Dignity versus Nobility

It's been a long couple days in front of my computer.

Brittany Maynard chose to end her life on Saturday, surrounded by her loved ones. And as a result, I can't get away from the story.

It's all over facebook (although my friends and acquaintances thankfully have enough tact not to post it directly to my wall). It's all over the radio. It feels like it's everywhere.

A woman with the same brain cancer as my husband, three five years older than he was when he was diagnosed, and three years younger than he is now, ended her life in order to avoid suffering. When I say the same cancer, I mean THE SAME CANCER. The same size tumor. The same location. The same stage.

I've been cautious not to form much of an opinion. I've been careful to remind myself that she is not me, that she is not M, and that she was experiencing grief and fear and the desire to live a beautiful life in her own individual way.

I respect her choice, but as much as I sympathized with her and pitied her and wished for her to control her destiny to the best of her ability, it still enrages me now that she's gone. (Yes, I know, classic stages of grief.)

And here is why- it comes down to the word dignity.

To die with dignity.

I believe it is every person's right. But that word means many things.

M wanted, when he learned his diagnosis (but not his prognosis, mind you), to die with dignity. For him, that meant finding a medical trial to participate in. For him, that meant giving his death, not only his life, meaning.

He said over and over to me, he did not want to be defined by his brain cancer. He didn't want memorial funds in his name to raise funds for brain cancer research. He didn't want grey ribbons on all his friends' car bumpers, or 10Ks, or telethons. He wanted to be remembered for what he did, not what the cancer did to him.

He wanted to be remembered for his work on buildings that would stand for generations. He wanted to be remembered for his sense of humor and his brilliance. He didn't want to be forever associated with a disease. He didn't want to be Lou Gehrig.

He wanted to be himself, in control of himself. Just as Brittany Maynard did.

Only his idea of dying with dignity wasn't completing a bucket list of places to visit and things to see. It was saving other people. It was giving his death to other people, in the form of a medical trial. Of using his death to help understand the cancer, and perhaps keep other people from experiencing the same fate.

This contraption held his head down to a table for treatment.
The marks are for aiming the beams of radiation directly at the tumor.

At the time, the word that came to mind for me was noble. I thought he was unbearably noble. But he didn't see it that way.

For him, it was about dignity. About standing and facing his fate and making something better of it.

In a way, Brittany Maynard did the same thing. Her way of making something better of her death was to try to ensure that all other terminally ill people in the United States have the same option- the die before living is too painful to endure.

I know what kind of pain Brittany Maynard was facing. I know it. In one of her last statements, she said her helicopter flyover of the Grand Canyon was followed by her worst seizure yet.

Seizures are no joke. I know.

But dignity isn't just making sure you avoid pain. Dignity is prioritizing your humanity over your fear.

Yes, the right to die is incredibly important. And of course I have no way of knowing what options for treatment Brittany Maynard had. I don't know if a clinical trial was a possibility for her.

And as I've said a thousand times before, I don't believe that suicide is a selfish act. That Brittany was thinking of others is obvious to me, she made sure to say she hoped her husband would remarry and have children someday. She understood that life goes on for the loved ones of a dying person.

But at twenty nine years old, less than a year younger than me, I wish I could stare her in the eyes before she made the choice NOT to undergo any sort of treatment that would effect her quality of life for those last months, and ask her, "Who are you doing this for?"

I don't know if M's trial is saving any lives. I believe it could. I truly believe it could. It was dangerous, and it was frightening, but it worked.

And if it hadn't, doctors would know going forward what not to do, and why, when another terminally ill patient came along.

So maybe Brittany Maynard died with dignity. Maybe she did.

But maybe that kind of dignity isn't enough. Maybe, for me, death should be about more than dignity. It should be about more than avoiding suffering.

It should be about what you give the world with your life and death.

The OKO Tower, currently under construction in Moscow, and one of the projects M is most proud of.

When you're young, this is a much harder question. In your twenties, what do you really have to contribute to the wealth of human knowledge and understanding and beauty?

As you age though, you give more. You can't help it- living in of itself is giving.

My heart breaks for Brittany Maynard's family. Especially for her husband, who at least got to enjoy marrying the love of his life without the shadow of this prognosis and planned death over his head.

And I know that M is not typical. That his story is profoundly unique. But when I look at him, this man who at twenty four, the day after proposing to me, was diagnosed with the same brain cancer, and has since married and had three children...

I can't help but question the information Ms. Maynard was given. I can't help but question her motives. I can't help but question whether this wasn't about dying with dignity, but making a point.

And I would scream from the mountaintops to anyone else with a stage four, inoperable glioblastoma, "You can have more than dignity! You can be NOBLE!"

Maybe it's just from watching the man I love struggle always for what is best and most right for others, but I would always choose the latter.

Someday, the time may come when M is ready to choose to die. But I know him, and I know he would only ever make that choice if he thought living, under any circumstances, would give no more to the world than it would take from it.

M and his dad watching a pig race with the kids-
seven and a quarter years after being diagnosed with terminal, inoperable brain cancer.

I hope that is an equation that other people suffering from terminal illnesses can consider.



Edit:
In response to the question- what if *I* were diagnosed with a terminal, debilitating illness?
At this point in my life, if it were in fact the same glioblastoma, I might consider planning for a Brittany Maynard-esque death with dignity. Because the process of going through personality changes that might make me angry or even abusive towards my children is something they are not yet old enough to understand. My choice would be based on my desire to cause them the least amount of trauma- leaving them with memories of me intact. Again, the equation would be that living would give no more to the world than dying would take from it. But if faced with a similar illness before I had children or once they were old enough to understand the effects of diseases of the brain, my calculation would probably be different.

Sugar, Spice, and Everything Nice

The is how every episode of The Powerpuff Girls begins.

I'm a huge fan of the show. When it came out, I was already "too old" for cartoons, but thanks to shows like South Park, cartoons were edgier, more interesting, and frankly you could get away with watching them as still see yourself as cool.

I loved the Powerpuff Girls. And I love being able to share them with my kids. Yes, they fall prey to a few of the classic problems that programming for (mostly) little girls share- no mom, for one thing- but the show is so up front with its blatantly feminist agenda, how could I help myself?

In one of my favorite episodes, "Members Only," the girls try to join the Association of World Super Men, and are told, "Shouldn't you be home, learning to be mommies?"

And then when a big, bad, macho jerk form outer space shows up and starts beating up the Super Men, the girls save the day.

I love that. And when I discovered the Powerpuff Girls were available on Netflix? Let's just say it didn't take long for my girls to get WAY more obsessed than I ever was.

So when we started talking Halloween costumes, they made up their mind pretty quick.

And thus, the Powerpuff Girls were born!

These were, without a doubt, some of the easiest costumes I've ever made in my life. I assumed it would be cold on Halloween, this is the midwest after all, so I made them out of microfleece. I added sleeves, because COLD HALLOWEEN is a thing, and I hot glued the eyes to ridiculously cheap sunglasses. I bought a pack of kids sunglasses party favors for a buck, and popped out the lenses. Easy peasy, lemon squeezy!

All that was left was a few accessories. A giant bow and barrette for Blossom (DD), a cheap "flapper" wig for Buttercup (SI), and pigtails for Bubbles (RH).

"So if you're the powerpuff girls, what should Mommy and Daddy be?" I asked.

"Daddy NEEDS to be Professor Utonium!" They said.

Easily done. A lab coat and a bottle of Chemical X later...

"So what about Mommy?"

At first, the girls wanted me to be Mojo Jojo. This made perfect sense to me, as he's kind of THE iconic Powerpuff Girls villain. But no, RH's favorite episode features a villain so sinister, so evil, so scary, so horribly vile that even the utterance of his name strikes fear into the hearts of men. He's known only as HIM, so that's what the kids asked for.

So... who is HIM?

Huffington Post put this best once upon a time, but I'll give you a brief explanation.

HIM is a gender queer devil character in a Santa suit, lobster claws, and kinky boots, who possesses a variety of superpowers and probably could destroy the Powerpuff Girls if he really wanted to.

When the girls asked me to dress up as this particular character, I hesitated. What WOULD the neighbors think? I'm built more like a short, hairy ape, so Mojo Jojo, while being a more complicated costume, certainly had a lot of appeal. But the girls insisted. So...

Without a doubt, that is the most makeup I've ever worn in my life. And I used to perform onstage on a regular basis. At first I was afraid that if I did the makeup, RH would freak out when she saw me. So I made sure to do all the makeup- from the black spray-on hair dye to the ridiculous eyebrows, with an audience.

They were less than helpful.

But I didn't stop there with my costuming insanity. Oh no! I was determined to out-do the Justice League this year. I only home someday I stop doing that to myself. One of these days the kids will want a costume that is just plain beyond me. But since they made it so easy this year, I used Aunt Genocide's suggestion for the trick or treat bags, and kind of one-upped by costume game.

Sugar

Spice

and Everything Nice

I'm really looking forward to using those bags for regular old grocery shopping as the years go by.

Despite having warm, snuggly costumes (and TWO pairs of stockings each, plus undershirts, plus boots instead of their Mary Janes...), the weather was more than the Powerpuff Girls could handle. Half an hour into our trick or treating, it began to hail.

And hail.

And HAIL.

And the wind got so bad we were all being pelted horizontally by nearly white-out hail the size of raisins. All across our neighborhood, trees were uprooted, electrical lines fell, and trick or treaters headed for shelter.

My poor kids, they'd never seen hail before. Let alone been stuck outside in the nastiest, windiest downpouring of the stuff I'd ever seen. They huddled under the cloak I'd worn instead of a coat (I thought it was more HIM's style), and we shuffled to an underpass to wait for M- um,  the Professor, to bring us the car.

Fortunately, the candy was plentiful and survived the ordeal. With bellies full of pizza and the promise they could keep on their costumes as nightgowns (yay fleece!), the children dubbed it the Best Halloween Ever.

So from my family to yours, Happy Halloween!