Not much to report this week. And yet, there is more news than you might think. Living with dying can be pretty boring – ask anyone who has done it – and yet we are enjoying our time together. Sacred time.

         We have three things to tell you.

         Rest is so important. Just how important often becomes apparent after the collapse. When exhaustion overwhelms. Trying to do too much, not getting enough sleep and naps when required, and thinking too much is overwhelming.

         Being kind is so important. We’ve always known this, but as Jeannie’s ability to be rational declines we need to cut each other more and more slack! She calls it uber-kindness. We encourage you to try it. Today.

         And so, we end up saying sorry a lot. Not as an apology, but more as a mantra. Sorry that what I said was confusing. Sorry that I just asked you the same question for the third time in half an hour. Sorry this is all so hard. Sorry, sorry, sorry. Through tears and smiles, sorry.

         Jeannie has a faint hope, a dangerous dream. During this process John and I have been building him a new watercraft, a kayak. It’s nearly completed and we are rushing to get it finished. With luck, good weather, energy for Jeannie and a lot of care and compassion for each other, we might launch the kayak at The Pond. We’ve been blessed with access to a beautiful bit on water on a wild piece of land to the northwest of Cochrane. Maybe we will post photos of John in his kayak – he’s named it SONIC – and Jeannie in a canoe, out playing on the water in the next edition of the blog.

         Or maybe we will just stay home, stay still, rest, be kind to each other and rejoice in all the wonders that are included in this particular version of living with dying.

         We love you all. Enjoy reading your comments. And welcome anything you want to write us. Love you so much.

David and Jeannie

I am the caregiven
That’s my role
David is the lead 
Even John is tender
A caregiver in our team

Brain swelling creates
Waves of overwhelm
A nice sipping rum helps
Two bottles please*

Micah 6:8 lists
Caregiver principles
Do justice
Love kindness
And walk humbly
With the Mystery

Justice is important
Helping the helpless 
The way they want

My heart is cracked wide open
I want to be
More available for my family
A great focussing
On following my heart

Walk humbly
With the mystery 

Follow the verbs
Do justice
Love kindness
Walk humbly

We are always
In community

So much love, Jeannie

*Not a request for rum from you, the reader! This prose poem reflects Jeannie’s comments about caregiving in this last week.

Keeping in contact with our many friends is important to Jeannie and David. So we’ve moved the Jeannie’s Medical Meanderings blog to David’s business website instead of starting all over again with a new website.

There’s an earworm running a loop in my head, a love song to all that I adore in the world and am saying goodbye to. Check it out on Youtube: Getting to Know You, cue up James Taylor’s cover of the famous The King and I tune. I hold all of you in the embrace of its lyrics. I can’t tell you how much the song helps at this stage. I sing it (in my head) to every tree, every baby, every friend.

On the medical front, I’m noticing new but subtle changes each day, like a new dizziness this morning. Everything is shifting. Fluid speech escapes me much of the day and it takes a lot out of me to participate in conversations. I need to save the remaining capacity for family and oldest friends. Please know, it’s really hard to have to shut that door. I covet your messages of encouragement though, so please know I read every last treasured one. I’ll try to repay you with updates like these. Thank God I can still read and write. I may even be able to squeeze out a few replies when the fates align.

Getting to know you
Getting to feel free and easy
When I am with you
Getting to know what to say

Haven’t you noticed
Suddenly I’m bright and breezy?
Because of all the beautiful and new
Things I’m learning about you

Day by day

Three more slim books to check out, all by physician/scientists who write beautifully and with uncommon insight: 

– When Breath Becomes Air – Paul Kalanithi. (Also check out his widow Lucy Kalanithi’s TED Talk: What makes living worthwhile in the face of death.)

– Gratitude by Oliver Sacks. I think of this as an atheist’s final love poem to life and the earth.

– Being Mortal: Medicine and what matters in the end – Atul Gawande. This one is a great conversation-shaper for talking with your loved ones about what you think you might want when faced with serious illness and medical decisions. David and I found Gawande’s treatise for this book in a The New Yorker article and took it to discuss on a 2010 holiday in the Northwest Territories. So glad we did.

Still more air hugs, Jeannie.