death

Instead of talking about death, let's sing about it

I spent the day putting together an application to be a speaker at End Well — “a dynamic gathering of individuals committed to generating human-centered, interdisciplinary innovation for the end of life experience.”

I wanted to share what I wrote in my application because it may spark something in you — a story you want to share with me or perhaps you have a place for me to come speak and sing these songs.

What would you talk about on stage? 250 words or less.

My mom got ovarian cancer. I abruptly left a successful career as a performing singer-songwriter and moved home to be her primary caregiver. Throughout all the acts related to her “living dyingly” (to use Christopher Hitchens’s potent phrase) -- the rounds of chemo, the periods of radiation, and, eventually, the months of  hospice care -- I wrote songs. It was nearly impossible to find time to craft lyrics and melodies amidst the overwhelming demands of her disease. It often felt utterly absurd to put the enormity of our grief into musical form. But try I did. In little bursts of lyrics and melody.

That act -- of being creative in the face of the ravages of her disease and her impending death -- ended up being my most important act of care.

I’d watch the impossible weight of her sadness and despair lift -- just a little -- as I sung her my song “Letting Go,” “Come a little closer now / Take my hand / It’s not loss / Let’s try to understand / It’s so hard / You should know / It’s not loss / Let’s call it letting go.”

That I would use precious minutes of free time to write a song about her made my mom feel loved, worthy, and cared for on a primal level. My songs gave expression to emotions neither of us knew how to talk about, emotions best expressed through the ancient act of singing. She experienced release and relief through that rhythm and resonance.


How is this speaking topic new, innovative?  Be as specific as possible.

Writing and performing pop/jazz songs about death, dying, and the landscape of loss while living that experience (as the primary caregiver) is something I’ve not seen and heard many other musicians do. There are, of course, some brave souls who’ve walked the path. Paste Magazine, that arbiter of culture, has done a round-up of the most well-known examples: “10 Historic Albums About the Loss of A Loved One.” Still, it’s an endeavor that’s heart-wrenching and begs a lot of questions.

Now that I am recording and performing the music I wrote for my mom, audiences ask me how I did it. They want to know two things -- how I did it literally (how I found the time and the energy when the caregiving was so all-encompassing) and how I did it figuratively (how I found the words to express the inexpressible blank space of death).

To be creative in the midst of the complexity of caregiving was no easy feat. I wrote melodies while my mom and I were sitting in the chemo suite. I wrote lyrics on the days when she couldn’t get out of bed, dead-tired from the side effects of treatment: “She’s been lying in her bed all day, sleeping off the meds / Think I’ll open up the window to what hasn’t yet been said.” I’d retreat to my bedroom and scribble away, pausing to check on her every hour or so. I’m a musician. I knew that somehow, in some way I had to try to process the unfathomable through my chosen medium.

After I finished the first song about our experience, called “Death Come Slow,” and after I played it for her, I knew I had to keep writing and singing. She burst into tears and hugged all the air out of me. I felt like I had finally found a way to speak to the shadow figure of Death that was haunting us: “Your crooked shadow there at the door. My two hands can’t help her no more / Split my fingers, skinned both my knees, crawling after her disease. / Death come slow / Death come shy / Death don’t you look her / in the eye.” That song gave us both the courage to face another day.

What would your audience get out of hearing these songs and my story? They’d viscerally experience a different way of processing death and dying. Music is a different medium than conversation, than dialogue, than spoken word. It’s elemental. It breaks us open; it breaks through in ways the intellect alone cannot.

Lastly, I want to tell you that I made a conscious decision to write songs not only about the dark and sorrowful parts of my mom’s dying, but also about the light and joyful aspects of our time together. She and I were hyper-aware of the opportunities her diagnosis presented. We talked honestly not only about how she wanted to die, but also about how she wanted to live. Every conversation about death turned into one about life. There is a dimensionality to these songs. The lyrics and melodies transform unutterable grief into something shareable, even sing-along-able. The music is candid and compassionate, heart-wrenching and, miraculously, life-affirming.

What the fuck do I do now ... or someone I love's got cancer, how do I help? Start here.

So life’s caught up to you.

Someone you know and love has cancer or some other dread disease and you want to help (or have found yourself wanting to help) care for them.

And you don’t know what the fuck to do.

It’s all so overwhelming and hard and strange and tiring and confusing. You’re struggling to keep your head above water there are so many things to do and think about. So many dire decisions.

I get emails like this all the time now from friends and readers who are going through this. They’ve been thrust into caregiving by an illness of a loved one. They want to show up and do the right thing. They ask me for advice.

Start here:

  • 3 ring binder the shit out of all the paperwork

Get a 3 ring binder where you (and the person you are caring for, if they are able) can keep all the info the doctors and nurses and anyone else give you in one place. Or maybe a big file folder is more your style. Pick a system and use it.

You will be inundated with sheet after sheet of test results, forms, scripts, etc. You might want to be able to put your finger on her last blood tests, say. If you don’t keep it all in one place, that will be hard to do. And you will burn energy you don’t have looking for something simple like that. You can be a better advocate for your loved one if you have all the information handy.

  • The “Running Notes” notepad

It’s also a good idea to have one notepad or notebook (of these can be sheets of loose leaf paper you keep in the 3 ring binder) where you keep a running log of everything related to her health. You’ll want to write down things like: questions to ask the doctor the next time you visit, her vitals when she goes for tests (weight, blood pressure, date and time of recent BMs — yes you might you have to keep track of this), questions you think of to ask the doctor at the next appointment (undoubtedly you will have questions you did not ask, forgot to ask, that came up in between appointments), etc.

You will find it handy to keep track of how she’s feeling, what she’s eating and when, what her sleep was like. These details become more or less important throughout the illness. But having someway to follow along will help with certain decisions.

The reason to have these running notes is threefold.

One, it keeps track of where you are in the illness. It’s a logbook for you and her caregivers. You can use it to take notes at appointments and to look back to reference what the doctor said, how she was feeling, etc. Memory is tricky. Don’t rely on it. Especially when you are overwhelmed and tired beyond belief from the caregiving. Stress and worry does a number on memory.

Two, you won’t always be the one caring for your mom/dad/partner. If you aren't the one taking your mom to a certain appointment or if someone comes to spell you from your duties for a bit, they can see what's been happening with her care and you can ask them to take notes of things they do with her, what they observe. That way, when you get back to caring for her, you will know what has been going on.

Finally, it gives you a sense of control when you feel you have none. You and your loved one have just been walloped by life. Being able to write down lists and numbers and have something to do with your hands counts for a lot. It will help you deal with the stress and the worry and the anxiety.

I’ll keep writing about this topic as people keep asking me questions and reaching out. You can send me an email if you have questions. Until then, I am thinking of you and your loved one. Caregiving is everything — sweet, terrible, hard, amazing, will kick your ass, will make you weep for joy and wonder, will humble the shit out of you, will make you realize how strong you are. I wish you presence during it. Be with them. Show up. When in doubt listen and be present. That’s all anyone needs ever. Close your mouth and be there in person. And if you are moved to ask about their spirits or how they are doing ask “where does it hurt?” and “what’s the hardest part about this for you?” And listen to the answer. And if possible, find someone to ask you (the caregiver) these questions.

You are enough and I love you.

Life takes time and effort

Productivity porn.

It’s on the rise.

These days it’s not enough to just do something for the sake of doing it, for the sake of exploration, for the sake of fun, for the sake of being a good person, for the sake of your soul and what feels good to you and makes you satisfied on the inside.

No, everything we do these days, it’s all got to have a point. Got to lead to a dollar bill, a side hustle, a business or a something that the outside world (and your inside self-hating voice) deems “the point.” What ever you do, it’s got to make money or make you famous. That’s what the voices say.

Life takes time and effort. And most things worth doing don’t have a “point.”

The time and effort IS the reward.

I spent about 4.5 years (1643 days +/-) with my mom. Seeing her from cancer diagnosis to death (and beyond).

Yesterday, I spent 24 hours with my dad. Hanging out, taking him to doctor appointments, caring for him, talking to him, helping him — with all the humor and love and calmness inside me — through some very basic health issues (having to do with toileting).

What’s the point of all of that?

No one ever saw all the things I did with and for my mom. No one sees all these moments I spend with my dad now, being present, being with him (not just “checking in,” or waltzing through, or asking someone else about how he is doing).

You can’t phone-in the time and effort life takes. You can’t delegate it to someone else. I observe, though, that lots of people fool themselves into believing they can. It always leaves me wondering how their souls feel.

There is no point to all of those hours and days I spent with my mom and now spend with my dad. No point other than love and being witness to life and aging and death and change and my own minute-by-minute practice of becoming a conscious, compassionate, unconditionally loving human.

Am I willing to torpedo my TEDx talk?

Today, during my weekly call with my life coach (yes, I am a life coach that has a life coach) we talked about what I want to create with my TEDx talk that is happening this Thursday night, November 8, 2018.

Here’s a bit of what we talked about and what we created in our conversation … 

What is possible if I completely open my heart and give my TEDx Talk from my most vulnerable, raw place?

If I were to completely open my heart and be as vulnerable as possible, here is everything I fear.

I’m afraid I’ll …

  • completely lose my way in the talk

  • get so overwhelmed by the memories and emotions and sadness of caring for my dying mother that I can’t go on with the talk

  • not be able to sing

  • my singing voice will be off-pitch and sound horrible

  • run out of time (TED only gives you 18 minutes maximum to give a talk)

  • etc

At this point in my preparation process, my talk is polished and well-rehearsed (to the extreme). I’ve given it to 15+ groups of people as of today. I’ve rented rehearsal spaces to work on it and even had a friend get me into her school auditorium to give me the chance to practice on a big stage (beyond the time I get during our dress rehearsals).

But polished and well-rehearsed is not what connects to people’s hearts. Polished and well-rehearsed does not change lives. It is impressive. But I don’t give a shit about impressive. I give a shit about liberating everyone around loss and death. 

Am I willing to lean into my emotion so much that I risk the whole thing crashing and burning? Torpedoing the whole thing because I am so in touch with the emotions and feelings of that 4 year journey with my Mom from diagnosis to death?

I am.

What A Song Is and What A Song Does: Intro to the Death Album

On December 9, 2017, I went into the studio to begin recording my next album — affectionately nicknamed (for now) “The Death Album.” The songs chronicle my time accompanying my mom from diagnosis of ovarian cancer to death. At this point, in the midst of this multi-year project, I feel compelled to corral some of the thoughts I had and notes I made along the way.

My 3 Things - August 2017

(The My 3 Things FAQ.)

1. POEM-ING: A little something from Jack Gilbert
Jack Gilbert's poems seem to show up in my life just in the nick of time. After reading and re-reading his book The Great Fires a few years back, I lost track of his poetry for a while.

(Some background: Gilbert received unprecedented fame when his first book received the Yale Younger Poets prize and a nomination for the 1963 Pulitzer Prize. At the height of the hoopla, he left America and its culture and literary scene behind by way of a Guggenheim fellowship to Greece. Though he did eventually return to the US, he never again enjoyed mainstream success. He considered himself a “farmer of poetry." His poems are spare, unhurried, full of life and the living of it. He waited two decades to publish his second book of poetry and another decade to publish his third.)

This month, a friend inserted Gilbert's poetry back into my life by reading this poem aloud to my voicemail. Needless to say, I saved the message.

Gilbert is a master of the bittersweet. Life, he shows us, is both beautiful and painful and there's absolutely no need to resolve the two.


HARM AND BOON IN THE MEETINGS
We think the fire eats the wood.
We are wrong. The wood reaches out
to the flame. The fire licks at
what the wood harbors, and the wood
gives itself away to that intimacy,
the manner in which we and the world
meet each new day. Harm and boon
in the meetings. As heart meets what
is not heart, the way the spirit
encounters the flesh and the mouth meets
the foreignness in another mouth. We stand
looking at the ruin of our garden
in the early dark of November, hearing crows
go over while the first snow shines coldly
everywhere. Grief makes the heart
apparent as much as sudden happiness can.
 

 

2. SEEING: Dawson City: Frozen Time, a film by Bill Morrison
The LA Times film critic Kenneth Turan nailed it when he said Morrison's new film "does so many things so beautifully it is hard to know where to begin."

I wholeheartedly agree.

Morrison’s film tells many stories, but the main one is about how several hundred reels of volatile nitrate film from the 1910s and ’20s were discovered decades after they were presumed lost. Not just lost, but totally forgotten. They were buried (used as landfill) in Dawson City, the legendary Yukon River town in northwestern Canada, considered ground zero of the mid- to late-19th century gold rush.

How the films ended up there, how they were discovered, and how they were saved is a wonderfully strange odyssey that I won't spoil for you. The life stories of the characters involved (including a certain Frederick Trump ... yes, that Trump) are simply not to be believed. 

Morrison's suspense-filled narrative is largely created from what is left of the now un-buried, un-lost films. At times his story boomerangs away. He simply cannot resist a few giddy and mesmerizing silent-film montages and meditations full of visual riffs and rhymes. These beguile and then astonish, as you remember that what you are seeing should not have been seen, would not have been seen had it not been for the permafrost and a backhoe.

When the house lights came up,  I was stilled, utterly spellbound, but Morrison's work is about impermanence and change and my life beckoned. Time is never frozen. 
 

3. DANCING TO: Cheryl Lynn's Got To Be Real

Seven minutes of unadulterated awesomeness. I dare you NOT to dance to this one. It's totally impossible. How real does it get? About as real as this song being considered one of the defining moments of disco. Oh hell yes.

 

+++ OUTRO & FAREWELL +++
It has been a privilege to have you aboard while I row this little boat of mine down the river of life, to point out the changing scenery, to remark on the weather (internal and external), and to luxuriate in the eddies and swirls of thoughts, delights, inspirations, and happenings. 

I have loved writing My 3 Things for you these past two years, so it is with a mixture of happiness and grief that I let you know that this is my last edition.

To all those who ever reached out to me by email or by leaving a comment on the blog itself, I salute you for your courage and I thank you for your humanity and willingness to share. You make my day, every day.

What's next?

I'll be creating and sharing more writing with you, but how much and when and about what? Who knows! I am in that wonderful space of creation and possibility. Life is short. I am dying everyday. Time is not frozen; limits are not fixed.

I look forward to connecting on the next adventure!

My 3 Things - March 2017

1. LISTENING: “I Told Jesus” by Roberta Flack (aka “If He Change My Name”)

Looking across different versions of a single song is one of the best things about recorded music.

In last month's My 3 Things, we listened to Marian Anderson’s fine rendition of this gospel tune. Now, we turn to Flack’s take on it. Entitled “I Told Jesus," it appears on her magnificent debut album First Take, released in 1969. (I am forever indebted to my friend John Ellis for telling me about this album and insisting I check it out.) 

Her arrangement is slow and brooding, a string section quivering from the start. It patiently builds, almost coming to a stop once or twice in the beginning. Flack gazes inward, the lyrics performed sotto voce. Momentum gathers as the song moves on, and the hushed restraint gives way to defiance by the end (marked by her powerful vocal cadenza starting at 5:24). 

Now that we've heard Anderson and Flack, spend some time with these two takes by Nina Simone: Live, Village Gate 1962 version and Live, Paris 1968 version.  Simone is mercurial as ever. You won't be disappointed.

 

2. READING: Arguably by Christopher Hitchens
Reading the final few pages of this provocative, breathtaking, and immensely satisfying collection of essays was a sad experience. Turning the last page, I had to face the fact that I’d never be able to open one or more of our important newspapers or magazines and read Hitchens on, say, President Donald Trump, to pick a single spring-loaded topic.

Arguably was Hitchens’s fifth collection of essays. Published in September 2011, he died in December of that year. More than 780 pages long and containing 107 essays ranging from literary journalism to political commentary to cultural criticism, his writing here is vital, his thoughts and opinions as relevant today as when they were written. 

When I availed myself of the critical reviews of Arguably (after I had finished reading it), I found I wasn't the only person saddened by this book. When the book came out, Bill Keller of the New York Times wrote: "This fifth and, one fears, possibly last collection of [Hitchens's] essays is a reminder of all that will be missed when the cancer is finished with him."

All that will be missed is a shatteringly tremendous amount.

Was there ever a US President — much less a US politician or, let’s be real, a single person on the face of planet Earth — more in need of one of Hitchens’s blistering tear-downs than this orange-tinted man-baby? #seriously

Where to begin? Let's start with language itself.

Hitch would be having a f-cking field day with Trump. Studies put Trump’s vocabulary at, variously, third- or fourth-, maybe (if the linguists are being generous and he -- for once -- decides to stick to a script) a sixth-grade level. 

Hitchens’s vocabulary? 

Nothing short of jaw-dropping. Reading Arguably, I looked up more than 60 words I didn't know or didn't know well enough. And Hitchens’s turn-of-phrase is masterful, delightful; I found myself highlighting passages just so I could return to and revel in his language not to mention his argument.

The essay "Words Matter" (from Slate, March 3, 2008) gives us a clue as to how outraged Hitchens would've been by Trump's abuse of language. Hitchens is heartbreakingly prescient:

“Pretty soon, we should be able to get electoral politics down to a basic newspeak that contains perhaps ten keywords: Dream, Fear, Hope, New, People, We, Change, America, Future, Together. Fishing exclusively from this tiny and stagnant pool of stock expressions, it ought to be possible to drive all thinking people away from the arena and leave matters in the gnarled but capable hands of the professional wordsmiths and manipulators.”  

He nailed it, I’m devastated to say. 

(It is beyond the scope of my endeavor to imagine how satisfying it would be to hear Hitchens parse the incongruous word pairings “alternative facts” and “fake news” with which we are forevermore saddled. And Trump’s banning of major respected news outlets from the White House daily briefing on Friday, February 24?? I imagine Hitchens would’ve been apoplectic.)

There's so much in this collection of essays that I could go on and on about, but I'll finish by saying that Hitchens’s respect for the reader is a tonic. 

I felt revivified and renewed reading each of these essays, as well as challenged and occasionally maddened (his piece “Why Women Aren’t Funny” isn’t funny, in more ways than one).

Agree with him or don’t, either way this book is a riveting, important read. 

 

3. UPDATING: Death, a reading list - Part 2 … revisited for the making of the Death Album
Way back in December of 2013, I wrote a blog post called “Death, a reading list” in which I shared a “list of the books about death and dying that I find worthwhile, thought-provoking, gut-wrenching.”

The post was a snapshot of where I was then, what I was thinking and learning about.

At the time, I didn’t know how long my Mom had to live or what work she and I would be doing to bring her to a “good” death, by which I mean a death she had chosen, was at peace with, a letting go that felt true and right to her being.

Turns out, there would be more of ... everything: chemo, cyber-knife radiation, hormone therapy, and hospice. And that was just the medical / physical part of it. 

There would still be more of the entire range of her spiritual / psychological reckoning with cancer and death that we both felt was as important (if not more) than any of the miracles her doctors could perform.

I am talking about the deep conversations we were to have, the many Joseph Campbell videos we were to watch and re-watch, the half-a-dozen sessions with a wonderful and caring oncology psychologist, the dedicated trips to visit (in the words of Campbell) her “bliss stations” or favorite places, and the specifically-planned but wonderfully-unstructured time with dear friends and closest family. There would be many more walks in nature, much more time with her dogs, and hours of feeling good and not-so-good, and hours feeling she was ready and yet not ready to die. In short, there was so much more life to be lived between that blog post and her last day, October 13, 2015.

I've been living and wrestling with her death ever since. But then you know this: you've been following along.

The two great commitments of my life since she was diagnosed in October of 2011 have been: 1) caring for her from diagnosis to death (and beyond); 2) writing songs about that journey.

I’ve written well over 20 songs and this year I'll be making something of them — an album, more than a few concerts, collaborations with other artists, etc.  I lovingly and tongue-in-cheekily refer to this project as “The Death Album.” 

Recently, I’ve played some of the songs on Facebook Live; maybe you’ve watched. (If not, this is one you should watch because I lay it all on the line.)

Since that "Death, a reading list" blog post, I’ve done a lot of living, reading, and songwriting.

I thought, on the eve of making the Death Album, it would be appropriate to update the original post. For your consideration: Death, a reading list - Part 2.  

What follows is only an excerpt ... 
"This list is certainly not a “best of," nor is it in any particular order. You have to find your own way through this topic, as we all do. And just because a book appears here does not mean I loved it and would necessarily recommend it. These titles have shaped my thinking about death, but that shaping may have taken the form of a single sentence or two, one chapter, or a particular stance toward mortality more generally.

I've only carried one book over from the original list ... and that is Christopher Hitchens's Mortality.

I am never not reading Mortality. I finish it and immediately begin again. I've given away my own copy so often -- at gigs and to friends and acquaintances -- that I now keep a stack on my desk for just such occasions. It is the keystone of the Death Album; it is the touchstone of the songs about death I have written and am writing still."

THE LIST:

Christopher Hitchens, Mortality

Leo Tolstoy, The Death of Ivan Ilyich

Julian Barnes, Levels of Life & Nothing To Be Frightened Of

Astrid Lindgren, The Brothers Lionheart

Roland Barthes, Mourning Diary

Max Porter, Grief Is The Thing With Feathers

Atul Gawande, Being Mortal

Edited by Kevin Young, The Art of Losing: Poems on Grief and Healing

Complied by Yoel Hoffman, Japanese Death Poems

Alphonse Daudet, In the Land of Pain

Marcus Aurelius, Meditations

Barry Lopez, Arctic Dreams

Lapham's Quarterly: Death, Volume VI, Number 4, Fall 2013