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.
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…”
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 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.
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.
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