(Okay, sorry, it’s been a long time but I knew this post needed to be next and it was really hard to think clearly about. For reasons that will become very clear. This post won’t be a happy one, I wager.)
There’s a chair, a table. The table has three prescription bottles on it. The chair is draped with colorful striped fabric. She enters the screen, sits calmly, and smiles warmly at the camera. She picks up one of the bottles.
“I got my prescription today, to end my life when I see fit.”
She says it with a little difficulty, but it’s ALS, not emotion, that makes it hard to talk. She’s calm. Confident that she’s made the right choice. Beautiful. She explains she’s not going to take it, not today, because life is still too good. She thanks everyone for supporting her decision to choose. She has bulbar onset ALS and while she’s lost the ability to swallow anything, she can still speak; which is good, she says, because she has a lot to say. She puts the bottle on the table, and she tells her viewers how much she loves them all.
She glances at the prescription bottle on the table, almost lovingly, and faces the camera. Her warm smile brightens her face again, she is serene. “It’s a good life,” she says. “Live it.”
Assisted suicide. Death with Dignity. Voluntary Euthanasia. It’s an extraordinarily controversial topic. It’s something I’ve had strong opinions on ever since I heard of Dr. Kevorkian. It’s something I’ve thought about a lot since ALS became a possibility for me, and it’s been on my mind almost every day lately thanks to Brittany Maynard.
If you’re not familiar, congratulations, you’re probably one of the five people who’ve escaped this story. You can read it here. The short version is, she was diagnosed at 29 with terminal brain cancer, was told she had months to live and an excruciating death waiting for her. So she chose to end her life under her own terms. She openly talked about how she would do it, and knew exactly when. November 1st, she took her medication and died.
It’s polarized the world it seems. Everyone has an opinion. She had the right, she did not. She was choosing to die with grace, she was a coward committing suicide. She was strong and brave, she was thwarting God’s plan for her. Opinions were very strong, debates were very heated, and theoretical relatives were killed daily in debate, by agonized suffering or suicide, and everyone thinks they know what is best. And everyone – EVERYONE – had something to say about it.
And maybe some day someone close to you will need to decide on this option. Maybe an aunt with cancer. A father who gets into a terrible accident with injuries incompatible with life. Or God help them, someone with ALS. If they live in a select handful of places, they will have this option to choose. They will have this conversation several times with a medical professional. And if they choose to die, they will pay an obscene amount of money for a prescription to die, because it is OH MY GOD EXPENSIVE and insurance will not cover it. (Which is stupid, really, you’d think the insurance company would pay YOU to stop costing them so much.) But they get the prescription, and maybe they take it, maybe they don’t. Whatever side of the fence you’re on, whatever opinion you have on the subject, allow me to make one thing abundantly clear for you.
YOU GET NO FUCKING SAY IN THIS DECISION.
There is no debate. You get to sit the fuck down and shut your face when that person makes that decision. If they ask you how you feel, fine, but know that you do not get ANY fucking say in what they decide. You can have all the arguments in your head that you want. But if someone makes the choice to die, and their doctor agrees? Then it’s done. You have no right to interfere with it. At all. Keep your opinions. Honor their decision. If you disagree, fine, but know that it makes LITERALLY NO DIFFERENCE.
Comfort them in their last hours, support them until their final days, and keep your goddamned opinions to yourself.
I was 24 when Jack Kevorkian came into the public’s eye, when he was arrested and then later sentenced for murder because he’d helped terminally ill people to die. “Voluntary euthanasia” they called it then, in all of the court reports and news articles. Now it’s more bluntly called “assisted suicide”. They mean the same thing, but ‘assisted suicide’ has more of an accusatory feel to it and so that’s what people call it now – because Society Does Not Approve.
“It goes against God’s plan,” is the most used argument against it. “This happened for a reason and you are giving up.”
“It’s Death with Dignity,” is the most used argument for it. “It’s a humane close to an inevitable ending.”
And even then, as these two sides yelled at each other and called each other “murderer” and “sadist”, my 24 year old self thought about it with a calm heart and careful deliberation. “If I were ever in great pain and going to die eventually,” I decided, “I would want to kill myself. I think people should have the right to die on their own terms.”
And my 38 year old self thought about it with the same calm and deliberation. “If this turns out to be ALS,” I decided, “I want that option available to me.”
And my ten-days-away-from-being-39 year old self stared at the carpet for a moment, letting the diagnosis wash over me, and I thought about it with calm and deliberation. ” I’m really, really happy that I live in a state where it’s legal. I need to figure out what is my breaking point so that I can get the process started before it’s too late.”
Spoiler Alert: I’m going to get that prescription. I am very probably going to take it.
And you know what? There’s not a MOTHERFUCKING THING you get to say to me about it. This is MY choice. This is a step *I* will take if I want to. I know what’s best for me. I know how much I can handle. You don’t. And you don’t get to dictate to me when I can die.
I already know how my story ends. I’ve seen the last chapter, and it’s terrible. I want to be able to close the book before it gets that far. It’s a shitty close to a pretty good story, otherwise. “Died happily, surrounded by loved ones” is a much more kickass end chapter than “died slowly, suffocating and starving, languishing in agony at not being able to interact with those she loves while watching them steadily stop coming by and trying to talk to her because it was sad and awkward”.
You DO have the right to think and feel anything that comes your way. Even if it’s the bullshit idea that “this is God’s plan” which I will NEVER, EVER ACCEPT. If it’s in God’s plan that I should die like this, then God is a jerk. I don’t believe God hates me this much; I just believe that shit happens. And this sucks. And it’s no one’s fault. And that’s okay. There doesn’t need to be a plan or a reason for this. But if you feel there’s some proper reason for this, that’s fine.
I would never dictate to you how you should feel. It’s not my right, and not my place. Your opinions and your feelings are as important to you as mine are to me. Even if you disagree with me, it is entirely your right. I might debate you on logic, but I can’t and I won’t debate you on feelings. I respect your right to disagree with my choice, but that does not give you the right to interfere with it.
I would never presume to tell you how to feel, because I can’t know. But I will tell you not to presume to know, because you can’t feel.
You’re even welcome to share your thoughts and feelings with me. Just know that it’s going to make absolutely NO fucking impact on my choice.
I don’t know what my breaking point will be. It sort of shifts around, some days I think I can live with things that I can’t fathom, other days. And it may well turn out that I don’t think it’s really all that bad, even at the end. It’s amazing what you can get used to, if the change is gradual. I may think that spending my entire life having ten minute conversations that consist of three words is okay, that being an active brain in a meat shell completely at the mercy of everyone around me is a perfectly decent way to live.
I currently think I probably want to die before it gets that far. The last thing I want to leave is an impression of being a burden. Even if it’s not true, I know that I will start to feel like people are resenting me for being useless, that they’re tired of me taking so fucking long to get anything across with my stupid little eyegaze tablet. Even if I know it’s not true – and I do, I know that I’m loved and people would happily shoulder me for as long as I need them to – I know I will feel that way. Because I know me better than anyone. And that might be harder to bear than the humiliation of having my diapers changed. That WILL be harder to bear.
Some days I think that my mind is active enough, I’m solitary enough, that I’d probably be okay to be so isolated, as long as I have a sliver of communication.
Some days I think, when I’m no longer able to eat.
Some days I think, when I can no longer breathe on my own.
Some days I don’t think about it at all.
I just know that I need to do it, if I’m going to, before I’m no longer able to do it on my own. You have to do it yourself. And even if it’s someone putting the meds in a feeding tube and putting your hand over the syringe so the weight of your hand pushes the meds into your stomach, it has to be you. Which is right and proper, because I could never ever ask someone, “Will you help kill me?” Even if I have people who love me enough to be willing to go that far to help, I would never ever ask someone to carry that burden. It has to be under my own power.
And it could very well be that I’ll get that prescription and never use it. I’ve been told that many more people get it than use it. And that’s okay. But I want the choice to be mine. And I want that option. I want that right, and that power. That decision belongs to me.
And when I die, be it by time or by chemical, you guys can do whatever you want to celebrate or mourn me; throw a party, get drunk, burn my sticker collection. My funeral will be for you – but my death is all about ME. You can decide to celebrate or curse me however you like when I’m gone, it makes no difference because I’ll be absent. And you can celebrate or curse my choice, and it makes no difference, because you’ll be absent. It’s the last and most intimate experience anyone ever has on this earth, and it’s personal and private. Sacred. No one can encroach on that space. No one should ever think they somehow get the right to think they can tell me how to die.
You only get to decide for yourself whether you take my decision on death with dignity.