The Patients For A Moment blog post collection is up at Duncan Cross

Duncan chose a very interesting theme - What do you do to recharge?  The posts are insightful and worth having a read.

Angelina Jolie's Choice

Many of you by now have heard about Angelina Jolie's choice to have a double mastectomy.  This is such a personal decision that I dare not comment on anything other than her ability to go through whatever it took to come to her decision.  I'm sure it took a lot.

One thing I do know that it took, as she noted in her New York times Op Ed, is the support of her partner.

Not many, if any, commentators focused on the couples part of her story.  But consider the discussions they had, the times they held each other and cried, what they laughed about, and what kind of future they are imagining (because even with this surgery, it's not over).

She wrote:
"I am fortunate to have a partner, Brad Pitt, who is so loving and supportive. So to anyone who has a wife or girlfriend going through this, know that you are a very important part of the transition. Brad was at the Pink Lotus Breast Center, where I was treated, for every minute of the surgeries. We managed to find moments to laugh together. We knew this was the right thing to do for our family and that it would bring us closer. And it has."

While essential, it's not just about the partner's love and support.  It's about his carrying the load with her.  Entering into it.  Feeling empathy, and sympathy.  Understanding when to discuss, when to lie in each other's arms, and when to share what this means to him.  It's about holding hands and jumping off the platform together into a future you never envisioned when you made your commitment to each other.

A friend sent me this Zen teaching.  This is what I wish for this couple, and all of us:

Welcome everything.

Push away nothing.

Bring your whole self to the experience.

Don't wait.

Find a place of rest in the middle of things.

Cultivate don't-know mind.

Recharging

Both Richard and I are in the patient position right now.  He is recovering from open heart surgery that replaced and repaired heart valves.  And I am on my familiar pain roller coaster, which of course, is reactive to Richard's state.  It's as if we're hard wired into each others nervous systems.  When he has heart flutters, I have pain poundings.  When my pain is rising, he develops the empathy blues, which is not healing for his heart.

In the past, when I was the sole patient, if I sank into the pit of doom, I could count on Richard to shine the light of hope.  His commitment to my improvement would infuse me with something like hope.  His presence and kindness, replenished me.  And when I felt better, emotionally and physically, he grew lighter.  That was our pattern.

Now we are on new turf.  Both of us patients.  He can't tolerate too much doom, and I slide down the slick walls of the pit too easily when I don't hear his voice calling to me.

As unfamiliar and disturbing as this disruption is, it is also a call to action.   I confess, with embarrassment, I have gotten too comfortable with the patient position, too self protective.  This inversion of roles is actually recharging me -- inviting me to step more deeply into my own capabilities and into taking care of the person I love most.

I spent 14 hours a day by his side when he was hospitalized for 10 days.  Now that he's home, I do the shopping, the laundry, and take out the garbage.  Little things - but markers of engagement with the world.

My biggest surprise is that as I do chores for Richard's benefit, and do them with love, I grow stronger, and I have a wider field on which to show my love.

btw -- I don't recommend this route to anyone as a path to recharging and becoming bigger than you think you were.  But it was given to me and I'm liking the results.

Two Other Books to Recommend

I highly recommend these two books.  They will create openings for you:

The Last Best Cure, by Donna Jackson Nakazawa

Here's a bit about the book:

One day Donna Jackson Nakazawa found herself lying on the floor to recover from climbing the stairs. That’s when it hit her. She was managing the symptoms of the autoimmune disorders that had plagued her for a decade, but she had lost her joy. For years, she’d been living on what she’d come to think of as the “Pain Channel.” She wanted to tune into the “Life Channel” instead. As a wife and mother of two, she was determined to get her life back. As a science journalist, she was compelled to understand why her brain might be her last best cure.

How To Be A Friend To A Friend Who's Sick, by Letty Cottin Pogrebin

Here's praise for her book:

"How to be a Friend to a Friend Who's Sick gives us excellent tools and moving experiences to love and nurture the sick and dying.  It urges and enables us to move towards those in need rather than fleeing in terror or despair.  it is a handbook of kindness and care and will help patients and healers, which is ultimately all of us."
-- Eve Ensler, playwright and activist

Book Recommendation: In the Kingdom of the Sick by Laurie Edwards

I think you will get a lot from reading Laurie's book -- as I did.  Here's a quote about the book:

"...People with chronic illness owe much to advances in medical technology, but they also are aware both of the limits of science and of society's throwback belief--subtle or blatant--that people who are sick have weaker character than those who are well. Through research and patient narratives, Edwards looks at the origins of these attitudes, and from the advent of modern vaccinations through present day, she traces the experience of being a patient with chronic illness through such cultural influences as the disability rights movement, the women's health movement, and the rise of the Internet and health 2.0 technologies..."

Critics call In the Kingdom of the Sick "surprising, revealing, and beautifully written," and a "probing, clear-thinking examination of the new medical crisis on our hands: chronic illness."

When Patient Becomes Caregiver

This is what I feel like shouting:

"Hey world, and all those omnipotent beings who flick the switches, I'm the one who is supposed to be the patient in this version of life.  You slammed me 12 years ago with a chronic pain condition and I've put in all this time coping, seeking, hoping, losing, and gaining.

I count on Richard to be well.  More than well -- to be strong and filter the world for me and do the grocery shopping.  Now you go and slam him with open heart surgery and valve replacement.  Jeez.  Couldn't you have started with something smaller - like a torn meniscus.

And, of course, you tricky devil, the stress of this experience is like a match thrown on the gasoline of my pain.  So there he lay in his hospital bed and there I lay, on the couch in the hospital room, curled up with an ice pack, trying to do my best to be attentive.

But I do thank you for making his illness experience such a good one, given the parameters.  He, thank you, is doing great.  Home, now walking, almost pain-free, optimistic, and even able to put dishes into the dishwasher.  HIs doctors are happy, which means we can all be happy.

But I have to drive him places.  And make real dinner and lunch and breakfast meals for him.  Which means I have to go grocery shopping.  Don't get me wrong,  a big part of me is delighted to be able to care for him and give back a bit of what he's done for me over the years.  And it feels great to help him, because I love him and would do anything I could for him.

But jeez, really....open heart surgery."

Dumb Things Practitioners Have Said

I have heard terrible stories about dumb things practitioners have said to patients.  For me, the worst ones are the ones said to women who are suffering by practitioners who don't know what to do, so they say variations of: "It's in your head."

I hate this for two reasons  One, it's paternalistic and dismissive. Two, everything is in your head.  Your head is connected to your cancer, arthritis, ulcer, aortic artery, and your nameless pain.  And, if you accept the mind body connection and the placebo effect as real, then the head is an integral part of it all.

I have never actually had this happen to me, even though my pain was mysterious and undiagnosed for many years.

The dumbest thing that was said to me was a doctor telling my husband to wait in the waiting room after I had asked if he could join us.

When you're a couple and one of you has pain, it's four hands that are carrying it, and two minds that are bearing it.  My husband's presence in the doctor's office not only gives him information, but gives us both a way to share in whatever is to come; and that makes it all a little bit lighter.

For the doctor, I was pain, not a person.  And he was treating pain, with chemicals.

I insisted Richard join us.  And what could the doctor do but acquiesce.

But it shouldn't have been acquiescence.  It should have been recognition that Richard and I are in this together and are each other's ultimate resources when pain puts the lights out.

What dumb things have practitioners said to you and your partner?