My son explains weed to me

Weed creates a shield
Like glass between himself and everything else.
He motions over his eyes till his lids droop closed.

Like, you know, to daydream.
Because he stopped dreaming.
Because of what? I wonder about all
The bombardments on his young brain,
the screens that invade the space between

silence, himself, and imagining?
Is this why?
He “needs” weed, like, you know?
I want him to gift him another kind of shield between
what dive bombs him and peace.
Like I know what that is, other than what I had,
creeks and rivers, paper and nature,
a head full of literature, a cassette player,
permission to talk to myself and God.
God knows, what assaulted my mind in those years.
Shit, kid. You need trees, not weed. Dirt, not screens.

A mother and her son, mediated love.
We have the chats and spats and texts and videos.
He sneaks. I peak. For when he says,
“I just need the fucking space to dream.”

I see a prophecy in his word, truth spoken to all of us.

Cancer Lamentation

1 Save me, O God,
for the waters have come up to my neck.
2 I sink in deep mire,
where there is no foothold;
I have come into deep waters,
and the flood sweeps over me.
3 I am weary with my crying;
my throat is parched.
My eyes grow dim
with waiting for my God.
4 More in number than the hairs of my head
are those cancer cells who devour me without cause;
many are the complications who would destroy me,
inner voices accuse me falsely.
What I did not cause
must I now worry about?
5 O God, you know my folly;
the wrongs I have done are not hidden from you.
6 Do not let those who hope in you be put to shame because of infirmity,
O Lord God of hosts;
do not let those who seek you be dishonored because of cancer,
O God of Israel.
7 It is for your sake that I have borne what you have given me,
that pain has covered my face.
8 My body become a stranger to me and my kindred,
I feel like an alien in this state.
9 Yet I cling to my zeal for you, love of your house has consumed me;
the insults of those who insult you have fallen on me.
10 When I humbled my soul with sickness and fasting,[a]
they insulted me for having faith.
11 When sickness rendered my skin like sackcloth,
I became a byword to them.
12 I am the subject of gossip for those who sit in the gate,
and the drunkards make songs saying “give up your hope.”
13 But as for me, my prayer is to you, O Lord.
At an acceptable time, O God,
in the abundance of your steadfast love, answer me.
With your faithful help 14 rescue me
from sinking in the mire;
let me be delivered from all these afflictions
and from the deep waters.
15 Do not let the flood sweep over me,
or the deep swallow me up,
or the Pit close its mouth over me.
16 Answer me, O Lord, for your steadfast love is good;
according to your abundant mercy, turn to me.
17 Do not hide your face from your servant,
for I am in distress—make haste to answer me.
18 Draw near to me, redeem me,
set me free because of your enemies.
19 You know the insults heaped upon those who hope in You,
Do not let this be shame and dishonor;
my foes are all known to you.
20 Insults have broken my heart,
so that I am in despair.
I looked for pity, but there was none;
and for comforters, but I found none.
21 My body takes food as poison, Nothing quenches,

for in my thirst they gave me vinegar to drink.
22 Let their pride be a trap for them,
a snare for their allies.
23 Let their eyes be darkened so that they cannot see,
and make their loins tremble continually.
24 Let them know this pain so they may find kindness,
and let them encounter their own fragility.
25 May their faithless be a desolation;
let no one trust in their things.
26 That they may not persecute those struck sick,
and those whom cancer has wounded, they not attack still more.
27 Add shame to their conscience;
may they have no acquittal until they see God.
28 Let them know the fear of death and oblivion;
let them not mock the righteous.
29 I am lowly and in pain;
let your salvation, O God, protect me.
30 I will praise the name of God with a song;
I will magnify him with thanksgiving.
31 This will please the Lord more than money
or fine things.
32 Let the poor and mournful see it and be glad;
you who seek God, let your hearts revive.
33 For the Lord hears the needy,
and does not despise his own that are in bonds.
34 Let heaven and earth praise him,
the seas and everything that moves in them.
35 For God will save Zion
and rebuild the cities of Judah;
and his servants shall live[c] there and possess it;
36 the children of his servants shall inherit it,
and those who love his name shall live in it.

 

Where There Are Beautiful Silences

It’s been a while. Sorry. 
Several people I know are in danger of losing their lives. At least two seem to be ever there, a few more so close it’s like ice on my bones and others have diagnoses that give them far too little time. I’m thinking of the silences surrounding them versus the beautiful silences I’ve come to love. Here’s a first draft of a poem I’m working on.
Where there are beautiful silences

Standing against the wind on the precipice of the Pacific
not at a hospital bed or sitting in a clinic;

When the sound closes out as the head crowns or slips
before gasping leads to bawling;
not timing the seconds knowing the next inhalation
is the one that fails to come
as a rattle, a wheeze, a sigh, and living begin keening;

In the rain, on a run, the beautiful silence
weeping is not the ugly staring at broken earth
just before dropping in a mother;

Seconds after musicians hit the position but before the chord
splits into ecstasy, in the chord when all else drops out
beautiful silence that is not silence but is
anything but the self-soothing of hymns, chants, melodies
to endure the torment.

Notes from a Funeral

This blog has become a lot about the face of grief. #sorrynotsorry

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From the first memorial for Naomi on Nov. 7, 2017

Also, #sadbastard.

I want to be funny. I swear it. I can’t right now. I mean I can crack puns in safe spaces with people who will tolerate me. I can get edge here and there. But many days, it’s still hard to pull the covers off my face and feel cold nip my nose and let it steal the dreams that helped me stay asleep last night. I like my dream state right now. It’s my drug. I haven’t gone for a pre-dawn run in months. Partially this cold winter has stolen my chances and partially I don’t want to stop sleeping.

Tonight, instead of continuing with the nonfiction novella I’m writing Eddie and Julia, I’m transcribing notes from Andy about his love story, which he told on November 7, 2017 with all the humor and timing that characterizes him and the best of those two as a partnership.

This is for him, for Eddie, for Julia. The rest of us are just smiling from the cheap seats.

I want to start as Vonnegut said writers should- close to the end.

______

She felt the ring box.

“Hold that thought,”  he said.

Yes, I’d better, he thought.

Instead of the cemetery, he knelt in a college parking lot and told her he wanted to know himself through her.

If you asked Naomi the story of the first meeting she would say she met him in college. He’d say he met her during her high school years when she was a Bible quizzer.

He remembers the first year at Olivet, when he threw himself into the college life. Andy lives with gusto, which is why my sister fell for him. She lacked patience with anyone who wanted to be popular or cool, but gusto attracted her. Andy threw himself a pizza party in the freshman girl’s dorm commons. Naomi was hanging out with friends. He asked her if she’d hang out. She said yes. (A fresh boldness always snagged her. She wasn’t one careless risk but one for people and adventures they led her on.)

She made him feel enough at ease that he asked if she’d be his friend. Yes, she told him. (I’ll write up notes of her version of this story next.)

He recalls that they soon piled into someone’s car for some concert a bit north in Chicago proper- Olivet is an hour shy of Chi-town– and that was his moment. In the classic move, he stretched his arm out around her shoulder. And, gawd, when he told this story I made googly eyes at my husby because they romanced in the Christian college cuteness that still gives me fuzzies when I think of how my husband romanced me. A week later they decided they could be BF and GF (boyfriend and girlfriend for the old fogies). Outside a dorm a week later, he told he loved her. Now, you should know, his term started in late August. His birthday is in September. Things moved swiftly.  For him. She said, “Thank you.”

Months later he wanted to propose but he was a poor college boy. No, really. Have you had loans from a private school?

Explode the moments. His mom bequeathed him a ring, his birthstone in it. He put the ring in the left pocket of his coat because when he and Naomi took walks, she’d put her hand in his right pocket to keep it warm.

On the night in question, he planned to walk her to the cemetery just beyond Olivet’s borders– I can’t help but think Naomi understood how this was a throwback to the Poe days of Romanticism, when one wooed the girl with a picnic in cemetery as a morose reminder of mortality.  On their walks she often put her hand in his and they’d tuck these in his right pocket, so he hid the ring in his left pocket. They’d walk and debate some topic, theology, politics, or social problems. That night, she walked on the other side of him and before they reached his planned destination, she put her hand in his left pocket.

Oh. hey.

“Hold that thought.”

Yes, I’d better.

So he dropped to one knee and told her he wanted to know himself through her.

______

On the day they pledged to have and hold until death parted them, they meant for decades. Not eleven years.

I left the church an hour before the pictures to run to the mall and buy a dress because:

  1. Naomi said we could wear any formal dress in one of a few colors.
  2. I was pretty broke and the dress another sister loaned me didn’t fit quite right– I was never as well endowed as her.
  3. I hate weddings where everything is supposed to be perfect and magical.
  4. Naomi would understand as long as I came back in time and had a dress, which I did. I found one for ten bucks on clearance at the mall and it flattered me.
  5. This is why the pictures before the ceremony have me in one style of chocolate brown satin and after the ceremony, I’m in a cocoa-colored sexy prom dress.

On that day, I had brought dozens of chocolate covered goodies of all types for the dessert board.

On that day, my brother sneaked up behind my mother and lifted her up on his shoulders and accidentally dropped her. But it’s okay because she wasn’t hurt.

About eight days after she died, we said our final memorial goodbyes to her in that church.

 

The Best Thing That Ever Happened to Me

is  not cancer.

Google that phrase.

That’s what the guest preacher said he did just before he preached the morning after my sister died of not one but two kinds of cancer.

“Do you know what the number one result is?” asked the guest preacher, a young, successful chiropractor.

Based on his answer that day,  November 5th, — Remember, remember the Fifth of November– I haven’t had the courage until today. Today I have a little liquid, Irish courage in my blood, so I googled it.

The answer was NOT cancer. It was Gladys Knight lyrics. Probably I got lyrics because

A. I am married to a musician and music is big in our house.

B. Google searches are not objective, uniform and universal. They are unique to your search history and algorithms. Maybe I should google incognito? Nope. Still music lyrics. Still not cancer.

C. the preacher was actually a chiropractor. He was not a trained theologian. Maybe his search returned medical responses because of HIS search history.

D. the “preacher” was an endearing speaker who was obviously obtuse about the diversity of the two hundred plus audience in front of him.

This latter situation was not entirely his fault. It only highlighted his lack of audience diversity and awareness. The responsibility spread out over several people.

Case in point: My parents and a sibling, members who have attended the church for a while, had called the head pastor to the house (situated directly across the street from this church) shortly after my sister died. He sat in the living room with them less than 24-hours before that sermon because cancer had just killed the second to youngest of seven adult children. Apparently, the head pastor forgot to text his guest preacher that several members of the church just lost a daughter-sister-mother who was just shy of her 33rd birthday when she died. He’d agreed to let her be memorialized in the small chapel on the church campus in a couple of days. He’d agreed to let another pastor take the lead and he would say a prayer or whatnot. He’d be sensitive because her four-year bout with two kinds of cancer (some people just win the cancer lottery a couple of times) had eaten her faith like the cancer ate her body. It also satellited out to those around her, a blight that added to the crisis of faith in her husband and some siblings.

Cancer was not the best thing that happened to her. Or to her husband. Or to her two kids. Or to her two parents. Or her six siblings. Or their partners and children. Or to her mother-in-law, siblings-in-law, her best friends.

When I read blogs and articles titled “What Not To Say to People With Cancer” or “Memes That Only People with (insert cancer or mental illness of your variety or children with special needs of your variety) I keep thinking these have to be written for folks with a chirpy “religiosity” or “faith” or “spirituality” or any kind of positivism.

If there is one piece of advice– and I do hate being prescriptive here– but advice here might be useful, I would ask people who feel there is hope in the darkness not to try to spread it like butter on burnt toast. Don’t offer up religious or positive cliches like delicious jam. It won’t cover up the burned flavor. It ruins whatever tasty, beautiful, sweet thing you think you are giving.

The best thing you can say to a person with cancer, or chronic disease, or debilitating disease, or a person in mourning, which includes the sick, the parent adjusting (daily and constantly) to the needs of their child, or the friends and family who just lost someone is this

…. (silence).

Just sit there. If they seem okay with a hug, go for a side-arm one first. If they want a bear hug, they use the other arm.

Don’t say sorry. Sorry doesn’t cut it.

Eff Cancer is flat.out.

Ask them how bad it hurts. Be prepared for a blast of emotion you don’t think you can handle. You have the strength to listen. You can handle that. Ask questions if you feel stuck. Open ended, non–prescriptive questions, like “Tell me more… ” or “And after that?” What else?”

It’s best not to say too much. You’ll screw up. Don’t compare it to the time your pet or your uncle or that kid in high school died. This is going to be hard, but what you bring is your physical self and time. Ears help.

If you must, test a few delicate questions. I’m testing a new question right now. “Tell me your (favorite) memories.” WARNING: Don’t ask that unless the speaker had a good relationship with the deceased or sick one.

Or, “What/how are you feeling?”– Ask that in private spaces only.

Tread carefully on questions about the future. Do not talk to widow(er)s about remarriage. Do not talk about causation and the sick/deceased person’s choices.

After a fifty-one year old father died in our community last year, a well-meaning woman told the widow she should get remarried. Then she made comments about the decedent’s weight and health and told the fatherless kids to prepare for the day when their mother found another husband.

I recall that family members cajoled my grandmother about remarriage for years after my grandfather died. She would hear none of that nonsense. She was still married. Beware of anything prescriptive. Some people won’t stay single in perpetuity. Some people will. Stay keen and caring towards your audience.

Cancer was not the answer when googling and using the predictive prompt “the best thing that ever happened to me.” Which is why my brother-in-law, who came to the service that morning just to hear his son sing in the children’s choir, slammed out of the building, breaking the door as he went. It’s why half the women in the family chased after him in their own angry stupor. It’s why the men in my family broke, some into groups to talk to the head pastor, some to follow my brother-in-law and make sure he knew all believers weren’t obtuse ********** who made careless statements for rhetorical purposes, and some stayed with the kids in their seats and wept, as real men do.

Too bad too. The next day, the head pastor insisted on giving comments at the memorial. Nevermind he didn’t know the deceased well. Nevermind that a capable pastor who knew her well enough had the matter in hand. Nevermind that he didn’t speak the widower at the memorial or to apologize. Nevermind that grief is the great tool of pain and pain solidifies memories into states of emotion into states of being that can last an eternity.

The best thing that ever happened to me was my faith in God. But that’s not true for all people. It can’t be if the faithful try to hard to be anything but penitent, humble and authentic. Death is real. Pain is real.

 

Tattoo Me on You

“She had appeared to violate the rule. She was warned. She was given an explanation. Nevertheless, she persisted.” – Senator Mitch McConnell regarding Senator Elizabeth Warren

“Say I’m written on your soul, then write me on your skin.”- The 77’s

“Let’s get our first tattoos when you make it to five year survival date,” I said to
For you

Naomi on one of our 2016 calls when she’d almost survived three years. She’s survived through a plan for assisted suicide (can one have assisted suicidal tendencies?) and she’d had two NED (no evidence of disease) scans, still she wasn’t sure she’d make it to five years. I was optimistic.

Nevertheless I had the tattoo itch, so I proceeded on my 40th birthday to have a pilgrim tattoo (of a sorts) inked on my left wrist, a sizable Jerusalem cross. On Thanksgiving a few weeks later, she showed me her three-year tat. A black bird, not a crow but a sparrow, for her Julia Sparrow and a light bulb for her Edison with a banner beneath.

For you.

“We can still get five year tats,” I said. Sure, she replied. But she still didn’t think she’d make it.

What we talked about that year was health. I’d experienced months of oppressive doom that culminated with a feeling that I was about to die. I’d poop out at mile eight, then six, then four, then two on my daily dozen mile runs. I’d walk a mile, run a half, walk a mile, run a half, until at last I just walked out most miles. My heart felt strong, thudding loudly, but my legs would shake. I felt weak. I was sure I was drinking too much or that I wasn’t taking in enough protein. I should disclose that I’ve had an undetermined autoimmune disorder for over fifteen years. I can’t eat gluten, beans, meat, dairy, nuts, corn, soy or many fruits. You know, veggies mostly, and some egg whites or nutritional yeast. But this was a new, a certainty of death loomed. While attempting to exercise on a stationary bike, my OB-GYN called to say that a recent blood test indicated my hemoglobin was at 7.7 and he was prescribing iron pills. I knew this was bad because when Naomi was diagnosed, the alarm bell was a hemoglobin count at 7.0. Crying, I called Naomi. She was 28, living in Jackson, Michigan, it was 2013, and the economy, like her health, was still a hot mess when that happened.

“Get the best specialist you can get,” Naomi said.

Naomi, who had avoided doctors (no money, no insurance, the kind of upbringing that said if you can still move, you are fine without meds), told me to get the special specialist, the expert to the experts. By 2016 she lived near Johns Hopkins. By then, she visited the ER weekly for a saline drip to rehydrate what her (failed) reconstructed rectum leaked in fluids. By then, she’d begged for a (second) permanent ostomy and had spent too much time on the phone, pleading for the chemo regime that would allow her to stay awake and energetic enough to be a mom for her two kids. By then, she knew she had to fight for more than than some doctors knew was available. By then, she knew that doctors were all doing their best but the ones who worked all the time in one specialty knew the most.

By November 4th 2017, Naomi’s life ended on a date a few months shy of a four year survival period, even with Johns Hopkins-top-o-their-field specialists. She tried all the innovative chemo options suitable for her. For a long nine months, they seemed to work. Until she got a secondary, soft-tissue cancer on her tongue, in her throat and in her lymph nodes. It grew fast on her. It hung jewels on her neck. It was a fat lady who took her ability to sing and owned the last note.

She died in her own home. She breathed her last with almost all her closest kin in the room. We stayed with her constantly. She stayed with us in the living room, sleeping on and off through most of the second season of Stranger Things. She slept while we reviewed all the pictures on her phone. We sang all her favorite songs to her. We laughed, prayed, shared memories, and cried a lot. It felt like “the best kind of death.” But when a mother is shy of her 33rd birthday, with a widow and two small children, and a huge set of parents, siblings, in-laws, nieces and nephews, surviving grandparents and close friends, there is no “best kind of death.” There is trauma.

There is anxiety, haunt, hurt, confusion, anger, void, blankness.

There was a home burial. There was silence. There was her beautiful face, her funny socks, her favorite clothes. Her children pounding in the nails on her wooden coffin. Flowers gathered. Flowers laid.

The days after her death before her burial, five of the siblings, myself included, decided to tattoo her on us.

Nevertheless.

Everyone of us knew she wanted a few things in this order:

  • A longer life to raise her kids and love her husband.
  • Less pain.
  • More family and friends.
  • More time.
  • To outlive the current president.
  • Fairness, justice, equity for all.
  • Medicare for all. Homes for lonely teenagers.
  • To make a difference.
  • Laughter.
  • Less pain.

Sometimes the pain almost destroyed her. Nevertheless, she persisted. Two years earlier, when Brittany Maynard ended her life early, Naomi flirted with what dignity in death looked like. Her daughter, then in kindergarten taught her a lesson none of us could have, so nevertheless she persisted. She took more pain meds and sought all the experts and when the time came that they could do nothing more, she rested. She put rice bags around her tumor-laden neck. She shuffled between rooms main room and listened to us prattle though the light and sound hurt. Nevertheless she persisted. She’d seen this kind of death and had decided that she would persist.

Having been warned, she persisted. She insisted six days before she died, on going to our sister’s condo. The whole family came as an entourage. It rained. It took forty-five minutes to get her into the living room. She sat with us for a couple of hours. It took forever to get her back. It kept raining. Nevertheless.

She laid on the couch so she could watch TV with us and hear us chat. She insisted on upstairs, downstairs, until she couldn’t walk from dehydration and malnutrition. Nevertheless, she lifted her eyelids as we talked to her. All the way to the last six or seven hours, she willed some consciousness.

So when we entered the tattoo parlor, all of us ended with some version of her persisting. Nevertheless. Sparrows in flight. Storied family teacups. (See poem here) Emblems of what she left to assuage our anxiety and void.

Her death and burial have left me chronically anxious, measuring every word and move and motive I made. I went to the therapist to see what she could tell me. She said, get meds. I said, “Naomi told me to get the expert.” Who is that? She couldn’t say. She said my GP or my GYN, not experts in anxiety or depression by any measure. Therefore I haven’t gone for meds. I’ve had too many times when I needed a specialist. Before I put scripts into my auto-immune endangered body, into my anxious soul, I need an expert.

What do we do when have the medical advice we need and not the referral or insurance to handle it? By the way, my CIGNA refused coverage for my therapy this week.

But I’ll keep seeing my therapist. I’ll keep up my runs and healthy diet and trying not to drink too much, to avoid sugar, to use the sacraments of confession and the Eucharist and to be a good mom, a good wife. I’ll seek experts. I’ll persist, nevertheless. Grief will change you, I’ve been warned. So make good spiritual, physical and emotional habits while you can. Your time may not have come, but it will. And if you want to keep life threatening despair “unavailable,” do all you can to immunize yourself early.

 

 

 

God Sends Quails

Do you remember the Ray Bradbury story “The Self-Improvement of Salvadore Ross” where a man has the extraordinary power to trade a year of his life for material things?

When my sister was diagnosed with cancer in 2013, I tried to bargain years of my life for her health. Not self-improvement but a mystical, impossible bargain nonetheless. Faustian? Maybe. Prideful? Perhaps. Selfish. Certainly.

My sister hadn’t been married ten years yet. Six months earlier, we’d been walking through the raspberry thickets, collecting mosquito bites and annoyed countenances at the humming in our ears, slapping our skin and snagging our bodies on thorns, collecting scratches and over-ripe undersized wine-tasting raspberries. Just me and my twenty-eight year old sister and  her little one in the umbrella stroller. Just six months before.

We’d been out there for thirty minutes, a five minute stroll from the lake house, when she blessedly said, “I’m pooped. Let’s go back.” I didn’t recognize the portent of her premature exhaustion.

In January, when I was popping eight, ten, twelve ibuprofen a day, complaining to my GP that I had a nagging strain in my pelvis– I didn’t know I had a stress fracture and he was dismissing my pain– when my father called to tell me the news, I had walked at an excruciatingly slow six or seven miles at 1.5 MPH at my treadmill desk, determined to complete my daily excessive mileage in spite of the pain. When my dad said, Bad News. Naomi. Cancer, I felt no pain of my own any longer. It was is if I had swilled a bottle of vodka and four naproxen. The new pain set in, an existential, soul pain. A twisting knot like none of the pain I’d felt before.

And I know pain. Pain woman has whispered her incantations in my ears in the dark. I have wrestled with the angel of the Lord and he touched my hip. He has broken both sides of my pelvis. But this twist of cancer in my sister was and is larger. It expands the universe. This pain exploded then. Like the big bang, it burst into an evolution that took only four years to build its own universe. Then implode. It is now a black hole, sucking in all who loved her.

This pain gutted my sister. It conquered her physical body. It gnawed at her guts and her throat. It stole all of her. When my brother-in-law removed the trach tube from her cold, silent throat on my birthday and he, my sister Rachel and I stared in despair at the pearls of this pain, tumor after tumor outside and inside the cavern of her throat, and we reached for the scarf to hide it, we saw hell. This pain has warped and changed me. Seeing hell will change anyone.

I don’t question the bargain I attempted four years ago in January. I would still trade years of my life for years more for her. Whatever my motives.

About those motives.  The proverb, “A man’s ways seem right to him but the Lord judges the motives of the heart” has haunted me. My heart is too big, too like the unfathomable planet of Solaris, a dark writhing mess of semi-self-awareness. I question myself relentlessly– harshly, I think my father confessor and therapist would say.  Recently, while running again — even Jacob’s wounds healed enough– I heard Rebecca Solnit try to paraphrase Michel Foucault on our motives: “I’m getting it wrong, that ‘We know what we do, we know why we do it, but we don’t know what we do does.” Ah. With that paraphrase, I felt set free.

When I tried my grand, selfish, self-righteous bargain to give Naomi some of my life, I think I tried to be undivided in what I did. I just don’t know what effect my doing created. I can’t. I’m not God. I’m getting the sense, the further I get from the Calvinist, fatalist version of God I was acculturated to know, that God is not so calculating about judgment. I think He is too preoccupied with love, with recovering us. And so, about fifty days after my sister’s death, when I glance at the photos of her, so full of vigor and youth, still alive and yet imagining her body reuniting with the earth from which she was formed, I needed to come alive. I needed someone to speak into my void, this hell, and to hit me with what I call my “Tommy Boy 2×4 to the head.” Tonight, out of the hell of social media and email, I got this from Orion. And it was God. Sending quails. Sustenance for coming back to life after four years of living, dying, fighting, dying, death, deserts.  This article from Fred Brahnson in Orion, “The Ecology of Prayer”  called me back from hell. Four years of hell.

So here are some “money quotes” as my friend Fr. Ian Burgess coined. (Thanks, Fr. Ian. It’s just bawdy enough to get me. A kind of “sinning boldly” with turns of phrase and wit that snag me.)

In a year when my sister wanted to outlive one of the most dangerous, fascist presidents of our era (thank God for a few years of democracy to create checks and balances), thank you, Mr. Fred Branson. It’s the best alongside Aldo Leopold, Scott Russell Sanders, Wendell Berry, Annie Dillard, Brian Doyle, Kathleen Norris and Anne Lamott. It woke me up again.

1: Money quote: “Given our innate HPtFTU, it often feels as if we can never do enough to stop the hemorrhaging of life. I wonder how much of climate activism comes from deep feelings of guilt and fear and grief over our individual and collective HPtFTU. Those of us with half a conscience are hounded by the voice in our head telling us there is always more we can do, and so we fling ourselves headlong into further actions and denunciations, hoping it will all add up to something effective while we ignore the mounting guilt.”

2: In his famous “Letter to a Young Activist,” Merton wrote, “It is so easy to get engrossed with ideas and slogans and myths that in the end one is left holding the bag, empty, with no trace of meaning left in it. And then the temptation is to yell louder than ever in order to make the meaning be there again by magic . . . the big results are not in your hands or mine.”

3. Our main work is not technological; it is theological. How do we live with ourselves given what we now know? And how do we care for what remains of our island home? That work looks less and less like “saving the world” and more like hospice care. Ecological chaplaincy.

What Christianity most has to offer the world now is not moral guidance or activism or yet another social program; it is a mystical connection to the Source of life. Cultivating that divine-human love affair seems to me the only hope left. — Fred Bahnson

4. Saint Isaac of Syria wrote: “An elder was once asked, ‘What is a compassionate heart?’ He replied: ‘It is a heart on fire for the whole of creation, for humanity, for the birds, for the animals, for demons and for all that exists.’”

5. Fred Bahnson: The practice of beholding necessarily entails a break with society, a disciplined removal of oneself away from daily routines and settled modes of thought, and in the case of the Anthropocene, fleeing the compulsive action that results from thinking we’re going to “fix it.”

6. The practice of anachoresis is to remove one’s body from a place of duress and confusion to one that offers a renewed clarity of vision….The choice is not between withdrawal or political engagement; anachoresis and prayer are themselves political acts. They change the beholder. In contemplation and silence, we cease our frenzied activity that makes us deny death. We place our hopes not on our own efficacy, but on God who acts through us. “Prayer is by nature a dialogue and a union with God,” wrote John Climacus in his sixth-century text The Ladder of Divine Ascent. “Its effect is to hold the world together.” Fred Bahnson

So read it. Or not. Join me, or not on committing to to the work of deep thinking- Shout out to the episode of The Hidden Brain with Cal Newport on Radio Replay: Life, Interrupted

And the work of anachoresis. And cultivating the great divine-human love affair. I’m not sure I can transcend the hell of 2017, all cancer, polemics and social divisiveness any other way.

I Carry the Remains of Ashes Daily

I carry the remains of ashes daily.

K, let’s call my second cousin K, messaged that this week. Her husband died one year and one day before my little sister died. Since then, she’s been carrying his metaphorical ashes. His body is interred in a cemetery in Indiana.

K’s husband, R, died of pancreatic cancer. Insidious. Pancreatic cancer killed her R, a big burly laughing spiritual giant of a man whose work in churches kept their doors open, who tried to save hardest cases including a household full of rebellious boys who harassed his kids as he drove them to church. He was the type of man who never drank anything stronger than sugary soda but, at the family Silly Santa exchange, pulled the Rudolph boxers with the red nose fixed you-know-where up over his slacks and shimmied singing “Rudolph, the red-nosed reindeer, had a very shiny nose.”  K’s shoulders quivered in laughter. She loved his orneriness. When I was very young, before our families became close, my parents sat there with dour judgmental expressions until he quit. I looked at them for permission to laugh. Obviously he was hilarious, wiggling around the room, trying to embarrass whoever thought that gift was cute. But I stifled my grins when I saw their faces.

Later he and K invited us to join activities at their church. I quizzed with his eldest son and we became close friends in high school. We grew up with shared interests in ministry and Orthodox Christianity. K and I connected over books and our work in public schools. So I heard about R’s diagnosis, I took off a few afternoons to go sit with them while he had chemo and treatments at the IU cancer center.

That he had the same pancreatic cancer snarling up his pancreas and liver as my father-in-law who died ten years ago and it tied him liver and pancreas up in the same way, well that motivated me as well. I knew his time would pass fast. I knew he’d shrink into a ghostly thin man. His skin would dry white and thin out like an onion’s. Before the evidence of his dying showed up, K would hear oncologists and experts promote experimental treatments and procedures. I worried about the hope these gave and how she might prepare herself for him to live to five years, or longer. But the statistics hadn’t improved much. He and my father-in-law died ten years apart but both within nine months of diagnosis. Both with similar descents in cancer’s Hades.– And I’ve seen it. I saw it when my sister’s husband took out her trach tube and we wrapped a scarf over the maw that it made in her neck. What cancer does is so far beyond the phrase Eff Cancer that the English language lacks the word to fit what it does.

Cancer has attacked more people I love  than all the other diseases.

Since he died, she’s been the voice who could articulate truths. She wrote late one night when I could not dwell on an essay about Naomi:  “It’s just not their turn… (people who don’t know). That’s what I say. It’s not their turn. K”

It’s just not their turn yet. Death in a first world country is strange. We’re so disconnected from the process. We put ourselves or loved ones into wards and rooms where we do so little of the care. We don’t track their vitals or wash them, help them up and down from the couch or bed. We can go home and sleep while their breath turns to train rattles and slows to six breaths a minute. We don’t often spend the hours counting the twenty and thirty second intervals between inhale and exhale in the final moments. Like we did with my father-in-law. Home deaths, which most people report they want, happen less than 20% of the time. When our loved ones die, we don’t often have them in the house with us for a day or two, like we did with Naomi. We are so disconnected from death, we can forget that 100% of us will die.

It’s going to be our turn. And when it is, whether we are the wives sitting with our husbands, at home or in the hospital, we are often likely to be alone. Or with just a few of our closest loved ones. Like birthing, there are not good words for what this experience is like. It.just.is. No one can prepare you with the right words. No one can explain the stress of holding your breath and staring at your watch. Or hoping this isn’t the last breath, or the smell of cancer rotting a person or anguish at their frighteningly feeble steps or the strange disconnectedness of seeing flashes of the person’s old true mind and soul come and go, flickering away before you know what they meant.

We are going to see our loved ones die. In the final weeks, we have talks. We might do acts of resistance. Six days before she died, when she was frail as a 100 year old skeleton Naomi heard Lydia say she was going to come over to where Abby and I, that four of the seven siblings, were hanging out. It was Sunday afternoon and I was packing up to go over to sit with Naomi. Instead, Naomi said, “Can I go too?” And she came over. It took several of us to help her up the steps and down again at the end of the visit. She dozed mostly, but she went out. K told me that in the final days, when she cared for R, they too sneaked out.

So K’s been passing along turns of phrase that resonate like the strings of a cello in me.

I carry the remains of Naomi that I have with me. I’m glad I don’t have her physical ashes. I would worry about desecrating them. I would worry about how to pass them on, who would care for them or what would be the most respectful way to let them be distributed for peace. It’s hard enough to carry the remains of what she put inside of me, those are ashes enough. At least, I can bury them in me, as needed.

K said she had a hard week last week. Hard weeks make it hard to ask for help. What if we spread the ashes and they are trampled? What if we spread the pain and grief? Some weeks we have to hold it close. Some weeks, it’s okay to ask for help. The best weeks, someone comes along and says something without prompting. K’s been through this already. She knows like few others, when to show up out the shadows and speak as one living person to another. When I can, I hope to follow her lead.

Senseless

It is senseless that my sister Naomi died of cancer.  Senseless that she had two cancers in four years. Senseless that, just when the rectal cancer seemed conquered, she died of soft tissue cancer that appears to have bubbled up and strangled her because of sores in her mouth. The sores seemed to be from the chemo killing her rectal cancer. Senseless that she died on my birthday. My forty-second birthday. Forty-two is the meaning of life, according to Douglas Adams. So, if I were trying to make meaning out of  this senselessness then life is senseless.

Her suffering was senseless. She knew that two years ago when she told me she’d given up on God. She suffered on anyway. She suffered senselessness because of her children: Eddie and Julia. Once, in a conversation, I asked her why she decided not to pursue her original inclination, to end her suffering prematurely so her kids wouldn’t witness the indignity that a cancer death wrecks on a person. She told me a story.

She and Julia were in the bathroom. Julia was just in preschool. I forget if she was bathing or getting one of her mother’s fabulous make-overs or what. Maybe Julia had busted in on her mother. I don’t think Naomi was on the commode, discreetly covering over her biological needs, which mothers sometimes do for their littles because Naomi had survived the loss of her sphincter. She’s survived the first temporary ostomy, a reconstructed b-hole, then a permanent ileostomy that saved her from death by diarrhea. On any account, Naomi and Julia were in the bathroom  and that spunky four-year-old girl, who’d been cold-shouldering her for months, buried herself in her mother Naomi and wept. I’m afraid you’ll die, she told her mother. I believe that was the day Naomi sacrificed her plan B, as many good mothers would do. Like a good mother, Naomi was honest: I’ll do everything I can to stay alive, Julia. This is to say, she could only do so much, but she would not pursue the same end that she once considered, assisted suicide.

That happened two years before Naomi died. In those two years, she heard she had no evidence of disease for nine months. Then the pain on her tongue began. She suspected danger, even after the tongue surgery, the radiation and the recurring pain in her neck. She fought strong until nothing else could be done. She accepted the experimental treatments until the tumors of cancer emerged through the dermal layer of her neck. The treatment slowed them but couldn’t stop them. It would only be sixths months of slow strangulation.

Senselessness almost drowned me while she lay dying. I traveled from Indiana to Maryland, then home and back again several times in those weeks. On the Friday before Halloween, my husband and I drove an empty wooden coffin across state lines, knowing the time was short. Back in Indiana, my son struggled with grades and relationships. His work suffered. My job suffered. How could I be mother, sister, daughter, teacher across five-hundred miles at once? A mother is still a mother even when she is not present or alive. She’s just not a very good mother. Naomi experienced that to the very end. Eddie or Julia would fall down and run past her outstretched arms, past the chair where she reclined, toward their father. A flicker waved across her face. Her jaw tightened. She knew she’d be leaving them with memories of her in little time. The thought of that undoes me.

Her suffering and death have trumped all my traumas. Her suffering divided our experience of life, death, hope, and faith. It divided her from us. Like so many traumas, her death pierced the strongest bonds in my large sibling set. The nails I helped her children and husband drive into her plain wood coffin made some of my family quiver and shudder. Our grieving pounded with anger and hurt. Nailing her coffin, I knew from previous experience, would be the one part of helping bury her that I didn’t think I could handle. But by then, I had already committed too much to quit or slip away.

You see, Naomi wanted an unconventional burial to preserve all the resources she could. She wanted to be responsible with the real estate of dirt she’d be leasing from the earth at her internment. She wanted as green a burial as was affordable. She wanted to save money for her husband and children, so I helped her husband with her home funeral.  Because we live in a world accustomed to handing off these final arrangements to strangers, my family struggled with her choice to allow me to help direct her burial and to have my husband help with her memorial service.

It’s hard to handle senselessness. Some people need to sit, rest, let someone else handle the details. I’ve participated in one home funeral and one traditional Orthodox Christian burial, which is similar. It feels gratifying to couple physical effort with the emotional effort of the days. It contains the listlessness. I find the waiting, the empty space, the need to find a place to house my sorrow and anguish lead to a kind of listless pacing, a wayward brain, a tense body. When Naomi died, I needed to trust that having a task would help me not to inhabit too many of my negative emotions- confusion, emptiness, questioning. I needed exorcise the pain with effort.

After the hospice worker brought the death certificate, her husband Andy, my sister and I began preparing her body. He took out her trach tube. We stared into the monstrous cavern cancer carved out of her throat.  When he took off the choker that held it in place, the pearlescent cancer baubles we’d witnessed growing looked even more grotesque. I took out her catheter. He disconnected her IV’s. Andy had more courage to do the work than he thought he could muster. She’s my wife. I take care of her, he said.

When we turned her emaciated body to wash her back and anoint it with frankincense, we witnessed the stripes she bore from only a few immobile days in a hospice bed. Only a few days ago, she’d propped herself on the couch, trying to watch movies with us, looking at pictures of new babies on Facebook, trying to tell us her final sense of her existence. We watched Stranger Things while she suffered her breaths near us.

Senselessly I keep confusing the word senseless and meaningless. Because I think death and suffering can stand at the edge of senseless and meaningless. But, her death is part of her whole self. She let us in on her final wishes and we did our best to meet them.

She wanted to die as she lived, surrounded by her beloved community. All of us stayed near in those last days. We worked on our laptops in her room. At night, all of us piled chairs around her. We plugged her phone into a TV and reviewed every video and photo on it. Another sister made a video slideshow of her that we watched over and over. Her kids came in, crawled like sweet innocent kittens all over their dad and giggled with us. Show us the video from Disney, they cajoled. They wanted to see themselves. With mom or dad or both.

Sensibly, I think, her kids didn’t dwell upon her in the center of the room. They left when we sang Josh Ritter’s “Girl in the War” to her and cried. We sang her favorite songs by my husband- we have an in-family professional musician- then we choked our way through the hymn “It is Well With My Soul.”  We senselessly walked like zombies in the valley shadowed by death. On Saturday morning, her breathes slowed. We sat around for a few hours, then I did yoga out of the way. Then I thought I would go for a short run. I came in from the cold just as her breath changed again. Within a minutes all the adults packed into her room. She stopped breathing around noon.

Naomi’s life is anything but meaningless. Her memorials in Frederick and Jackson included stories of her fight to get healthcare for all. She waited two years after her midwife told her to see a specialist for weird bleeding symptoms before she was tested. She put up with bleeding and weight loss and pain for two years, stuffing down her need to seek medical care because she and her husband had so many (student loan) debts, so much financial need (from being in Michigan during the Financial Crisis of 2008), and too much dignity to ask for some help. Meanwhile she put an ex-con, a friend of our cousin’s, on a bus to safety. They couldn’t afford that, silly darling compassionate Naomi. She insisted to Andy they find funds to support their World Vision kids. We have a good life, she told him, as they struggled with debt. She grew more tired and her pain grew. Even when her hemoglobin was at 7.0 (dangerously low, for those in the know), she told her husband she wanted to finish a shift at her job before going to the ER. Her doctor insisted that her husband bring her to the hospital promptly.

Naomi, now that you are dead, I’m reading the Psalms daily. The old angry, emotional, worshipful, instructive Psalms help contain my listlessness. My favorite is the 72nd Psalm because I feel exactly like the poet who says I am a senseless, brute beast before God because of all this.

Naomi. You knew that American privilege is senseless, an unfair advantage compared to the rest of the world. In your life, you made purpose in spite of senselessness. And though your death, a week shy of your 33-birthday is senseless, the world is not meaningless. You were never meaningless. You wanted to outlive the current senseless presidency. You wanted the least of these prioritized. You wanted your life to amount to meaning. It did. Nonetheless, your suffering and death are meaningless. Thank God for you.

Verses for my girl in the war

I am taking a moment to curate some verses because my father penned one this week, as he sat with Naomi, and I now sit in a dark room, hissing with the sound of her trach cleaner, the muted cotton of voices on the other sides of heavy doors, doors that large enough for stretchers.

First, my father’s poem.

Then these links:

Mary Oliver’s Cancer Poem

Mary Oliver’s “When Death Comes

and Sheila Squillante’s “Petunias”