Glen's tumor -

it's back.

And my mom. She’s entering her 8th day with no water, no food. She is dying.

Glen is scheduled for a second brain surgery on May 11th. His pre-op is tomorrow. We are preparing for Glen to lose some aspect of his speech, and his ability to comprehend speech after this second surgery.

Yesterday afternoon I sat with my mom and sang Michael Row Your Boat Ashore. I only know the first verse: “Michael row your boat ashore, hallelujah. Michael row your boat ashore, hallelujah.” So I sang that, over and over. That same morning, one of my mom’s closest friends sat and read to her about Simone de Beauvoir’s time in college.

I’ve had a number of friends ask why Glen is taking the risk to have this second brain surgery. The answer is this:

If Glen does not have this surgery, the tumor will continue to grow, and he will lose his speech and his ability to comprehend speech. He will lose other functions too. Those other functions. I cannot name them right now. Typing those words out. I can’t. At least not yet.

Before my mom lost consciousness, she said, “When are we going to the party?” I said, “How about now?”

“But I don’t have anything fancy to wear.”

“What about that pretty turquoise dress you have?”

“Oh yes, I’ll wear that. Will you button me up?”

So I pretended to button her up in her turquoise party dress. “You’re all set mom. Let’s go to the party.”

“Oh I can’t wait! Whose going to be there?” I listed the names of all our family members, and all our friends. “Will any famous people be there?” She asked. “Oh, yeah. So many famous people.”

She giggled and she giggled

Prognosis for Glen’s survival after surgery is 2 months to 2 years.

Yesterday in class, at the end, after dancing, when everyone was sitting quietly on their own — writing, drawing, resting — the time before we gather to talk, a thought moved through me: “I trust this process with Glen.” A wave of serenity washed my body, then washed me again.

When we first found out about the glioblastoma in Glen’s brain, a vine wrapped itself around my sternum, my diaphragm, my spine. It was there to hold me in place so that I wouldn’t fall out of my skin.

With this second surgery, and the thought of Glen not being able to speak, or to understand what is being said; the thought of him dying sooner than our hope led us to believe — there is no vine anymore. There is only a quaking. Like someone is shaking me, from the inside. It is with me the quaking, almost always.

Besides going to parties with famous people in fancy party dresses, my mom also had animals, all kinds, coming to visit:

“Whose that sitting on my bed? Is that a bunny? A pink and yellow bunny? Ooooooh, look how cute she is!”

“Why is that crumbly bear all the way over there? Ask him to come closer.”

“Look at all the dogs! Make sure everyone knows where their water bowl is, so they have enough to drink. Do we have enough treats for everyone?”

Cats, squirrels, more bunnies, more dogs, elephants, and foxes. They all showed up to say good-bye.

After I finish writing this to you, I will go and sit with my mom. I want to sing to her again. I think I might sing Are You Going to Scarborough Fair.

You are My Sunshine. I’ll sing that too.

Kate, who takes our Sunday Sky Inside Dance Class, she emailed this to me recently:

“There has to be more spaces for death, for grieving, that exist out in the open, for singing, chanting, hugging, holding, crying, and being together. I wish that we could all be that for you. I hope we can be that as much as we possibly can from a far.”

My response to her was: “Oh, you are, you are, you are.”

That same response goes to all of you who have held, witnessed, cared for, and listened to this story of what is happening for Glen and for me. I know you have a similar story, or know someone who does, because it’s all of us, moving through this prickly precious life, together.

And this, from Rowan, when I wrote to tell her that Glen’s tumor had returned:

“Dearest Jo,

No words, but wrapping both of you up in my thoughts and love. My heart breaks too, wide wide open, and gushes out the sorrow and sweetness of a million moments of love and closeness. Through the complexity of grief and life and hope  -- I love you both through all of this, and more more more.”

We love you too Rowan, and all of you. Who are there, right now, with us.

I’ll press this button on Substack that says, Send to Everyone Now. Then I’ll get in my car, drive to my mom’s house. Spend the day there, sitting quietly, sometimes singing.

xo,

joanna