On the slow march of my sister's cancer, the swirling chaos of uncertainty in the face of change, and the kind of soul-searching that leads to the deepest questions of self, soul, and science.
When my sister Vanessa learned how she would die, it didn’t happen all at once. The details came in little pieces of knowledge, bits at a time. We would take each new fact and hold it in our hands, look at it, get used to it, tape it to the other facts for a hodgepodge collage of How Vanessa Will Die.
It really started in 2006, or probably sooner, when breast cancer started growing inside of my sister. We helped her through chemo, weird medicines and weird side effects, so many surgeries they all blend together now. My role was often “Christina, go read up on this and then tell us what this means.” I pored over books, read the less fun parts of the Internet, and learned words like Portocath and Tram Flap and Oopherectomy. Sometimes the facts I learned were full of such fire I could barely hold them in my hands. Sometimes the facts were cold and mean. I would sit with them, sort them in my head, turn them into more manageably tangible facts and give them to my sister.
We became experts of each piece of the process. Each piece of time had a name.
- Summer 2007: We Learn About Wigs.
- October 2007: The Particular Color Radiation Turns The Skin.
- February 2008: What To Do In Waiting Rooms. The Way The Body Shivers After Mastectomies and Reconstruction. How To Empty Boob Drains.
And so on. New fact –> Hold it in our hands –> Look at it –> Normalize it. Over and over.
- February 2010, when Vanessa was 29: How To Cry On The Phone At Work. The Ache Of Knowing Things. The Cancer Is In Her Bones.
It’s called metastasis. It means the cancer broke free from its original home and was going rogue in the rest of her otherwise healthy, vibrant body.
It meant that cancer would kill her. The doctors gave us no timeline; the Internet said 6-24 months. We took this fact, held it in our hands, looked at it, slept with it under our pillows, wore it like a pair of glasses.
When this had been true for two whole years, we learned the cancer had gotten into her brain lining. “So much better than the brain itself!” said the Internet. “Thank God it’s not the brain!” But even the brain lining is hard to get to. The doctors cut a hole in the top of Vanessa’s skull. They put a little port in it, so the chemo could get right to the lining. It made a bump the circumference of a quarter.
- August 2011: All About The Blood-Brain Barrier. I Drive Back And Forth And Back And Forth.
- Spring 2012: Time Keeps Passing. We Carry So Much Weight.
When you know death is coming for someone you love at some undisclosed but soon-ish time, your hope changes from big and open to small and solemn. You hope for a Good Death, whatever that means. The Internet taught me that metastasis to the brain was not a good death. It changed you, made you less than yourself. “Not the brain,” became my whispered mantra. “Not the brain. Please not the brain.”
But it went to her brain. We learned what this meant in pieces, too.
- June 2012: The Way Steroids Shape The Face Like A Moon. I Think My Sister Is Starting To Be Confused.
- August 2012: There Are No More Ways To Try To Fix This.
- Winter 2012: How To Hide The Car Keys. We Wrap Presents. Pondering The Essence Of A Self When A Brain Forgets Who It Is. Every Wednesday The Hospice Nurse Greets The Dog. Every Morning Is Another Beginning Of The Same End.
Because Vanessa’s body was otherwise young and healthy, the process of dying was a slow, slow march. Vanessa’s brain was changing every day. She went through bizarre phases — obsessively sorting things, cutting all the tags out of clothes, spending hours putting on extravagant make-up. We would just get used to one piece of the decline when another would appear out of nowhere.
- Spring 2013: We Often Sit In Silence Now. The Way Everyone Stares At Us In Public. Sometimes Vanessa Yells.
- Summer 2013: I Did Not Know I Could Break In This Many Places.
- Fall 2013: How To Work From McDonald’s. How To Work From Various Couches At 3 In The Morning. “You Should Be So Grateful To Have This Time.”
- Winter: The Second “Last Christmas.” It Is So Damn Cold. I Know You Hate Showers Now But Please Let Me Help You.
And then, finally,
- February 2014: How To Sit Vigil. I Tell You I Love You At The End Of Each Sentence.
- February 23, 2014: The Sun Is Coming Up And Your Last Breath Lingers In The Room. We Are Holding Both Your Hands. We Know Now How This Ends.
Vanessa loved my music. When she was still fully herself, she would tell me this all the time, and when the cancer went haywire in her brain she would still tell me this all the time. In fact, she would tell all sorts of people this: the hospice nurses, the Kroger workers, the neighbors… “My sister is awesome! She can play so many instruments! She can do anything she wants to!!!!”
I wrote “Battle Cries” for her in the winter of 2011, somewhere in between All About The Blood-Brain Barrier and We Carry So Much Weight. I think it started when I was researching Ommaya reservoirs on Wikipedia so I could help Vanessa make sense of her upcoming surgery, where they were going to cut an actual hole in her skull. A hole in her skull. A window to her mind. Good lord. The entire cancer journey so far had been a lesson in absurdity, but this was a whole new level of incomprehensibility.
I knew what was coming — change, decline, death — but no part of me at the time could fathom how we were going to do this. Our family’s thoughts at that time were nothing but questions: How do you walk next to someone you love on a journey like this? How will this all shake out? How can we make the most of our time when we don’t know how much time we have?
But in addition to questions like this, I found myself with other questions too. In conversations with my sister Jessica and with my closest friends, we wondered about these deeper, more scientific questions. Questions that mixed philosophy and physics, theology and electricity and biology and brain matter and uncertainty and love.
These were questions like: How much of us is the physical matter that we are made of? Are we any more than the sum of our cells? What is the self, apart from synapses firing within the brain? What is love made out of? What do we leave behind?
So this is what “Battle Cries” is about. Sonically, I wanted it to feel a bit chaotic and overwhelming — from the repeated mantra of winter/morning over and over to the spinning 5/4 meter to the words that maybe take a few listens to really hear all the way. It’s a bit dark and a lot deep and it means a whole, whole lot to me.
I made the video at the top of this post just now, just this weekend, in my house in a snow storm. It has been exactly one year since Vanessa died. In finding these clips and piecing them together I felt her present with me. I cried all weekend too. So it goes.
If you want to learn more about Vanessa’s story, you can read our V-related posts at The Live Sincerely Project. Jessica also wrote a lovely post there for today in which she touches on what this last year without Vanessa has looked like, in grief and ache and love, for all of us. Read it here: The missing year.
This is the winter, this is the morning
You are listening to your heartbeat
through the window to your mind
I cannot fathom how we’ll do this
We have entered new ground
Lines and phrases fire in synapses
Try and forget us, you never will
Our stories are longer than we know
Love is a particle and a wave
Rivers in canyons deep and narrow
Creep through crevices we once forgot
Old and electric, cold and cryptic,
Unrelenting in change
You looked and my heart took a picture
Crooked and strong and deliberate
Iris, pupil, cornea, lens:
These eyes, these battle cries