An Invitation

If you read no other post, please read this one—at least until the end of the invitation. For my daughter's sake.

A convenient if somewhat unstable ballet barre.

October 28, 2024

So many wonderful things have been happening since I was admitted to the hospital Friday morning that my heart is overflowing. I want to share a few of them, so you can glimpse how many marvelous people exist in the world. They give me hope.

First, I received a note on Facebook from a man with whom I had the sweetest of summer romances in Seattle in the early 90s. We played opposite each other in a Medieval Faire, so there was an inevitability to the relationship. He was four years younger, and still in college, so at the end of the summer he returned to the East coast and his studies. We lost touch until very recently. He wrote to me to say that a comment I made, that he might be interested in studying at the British American Drama Academy in London, changed his life, led to his connection to a mentor, and to the creation of his two sons. “My kids exist because of that comment,” he wrote. “And so much else besides.”

This blew my heart open. Never in a million years could I have imagined that something I said would have that kind of impact on a person’s life.  

I then received a lengthy email from a fellow Oberlin alumnus, a bright and fascinating woman. I’m not sharing the names of the people who have written to me, to protect their privacy. But this woman wrote to tell me how my life and work has inspired her for years. I’ve worked with her on her own insightful writing, and it warmed me to hear that I have been helpful. May she continue.

This morning, I received a note from another friend with an offer of political help for my friend Kawkab, about whom I wrote in a recent post. My friend’s thoughtfulness and generosity made me cry. Nothing could make me happier than to know that something I have written here has resulted in aid for Kawkab! When I told Tim, he cried too.

At moments like this, I am continually reflecting on my life, wondering what if anything I have meant to people. If I have had an impact on the world. So when I hear from you about what I have meant to you, even in the smallest of ways, it buoys me more than you can imagine.

Then there is the flood of new subscribers here. Thank you! It has made me so emotional to see you pouring in. Thank you for sharing my newsletter with friends and anyone you think might be interested or benefit. I know there are so many of you going through your own medical catastrophes or other daunting challenges, and I hope that this newsletter feels a welcoming and useful place for you to be.

Many of you—so many! — have written to ask how you can help. It helps me to hear your memories, to hear about your lives. It helps me when you stay in touch. Also, if you’re cross with me about something or nurturing some decades-long resentment, this would be a good time to tell me so we can resolve whatever it is and live in peace. I want you all to know how much YOU mean to me.

Here is what is foremost on my mind: surrounding Theadora and Tim with love, now and forever. In recent days I have spent much of my time ringing and writing people close to us to ask them to please stay part of Theo’s and Tim’s lives. I feel like I am leaving them with a babysitter and creating a list of emergency contacts. I want to know that whenever it is that I die, they will continue to be surrounded and supported by people.

Last night, one of my oldest friends wrote me with an inspired suggestion:

“I wonder if it would be helpful for Theo at some point to have a directory of her aunties, your friends, all of us all over the world who know you, adore you, and have bits of you in us in the way we grew up together, and/or share your philosophies, and/or have similar or sympathetic approaches to life; and love you and her and can be safety nets and soft landings for her as she navigates life. I wonder if on your blog you might invite your friends to tell Theo how we know you, about our relationships, some things we’ve done together, and what aspects of you we feel we can help her know in the years to come. And provide our contact information for when she goes on a walkabout.”

My invitation:

Those of you who know me and Theo in person, would you be willing to write to her the story of how we know each other, and tell her stories about me that she may not know? Particularly stories that are funny or involve me doing something stupid or crazy, that might make Theo laugh. Nothing would be too small or silly. Also, any kind of memories at all. Can you give her pieces of me I may have forgotten, pieces she has never seen of my younger years?

Also, would you be willing to be a soft landing for her someday?  

If you are willing, please could you email your thoughts and stories and memories to me at jfsteil@gmail.com? I will then compile them into a document to give to Theo. Clearly, there is a time element here, so the sooner the better. I begin chemo today, and hope that it works and gives me much much more time. But I don’t know how much energy I will have once I begin again.

I’ll now update you on the medical situation—I wanted to put that invitation towards the top, for those of you who don’t make it to the end!

25 October 2024

8:30 p.m.

Well this was unexpected. I’m sitting in a hospital room letting ascites drain out of me into a plastic pouch, and saline and pain meds drain into me via my port. I hadn’t thought I would be spending the night, let alone staying here until Wednesday, when they tell me I might be released. Dr. D’Hondt is on holiday this next week, and I think she wanted to make sure I was being watched, given my precarious position, which is either kind or trying to manage her own risk. Let’s go with kind. Let’s assume the best.

Dr. D’Hondt rang Friday morning to say she found me a room in ICM, which she hadn’t been able to do yesterday. We had thought we would need to go to the emergency room at Clinique Beau Soleil. I’m relieved to be somewhere familiar. I had nothing with me, as I hadn’t thought I would stay. So, after making sure I was settled, Tim headed home to get my overnight things and our daughter, who had a jazz dance class in Montpellier this evening.

About an hour after he left, an orderly came with a wheelchair and took me to get my drain inserted in my abdomen. When the ultrasound technician first looked at my abdomen, she said, “you don’t have any liquid!” And I explained that my oncologist had said I did. “Pfft! Oncologue!” she said dismissively. I got the feeling that because she had no idea what I normally look like, she didn’t believe me.

But she went and got a doctor, who immediately found the ascites. The liquid was all in between my intestines, so at first he didn’t think he could get a needle in without poking my intestines, which would be a fatal mistake. But then he had me lie on my side, and found a big pocket of liquid, into which he inserted a large needle of anaesthetic and then a larger needle to place the drain in my abdomen. It was painful, I won’t lie. But I didn’t make a sound and I didn’t move. I was so afraid he would puncture my intestines.

So much of this experience reminds me of pregnancy, without all the joy and anticipation. The insertion of the drain felt similar to my amniocentesis. Back. then, I was closely watching the needle via ultrasound, to be sure it didn’t go anywhere near tiny Theadora. Now, I was closely watching the needle to be sure it didn’t touch an intestine.

Tim and Theo visited me around dinner time. Theo was a bit cheerier than when I last saw her, but I know she is not cheery. She asked to see an email I wrote to someone, and I said, “it will just make you sad.” And she said, “really? Because unless you’re keeping something from me I am already as sad as I get.”

The night was pretty good by hospital standards. I don’t think I have ever spent the night in a hospital this quiet. I could hear the man next door coughing and occasionally the sounds of his television, but there was no noise from the corridor. No raised voices. I did occasionally wake to find two women standing over me, examining the bag of ascites hanging by my side. And I got up several times, always a big production given the ascites bag and the IV and all the alarms that go off when I unplug everything.

Nurses woke me when it was still dark, to hand me meds and deliver breakfast, a slice of bread and coffee. I half-expected them to hand me a cigarette as well, to make it a truly traditional French breakfast. There is always a cluster of patients smoking outside the hospital.

Tim says last night he heard a keening sound from Theo’s room. At first he thought she was doing her vocal exercises. But then he went upstairs to find her sobbing. Is Mom going to die? She asked. They talked about this. Tim said he was honest but not despairing (because there is no reason to be! he added, being Tim). He says she talked and talked, until she had talked herself to a happier place.

It's good, he said, in response to my downcast face. We need to start having the kind of conversations she is used to having with you.

And that is what I found hardest to hear. The planning for when I am gone. He’s right to do this. I want him to be as close to Theo as she lets him be. I want her to turn to him the way she turns to me.

And yet. It’s acid to the already-carved-open gut. The two of them without me. I can’t bear to imagine it.

October 27, 2024

When my morning nurse found me writing, she asked me what I was working on. My admittance form lists my profession as “writer.” I showed her my books online. She loves books inspired by actual events, like Exile Music, and wishes there were a French translation. Me too. It’s a little-known story that must not be forgotten. It came out at the wrong time (May 2020), when newspapers were slashing book coverage to make room for the pandemic. Forgive me for saying this, but deserved more coverage in the media; it deserves to be read widely. Just recently, one of the two journalists I currently mentor at the Columbia Graduate School of Journalism wrote to me to say that she had been up all night reading Exile Music, that the characters keep appearing in her dreams, and to thank me for writing it.

Saturday I spent a couple hours in an online writing workshop led by my brilliant author friend Rachel Knightley, to be in the company of fellow writers and to be writing. It was the best possible way to while away the empty hospital hours. On the weekend, the hospital was utterly deserted. Every wing was closed except ours, it seems. The café was closed. The corridors were dark. Tim and I took an explore, but found nothing open except the little multi-religional chapel in the basement. Quite pretty. Stained glass, a little altar. Welcoming Catholics, Protestants, Muslims, and Jews. Not sure where the Buddhists and Hindus and Wiccans are supposed to go.

It felt lonely, the emptiness of the hospital. It made me miss NHS hospitals, always heaving with people. I missed the ovarian cancer surgical ward of Hammersmith Hospital, where I shared a bay with three other women who had gone through the same surgery I had, for the same disease. It made such a difference to have them near me. To know I was not alone. But the French isolate us. I haven’t seen another patient. I realize that this is a luxury. I have privacy most of the time. I can do ballet and yoga and write uninterruptedly. I even have a desk! It’s amazing. But what I do not have is companionship.

I have been de-drained. The nurse at last pulled it out Sunday morning. I am so relieved to be free of it, and to see the familiar contours of my abdomen. I am happy to be hungry, to have room for food and water and coffee and tea. I am happy to be attached to fewer bags. I need a walk. I need to move. Get some fresh air. Even in the rain.

Miraculously, Sunday afternoon, I was sprung from the hospital, with a warning to return before 6 p.m. Tim and Theo fetched me and we walked to the tram and took the tram into the center of Montpellier. What joy it was to walk! To move my legs! To take a tram with people who had no idea a complicated series of tubes dangled beneath my shirt. The nurse had warned us not to get in a car, because of the needle in my port. Which was fine, because I had no intention of getting in a car. (Though we had thought to drive to the beach to walk… a plan that was thwarted by biblical downpours).

We found a little Chinese place to eat, with a kind and cheerful cook. After that we wandered through the Musée Fabre. We had time for the quickest of teas before whisking me back to the hospital before I turned into a pumpkin.

Any minute now, someone will bustle in here with the chemo. So. A très bientôt, my beloveds.

Hospital fitness routine: Pilates with an IV stand