waiting and loving

One of the most extraordinary characteristics of Tad Crandall is reflected in the fact that in the five-plus years we have been a couple he has never asked me to be or do something differently.

I'm not saying he's perfect of course. He can be cranky and moody. He uses words minimally and can get frustrated when I don't read his mind. There have been plenty of times when he's set limits with me usually by saying something like "I can't listen anymore" while gesticulating firmly that he's had enough. It's a bit abrupt but it's far less damaging than "You talk too much", "You need to talk less" or "If only you were less talkative" - all phrases that were written consistently on my report cards as a child.

In fact it's safe to say that Tad is the diametrical opposite of a nagger.

I wish I could say the same about me.

Little by little over the years -perhaps buoyed by a quality of love that I can only define as unconditional - I have learned to stop wanting him to be different. I stopped asking him to watch less TV, to eat healthier food, or, dear god, to not wear THAT shirt.

Perhaps this is the natural course of all couples: we learn to choose our battles, accept that some things are non-negotiable and simply let go. Hopefully - if we stay on the side of love - we settle into something peaceful and caring where we pretty much let the other party lead their lives as they will.

These days I spend a lot of time making sure I am not telling Tad what I think is right for him - even though it feels like it would lessen my anxiety.

In the coming weeks Tad must choose between:
a - moving to Seattle to obtain a treatment that may work but probably will not; a treatment that will definitely cause him all sorts of discomfort and challenge his already compromised immune system.

b - finding a treatment locally that may delay his death for a few months.

c - calling the hospice organization to establish a care modality that will help him die at home in as little pain as possible.

And as the gentle oncologist Dr Estey kindly told us during our final meeting with him in Seattle before getting back on the plane: "Of course making no choice is in and of itself a choice."

In the meantime my job is to wait.

More precisely: My job is to wait and love, to wait and hug, to wait and cook, to wait and garden, to wait and support.

Anyone who knows me knows the one thing I am absolutely the most unskilled at is waiting.

In the last three days my crazy mind has entertained -among other things- the following:
- sitting for the Washington state psychology board exams
- buying the house across the street from Tad
- writing a book about our experience of healthcare and insurance in America
- writing the doctor in Berlin who helped cure a patient with a similar profile and asking him if he will take us
- contacting a Santa Cruz socialite fundraiser for the Leukemia society whose name I saw in the paper and seeing if she can raise $100K by creating some kind of town-wide, reality-show-type, support party that saves Tad's life
- telling Tad to accept hospice
- telling Tad to accept treatment
- moving all of my stuff into storage to free myself of my rent in SF
- finding a sub-tenant for three months to free myself temporarily of my rent in SF

Some of these might be really good ideas. Some less so. None of them looms large enough in my heart and my mind that I am moved to actually make it happen.

Part of the lack of focus is simply due to the incredible brain-drain it takes to be a full-time caregiver. Recently an article was published explaining that part of the reason people in poverty have a hard time getting out is in part due to cognitive overload. So burdened are they by multiple problems that their capacity for reasoning literally becomes diminished and they either make bad choices or, worse, make no choices and end up paying high fees. This sounds incredibly familiar.

Ironically when my mind is racing through all of these scenarios I tend to forget love. I forget we're connected to this huge network of people who ADORE us; I forget the calming effect of the cards and phone calls, the checks and hugs.

I understand why money is so attractive to people. It's so concrete, so universally recognized. Unlike love I never doubt its value or its power to change my circumstances. Love is far more mysterious - and yet deep down I know it is a far more powerful currency.

The irony of our situation is that Tad has more energy and less pain today than he has had in months. The financial model for typical cancer care is sort of U-shaped: lots of spending in the beginning and end with less costs in the middle. I imagine we're in the middle of the U, hovering between treatments, between oncologists, between cities.

Hovering.

And in that hovering trying to remember love.