Wednesday, September 30, 2015

We are terrible, mothers.



She was my first heart break.   That sunny June Thursday afternoon, during a family communion of tears and clasped hands over Pho in Seattle’s International district, we heard the news - extensive mets throughout my lungs, liver and skeleton, in particular my backbone.    That evening, watching my 14 year-old daughter at her 8th grade graduation awards ceremony, my heart broke into pieces and fell into sobs that extended to the bottom of my soul.   My beautiful, powerful, formidable daughter, a brilliant bud of personal power on the edge of what would surely be a bold, brave, flowering adulthood.   And I was going to miss it.  I was going to miss her. 

First I worried.  I fretted.  I needed to protect/arm/push/correct her…   Save her from the pain of losing me, prepare her for a life where all of her personal family relationships would suddenly be redefined and turned upside down, push her to mature more quickly,  correct my parenting mistakes, my flaws enacted upon her and through her….

She tried to reason with me.

“Mom?” she said that September, as she went off to high school.  “I’m sad you have cancer and I feel sorry for you, but it’s really your thing.  It doesn’t really affect me.”

It has taken me a full year to understand the wisdom of her words. 

My first response was to push harder.  I was more direct.  Taking her to lunch so I could confront her with my cancer.  Telling her that her dying mother’s request is that she seek therapy.  Forcing her on a mother-daughter trip to Oregon and pushing into her face the “wisdom” I wish I had known before walking my own mother to her death last November.

“It doesn’t matter what you do, watching someone die is horrible.   You will always think there was something you could have done differently or better, no matter how hard you try.  You will always feel a conflicted collection of love, frustration, fear, grief, guilt and even disdain towards your loved one as they die.   It’s just hard.  I want you to know everyone feels that way.”

My 15-year old’s face was frozen, her eyes blinking back tears.

I need you to do therapy because I need you to grow up more quickly, I tell her.   I need you to be ready to do your part to deal with how everyone’s needs are going to change.  We all need to be ready to be a bit more for each other.

(I want her to grow up more quickly so I can feel connected to her again, I tell my therapist.)

She has a big robotics meet on her birthday.  Parents are bringing food for the kids’ lunch.  I bring a couple of huge sheet cakes that say Happy Birthday, Delphine.  She’s so mortified she can’t stand to stay in the lunch line.  She walks out. 

I leave in tears so heavy I can barely see out the front windshield.  A piece of my heart has been cut out.

(I wanted to love her and all I did was hurt her, I tell my therapist.)

What are you so anxious about?  Why do you pick at her so much?  Asks my therapist.

I had thought of myself as proactive, forward thinking …mothering – not anxious and picky. 

My myth

I’m worried about her ability to be happy, to connect and nurture friendships at 15.  Who is really connected to anyone else at 15?

Reality

I see her joy and laughter in the company of her new high school friends, her dedication to her goals, her conscious, successful strategy on finding and nurturing a new community around herself.

I wonder in amazement (and annoying motherly approval) at her ability to analyze our relationship and communicate to me what she finds disturbing. 

This is not a young woman who will have difficulty nurturing and maintaining relationships as an adult.

My myth

I’m worried there won’t be anyone she’ll let hold her, to carry her when she sobs with grief.

Reality

I’m grieving that I am no longer the person she turns to to hold her when she is wracked with sadness or uncertainty.

My myth

I’m worried that she will not remember our good times. .  I worry that what we had when she was little, Camp Fire trips, our cuddles, our big birthday party planning sessions, our bedtime stories – our connection, my ability to hold her and calm her when nobody else could – that these memories will be overwritten by these middle school and high school years when I grasped and grappled and struggled to hold on to her while she insisted on growing up and unfolding into her own person.  

What if this happens?  What if she can’t remember that earlier us?  When I die, who will remember these precious memories I have of she and I together?  Who will keep them alive?

Nobody will.

And there it is.

Nobody will keep my own precious memories of my life with her alive.  Nobody will keep *my* memories of any of the relationships I hold dear alive.  Each person dear to me will hold their own memories of us. 

And that’s just how it is, in life or in death.  We each hold our own experiences and memories of connection, joy, sadness, grief and love.

Death doesn’t change this.

My memories, my experiences, are mine.  They live with me and they die with me. 

And so I mourn myself.  For the first time, I actively mourn the loss of me.

My memories.  My experiences.  My joys. 

I had been striving for this imaginary relationship with my daughter, an impossible relationship, where my needs and my losses where suddenly appeased and released by some imagined adult re-creation of that feeling I had when I cuddled her 2-year old head against my shoulder, a re-creation of the endearing connected love I felt for my mother as she passed on.

I move my mourning back to where it is centered, me.  And there I work it and release it.  I free her from my imagined needs.

And I see her.

This amazing 15 ½ year old whose ability to tap into her own honesty and insight allows her to now create writing pieces better than my own.  This amazing tenacious gritty academic who hungers for challenge and walks determinedly through her tough classes and heavy list of outside commitments.    This insightful and articulate observer of human relationships, this poised self-aware maker of her own future.   

I mourn her.  I mourn her because she is 15 and growing up. 

I mourn for myself because I am 48 and losing one of my babies to adulthood.

Not cancer.

And we are perfectly and authentically 15 and 48, daughter and mother, glorious, just as we are.  I’m perfectly imperfect at mothering.  She perfectly capable of being the whole, healthy person she is destined to be.

My issues with losing her are indeed my problem, not hers.    And cancer is not the problem.  Hers or mine.

Her memories are her memories.  Her future is her future.   Her path is her path.  Her losses and her joys will be just that, hers.

Maybe we parents are wrong when we moan and groan about our teens.  Maybe teenagers struggling for independence and identity formation are not “the problem.”

The problem is us, mothers.  We are tangled in our love and we are terrible.

And that will just have to be OK.







Wednesday, September 2, 2015

Hoisting the Cancer Backpack










It's amazing how easy it is to hike when you don't have to carry a pack.  The air seems lighter.  The ascents don't feel so steep.  

France wasn't just an amazing family trip.  It was a vacation from cancer.  

There's a cultural pattern to how Americans respond to evidence of my cancer.    People are open, up front, sympathetic, caring and forward.  My bald head is an announcement, a welcome sign to others who have walked the walk.  And I benefit so greatly from this cultural perspective.

But I have to admit it was nice to spend 5-weeks in France, where the only clue to other's awareness of my cancer was a little bit more kindness and respect.  The public reaction was so different from here that for five weeks, it was almost possible to believe I wasn't living with cancer, despite neuropathy that woke me at night and lungs that seemed to be on strike that first week.  

Coming back to the U.S. was like settling in again to a heavy backpack.  It's well worn and shaped to my body, so it's not uncomfortable.  In fact, there's a solidity in it.  It's weight reassures me of my strength.

But it's a bit heavy.

Wednesday, August 26, 2015

Puppy Love


Getting a puppy while in treatment for cancer is a bit like buying a puppy for Christmas.    There’s a clear and present danger of emotional magical thinking.    Of the families I know that have endured cancer or other terminal illnesses and ended up with the “cancer dog” about half of those family placements have ended up being successful.  (The other dogs were rehomed successfully and happily.) Illness gets bigger and demands on the people involved become overwhelming.   There just isn’t always the time needed to train a puppy well.

So in the last eight months, since we lost Moby, our horribly incorrigible and intimidatingly intelligent Beagle, I’ve been interviewing my dog expert friends, interviewing my cancer surviving friends and working a LOT with my therapist.  I have the time and the resources for a puppy right now.   But really, emotionally, why do I want this dog?

When my therapist asked this question, I cried.

When I talk about why I want this dog, it still makes me cry.


This dog will play with my son when I can no longer do it.  He’ll cuddle him to sleep.  He’ll attend soccer games and celebrate victories.  This dog will be the constant open heart my son’s own warm soul can connect to.

This dog will take walks with my husband.  He’ll sit in love with him at breakfast or as he works.  He’ll pull him out of the house and create that healthy irritating mess of living needed to bring him out of his own head a bit when the kids are busy with their own lives and he’s left with too many open spaces.

This dog will illustrate the nurturing power of my daughter’s discipline and grit.  She will be our leader.   And although her own school life will keep her too busy to do the work herself (and she’ll leave for college now much too soon), her consistent thorough thinking, planning and carry through will guide us all through the consistency and heart needed for good training.

Last year I bet on 12 months.  I planned for 12 months of health to enjoy travel and good friends and family.  I celebrated camping in Victoria, family at the Oregon coast, girlfriends at Whistler, friends and family at Teatro Zinzanni, couplehood in Hawaii, my son in Disneyland, my cousins, aunt & uncle in the Philly area, family and stage IV heros in New York, my daughter in Oregon’s Rogue Valley and my frenchie family in France.

18-months.   I’m going to assume I get 18 months healthy enough to keep training and caring for this puppy.   Puppy adolescence.

Because I’m not sure I’ll get enough healthy time to nurture my own kids through adolescence, I am going to pour all of my love and motherly nurturing into this dog so that he can keep pouring that love and nurturing back into my family after I am gone.





Thursday, July 23, 2015

The Purpose of Health




When a former student grabs my hands in the Bellevue College Writing Lab and begs me to come to church with her because she is CERTAIN that this will cure my cancer, I am touched.  I hold her hands tightly, look into her face and thank her for her care and her concern – her distress, her need to help me, to do something, echos deeply in her eyes.

When people came to me in tears, anxious and upset about the news of my diagnosis, I felt honored, cared for.  And I didn’t feel responsible for their feelings or burdened by them. 

But this is now.  Before my first cancer diagnosis, I was always quick to offer unsolicited advice, solve problems that were not mine to solve.    I didn’t see myself and others as being on different journeys.  I saw us all on the same path…with myself in a slightly better position on that path, so therefore something to offer everyone else.  My insight.  My path.

But it’s not my experience with cancer that helped me cure this.  It was my journey exploring my own Whiteness.  Learning about how my attitudes and behaviors linked back to my cultural privilege allowed me to learn to see people and be more present with myself.    Learning that my place on the pathway has much more to do with the systems and networks that allow me to move to good places than any kind of personal achievement, insight or behaviorhelped me stop preaching and learn to listen.  And now I am a better teacher.

When a peer parent gives me a book about her Christian God or another talks about her famous healer friend or a colleague tells me about mushrooms that can offer a miracle cure, I used to be annoyed.  Maybe it’s because that concern and distress wasn’t so deeply apparent in their eyes.  They looked confident and assured.  Annoyingly knowing about something they know nothing about – MY journey. 

So I’m still working on this privilege thing and my ease with self-centeredness.

It took me awhile to teach myself to think of all of the things people share as being artifacts of their own journey with mortality and loss.  And that changed everything.  The book of inspiring Psalms becomes documentation of a friend’s chosen path for her journey and learning.   The healer is a door into a peer parent’s deepest struggles with life and meaning.    The mushrooms, evidence of a colleague’s need to control her mortality through a food path to pure living.

Looking back on my blogs over the last year, I realized even the rants about pet peeves over irritating behavior are really deeply about me.  These are things I do and have done.  These are aspects of my culture and my identity that pop out at me now and irritate me.  Things I need to work on.

I am the culturally Christian woman who feels chosen and somehow uniquely blessed.  I am the evangelist who chose food as a means to cure my parents lifestyle addictions after their first heart attacks 25 years ago, to inspire my daughter with a sometimes unhealthy attention to food and exercise, and to control my own mortality.  

I remember when my mother planted an herb garden for me in my backyard.   She cleaned out a wooden planter, grey with weather and age, on the edge of my cracked and mossy patio.   Her herbs grew big and bold, overwhelming the entire box of plants and melting into the “natural” landscape of our yard, overgrown bushes, big old trees and a patch of brown crewcut lawn that has been more weeds than grass for years.   For over ten years now this little garden has supplied the fresh flavor I love so much in my meals and it seems to survive all abuse I can throw at it.  I’ve always hated gardening.  The yard was always too big, too out of control, too much work to even think about.  I would never be able to make it the manicured, mindfully constructed, neighbor impressing yard I thought I needed.   I love this overgrown herb garden in my messy yard.    It was the first time that I realized that gardening is not about controlling life, but nurturing it.

I am seeing a therapeutic masseuse to help deal with a strangely swelling right buttocks.   My masseuse and I share a lot in these sessions.  There is something about laying naked with another person’s healing hands on you that creates an immediate intimacy, a comfort in vulnerability.    For each thing I share, she shares back something equally vulnerable and personal.    She creates a story of her own journey next to mine. It creates a space for two full people.

She is currently working with three stage IV cancer patients.  She talked about how vibrant and special each of these patients is, how connected and caring, --and how unfair it seems. 

Death isn’t unfair.  And having cancer can be a great way to go, considering other options.   Many of us get to experience health and some amazingly intimate, happy time with our loved ones.
As humans, our risk of mortality is 100%, she agreed.  But with all of the work she has done with health, connecting the body, the mind, the heart – and growth.  She felt it so unfair that people who had attained such an inspiring place of growth and connection would have to leave us when they still had so much more to share.

Individually, I don’t make a big difference in the world.   I have my shining moments and some brilliance to aspects of my identity, but overall, I’m pretty averagely flawed at most of what I do.    My only impact is in how I connect with others and how they go on and connect.   

Maybe the purpose of all of that health, that internal growth and connective mind/body/soul work isn’t about controlling mortality.       Maybe health about something else than avoiding death.

P.S.  A mere hour after writing this post on an airplane headed for a long vacation in France I received news that my tumor markers have gone down yet again!    Way to blow a moment.  LOL.

Living with health AND your mortality pushed back a wee bit is pretty nice.

    







                                                                                                                                        

Monday, July 20, 2015

Loving and Living!



My days this summer have been filled with travel and outdoor adventure.    Good books have been more tempting than computer keyboards -- so forgive me for abandoning you all!   I will write more as we start our 5-week journey in France this week.  But here's a quick photo update of my summer.









In addition to glamping on Orcas Island, rafting the Rogue River, eating and watching plays in Ashland, and cheering on the women's team for the World Cup, the boys and I have spent five or six days playing at Beaver Lake and are off to Wild Waves today.    

We've not done a tumor marker test, but I feel great.  I did have to skip one week because of low white blood cell counts and there was that whole issue around breaking a tooth and needing to remove it.  I'll blog about that later.    I'm getting a "big" chemo, a dose for three weeks, on Wednesday and then taking off to France for five weeks.  I'll look at tumor markers and such when I get back.   For now, I'm focused on living these planned experiences.

More soon!

Friday, May 29, 2015

Day Drinking? Don't buy more than one bottle of wine.






Look at that!?   Descending tumor markers continue!    I'm now at a measure that is below anything we've measured since the day I was diagnosed, in June 2014.

And you know what I did?  I spent the Wednesday before chemo DAY DRINKING.  My Wednesday appointments had to cancel -- and I have a clear memory of deciding, upon hearing that news, that I would get a bottle of wine and do some light afternoon day drinking.

I had these magical thoughts... thoughts mixed with guilt and a sense of control.  If I drink, I will change the outcome of my tumor marker test.  If I drink, I will change the outcome of my liver enzyme test.  In testing my ability to change fate, there is hope and fear at both outcomes.  Control ....would that be wonderful?  And no control...isn't that freeing as well?  And I'm so fucked up about it all.

I thought my drinking the day before chemo would cause my liver enzyme markers to rise (they went DOWN!) or that I would make my cancer suddently flare (LOOK!  LOOK!  Taxol is working!)

But I didn't day drink because of these tests or appointments.  I was day drinking because with the consistent falling markers and the growing strength I feel in my body....I started trying to take action on the things that have frozen me.  I had a contractor come in and give me an estimate on the work I want done on the house before I die.  I met with a close friend who is producing some heartfelt work I want ready to present to my dearest and closest when my day comes.  I talked to her  about her own journey dealing with her father's death when she was still a very young and vulnerable adult.

Ramona Brandes just lost both of her parents.  She was talking to me about how she can get distracted by nostalgia while she tries to make progress on getting her parents' estate in order.  She described it as a distraction from the real emotions of loss and grief that lie underneath but are so much more disagreeable than nostalgia.

My journey, until now, has often been very cerebral -- nostalgic, even.  And almost a YEAR after diagnosis, I'm finally getting around to doing the REAL stuff to prepare for my death (be it next year or in ten).  I'm scheduling contractors.  I'm creating artifacts for my dearest and nearest.  I'm scheduling meetings with an estate planner.

To actually DO this stuff, rather than fantasize about it, is a completely different task.  There is avisceral response, a bodily vomit and angst that overpowers my cerebal desire to dabble in nostalgia.

Being human is complicated.



Monday, May 18, 2015

The Color of Hope





Novartis, a pharmaceutical company that produced most of the drugs that kept me not only alive, but growing, healing, playing and rejoicing last year, invited me to their blogger summit in New York City on May 5th.

The women and men representing Novartis at this gathering were clearly authentically engaged, inspired by the opportunity to work with these women whose lives are improved by their company’s work – and in this group, a small set of Stage IV and Stage III survivors who blog about their illness,  humbled and honored by the insight available to share.

Every small push forward creates a few months here, a few extra weeks there.  It adds up.  And the results are powerful.   Four of these women bloggers have been writing and reflecting on their illness for years – a privilege and a freedom made possible by the treatment options and high quality care available.    One woman has written and published a book.  Another is a Vice President of a national organization to support women living with advanced breast cancer.  Still a third runs an international nonprofit which funds start up research ($40,000 annual grants) in treating metastatic breast cancer.  

When we meet, we immediately begin sharing like reconnecting lifelong friends. 

“After diagnosis I went through what I call my REFORM period, you know, when I tried to drop all my bad habits,”  she says with a cocktail in hand, “but then I just realized I’ve got to live as me.”

“ME, TOO!”

Around the dinner table the bloggers bond over shared experiences.

“It’s hard to get people to understand what I’m going through.  I’m a sick person masquerading as a healthy person.”

All heads nod.   I’m nodding, too, despite my bald head.   (I’m the only bald survivor in the room.)

I ask my sister-survivors to define “sick” for me.  Did they mean that they feel ill or that their prognosis is grim?

The chorus from the table is that latter.  We all feel good.  We just know that given current treatment options available, we are all going to die from this disease.

We laugh and cheer.    We honor each other with respect and careful listening.   We share tips on managing alcohol and chemo.

Almost as a case in point, one of our Novartis leaders gushes next to me about how inspired she is by our optimism. 

I know the emotion she’s catching, the sense of sunlight and spring breeze that floats among us at that dimly lit formal restaurant table.    

There is a centeredness to each of us which clears the air of the usual social anxieties.  We are women who have unfolded the prospect of our own death and walked into it.  We wear our awareness – a heavy cloak that dampens all the social crap that usually clouds the air between people.  And when we have the time and space to be still with each other, the air between us becomes clean, light, uplifting and filled with life.

The experience of wearing this cloak is different for each of us. 

For the women heading up national non-profits, I imagine the cloak grounding them, providing weight to their step and measured thinking about their path forward.

For some of us the cloak can be a shield, a protection against misplaced priorities and pressures.  Shedding my ego fueled concerns before learning to wear my own death, felt precarious, fragile and dangerous.  Vulnerability felt like a raw open wound, skinless flesh.

The embrace of death swaddles me, calms me in my own soul and body.  It keeps my gaze focused on life and love at a present local moment. 

It’s like optimism without the frenzied hunger of hope.  It’s like gratitude without the beholden thank you.

It’s the exaggerated slow dip and pull of a spoon filled with incredible Tiramisu from your mouth.

Ich geniesse the act of living.

It’s a heightened awareness of the capacity for light, love, joy, connection, beauty, sorrow, pain and pleasure we are given in this world – and appreciation and gratitude for our humanity. 

I like the security of this weight.   I am content to walk with my sight on close horizons.  There is plenty of beauty in this space.  The laughter in response to my 10-year old’s humor.  The depth of friendship and admiration with my lover, my spouse.   The carefully hidden pride and wonder at my daughter’s emerging adult self. 

So when my last PET scans results showed, for the first time, a pretty uniform response to my latest treatment, I took pleasure in the joy that result and the following descending tumor markers brought from my friends and family. 

But I held tight to my cloak.  It’s a data point and confirms my plans for the summer will most likely hold firm.  But the horizon doesn’t shift much.  The path does not change course.

There’s a strange isolation I feel in the joy I watch spread among my friends.  

But then there were a couple of strange flappy arm and leg events that I knew would have to be reported to my oncologist.    It was unusually easy for me to share these episodes with her.  I had the worry (brain mets), but not the anxiety.

To not grasp at hope is not to be without hope.  While I walk with my gaze as present as possible, I still let the possible float – maybe I will see my son accepted into Bellevue’s International High School next Spring.  Maybe I’ll watch him start his new school in the Fall of 2016.  Maybe I will go with my daughter to get her driver’s license next March.  Maybe we’ll finally go on that mother-daughter trip that SHE would like.  

These hopes float like colorful balloons behind me, just beyond the periphery of my vision.

So the MRI scan of my brain was just another data point.  Another rock on the same path.  A possible detour towards the same horizon.

I held my cloak close to me and discovered that people can actually live long lives without their cerebellum.  There’s quite a significant  1-year survival rate for high functioning brain mets survivors when whole brain radiation is used as treatment.  

Same path.  Same horizon.  Just data.

No anxiety.

I felt light when Dr. Wahl called with the results the following morning.  Clear?  No mets? 

Awesome.

AWESOME.

Wow. That’s really awesome.

And I’m damn grumpy about it.  It’s another steroidal weekend where my husband’s voice is irritating in its light, velvet French smoothness.  The swim suit clerk at Sylvia’s incurs my wrath for suggesting three times I’m might be happier with a more padded lap swim suit.   The poor young life guard gets the steely gaze of you’re-wasting-my-life for her inane  lockerroom blather.  The Pizza Hut manager gets a royal F*** over the phone, which puts my son in tears, mortified his friend has heard his mother’s inappropriateness.

I lay in bed on Sunday morning, in the sunlight with my partner and friend.  We talk.

Suddenly my cloak has fallen away and I’m grasping those balloons, I tell him.  I’m holding another family trip, a summer preparing for my son’s big journey into middle school.  I’m holding my daughter’s first teenage job and the image of driving her, maybe, just maybe, off to her first day of college in 2018. 

I’m unearthed, untethered, floating and turning.

It’s just as emotionally difficult to let the horizon shift out as it is to let the horizon shift in.  In my hands I hold those hopes for the future so tightly I fear they will burst with tears.

Slippery, maddening, glistening tears.

So today I will go and swim in the warm sunlight…because it feels like the color of hope.





Friday, April 10, 2015

Good News!




So what do YOU do the day after chemo?  This morning I arose well rested at 5am.  Greeted a fainting-while-vomiting daughter at 5:30.  Taught the ten year-old how to care for a fainting-vomiting teenager while I went away to teach five hours.   Next I'll shop for a BLOUSE because I'm taking a red-eye to Philadelphia and apparently everything my lovely soul-sista-cousin Kerstin signed us up to do has a DRESS CODE.   Even the dang dining room at the old folks home where my Aunt and Uncle live.

A boobless woman shopping for a blouse is MUCH MORE COURAGEOUS than the spnning amusement rides and huge family gatherings I written about for previous steriod happy days.  

The post-chemo highs are much less intense now.  My oncologist cut the dose in half.  But they're still strong enough to be fun.    And the treatment seems to be working.  Tumor markers are down!  

I've been thinking big thoughts and planning out more interesting blog posts than this one.  But I forgot that teaching online makes computer time feel less like time off.    


Tuesday, March 31, 2015

Life and Death with Dignity


 


I started therapy with Hemlata Mistry because a couple of my behaviors had become unhealthy and I was at a loss when trying to change them.    Through good therapy and an open heart and mind, I healed.   I was in a state of mental health when I was diagnosed with Stage IV Breast Cancer in June 2014.   

The thing about healing, though, is that you can always get healthier.  And unlike our physical bodies, which are limited by the laws of Physics, we do not know how much mental and spiritual growth is possible.    Because of health care reform I have unlimited insurance coverage for mental health care.  So now therapy has become a kind of preventative health measure for me, a proactive move towards health as I walk towards death.   It’s a weekly workout with a personal trainer as we stretch, build muscle, in mindfulness, reflection, vulnerability and love.   

For my entire life, I have been privileged with easy access to communities of practice who devote themselves to this kind of work, scholars of humanity and social justice.   From the bold brilliant heart that attracts and has attracted me to my very best lifelong friends, to the discussions of language, power, beauty, justice and academic activism taken up by my scholars of the humanities, to the painful, frustrating, transformative work of social change marched forward by my colleagues,  I am surrounded.  I am stimulated.  I am moved.  Je suis eduque.

I arrived at 47 through a lifetime of reflection, some documented in a 7-page academic resume and others in the deaths, in the last decade, of friends caught by cancer in their youth.  The deaths of my own parents.  But the overwhelming majority of that reflection is captured only in the hearts of those who have engaged with me.

My legacy.

We are at a moment in our culture where modern medicine has created a space for reflective cancer survivors, a peaceful interlude for connection, intimacy, joy and gratitude.  Thanks to some amazing drugs and treatment approaches, we get to have some healthy, comfortable, cognizant time to connect intimately with our loved ones, ourselves and our mortality.   With communication technology, this has created a web heart and wisdom we can share.

My favorite shares this last month:





I really have nothing to add to what these writers have shared.  They each capture a sliver of this experience perfectly for me.  They hit a note that resonates, even generates some sort of harmonic internal peace for me.

But there’s an article I do want to talk about. 

It’s an article about a young Christian woman with Stage IV cancer, Kara Tippetts, who was documenting her end-of-life process as a spiritual Christian journey and, in parts, as a statement in opposition to the death with dignity laws supporting terminally ill people’s choices in Oregon and Washington.

Kara’s open letter to Brittany Maynard (http://www.today.com/health/brittany-maynards-husband-talks-about-letting-her-go-1D80424130 ) the very young cancer victim who moved to Oregon in order to benefit from its death with dignity laws, is the typical I’m-so-loving-and-empathic-and-understand-you-but-know-better Christian syrup that I get from “good” Christian neighbors who “love everyone, including the GLBTQ community” but state “marriage is between a man and a woman” or worse, claim to be “non-political.”  What they would probably call a practice in love is really a practice in rhetorical appeals.  It’s about appearing to connect at the heart in order to convince the reader that his or her own experience and wisdom is just not quite as elevated as the writer’s own.    At its best, it’s annoying but benign arrogance that sometimes leaves droplets of insight.  At its worst, it’s bigotry clothed in sheepskin, self-affirming tunnel vision.


But Ann Voscamp in her blog A Holy Experience writes really well about Kara’s death, vulnerability, intimacy, and connection in “How to Recover the Lost Art of Dying Well”  at http://www.aholyexperience.com/2015/03/how-to-recover-the-lost-art-of-dying-well-what-kara-tippetts-taught-us/

There are some wolves teeth in that lambskin.

There is a lot of what Ann writes that resonates with me and the reflective work I have been doing to nurture my own living relationships and prepare for my own death.   Just take out the “I know God’s will” stuff:

              She’d said it brave into the camera, the liquid  of her heart brimming like light in her eyes:


And I am not afraid of dying — I just don’t want to go.”

Her wondrous little boy, Lake, had curled into her in bed and he had looked into her eyes and whispered: “I don’t want you to go…”

Kara hadn’t wavered, she was 38 years old and the mother of 4 children, dying of cancer, and she hadn’t looked away — She nodded and stroked his cheek with the palm of her hand, like she could etch her love right into his grief.

I had choked it out last night before I turned the last light out:

“I feel like I am a kid still left at the party — and I’m at the window watching her go… watching the life of the party go.”

The strange hush about things now, in the wake of her really going, feels like a lingering holy.

Death is the mother of beauty,” Wallace Stevens wrote.

I don’t think I agree with him, but I wonder if death gives a frame to our life on this side of forever? I wonder if death is this gold frame, the gilded boundary around every life that makes it it’s own work of art. Without death, would our lives lose its very shape?

The frame around life, the death boundary around life, makes us appreciate every life as art.

We are in awe of breathing, of the gift of being, because it’s fleeting.

We love life more, the more we realize all this lovely life is transient.

Before I flew to Iraq a few weeks ago, I sat with Kara’s words, read them over and over again until I memorized them and they began to form me, words Kara told her Jason when they sat at the edge of the ocean together one last time:

I tell him it won’t be any time before we are reunited but for the mortal it feels impossible to understand the close distance of eternity.”

I tell Kara I will sit with this, fly with this.

And Kara tells me: “I will be praying for your travels — There is so much that makes us finite, but the gift of wonder we have been given over the infinite is amazing.”

Kara wrote me and told me — We must always have an imagination for the grace that will meet us.

She told me: Safe travels, friend.

Kara taught us all that: How to have an imagination for the grace that will meet us, how to unwrap the gift of wonder over the infinite, all this that has no finite end — how to travel well, right through to the end…to the end that ushers us into the beginning forever.

Kara had said that:When you come to the end of yourself, that’s when something else can begin.”

What does it matter if we know how to live well — but not know how to die well? Especially when dying is our last act of living here?

Our kids ask each other that sometimes, ask us that: “How do you want to die?

(Nobody gets to avoid that question– we are all 100% destined to die.) It’s a question we should ask from our pulpits, across our tables, on our pillows staring up in the dark, feeling the length of the night’s quiet.

One of our boys always answers the same: “I want to die quick, die painlessly, die in my sleep.” My father tells me often, he wants to die without being a burden.

It’s painfully poignant: We want to die any way that we keeps us from knowing that we’re actually dying.

None of us get out of life alive.

And in everything in life — we have to learn. People who live well, teach us the art of living well. And people who die well, teach us the art of dying well.

We needed someone to show us how and Kara taught us how to die.

Kara recovered for us the lost art of dying well.


Kara taught us that:

In our efforts to terminate suffering — too often we can be forced to terminate the sufferer — when we were meant to liberate the aloneness of the sufferer, by choosing to participate in the sufferings — choosing to stand with the suffering, stay with the suffering, let the suffering be shaped into meaning that transcends the suffering.

The staggering truth is: Suffering is never a meaningless waste of your life, but a meaningful way through your life.

Sometimes the most painful chapters of our lives —- are the most meaningful chapters of our lives.

Suffering doesn’t have to destroy our ultimate life purpose, but can ultimately achieve our purpose in life.

The word “suffer,” it comes from the Latin that literally means to ‘bear under’ — suffering is an act of surrender, to bear under that which is not under our control — but beyond our control.

That is why suffering is an affront to an autonomous society:

Suffering asks us to ultimately bear under that which is ultimately not under our control — which proves we are ultimately not the ones in control.

And for many of us, maybe that can be too much to bear? More than we can’t stand physical suffering — we can’t stand not having unequivocal control.

And that’s what suffering does:

Suffering quietly begs us to surrender — so we can win a greater wisdom, a deeper strength, a closer intimacy.

Suffering says we cannot bear under this cross alone — we can only bear it, if we can bear depending on others...

If suffering is about bearing under — suffering is a call for us all to be a community to stand together and carry the weight of bearing under — only to find that we are all being carried by a Greater Love.

I took out the text where Ann spoke for God and told the reader, basically, that God wants us to die his way and not the way allowed by medicine.    There is a core to this text that speaks deeply to me.  I have been working with my therapist on exactly these issues – staying present with those I love, accepting the beauty of what I have and will lose and grieving for that, letting go of a need to control what cannot be controlled, celebrating life and how it cycles from order to disorder, refusing to be able to believe that a spirit of love nurtured by a life well lived does not move on somehow.

There is an opportunity for connection in the extreme vulnerability that will come with my death.  And reading this article helped me think through the spaces and places I can help co-create for this process.  I design a bedroom with a couch and bathroom – a space for sharing time and company, in times of silence as well as laughter.

I have lead a reflective life.   I think have learned to live “life with dignity" in many ways.  I can share deeply and intimately with my closest.  I know how to die with grace.  (I’ve walked with at least five other graceful die-ers in the last ten years.)   We could create a really good Lifetime movie out of all of this.

What Ann’s blog post has helped me realize is that there is a danger to dying with grace.  It can get…well, churchy.  A religious performance on this edge of sincerity, heart and hunger for public approval illustrating one’s exceptional worthiness....    I can pose for the photos, post uplifting insights to my Facebook account and my blog. 

Ann writes that people, not medicine, is what makes this “dying with grace” possible.    She’s talking about living with God’s choice about our death versus our Oregon and Washington access to our own, medically facilitated choice. 

But here’s the thing.    All of these people I’ve linked to who have posted about their growth and insight in these journey’s towards death are only able to do this work of writing and sharing because of MEDICINE.    

Especially in well researched fields like many cancers (including breast cancer), we survivors now have a diagnosis of death – and at the same time, this incredible gift of life.  We swim, we run, we play with our children, we vacation.  We reflect, we connect, we grow…because we are given by science this space of health and wellbeing in our sickness. 

These people’s insight I link to above wouldn’t be sharing books and websites and blogs were it not for medicine.

It’s not only science that contributes.  All of the academic fields of inquiry add to the insight we bring to creating this path of grace towards death.  Humanities (including religion), Social Science and Science all lead us to insights and practices that support a patient’s mental, emotional, spiritual and physical journey.  We have experts in care for the entire person – and more and more so, the entire network of support that person brings with them.

At the Swedish Cancer Institute, I watch each nurse come out to greet his or her patient in the waiting room as if that person were the only person that nurse treats or thinks about.  I am followed out the waiting room by a social worker who remembers my children and asks how they are doing with my new bald head.  I have a family there of caregivers, who show excitement at seeing me and hearing about my life – and graciously share the joy they are taking in their own lives.

This is not random.  It’s intentional, reasoned practice based on research and reflection at the individual, institutional and academic levels. 

Ann is right.  It’s about a call to community and a standing together.  But for me this is also about gratitude for the work others have put into creating this space of peace and this option for connection and reflection.  It’s about the medical practitioners.  The drug researchers.  The therapists.  The social workers.  The bloggers and book writers.  The politicians and healthcare reformers. 

I’m not saying there is no God or that God is not present in all of this.  I am saying simply that the wolf in the sheepskin here is the assumption that an individual can die well…that life with dignity is what makes death with dignity possible.  This smacks of the puritanical assumption that is carried along by people who claim they are “blessed” with a good life -- chosen by God…As if there are those who are not blessed, not chosen by God.     If you don’t die “with dignity”…was it because you were not dignified in life?   Like we all need another thing to fail at!?  Now we can fail at death? 

It’s problematic for me.  I have this opportunity for a good death.  Kara Tippets and all of the other writers I’ve linked to in this post seem to be walking a good death, sharing a loving insight to the beauty allowed to us in this walk.   I’m not going to deny it.   And my White Western Lutheran cultural upbringing really loves to believe that my walk of death is something special, created by me and my choices and my work at self-actualization…just as Ann and Kara would credit their growth in God as a personal achievement.

These stories shared here are not the whole picture.  My story here is not yet the whole picture.  Death is traumatic and dirty and tiring and painful.  It’s my father in 2009, joints frozen solid, with bed sores seeping down towards his bones, gasping for breath for weeks and weeks as my mother cares for him.  That intimacy and connection provided by death is also the burden of deciding, minute by minute, whether cajoling another sip of water out of him extends his life or his suffering, whether a bit more morphine is killing him or supporting him – and whether we are doing so out of compassion or selfishness.    It’s sitting on his bed, next to his dying body, in companionship and love for hours at a time … then sipping so much cheap red wine that I vomit all over the sheets and have to move him, putting him in horrible pain, in order to change them.   My mother’s body, in the meantime, wracked with the stress of his care for two years now, has succumbed to a life-threatening throat infection that landed her in the ICU.

It’s hot and tortured.  It’s my mother in 2014 gasping for oxygen, clawing at her own skin, refusing food and drink, but sipping eagerly at the morphine.  It’s her mouth opening and closing, struggling to draw in air for a breath?  A word?  A sigh?  But ending with pursed lips and a look of frustrated consternation.  

Both of my parents died with grace – in particularly my mother.  They used the knowledge of their own terminal illness to makes spaces and places for connection and gratitude.  They lived mindfully and intentionally in what wellness they could find and nurtured the presence and connection they could cultivate.  They were able to do this because of science and medicine.  It allowed them the space and time for sharing spirit and heart…for growing.

But the final process of death itself is generally not graceful.  It’s full of vomit, blood, fever, oxygen deprivation, diarrhea, and pain.  It’s a water torturous process of life-and-death micro-decisions, an unending emotional exhaustion for caregivers. 

Grace is not about God’s choice of when to take you.  It’s about science provided options for how to keep you and your caregivers as present and comfortable as possible.

I have been reflecting and working mindfully towards a loving life for decades.  And I've had the privilege of access to incredible networks and communities to do so.   But dying gives me this platform and an audience...  an honorary degree in wisdom attracting well-wishers and patient readers.  But dying, after all, is easy.  Letting go and “finding grace” when there is no other choice left but to do so is  not really such an astounding achievement.

Living with someone you love at this sometimes torturously long death point…and knowing that you must live on, you must find a new normal, a new future, even as everything breaks around you, this is the real challenge.  Pretending it is graceful is a dangerous and damaging lie.

Take inspiration from all of these stories of terminally ill people finding growth and light and connection in their walk towards death.    But remember that it’s easier for we-who-know-we-soon-die to let go and be present because we have no responsibility to the future.   

Don’t pretend any of us can teach anything about dying with grace.  We can only teach each other how to live.

And I, for one, am  grateful to be in a state with incredibly advanced healthcare, including death with dignity laws…so that I can live as well as possible with my community for as long as possible.