“I’m hoping that if I leave no star rating it won’t affect the overall rating of this book. Honestly, it’s my preference not to give a star rating for this one.
I have no real earthly idea how a person would workshop or edit something like this. This, the story of a baby born so severely brain damaged that the parents choose to let him die. The loss in the book only begins there. How do you work with this book, the prose or the choices made, how do you make criticisms about what happens without feeling like you’re making critiques of what happened?
This is why it’s dangerous to write books like this, I think. By “dangerous” I don’t mean “unwise.” I just mean that you’d have to be able to separate yourself from it in some way without feeling like you’re at a distance. You have to write as you, but also not.
The book does have a lot to say about the right to die, and the right to let your child die. I’m not really interested in getting into it because, well, I have my opinions and I would be very surprised if a book changed those opinions. Yes, miracles happen and people recover. But as the book says, nobody reports the story on the news that goes, “Guy who was in coma for 3 years dies.” Or, “Baby who was not expected to live 3 months doesn’t.” For me, it’s the ultimate in Judge Not Lets Blah Blah Blah situations. If each person is a beautiful miracle, then each person is going to have their own experiences, preferences, and decisions.
It’s my strong belief that we’d be a lot better off if we stopped trying to legislate or law-ify end-of-life decisions and instead worked on creating the support systems that allow people to make their own decisions and then help them and their loved ones through assistive services and counseling.
And for the love of fuck, make a will. The kind that tells people what to do if you’re in a coma for ten years.
The book also says that some people are creating these sorts of documents for their unborn children as well, as a precaution if something happens. Let’s face it, if you get most of the way there and suddenly find out things have gone awry, are you going to be clearheaded and ready to make that decision? It’s a bit morbid. But a tool that people use to take your decision-making away from you will always be “She is in no condition to make that kind of choice right now.” You can hang on to that power if you plan ahead a bit, and you can reassure yourself if you can look back at your feelings from a time when you were of sound mind and body.
There is one other thing.
Something about me, making jokes has been my defense for a long, long time. It’s a natural thing, I think. I wasn’t ever a big guy or talented in any sort of way that would set me apart. And honestly, the best way I found to defuse getting picked on when I was younger was to say something better and meaner than the person picking on me. Plus, I think that if you don’t take yourself seriously, it’s harder for people to make fun of you. It’s hard for someone to give you a hard time about your car being a piece of shit when you’ve already said it, and said it better.
So in that way, jokes were always a defense. And a bit of a weapon.
Whenever I felt things getting serious, I’d make a joke. To lighten the mood. For a long time, I thought this was the right thing to do because, well, I didn’t really want to be a part of anyone’s heavy stuff.
What happens, though, is that sometimes other people need you to be part of their heavy stuff. And if you beg off with a joke, that hurts.
Reading this book brought me back to one of those times. In the book, the author is pretty unforgiving of some people and the way the act and react towards the birth and brief life of Silvan. I’m not passing judgment on how she feels, felt, or would repeat the same things. The book, its strength definitely comes in its honesty, and she lays out her feelings whether they are fair or not and doesn’t spend a lot of time saying, “In the moment it was this way, now it’s that way.”
It got me wondering, thinking that in these intense types of things, people probably hold a grudge. Rightly so.
A few years ago someone I consider a friend had a tough situation. I didn’t really know about it, didn’t talk to her directly about it. But the topic came up. In relation to electronic candles of all things.
I’d never even heard of electronic candles. The idea was a complete mystery to me. They even smelled like vanilla candles, the real kind.
She’d been through something tough. And I didn’t really know, but it’s not a good excuse for the fact that I made a joke about it. A bad one. A tasteless one.
There’s a lot of discussion about what kind of jokes are okay and what aren’t. About whether intent matters or not. Can I make a rape joke? Can I make a Holocaust joke? That kind of stuff.
Intent does matter to me. Because when I make the wrong kind of joke, it helps me when I’m in bed and not sleeping to be able to honestly think, “I didn’t mean to hurt anyone.” The intent thing doesn’t usually help the person who was hurt, but it helps me, so I have to maintain that it matters.
I can make whatever kind of joke I want. As long as I’m up to facing the consequences of that joke.
If I can make a joke and feel that someone was overly or irrationally mad about it, it’s easier to get over it. Again, not EASY. I spend a lot of time replaying conversations in my mind. Even the ones where someone misheard me or didn’t get me, I blame myself for those. So the ones where they understood and were hurt, those are agonizing.
But as jokes go, they can’t be about making sure they don’t hurt anyone’s feelings. Anything you do, whether it’s joking or writing or drawing, you’ll never be able to do it if you’re always thinking about whether or not it might hurt someone else. If you write with your family and friends and teachers and the guy across from you at the coffee shop all deciding what’s okay, it’s not your work anymore, not your voice. It’s theirs.
After reading this book, after thinking about that time and those electronic candles that smelled like real vanilla candles, I did decide on the one kind of joke I won’t tell. The kind of joke that’s for getting out of heavy stuff. The kind of joke that wants to come busting out whenever I get involved in something serious, someone sad or very happy or proud or feeling something that’s hard to rank and qualify. The kind of joke that’s shoots out as a defense against being a real person.
That’s the kind of joke that I’m removing from my repertoire.
And to that person with the fake candles that smelled like real vanilla, I’m very, very sorry.”