November 4, 2014

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.

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.


  1. Wow! BM's news shook me a lot and as you wrote you cannot avoid it. It's everywhere. And now your post on top of that. It's just heart wrenching. I will judge anyones decision without being in their shoes -in this case God forbid! - but it just makes me profoundly sad.

    1. It's amazing how strongly we can feel for strangers in situations like this. If only we could take that empathy and bring it through to every other day of our lives.

  2. I feel it is so hard for me to comment here since I am not in this position myself, nor are any of loved ones. I think how your husband has chosen to live his life is not only noble it's inspiring and amazing. And it's what makes him the person you fell in love with. But I do think it's hard to paint someone else's life with the same brush. I would totally want my loved ones to make the same choice your husband has but it's so hard to know what someone else is feeling, even if they have the same exact illness. I think that's why the laws should be changed and people should have more control over their treatment options. Of course this is only my opinion and I more than respect yours. Thank you for your lovely and thoughtful words.

    1. I completely agree- this is a personal choice, and should be up to the individual to decide what's right for them. It's just sometimes hard not to see things through a tinted lens. :(

  3. This is a beautiful piece of your heart that I am grateful to have read.
    I have watched several people die from cancer related issues and have always wondered how differently things would've been had they made the choice to release their spirit before the inevitable, debilitating factors were front and center. Would I have been able to say goodbye? Would their family have held resentment? Do they now? All things that will go unanswered I imagine.
    Your husband is clearly amazing and as you so eloquently said, noble. The showing of true sacrifice is indeed noble... and not typical. I'm glad the trial has given him time with you and blessed your family with many memories. I will hope that it continues to do so.
    I'm grateful for all the BM discussion as it speaks to "choice". I may not make the choice to leave before my time but I do think that option should be up to the individual (and family). Sadly, there are no easy answers and no easy outcomes.
    Much love to you and your family. Sending peace and hugs

    1. Thank you. <3

      I think you're right- it is absolutely up to choice. And there are no easy answers.

  4. I never thought of it that way. I was fascinated by this topic after reading Me Before You. I've always been a life at all costs girl especially because I would always want to see my son grow up.

    1. I think priorities change a lot when we have kids. But I think they also have to change as our kids get older, too.



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