This morning, Regina Holliday unveiled her first Medical Facts mural at Pumpernickels Deli on Connecticut Ave., in Northwest, DC.
If you are unfamiliar with Regina's story, I hope you'll pause to read it here. Her story outlines the series of frustrations and set-backs (understatement) she's experienced while serving as principal caregiver to her husband, Fred, not yet 40, diagnosed with Stage IV Kidney Cancer early this spring. Fred is now receiving hospice care.
Regina, a mother of two young boys, is an experienced social advocate, having spent years working for special ed reform. Now she plans use her time and talent to bring attention to the issues of transparency in health care.
Links related to health reform:
Ted Eytan writes "Is it meaningful if patients can't use it?" "Read Atul Gawande's New Yorker article" (via e-Patients.net) Donate to Regina's fund
e-Health thinking on this blog:A limitation of Health 2.0: Interpersonal interoperabilityAre we betting on the "me" in medicine?Shopping for health insuranceIf e-health was simple...
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Regardless of how we handle the conversation about data and making sure that health information is interoperable across a national health platform (I know we'll get there...), another currency of healing will remain "interpersonal," but with just as much of a need for "interoperability."
That interpersonal currency is called intimacy; the ability to push on with dialog, transparency, and reciprocity in spite of an assortment of uncomfortable feelings that might come up in the process of interacting with illness or even the imminent threat of death. We all share a piece of this space.
A 37th birthday
This morning I received mail from a woman in the midst of a fight for her husband's life. He is diagnosed with stage IV kidney cancer and is in a very challenging place. He is not yet 40, she will be 37 this weekend. They have a 10-year-old with high-functioning autism and another child, just 3 years old. She is an advocate for special education and is extremely gifted.
As I read her story, it struck me that I am completely powerless to "understand what she's going through" and, yet, I (like most people) simultaneously wished to ease her burden. This is a sweet spot for interoperable interpersonal stuff, aka "intimacy."
So, when she told me that it was her birthday on Sunday, I went back and forth with whether-how-if I should reach out with an offer to bake her a cake:
Internal dialog
"She's going to think that I am off if I offer a cake in the middle of this crisis," I thought. Then, I reasoned, "Someone else closer to her has already offered a cake, so don't bother even asking." Finally, I imagined, "Offering a cake is so trite, so meaningless in the face of this kind of situation." Each of these arguments revealed that I was uncomfortable getting closer to the situation; I was scared of being overwhelmed; sucked into a conjured-up messy sick place. I know you get that.
Reaching out
Offering nothing was not an option so I wrote and re-wrote until I just typed out this very short note:
Her name,
I can feel your kick-ass courage; keep on doing what you are doing. This is a tough case and you are doing an amazing job.
Can I bring you and the kids something simple and delicious to eat on Sunday, for your birthday? Maybe a simple dinner with cake for dessert? Heck, I'll even stay to eat and clean up if you want the company.
Christine
A complicated simple
It may seem like a simple message, but I tolerated a great deal of internal dialog to feel like I got it right and didn't patronize her. Remember, when we are on the outside of a healing crisis, we aren't driving the dialog; the other side is. We have to realize a certain loss of authority and control. I hit send.
Her reply (double-checks the sincerity of my offer to bake her a cake)
Christine,
... Would you like to drop off a small cake for Sunday? ...
I was delighted! I quickly wrote back:
I would love to drop off a cake. How do you and the kids like white cake w/ chocolate frosting?
Christine
She fired back
Dear Christine,
White with chocolate frosting sounds very yummy. Thanks so much,
Intimacy confirmed
She used the word, "yummy." How unexpected.
This intimate exchange reminded me that the more we can be authentic and offer our own goodness from that uncomfortable but compassionate place, the more room we give the so-called "patient" to do what feels right for him or her.
It may be a bit sticky or awkward, but sometimes it can be quite "yummy" too.
Related:
People, not patients
Shopping for health insurance
Are we betting on the "me" in medicine?
If e-health was simple...
Gregg Masters, a friend on Twitter, posted a link yesterday to: The dishonesty of honest people.
After reading it, I started thinking about what kind of major disruption consumers could cause if we made room for productive honesty in the health care space.
Huge challenge, but I'll still be asking, "What would make it just a little bit easier to admit fault or frailty to a friend?"
If you knew you had an "A" already - from the friend, the doctor, etc. - would you loosen up into the truth? That's the healing space.
Take it: The Mother's Day dare
Friends can't help but chuckle at me when I hop on my, "What we really need for the kids during the summer is unstructured, outdoor play," kick. I am used to their chiding by now.
So, when I heard, "You are swimming up stream with that idea," from our friend last night, I wasn't surprised ... 'til he added:
"Fish that swim upstream spawn and then die."
Ouch. Was that utter cynicism from him? Or am I a complete fool to believe in unstructured summer play as a viable option right here in the busy city?
What to do?
A wave of doubt flickered through me. My intuition guides me that children are curious about nature and the outdoor world from birth but that it is parents' unresolved discomfort with outdoor life that curbs their wonderful enthusiasm. Much like language; it's use your nature literacy or lose it.
The benefits
A summer in nature is an essential restorative for young, school-fatigued minds. Outdoor play is physical without being labeled "fitness." Wildness is full of great material for childhood: risk, reward, imagination, boredom.
My friend has a point ... I mean, I really don't want to burn out on this issue ... what good could come of that?
Take a hike
Deadlines for plans are fast approaching. Let me take the kids out hiking and think on it ...Related:
This morning, Regina Holliday unveiled her first Medical Facts mural at Pumpernickels Deli on Connecticut Ave., in Northwest, DC.
