end of us all. If you ask people what superpower they would like to have, people will tell you they want to fly, or be superstrong, or turn invisible. If you ask them what they would do with that power, they'll say they'd help refugees or foil crimes.
Nobody ever says they want the superpower to cure disease. Nobody would ever use their incredibly powerful armor with supertechnology to take someone for a walk to help them settle down.
It took a week for Mr F and I to listen to the whole Regional Office book, and during that time, we didn't worry about anything. This was, after all, before the tics began, back in the good old days when we were just us. We rode on our nightly rides, listening to cool stories of lasers and robot arms and flying buzzsaws and flamethrowers. We cruised through the college campus and looked out the windows and watched fall become its own season as summer faded away.
In superhero stories, there is always a moment where you can't go back. In Regional Office, there is a character, Henry, who hits just such a moment (I won't tell you what it is.) For Spiderman, it was when the thief he could have stopped killed Uncle Ben. For Batman it was when his parents were shot. There comes a time in every superhero story when the path ahead is opened and the past behind is closed off forever, and a life, or lives, have changed.
What would it be like, if you were Spiderman, or Batman, if you knew you had this power? Could you ever relax, truly? Every moment that you spent sitting around playing video games or reading or just spending extra time in the shower, someone might be dying out there and you could have saved them. Even worse, what would it be like to realize that no matter how much you did, people were still going to die? You couldn't be on duty 24 hours a day. Somewhere, sometime, would come a thing you wished you could have helped with, but couldn't do it.
That's the real no-turning-back point in superhero stories, I think: the point where a hero realizes that this is his or her life from now on, that every moment spent not saving someone comes with a cost, when the number of things that you haven't done begins to pile up. Superman and Batman in their fortresses have trophies of their victories. Mr Incredible has his little home office with letters from kids on the wall.
Nobody has a room in which they commemorate the dam they didn't get to in time, the train that jumped the tracks in India while they were in England. Nobody wants to walk past a room where the closed door is a reminder of all the things you couldn't do.
In Regional Office, some of the characters seem to realize this (and some seem to embody it), this principal that being given the power to do something means that you can never again not do something; and, equally, being put in the position of having to do something imposes a similar burden. If I came to you and said from here on out, you are the heart surgeon in town; someone gets a heart attack, you have to save them, you might rail against your fate and say you're not qualified and you don't want this burden -- but when someone starts having a heart attack, it's your job to do it, and if you don't, it will wear on you. Even if you didn't ask for the position, even if you don't really know what to do: it's now your job.
Would you make that trade? Would I? Would you want to have superpowers, to be superstrong, to be superfast, to be able to fly or change elements by waving your hand, if it meant that you would never truly be free to not do that? If it meant that you had to try to do something, every time, regardless of whether or not you were even capable of fixing it? In Regional Office, one of the characters, Rose, is plucked off the streets to become a superpowered assassin and attack the Regional Office; later on, she complains that this robbed her of the life she was supposed to have -- but forgets that she wanted to come, wanted to escape her life, tried to have the superlife that she says was forced on her.
Nobody can impose that kind of burden on a person from outside. We can only impose it on ourselves. In superhero stories, sometimes, a radioactive spider or a bolt of lightning in a lab creates the power, but it is always the hero's conscience that imposes the duty.
I watched Mr F last night, as we drove listening to our new book. He stared straight ahead blankly. He had his three forks, his tappers, in his left hand. His arm jerked involuntarily and one fork fell to the floor of the car. He looked down at it, and then just tiredly looked back up. His arm jerked again. When we came to a red light, I leaned over and handed him his fork. A few minutes later, it fell again when his arm jerked again.
What if, I wondered, he's like this all his life? What if these never stop this time? One of the scariest stories I ever heard, and it was true, was a man who had the hiccups for decades. He had to eat all his meals liquified, because he couldn't chew and swallow easily. He got the hiccups one time and they stayed.
What if Mr F can never sit and relax? I wondered. By then we were driving around the Capitol, and heading back home, the ride half-over. We didn't know what had set off this latest round of tics, and didn't know how long they would last or how bad they might get. We don't know anything about them, except that they are there, and they are causing Mr F distress. We took him to the doctor. We give him his medicine. We make new appointments. We try to help him calm down. His head jerks to the side, his arm flutters, his legs kick, and we drive on through the night.
Once, on a road trip, we asked each other what superpower we'd like. The Boy said he'd want superstrength. I said I would probably want to be invulnerable. Sweetie said she'd like to be able to read minds.
"Why?" we asked her.
"Because then I could read Mr F's mind and know what he's thinking," she said.
Last night, when we were almost home, Mr F's arm jerked so hard it shook him. He leaned over and hit his head over and over, and I got my hand in between his fist and his forehead so I could take the brunt of it. It hurt; he weighs 140 pounds, much of it muscle. Invulnerability would sure have helped, but I wished for a different superpower right then.
"I wish I could trade with you," I said, "And I'd take the tics."
I couldn't do that. All I could do was put him to bed, check on him whenever he knocked, get him his goldfish crackers at 11:30, try to help him relax, and then lay in my own bedroom, thinking about all the things that lay behind that closed door down the hall, all the things I can't change.