Bloggers will understand. In my haste to throw up the previous post before doing something else that was no doubt vitally important, I failed to look at the slide I included, which was for fun during last year's Engage with Grace campaign. The real slide, with the right questions for your family to discuss relative to end-of-life issues is this one. Sorry (and I'm slowing down, she says, while typing like a maniac).
A few days after posting about our current predicament, my friend Emily called with urgent news: she'd just heard Gail Sheehy on NPR and I had to read her new book. I picked up Passages in Caregiving a few weeks later. In it, Sheehy, author of the spectacularly successful Passages: Predictable Crises of Adult Life and many other books, speaks of "eight turnings" in caregiving. That post of mine, titled "A
turning for J&J," was written in what Sheehy identifies as the first, Shock and Mobilization. (We're now in The New Normal, according to Sheehy, a fair description of how it feels, a phrase that our friend Carole used after the initial crisis period ended.) I'd used the phrase without benefit of having read her book.
I'm struck with many of the words Sheehy's uses, which so perfectly capture this strange land: shock and mobilization, the new normal, the in-between stage, the long goodbye. We've used them all, others have used those same terms with us, all seemingly spontaneously.
There is no lingua franca for this kind of experience. As our friend Tom (Emily's hubby) said, "We don't know how to do this. We're not trained." Yet when you're in it, the descriptive terms fall out of our mouths without our having googled "terms for stages of terminal illness." Yes, Elisabeth Kubler-Ross identified five stages of grief, which are both similar and different. Much as I respect her work and have found it useful, those stages don't really apply to where we are with this.
Sheehy's book is filled with stories, including her own, the 17-year saga of her husband, Clay Felker's, cancer. She was the caregiver; they suffered mightily, including financially to support him; and she's drawn brilliant conclusions, including the one that stands out for me: establish your network and you'll be OK. In our experience, our "friendhood" has meant everything to us.
Buy multiple copies of her book and give them to everyone who's going through what Jeff and I are.
It's been thirteen days since I last posted, an unheard of interlude here. The reason is something we never imagined.
On el Cinquo de Mayo, Jeff Stamps, my husband of 38 years, father of my children, business partner, and my co-author of six books and many articles, went to the doctor. He'd not been feeling well for several months but, being quite physically fit (he was a competitive downhill skier from the age of eleven, has always jogged, done tai chi, and more recently practiced yoga), he attributed his malaise to stress and overwork. The wife was not so sure but finally, nearly two weeks ago on a gorgeous Wednesday, he consented to visit his primary care physician.
Within harried hours came the diagnosis: Stage 4 pancreatic cancer.
By that evening, Jeff was admitted to the hospital for a simple procedure to relieve a blocked bile duct, which had caused severe jaundice. Meanwhile our children and grandchildren had arrived home and we found ourselves on a twisted path that was beyond our reckoning. In just this short time, there have been many turns already, most of them lined with gifts of friendship and love that lay hidden in the normal schedule of life.
We don't know how many difficulties face Jeff (and our family) going forward but we know they are considerable and we're clear about the conclusion and the vague time frame, which is mercilessly short.
And I don't know how much I'll be writing about this. My natural inclination is to use writing to stay sane and clear, which is what I've done for my whole life (ok, since I was six and I wrote my first published article about a birthday party in my first-grade class). But this is different, as I'm sure you can appreciate. And I'm finding that I can't keep up with the many beautiful notes we've gotten. So if you're prompted to write, please know that while I may not be able to respond, we are very grateful.
We are learning things we never knew about Jeff -- or perhaps better stated, things we knew but which didn't have the proper venue for expression. Like his huge capacity for grace when staring down his own death, his ability to let go of the things he holds most dear, and his untiring appetite for tackling complex ideas, which he continues to do even as he faces treatment to reduce symptoms. I would wish this kind of acceptance on anyone given the kind of death sentence he has. And I would hope that all families could find the way to do what our children have done, which is to join us, and find ways to continue their important work even as their father is dying.
We now are a three-generation household with our darling grandsons providing the new background music. Watching them laughing their little heads off (they're eight months now) softens the jagged edges of this journey.
More, I'm sure, as this unfolds.
I warned you that this one was coming. Will keep it brief with this preface. Their mother, Daughter #1, went to culinary school. I think that explains the wide array of items in their diet. It may even be more foods than you eat in a week. All home-made, of course.
In case you can't read it (iPhone camera again): avocado, banana, sweet potato, pear, brown rice cereal, baby oatmeal, peas, carrotws, apples, yogurt, butternut squash, chicken, beets, green beans, broccoli, tofu, Arctic char (!), ricotta, lentils, and brown rice.
And the happy eaters
When grandsons Lake and Finn were born last September, my friend Donna warned me that something unexpected was about to happen. "You grow another heart," she said. In our case, I'm afraid I'm growing two. I've done my best to keep the boys mainly off the blog. I mean, who wants to read about someone else's grandchildren? But then something happens that I think you'll enjoy so please indulge me as I share two posts - this and the next.
What prompts this one was an interaction they had last night, which I wish I'd been able to video.
The boys are identical twins, an endlessly complex and fascinating relationship that is rare. If Wikipedia is right: barely .2% of the world population, only 10 million of nearly 7 billion people, is in a pair of identical twins. As you likely know, Identical twins happen when a fertilized egg splits into two embryos. So what was one becomes two - completely different from fraternal twins.
Watching the twins interact is, of course, endlessly fascinating. When they were newborns, they would be put down near each other and invariably they would find a way to drift together. Now they're getting big enough to really notice each other and act on it.
Last night was such a time. They'd had dinner (see next post), taken their baths, and were listening to a little bedtime music that their dad had chosen, in this case, "Paperback Writer." Naturally, we expect great things of them (and for them to follow precisely in their grandparents' footsteps) but probably they won't put out any paperbacks, thus the title of this post. Perhaps they will be iPad writers.
They've got fine taste in music, naturally. They like the Beatles. They like "The Wheels on the Bus." They like "Itsy-Bitsy Twinnies" (formerly "Itsy-bitsy Spider"). Thus they were groovin' to the tunes when the following happened. Lake on the left, reaching out for Finny, who'd rolled over to inspect what his brother was doing, leading to Lake defending himself, all of which ended with a squeal or two from Finn and a very triumphant Lake. Double click the pics to see the sequence.
Lover of (endless) knots that we are, a must-post.
New show in NY including the "Forget-Me-Knot Neuftych (We're Knot Alone)" by Eliza. "Structured at Spattered Columns, 491 Broadway (near Broome), 5th Floor, NYC, April 14th through May 13th.
This image, Knot In My Town, from the Forget-Me-Knot series but (k)not in this show.
It's Armory Show week in New York, which means there's art all over the city, including at Verge Art Fair at the Dylan Hotel.
There, you can see wildspace and the work of Eliza Stamps, known in these parts as Daughter #2, along with her colleagues, Emily Bolevice, Carissa Carman, and Crystal Gregor
Friends, Miamians, art lovers, lend me your palates.
Take a walk over to the Verge Art Fair until Dec 6 and enjoy the artistic interpretation of food - both visually and digestively - in this food-as-performance-art presented by Wild Feasties, "a collective of artists and naturalists...who[se] ... installation projects focus on creating and consuming delicious, local foods."
An interview with Wild Feastie (and daughter #2) Eliza Stamps (the other Feasties are Carissa Carman and Emily Bolevice) appears in full at Mango&Lime blog. A taste, so to speak:
How did Wild Feasties come about?
We are a collective that began hosting food events from a summer at Chashama North, a residency in Pine Plains, New York. We are all artists and naturalists, invested in the excitement of collaborating and resourcing innovatively.What can people expect during Art Basel?
We will be presenting The Leafy Green, a tasting of delectable, innovative, yet incredibly simple local food.In the context of Art Basel, we hope to delight the senses of a fresh market, with curiosity, generosity, play, community and nourishment, to offset the hyper-consumerism of art fair culture.
