Wednesday, October 29, 2014

On death and life, bravery and Brittany Maynard




We chose the day of Papa's death.

At the end of his week in the ICU wing of Harborview Medical Center, his eighth day of lying already lost to us in a coma, we signed our permission as a family to let him go. We'd seen the brain scans all week long, our daily exposure to Rorschach images that were sickeningly unsubjective, not sure exactly what to make of them except the progressive growth of darkness swallowing his brain.

That was the first part of him to die, I guess. His brain.

I'd fought it hard, the first time members of the medical team sat us down in a sterile conference room and matter-of-fact asked us what we wanted to do about his life. Our options looked grim either way: removal from life support and probable death; or transferal to a nursing home for an indefinite period of time and fraction of possibility for his living a semi-conscious life, what we often refer to as "vegetables." I wasn't ready, at that point, to surrender him to death. It knifed through me like the most permanent kind of betrayal: giving up on his life. So we asked for more time. We were given a few days.

I tried to play the scenario out in my head, the one where Papa lay in a coma in a nursing home, one foot in this world and one in the other. Tried to imagine Mom's life in limbo for years on end, and ours, too, but moving forward in ways a spouse's cannot, tethered to the shell of him. I tried, too, to imagine a scenario where he was miraculously healed after a period of time, if we only had the fortitude and faith to hold on, but I couldn't summon it. 

So much happened in those eight days, experiences and emotions crammed in on top of one another, it felt like years flew by in pages, and with each page, the acute awareness of there not being enough time. I felt robbed. Of being able to say a proper goodbye, one where he was awake and could look into my eyes and we could speak in words or none at all. But in the end, I knew. No more days added on would give us back what we had lost in the way of hoped-for opportunities. We had to patch our goodbyes together with what bits of him and ourselves we still had intact.

In the end, it's possible people could argue we cut his life short. They could write letters to us and blog posts about how we deprived the world of the opportunity to see us walk out our suffering and grief to its Divinely-appointed end.  They could say we weren't brave.

* * * * *

In the Christian tradition, I grew up with this impression, whether taught or not, that death, however it came, would be a noticeably sacred moment. A spiritual rite of passage, carrying with it an otherworldly presence and brief peek into eternity. I always expected it would be more peaceful to witness somehow. And I was certainly taught that death was not something to manipulate. I didn't know if Papa's death fell in this gray area or not, but it seemed like it might. Somehow, taking him off life support felt like a controversial act, a denial of faith, an utterly private decision we had to justify to outsiders.

Maybe this is why I have felt a lack of confidence regarding "sides" as people all across the nation are discussing Brittany Maynard's decision to die on her own terms in a matter of days. Maybe this is exactly why she's been playing at the edges of my thoughts and in the pools of memory in my heart, all week long, as I imagine her trying to come to terms with living out the last of her days. I know nothing of her or her family's anguish, but I can empathize with the grayness of it all. And while it's not for me to say whether I would do the same in her position, I think the biggest part of me has secretly wanted her to have the dignity in her death I feel my Papa was stripped of in his.

And if I'm getting down-and-dirty-honest, right or wrong aside: dignity I felt we were stripped of.

Who knows, but him and God, what Papa's experience was in death. It could have been beautifully peaceful, and him, keenly aware of the loving presence of God and family that surrounded him. But I do know mine.

It left me traumatized. And then, it left me changed.

* * * * *

I wasn't prepared for any of it, but especially not the sounds of death. Had I known, I'm not sure if I'd have chosen differently, to stay or not to stay, but I stubbornly refused to leave his room until he passed fully from us. The last, great stand of my twenty-seven years of stoicism before I cracked and crumbled.

Six hours of this front row seat of death.

My memories still, six years later, are of the horrible sounds. The change of color in his skin. The feeling of suffocating along with him, of feeling my skin was crawling, on fire, and desperately clawing to get out of it while the walls closed in. My utter helplessness.

I remember not being able to pray, except one silent, seething, anguished plea: Take him. 

I remember feeling God was cruel and this was not beautiful or sacred or peaceful. Looking back through the lens of time and distance, of course, my eyes see differently. No part of me actually believes God is cruel - not one ounce of me - and I've been offered glimpses of grace strung through this story, lighting the darkness of memory. But this experience is how death itself is branded in my memory, beyond what my intellect or even faith declares, the raw imagery of it all, where I cannot reach in and alter it with perception.

And so, I can find it in myself to wish something different for Brittany. For her loved ones. That they all would be given the gift of saying goodbye while she is still in tact, heart-wrenching as it will be to let go of each other. Because of my experience, I can believe that, whatever her choice is on Saturday, it will be a brave one, even if the death she experiences comes a little sooner than it might have. Does someone have to face the full gruesomeness and violence of a death like brain cancer to be considered worthy of the title Brave, or for us to learn something from the way she lived? The way she suffered, still? The way, ultimately, she dies?

No matter the circumstances, saying goodbye is always a tearing and an act of courage we are never ready for, no matter how ideal - or not; how peaceful - or not; how soon it comes - or not. But pressed for a choice, I cannot deny I would want a lucid goodbye with loved ones around, holding my hands while I crossed over, taking with me their gifts of love - if, indeed, we can take these immaterial things with us - and leaving with them mine to plant in the soil of grief.

Those seeds of a life that long outlive our bodies.
 

* Please note: Many of the things I write here today are not meant to be taken as statements from a theological standpoint, but as a human being grappling with the human experience of death. I know the bible well, and I know the positions on both sides of this argument, but these are not primarily what I'm speaking to in this post. 

Also, what I write about experiencing my Papa's death, I do not write for sympathy, but as a backdrop against which I can look at another's situation with compassion - in this case, Brittany Maynard's. 

Above all, my prayers and sadness of heart are with her and her family.



11 comments:

  1. Oh, darn it! I just wrote this really lovely comment and then I clicked and it lost the whole thing. Boo. Well, I simply wanted to say that I resonate with your thoughts and feelings in this post. Beautifully written. Losing a dearly loved one is such a torturous experience, no matter the circumstances. Thank you for sharing. <3

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    1. I'm sorry for the lost comment, Leah! It maddeningly happens a lot around here, and I don't have a clear answer why. I think if you don't have one of the listed accounts to comment from, it makes it more difficult. Anyways, I so appreciate hearing from you here. And you are so right: losing a dearly loved one IS such a torturous experience, regardless of circumstance. I knew you would understand that. I love you, friend.

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  2. You state this so well Amber. Compassion and grace is always on the side of right. Let us pick love as our side to stand on.

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    1. Yes, friend. So simply and succinctly stated: "Let us pick love as our side to stand on." It ALWAYS makes me happy to see your face and words here.

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  3. So beautifully expressed. I too pray for that precious woman and her family. You are so right Amber. Papa's death changed us all and opened the door of deep compassion. I see that as a gift from God. Thank you for posting this.

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    1. Yes, absolutely, Mom - that door of deep compassion that opened in us is a gift from God. It makes things less black and white as "issues" and makes people stand out more as the most important things. Thank you for reading.

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  4. I have just finished reading, again, Elie Wiesel's Night -- his story of time spent in a Nazi concentration camp. A place, perhaps more than any other in human history, where the line between life and death was the deepest shade of gray. Where those who were liberated alive were never really free and those who died there were perhaps the most free of all. And it leaves me swirled with deep, deep aches to try to make any sense of words like bravery and suffering and giving up -- as if they were ours to define anyway. I do not have your frame of reference. Nor Brittany's. Nor Elie Wiesel's. But isn't all of life, anyway, a push and pull between light and night. And sometimes not even knowing which is which. Because I am left not really knowing on which side of the barbed-wire Wiesel's night was the darkest -- nor how light was born both in and out.

    Oh, how very much I love the spilling of your heart, Amber. Into the places that need grace. And how you invite us all to consider our own condition. It matters. It really, really matters!

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    1. Beth, your response is so beautiful, insightful and eloquent, I feel you stated better in a paragraph what it took me an entire post to try to convey. The way you see things and respond helps me see in more layers, from different angles, and I value that greatly. I'm grateful you love the spillage of my heart, as I'm not always certain when I post things that it's beneficial to others ;-) Thank you for helping me to see some of how it does matter.

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  5. Amber, with an anguished heart I read this post. I lost my father in January, and though I wasn't there for the end, as he unexpectedly passed in the middle of the night, I certainly empathized with some of your feelings. He had fallen 10 days earlier, and though no one thought he was dying, I knew. Something inside just knew. His last few days were spent in a haze of medicated fog or a flurry of agitated ranting. I hated seeing him like that. I remember being so thankful to God that he died in his sleep.

    I just read over the weekend that Brittany did die, just as she had planned and just how she wanted to go. I don't know how I feel about it all. And, maybe the issues aren't what's really important.

    Death is not pretty - even it's a peaceful end. For we were not created to die. Thankfully, God did something about it.

    GOD BLESS.

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    1. I'm truly sorry for your loss, Sharon. You're absolutely right, death is not pretty, no matter how it ends. It feels so unnatural because it is. I'm thankful it's not our final end, though it doesn't make the process any easier, does it? Thank you for being here, for sharing from your heart.

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  6. Love you heart, Amber. This was beautifully written and bravely shared.

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