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Jan 17-23

This Week

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Last Sonnet to Orpheus 

Quiet friend who has come so far,

feel how your breathing makes more space around you.

Let this darkness be a bell tower

and you the bell. As you ring,

what batters you becomes your strength.

Move back and forth into the change.

What is it like, such intensity of pain?

If the drink is bitter, turn yourself to wine.

In this uncontainable night,

be the mystery at the crossroads of your senses,

the meaning discovered there.

And if the world has ceased to hear you,

say to the silent earth: I flow.

To the rushing water, speak: I am.

- Rainer Maria Rilke (translated by Joanna Macy and Anita Barrows)

 

I hope it’s been a happy Christmas for you all. Ours was so special, although bookended by a couple of very intense headaches--the first of which resulted in a mild but lengthy seizure and the second of which sent me to the hospital for an overnight stay and some strong intravenous medicines. My reading comprehension is gone entirely, and my field of vision has been further compromised. My blood counts have been too low to restart chemo, and I have just made the decision to discontinue Optune--the head device treatment I have been wearing faithfully for the last 3 months. The seizures and headaches may be linked to edema, which is swelling of the brain. I’ve just been given additional medication to try to mitigate any more symptoms. My recent MRI scans have shown possible new tumor growth, although that cannot be confirmed for another few weeks until a period of possible benign “pseudo progression” post-radiation can be ruled out. It just seems like we have not had a lot of good medical news in awhile, and that’s had me feeling pretty down. 

After the seizure, and with the MRIs showing potential new tumor growth, it seems right to keep facing what is devastatingly true about glioblastoma and its very poor prognosis. I fear my death will come sooner than I first envisioned, although I fervently hope and pray that my intuition is wrong. There are going to be some bad days, and so I am trying to savor the good ones, and I believe there are still many of them ahead.

But my sadness overwhelms me today. And the truth is that I am so scared to die. I want to be strong and enter into all of this gracefully, but I am afraid. My life has been so charmed and wonderful, filled with miracles--deep friendships, incredible parents, hilarious siblings, two children, my loving spouse, the most awesome family I married into, meaningful work, not to mention I have seen the Indigo Girls in concert nearly 50 times!

When I had babies, I remember the postpartum panic that would come over me. Usually my imagination would take me to an anxious headspace in which Robbie died tragically and I was left to raise our children without him. I’ve similarly panicked about one of them dying young too. I’ve believed myself to be strong enough with those fears because I believe myself to be courageous and capable of facing all that pain and loss. But I never really conceived that I could be the one to die first, and this is such an out-of-my-control loss. I cannot stop its progression, or ultimately change it. So I am thinking about what I can do in this time. My recent hospital stay and symptoms have given me a sense of urgency to make a so-called bucket list and set priorities for the ways I’m spending my time. Robbie and I have talked about how our lives may have to get a little smaller in order to focus our time, to let every visit count, to find the courage to have hard conversations because I realize I don’t have a lot of time or a lot to lose. I guess this is the essence of my bucket list. 

I asked my friend John if he would lead my funeral and do my eulogy. He said absolutely he would be honored, but only on the condition that I would do his. What an incredible answer! And what an incredible friend. And my friend Bonnie introduced me to a local nonprofit called Larkspur here in Tennessee that supports the process of natural burial. The site for burial is on a large parcel of rolling, undeveloped land that is held in conservation. I am eager to learn more about this, and consider it as a real and environmentally-sound option for my final resting place. 

Having recently been one of the family members who had the privilege of sitting with my cousin Kirke before he died, I’ve been marveling at how one day we’re holding the hand of a living breathing beloved body and only a few days later scattering the ashes from that very flesh and bone into the eternal fire. The veil between life and death is thin. My friend Scott has been bringing communion to my bedside over the last several weeks. Before becoming ordained as an Episcopal priest, his ministry was as a hospice chaplain, so he’s very comfortable sitting with folks living with terminal illnesses, and thus talking about dying, transition, eternity, angels, and the fears on my mind right now. It is such a gift to be in the presence of those who can hold the sadness and the fear and not try to take it away, but just meet me inside of it.

The Rilke passage above confounds me. When he writes “what batters you becomes your strength” I simultaneously understand that and feel that and yet I find it so problematic. I do not like the theological claims of suffering being salvific. For example, the last line of St. Francis’ brilliant prayer is “for it is in dying we are born to eternal life”--what does it mean? Theologically I struggle with this, and yet I also find comfort in it. There is a passage in the gospels when Jesus says “I came that they might have life and have it to the fullest.” What does it mean to have life and have it to the fullest? There has been, in my interpretation, so much maligned, anti-gospel translation of this passage. Living life to the fullest is certainly not about accumulation or quantities--money, friendships, homes, or hoarding opportunities. I imagine the hope here is about living deeply, with intention, with purpose aligned within the essence of god’s call and hope for us, which is really to deeply love and let ourselves be loved. As I think and feel my way through whatever remaining time I have, I have been reflecting on these questions and asking god to guide me towards answers. I lie awake in my bed at night, and like the disciple Thomas, I say “I believe! But forgive my unbelief!” 

Our family is working through these questions in different ways. We’ve had the privilege of working with a psychologist over the past several months to give our children additional context around my cancer diagnosis and some space to process the many emotions for all of us that accompany it. In a recent appointment with my six-year old son Thomas, he shared quite a bit with Dr. Herrington about my cancer. She asked him to draw a heart and write down words inside the heart of what needed extra special love. His list included “fish caught in nets” (and not released), "Christmas trees that were chopped down" for the holidays, and his family. She then gave him a band-aid to put on top of one of those concerns in need of special love right now, so he put it on top of the word “family.” We finished up our session by reading an incredible children’s book our friend Kendall sent us called The Invisible String. It’s a story about loss, and how people remain connected in their love even after separation or death. Since that appointment, Thomas and I have been using a hand gesture of tugging on the invisible string that connects us to one another in love. 

My mom recently told me about her own version of the invisible string. She takes a bike ride every morning on Jekyll Island, where she lives, and as she rides, she silently talks to her deceased loved ones, like a long telephone call with an invisible cord. First she calls her mother and then her father and then her sister Kathleen, who died in September of this year. Then she moves on to god, and then Jesus. And then, to wrap it up, she asks Jesus if he could put Kathleen back on the line. 

Part of my process these last months has been to open myself to meditation. In one recent meditation, I met a huge salmon--female and strong. She met me at the edge of the water and said “I got you, follow me” and all I had to do was hold onto her tail and follow. I didn’t have to fix anything or worry about anything, all I had to do was hold on. She swam us down and down in the water to a place called the chamber of gifts. I was supposed to pick a gift and then I realized that she was the gift! But I couldn’t take her with me. She told me I could call on her anytime and she would meet me in our place at the edge of the water, and that she will always, always know how to go back, to find me, to meet me there.

Thank you for journeying with me through this “uncontainable night.” Your cards, words, texts, and comments here mean so much to me and Robbie. Thank you for pouring your deep love into our lives, tallu

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