Wednesday, March 22, 2017

What Matters (when you can't take care of you)


Some of us will make it within spitting distance of 100. Most of us will some day depend on other bodies to care for our body. I have the privilege of providing that care right now, and observing what matters in these years. For instance: 

You taught your children self-sufficiency. You gave them full awareness of their own personhood. When it is time for someone to represent the voice you no longer have, they aren’t still striving to maintain a falsehood of needing you with them. With great loss, and tremendous courage, they advocate on behalf of your body and soul.

You built love with a partner based in truth, compassion, and passion. It helps if you laughed a lot, because when this partner has to face tending to your most undignified needs, you’ll want them to get you so tickled you toot in the bathtub. And, this partner knows you too well to cling to a shell of you.

You opened borders and created community. A walled off life is a secluded one, in health and sickness. The crowd at your bedside get smaller as the years go by, unless you created a legacy that parents shared with their children, and that got soaked up by grands and great grands of the genetic, adopted or spiritual varieties. A little diversity here is extra special.

You let others sit with you in your suffering. You let them see a few warts. They grew to admire your courage and generosity all the more because of them, and won’t be afraid to face the diminished you.

You took terrifying leaps of fun and adventure. You drift away from full physical strength, and toward death with a heap of memories; and no regrets about forgetting to stray from the American dream, and the Protestant work ethic in favor of a day at the park, or a journey abroad, or deeps acts of charity.

You tended to your body. At this point, how little or much your thighs jiggled in youth won't matter. This isn’t about bringing sexy back. Rather, about priming your body for the years when other bodies bear the burden of moving you, and supporting you. You’ll live longer, and enjoy the waning years more with moderate attention to tune ups.

Modern medicine gives us so many extra years, but we forgot to prepare along the way for what comes at the end. The grace, courage, and love you infuse into your world now, will follow you all the days of your life.

Sunday, March 19, 2017

"I want to go home. It's so very cold here."

Yesterday, a patient, shaking, naked, and bereft of the control over his body that he's had since toddler years told me, "I want to be normal. I want to be me again. I want to go home. It's so very cold here." The extent of conversation he'd had to that point was caregivers instructing him to get back in his bed, because he's too weak to be up. We are right.

And wrong.

Right to recognize the limitation of his body, when his mind can't. Wrong to not explore the capacity of his mind and body. Wrong to not fight for a more humane approach to his health, lack of health, and inevitable death.

Last week, in a similar situation, I asked an oncologist why we weren't having a conversation with the family about hospice. He replied, "I'm not ready to write him off yet." In fairness, this is a very compassionate doctor. I looked him in the eye and said, "I'm not writing him off either. I'm facing all the potential directions his illness can go, and wanting to keep an open mind to all the possibilities for how we treat him. He will die. How will we treat him until he does?" An hour later, the family came to me in tears - adjusting to the conversation the physician decided to have with them, and determined to bring meaning and comfort to whatever days they had with their dear one.

We stand over our patients, literally and figuratively. We address them with the same tone we do our children. Dismissive. Concerned. Coaxing them back into clothes, into bed, into the masks and tubes and lines they "need" to maintain the numbers we want to see from them. We neglect to find the strength in their weaknesses.

I crouched below this fellow human, and told him, "you're so very sick. And, you're in the hospital. Please tell me what you want." He looked into my eyes, and expressed the thoughts above. He talked to me of his "most wonderful wife."
When I swung into his room, just ten minutes before, trying to catch him from falling, and simultaneously direct his body back into the bed, he struck out with his hands and arms. Disoriented. Disrupted.

There's something here, on a grand scale about how we treat all humans. How we let every person maximize what they have. How we sit in silence, waiting for someone to reveal their pain, their wants, their needs.

There's also something very direct here. Talk to your loves. Learn what they want in the waning years. Tell them what makes life so livable and meaningful for you.

As for me: don't chase the numbers. Keep me close to the lives that bring me purpose and joy. Love me with presence, not interventions. And, listen to me. Ask me questions, and wait long enough for a disorganized mind to gather a response. That's living, now, and always, for me.

Sunday, January 1, 2017

moving forward

This dreadful year. We chose power over peace. Rhetoric over dialogue. Boundaries over generosity. Strength over vulnerability. The present over the future. Anger over mercy. Retribution over justice. Self preservation over humbleness. Our full tummies over the hunger of the poor. Our housing market over the homelessness of millions of displaced persons. Shouting over learning. Judgment over radical acceptance. Comfort over comforting. We gathered our power and hoarded it and shored it up. We invested in the myth of our superiority, to avoid the gritty reality of our fallibility, and the suffering of our fellow humans.

We could make the argument that it's human, or natural. But, one human lived the most human life ever and chose humility, generosity, conversation, mercy, empathy, and ultimately, death over all things self-preserving.

In 2017, I want more of my life to reflect the thoroughly human life of Jesus. I hope to Us folks will gather together in pursuit of this unconventional, subversive, wildly loving way of living.

Also, I'd like my kid to be healthy.

Tuesday, December 13, 2016

tubie* god

A thin cord snakes down the length of a pole and into the belly of the baby sleeping in the manger – feeding her. Today, god is a tubie*. Pierced and disrupted, already. And what do you let that do to you? 

Does it disorganize you to consider a god who willingly chose a form so disruptable and piercable? Do you cling to a Greek god inspired Jesus - all muscles and masculinity and stoically abstaining virility? To a god of all-knowing, all-presence, and stoically abstaining potency? 

… 

It softens me. My baby is a tubie. Disrupted. Pierced. Fragile. 

Strangely, a god unable to partake in the same sufferings – incapable of the same design errors – makes me angry, rather than secure. 

This is about more than ability inclusion in modern day nativities. It’s a homing to a being participating in the same world and rules I live in. A god who doesn't stand in observation of our travail and nativity, smirking in knowledge and sympathy, open-handed and willingly ineffective. Rather, a god who is his own cycle of lament, and advent, and Christmas. Just like my baby.

*a "tubie" is a baby dependent on a feeding tube to meet their nutritional needs. My daughter has a special, implanted tube that allows us to put liquid formula directly into her small intestine - although other babies may receive food into their stomachs.

Thursday, September 29, 2016

Detritus














I have your sunglasses
I have your heartache
You have my daughter's tiny black slipper
Its partner graces my living room floor

Lives split by location
and shared by forgetfulness
Debris scattered
in heart and home

I gave you lip
You gave me instruction
Or, I gave you a hand
You gave me distraction

Intertwining
Unwinding
Weaving
Knotting

I have your heartache
Like those little shoes
Lives walk into one another
And forget to walk back out

Tuesday, June 14, 2016

Remembering Orlando

A speech in memory of the victims of Orlando, compiled from this moment, and too many other reactions to other moments of violence.

the memorial I designed: meant to move, and to move us
each name of the known lost victims
To My LGBTQ Family:
This memorial isn’t honest without acknowledging our LGBTQ family. Humans died. We’re all human. We all mourn. But our brothers and sisters here were targeted. In their safe space. Because of who they are. They live with the same grief I have, but complicated by fear, and a burden to continue living against the grain of long held biases, myths, lies, judgments and institutionalized languages and structures of exclusion.

To you, my family: You’re tired. I know it. I felt the wind go out of the earth when you sighed, and many of you mourned from the safety of your beds. You’re overstretched. You’re suffering. You’re trying to live your life, but also having to fight to do so. Taking the time to confront your reactions - to lean into your mourning - with the added burden of doing it publicly and representatively adds an exhausting layer of complexity to your grief.

Let me carry this burden with you. Teach me how to pick up the hammer that dismantles the words and institutions putting you outside the family and leaving you vulnerable. Forgive me for perpetuating brokenness, for cowardice in your cause, for not asking you sooner for this education.

To all of us – I have a reminder in the weakness of grief and pain:

Our society doesn't prepare us to live in the weakness of the time for mourning. We act. We opine. We argue... We escape. We make decisions without the wisdom of deep experience. We deny our suffering, bending our impaired hearts and minds toward superficial interpretations. Rhetoric and arguments lend us a false sense of control and power in the relative helplessness of suffering.

But, by refusing the journey of grief, we stave off healing.

Our task for this time is to mourn. To weep. To grieve. To be present to our suffering. To select symbols that remind us why our hearts
feel burdened even in times of levity. To connect. To validate the weeping and grieving of our neighbors.

We mine the depth of our brokenness over the loss of these people. 

We reject the tendency to let fear drive us to positions of power, anger, violence, judgment, and war.

Instead, we choose presence. It takes courage to face the darkness of these nights and acts. It takes community and intimacy and love to overpower them. 

Reach out. Bring in. Blend. Open.

Take comfort in knowing this time belongs to itself. The time of laughter will follow. That time is not our concern. Live this moment, now. It enriches and informs the time to come. 

May we aspire to a love that sows words and behaviors of peace and connectedness – a love of self-giving and self-sacrifice. May we love lavishly, and be willing to share our power with those more in need. May honesty in failing and suffering and loving and living knit our world more closely together, and create a safer space for us all.

Friday, December 18, 2015

2015, or, Why I Went Missing




Facebook offered me my 2015 year in review. I immediately felt nervous.

2015 has been the hardest year of our lives (Jason and I reached a consensus on that). It brought me beautiful things: my Lulu, and my incredible coworkers. Also, Jason lost his job. We lost all our savings. My pre-natal and post-natal depression came back with a vengeance. We sold my stupid, beloved Mini. Our teeny baby was so sick. At 8 months she still wears 0-3 month clothes, and doesn't sleep the night through (or even 4 hours at a time). We haven't slept in 8 months. We feel thin.

I don't know why I'm posting these harsh realities. Except, maybe someone else needs to know they aren't alone in hardship. In this post called the Brutally Honest Christmas Card, written from a place of "radical vulnerability," DL Mayfield writes this about her even awfuller year than ours:

" But perhaps the most significant thing is that Jesus is no longer an abstract person, a walking theology, a list of do's and don'ts to me. This is the year I recognized him as my battered, bruised brother, and I see how he never once left my side."

When she has the courage to say, "We don't have the energy to pretend we're ok, because we aren't really," I feel like she's telling my truth.



We can say Luisa Jane has a beautiful, freely given smile. We can say Valentine loves big, and thinks big, and plays big. We can say Alphie faithfully nuzzles mama's hand every time I cry. We can say our house is warm -- still missing the kitchen cabinet doors -- but cozy. I can say the work I'm doing is the most meaningful of my life. I can say that all the suffering has made me think, love, and believe in new ways. I can say that every once in a while, through the fog of stress and sleeplessness, I look over and see my Jason in all the beauty that is him, clearly, dearly, lovingly, and I know my partner in this life is the best. 

Even if I can't say I'm ok, these are good things to hold onto.

I wish you a connected new year - one in which you know who you belong to, and you feel the people who belong to you weeping when you weep, and rejoicing when you rejoice.