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We say “Not Today.”

 

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Last night, I, like many humans across the earth who have access to HBO, spilled into a culminating episode of Game of Thrones entitled “The Long Night”. In this episode, for folks who don’t watch the show, we see a battle between the living (many of whom fight each other under less pressing circumstances in order to sit on top of the iron throne and rule the seven kingdoms) and the dead (led by the Night King). This impending confrontation is what is meant by the tagline “Winter is Coming”; winter means the army of the dead, and in this episode, they’ve arrived. My daddy says that when you’re a hammer, everything looks like a nail: for me, this eighty-some minute portrait of what it feels like to lose to death, only to be saved at the last minute, reminded me so strongly of what it’s like to have cancer that I had to write about it today.

First, a bit of context. I started watching Game of Thrones in 2015, after the show had been around for awhile. Each episode is an hour long, and in general, the show is not the sort of story I usually enjoy. There are tons of characters, creatures, and languages, and while fantasy fans find this a marvel, I often find it distracting from the most complex thing of all: feelings. So. In any case, I wanted to participate in the cultural conversation, and so while I recovered from my bilateral mastectomy, my first bout with chemo, a coinciding soft tissue infection that nearly killed me and resulted in surgery to remove an expander from my chest, I watched just about ten hours a day of GoT while taking copious amounts of narcotic painkillers. In that context, I wanted no part of my true feelings, and the flight of fancy represented by the show was more than welcome.

I’ve continued to watch it ever since, throughout my active treatment, and now, after my active treatment is over and my scans are clear. I take last night’s episode, and the episodes before it (and really, the whole “winter is coming” idea), as an allegory for how humans interact with death in general. We know that it is coming. We fight it anyhow. We prepare for it as well as we can, and when it is imminent, we sit by fires with one another and sing, or extend sacred rituals, like when Jaime knights Brienne. But, in the end, death wrecks our shit.

As I watched last night’s episode, it struck me that the feeling of being swarmed relentlessly by death mirrors the experience of cancer, especially when it’s genetic. Whereas folks like to think about cancer as a bounded thing, beginning with a bad scan and ending with a better one, it is actually more like the experience of fighting against an army of the undead, which grows bigger the longer you fight. The relentless, steady onslaught of zombies reminds me of the way that cancers eats your life, so that every component, every person, event, relationship connected to me has been bitten by it. My existence is populated by white walkers now, who both once were and still are people who fight alongside me.  I am the Night King.

Screen Shot 2019-04-29 at 10.44.47 PMBut, I am also Arya. A girl has been training for this her entire life. My grandmother, and my aunt, and my mother have been my teachers. They have shown me how to die, and how to survive; how to both sit with and rage against the idea that we are important and temporary, often in the context of ordinary daily routines, like on Mondays. They’ve taught me to look for supporters, like Gendry, The Hound, Brienne of Tarth and Sansa. They’ve taught me to be tireless in my pursuit of learning, to strive for excellence in what matters most to me, and at times, the importance of a well-wrought list. Here’s the deal: Arya kills the Night King because she has trained for that moment her entire life, and she knows his one weakness. Death’s weakness is that it can never erase the fact that I am here now.  I have trained my whole life to not only know that, but live it in the decisions I make. And so, I win. What do we say to the god of death? Not to-fucking day.

I have to say that seeing myself so clearly in a television show like this makes me especially anxious for the next episode. My fear is that the story line will say “Phew! We beat death. Thank god that is completely over. Now, back to who gets to rule this kingdom!” If they do this, the world will hear from me. Because that narrative is false. That is not what happens after you beat death. As someone who has now survived a few near death experiences, let me tell you what happens afterwards: paradoxically, you have a harder time living.  Once you become aware of how close death is for all of us, daily decisions become harder. In this context, what does the iron throne even matter? Don’t even get me started on writing a dissertation!

Living after you’ve nearly died is the ultimate “Now, what?”. I sense that Game of Thrones has just reached this crucial question as well, and I am begging for them to answer it honestly. I’d like to know a story about what humans, obsessed by power, do after they have faced down death. How does it change what they value, and what they are willing to sacrifice for what they want? Death does not die. It snuffs the arrogant armies we assemble to protect ourselves, bridges over the moats of fire we ignite around our hearts. It climbs through the walls of the places we’ve gone to hide, because it was buried there all along. It is an ordinary part of the infrastructure of our plans, of our decisions, of our relationships. But, the dagger to death’s heart is swung by a girl who is no one, and who knows she is no one. It does not get to command its armies to overtake everything and everyone, especially not our knowledge of the present, past, and future, because it is not more powerful than those things. It does not get to swallow everything we love or all of who we are. It just isn’t as powerful as that. Death is no match for devotion, or good training, or for a girl who has seen death and realized that facing it unites her with every other living thing.

I am no one.

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Profiles in Greatness #1: Mary

Background Context for Mary’s Greatness

I have spent the better part of two weeks in the hospital fighting a staph infection (NOT MRSA, BUT MSSA…which is dangerous, but only over time, whereas MRSA puts you in the ICU where you commence the great grab for your life), and it has mostly sucked. There are many reasons it has mostly sucked, but here are a succinct few:
1. I had my first chemo right before they discovered it, which meant I had absolutely no immune defenses of my own with which  to fight the staph infection. So, the infection was winning for awhile.

2. I’ve had to be in the hospital during the time of my chemo cycle when I would have potentially been feeling my best, and most “normal”; the time when I would have been a semi-decent mother to my children. Further, it has been during fun times like the summer solstice and the 4th of July, and also hard times like when Vivi got a virus and Henry had to start patching his lazy eye for five hours per day.

3. I was actually released for 24 hours because I had been “cured”. I thought this thing was over. And then I got another fever, worse than the others, and I realized it was not over. I was readmitted.

4.  Basically the only viable cure for me at this point in my life was to remove the expander from my right breast, which was providing a lovely home for the staph bacteria to live, and no matter how many IV antibiotics I was given, or how much progress I appeared to make, staph would continue to hide in the expander, and not only would oral antibiotics not be enough, but everytime I got my much needed chemo treatment, the staph infection would become stronger and stronger, and more and more dangerous.  So this means that for the near future, they will only be able to reconstruct one breast. If I want to reconstruct the other one, I will have to undergo some more complicated procedures in the future.  So, I had the surgery today on my right side, which is now 100% flat. I will probably wear a sweet falsie, or prosthetic, if you need to say that. I don’t.

5. I had this great plan that my family would shave their heads with me before chemo makes it all fall out. I made this plan to have some control for myself, but mostly so that Henry did not have to witness this weird thing happening to his mom. So, Matty, Henry, my Mom (all of whom will someday receive their own profile in greatness when I figure the words to write it), decided to shave their heads with me. We had appointments made. We missed them because I had to be in the hospital. Of course, my hair started to fall out the moment I arrived, and so I asked for a shaver, and my mom shaved my head. Here are  the parts that did not suck about this:

  • My mom did it. It was so loving. And then afterwards she cried, she said it wasn’t because she was sad, but because for the first time since I was baby she could see how big and wonderful my eyes were, and it reminded me of when I was literally her baby, when she could literally hold me and I would look up at her. I know what that feels like, and the great truth of that experience, of feeling so completely seen by your baby, and slowly losing that as they grow, and then regaining it for a moment under unexpected circumstances, makes me cry a little too. Then she took me shopping for chemo hats and made sure to tell me which ones did and did not work. hjk
  • My mom sent at picture of me to Matty, and he went right out and found a Sport Clips so that the first bald person Henry saw wasn’t me, This way, our kids got to think that this was another in a long list of crazy fashion decisions that Matty made, and when they saw me, they thought I was copying him, not the other way around. Shaving one’s head and losing one’s hair can come from spontaneity, uninqueness, and silliness just as much as it can come from sickness. Yesterday, Henry’s Boppa (another in line for a kindness profile) took Henry to get a buzz too, so now we all have similar hair, except Viv. It took Viv two years to grow every last hair on her head, and I’ll be damned if I am taking that away from her on purpose. But, I think Viv gets to be the household stylist, as she has all kinds of bows and what not designed for the length of hair we all have now, and she LOVES to place hats on heads and then say “hat”, knowing and satisfied,

Mary

 Mary is  an RN at my hospital, and she is quietly wonderful at her job. She works nights, and I feel better when she is taking care of me, even though she has to be younger than me. One night last week, I had a heated conversation with a bunch of doctors in which I felt so much like an object, or a goal, instead of a person. There were a couple of key medical things that my family and me were interested in pursuing (briefly: a consult with infectious disease specialists, an ultrasound to try to view the infected area after the application of antibiotics to make sure the infection was gone before I went home, or received another chemo treatment, and then a discussion that intimated that my family had been googling and throwing around the idea that I had sepsis, when in fact several doctors had been throwing the word around and scaring the living shit out of us).

So, the doctors left, and my family left, and then Mary came in to take my vitals and I just vented to her. Not at her, I hope, but to her, and she just stopped what she was doing and listened to me. She asked how she could help, and I asked if I could practice advocating for myself, so that perhaps I would be able to do it without crying the next day when the doctors would return to discuss my case further. And all the while, she listened to me for at least fifteen minutes calmly, professionally, and caringly give the business to my doctors who were not there. I felt so great afterwards that I sent much of what I had to say in an email to my plastic surgeon, and it changed how I have been treated  by my entire team since. Mary helped me find the courage to get heard and be human.

Mary is a travel nurse,and tonight is her last night. She is headed back home for a well deserved month off. She might come back to Madison, and she might not. She has no kids, no partner, and she works in understaffed hospitals for various amounts of time all over the U.S. Travel, service, and great experiences appear to be her priorities. She could go anywhere, try it out, and leave if she didn’t like it. So, one of Mary’s kindnessess is that she has let herself be a window for me to press my nose against, where one is free to be helpful, and so capable. Though I could have done that as a young teacher, because of BRCA1 and my desire to have kids, that was never going to be my life. I’m not bitter; I’ll travel later. But it is so kind when someone just tells me the story of how they are out there doing it for themselves.

Mary was my nurse when I was readmitted, which was one of the saddest nights of my life. I had the “none of this  is supposed  to happen, especially not to me, and I am going to miss 4th of July with my kids” meltdown, and Mary had the temerity to try to fix none of this, because much of it is true, and much of it sucks, and that’s about the measure of it. Then, she let me tell her jokes, and she and I laughed for real. Later that night, I got as sick as a dog for about 45 minutes, and I was scared, and she just stayed with me and solved  the problem. I felt like she has quietly and calmly saved my life, and I still think I might be right!

The last kindness I observed from Mary happened after my meltdown. I apologized for freaking out and just unloading on her. I can only paraphrase here, but she said, “First of all, that is the most important part of my job, and don’t you dare apologize. Bad things are happening to you, and doctors have real trouble seeing how bad it is sometimes because they are lost in ‘fixing’ you. So, it is no problem for me to listen to you, to make you feel seen and heard, and it is why I am a nurse.”
Thank you, Mary, and everyone, for your kindness to me. I will continue to try to deserve it.

Love, Emily

p.s- I typed this whole thing on my ipad, and so my access to my resident artist’s photo library is missing for me right now. But I know you’ve been waiting your whole life to see this hotness right here, so, read it and weep bald  people of earth: this game is on.
My whole head wouldn't fit in my selfie. My whole head wouldn’t fit in my selfie.