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

The piece of writing down below (20 minute read) is something I sent to the fine folks on my mailing list first. If you'd like to get the goods before the rest of the web does, go here to sign up.

In this post, I create the context for Death Album and explain what these songs are and what these songs do. I am on a mission and want you to know about it. 

As always, I want to hear from you. Please leave a comment. Tell me what sentences and feelings resonate with you? Are you on a similar journey? I read everything you send me.

Singing and playing for Mom two days before she died ...

Singing and playing for Mom two days before she died ...

PREAMBLE
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.

 

THE BEGINNING
My contract was negotiated. My bags were packed. My guitars sat ready in their cases in the middle of my apartment in NYC. Late August and most of September 2011 had been spent preparing for an extended trip to Doha, Qatar. I’d been hired to play a regular gig at a club there. Only one last thing to do before I left: go say goodbye to my parents.  

When I got out of the car, my mom was already in the driveway. It was a clear fall afternoon. I remember the russet carpet of needles on the asphalt from the larch tree nearby. The moment I saw Mom’s face, I knew something was up. She looked worried, pinched. She revealed that she’d been having some health troubles for a couple of weeks, and after trying a few things that didn’t seem to help, her doctor had ordered a CT scan. The results were due in the next hour or so.

As soon as she described her symptoms, my stomach dropped. I knew instantly what she must have been hoping and praying wasn’t true. Her sister, Ellen, had been diagnosed with ovarian cancer a few years before. Ominously, my mom had the exact symptoms my aunt had just before the doctor found her cancer. (Thankfully Ellen was still in the land of the living. But her debulking surgery and first-line chemotherapy had been a harrowing experience, my mom and her other sisters taking turns nursing my aunt back to “health,” which really meant, so far, a couple months of remission followed by more chemo.)

The news of the CT scan did arrive. There was a mass in her abdomen. The doctor wanted to operate as soon as possible.

Cue the bottom dropping out. Of everything.

I “ate” dinner with my mom and dad, though I don’t remember much of anything between the results of the scan and walking into my apartment in NYC. I know I insisted Dad drive me back to the train station. I wanted to get to New York immediately. I needed to break my contract with the contacts in Qatar, unpack, repack, and move home. I was going to see my mom through whatever was coming next.

Within 24 hours, I was back in Pennsylvania, one bag and one guitar in the corner of a childhood bedroom. I was to be my mom’s primary caregiver.

I “chose” to care for my mom, but it didn’t feel like a choice. I was compelled, possessed. It was as if I followed the directions of an inner voice: move home, figure this out, get my bearings, reassure her somehow, be brave somehow, gird my loins.

 

THE WHY -- LOOKING DEATH IN THE EYES
In the hours after my mom’s debulking surgery, my brothers, my dad, and my mom’s sisters and I were in and out of the hospital visiting and sitting with her. The doctor said the surgery went well. Now that he had the tumor out, he could biopsy it and tell us exactly what kind of cancer she had. Would it be carcinoma, the cancer her sister Ellen had, a more “garden variety” ovarian cancer, more studied, and thus more familiar to treat? Or would Mom be dealt the bad hand of carcinosarcoma, a more rare and aggressive type of cancer?

I was the only family member in the hospital with Mom when the doctor came to talk over the biopsy results. I met him in the hallway. He wanted to tell me the news then and there, but I knew my mom would want to know everything the moment there was anything to know. Into her pastel-colored hospital room we walked.  

She’d been dealt the bad hand: carcinosarcoma.

Cue the bottom dropping out. Again.  

(For the record, her official diagnosis was “primary peritoneal carcinosarcoma,” but her doctor’s shorthand -- thus mine -- was simply “ovarian cancer.”)

We managed to ask a few halting questions in the wake of his devastating news, then the doctor left the room. A vacuum-like quiet closed around us. She and I sat as if in the bottom of the Mariana Trench, each in our own watery, muffled silence. Eventually, we began to talk. We would say a few words, haltingly ask a few questions. Then we wouldn’t. I held her hand continuously. I kissed her. I did not want to leave her side. What to do? Who to tell? When to tell it? We were dumbstruck. Fucked.

Later, I wrote the song “You More Than Me” about this exact moment:

His words they stung
We were roped and hung
You more than me, more than me.

Eventually, I looked her straight in the eye and said something like, “We will not mince words.”

She wasn’t a person who minced words ever. But still. I felt it was a matter of survival, of sanity for her and I to speak plainly about death from now on.  

We both knew where her cancer would lead: the grave. Sooner or later. No point in pretending otherwise.  

Everything that came after for us both -- front-line and second-line chemo, cyberknife radiation, salvage chemo, hospice, all the songwriting and my mission to change the conversation around death -- came from that initial pact we made to speak plainly about her death on that first endless worst day.

 

HOW TO LIVE AND DIE
From this honest stance towards her mortality, my mom and I began what was to become a years-long conversation about how she wanted to live and die. I brought a lifetime’s worth of reading, questioning, and love to bear. I introduced my mom to the work of Joseph Campbell and Karl Jung; I read her passages from the Stoic philosophers; I put the Odes of John Keats in her way; and I gave her Shakespeare to read (King Lear, most obviously).

At the same time that she and I took solace in those founts of wisdom, I realized I hadn’t ever really studied death with a capital “D” as a topic in the literature and poetry I’d read. Many of the most recognized texts about Death were unknown to me until I had the occasion of my mother’s impending death to go looking for them (The Death of Ivan Ilyich by Tolstoy or In the Land of Pain by Daudet to name but two). I felt somewhat equipped to understand death and loss (my mom’s wasn’t the first death I’d witnessed, after all), and, yet, at the same time, I felt totally unmoored. This a major feature of the landscape (mindscape?) of living through someone dying slowly from cancer or another illness like it: you’re simultaneously prepared and unprepared for it. Ultimately, the finality and void of death shatters thought.

It is telling, then, that the first blog post I wrote about my mom’s ovarian cancer was Death, A Reading List. I needed the ballast of books to stablize me. Later, after Mom died, I created Death A Reading List part 2.

My mom never shied away from reading about and wrestling with the questions of mortality. She was the first one in our family to read Atul Gawande’s book Being Mortal when it came out in 2014, three years into her battle with cancer. She embraced the sadness and the mystery of her coming death. There were many tears, of course. Gallows humor prevailed. There were many moments of profound silence, too. Words failed. Often. Always she’d be willing to start the conversation again.

I now realize how rare this quality in her was, how lucky I was to care for one so willing to look death in the eye.  

We spent a lot of time together over the next four years: endless hours in the car back and forth to the hospital, in the chemo suite, in the kitchen while I prepared meals. In short, we talked our way through all the mundane and beautiful moments that make up a life, especially the life of someone “living dyingly,” to use that perfect phrase coined by Christopher Hitchens during his life with and death by esophageal cancer, a journey he wrote about in the brief memoir Mortality. (This is a book I have never stopped reading since I first picked it up in the early days of my mom’s cancer. I have given away so many copies of it I’ve lost count.)


Here is a short and incomplete list of what we talked about over the course of her life with cancer:

  • Who do you want to spend time with in the time you have left?
     
  • What projects can I help you finish while you still have the strength?
     
  • What would help you feel whole in this moment, and in this one?
     
  • What’s the hardest part about this (this = cancer, chemo, the side-effects of chemo, dying) for you?
     
  • What do you want us to know and remember about you?
     
  • Is there anything you want to say to anyone that you have not already said?  
     
  • When do you want to stop all the medical intervention? (AKA When is enough enough?)
     
  • What do you want your final days to be like?
     
  • Where do you think you go -- if you think you go anywhere -- when you die?
     
  • Do you know how truly loved you are? If not, what can I do to help you know and feel this love?

 

These questions about life and the meaning of it weren’t approached like a checklist we had to get through. They appear here as such because I’m condensing my narration of the past. The deep and true answers came from spinning and spooling out the conversation over days, weeks, months and, luckily, years. I am not sure “answers” is even the right word to use. In my mom’s case, the answers gave way to more questions. There was so much not-knowing involved. Sometimes the answers “looked a lot like silence,” to use a phrase I’ve heard the meditation teacher Jon Kabat Zinn use.

I’d bring up one of these weighty questions on the drive to the hospital for her weekly dose of chemo. Like a fishing lure, I’d toss it lovingly into the pool of time we had available to us that day. We’d start talking about, say, whether she was feeling whole. Then, we’d spend the next five hours doing the work of fighting cancer -- blood draws, chemo, back and forth-ing with the doctor and team of nurses, double-checking meds, etc, ad nauseum (literally … chemo made her very nauseous). I’d drive her home, stopping at the pharmacy for the drugs she needed to manage a symptom or five. Back at home, she’d fall into the abyss of sleep that a body being killed by chemo sleeps. We wouldn’t circle back to the topic of feeling whole until a few days later, while I made dinner for her and she sat at the table, trying to read the paper, or just sitting, conserving energy for the effort it took to conjure up an appetite. To use a tennis metaphor, sometimes the space between the serve of the topic and the first, lengthy rally of it would give us both much private rumination time. We had plenty of space to turn over thoughts and feelings. This was the gift of caring for my mom in the day-to-day. It was the gift that her successful response to the chemo drugs gave us -- more time to talk.

Selfies make the time in the chemo suite go by more quickly ... 

TURNING QUESTIONS INTO SONGS
It was hard for Mom to truly accept how deeply respected and admired she was in the community. Over the course of her life, she was deeply involved in the organizations about which she cared. She gave all of herself to them -- energy, attention and wise counsel, not to mention her formidable talent for fundraising. Yet, she never really believed in her own successes. She only saw how much she wasn’t doing or how much more she could be doing. Friends and acquaintances who’d worked with her over the years, upon hearing about her cancer, sent forth a tidal wave of love and support that completely overwhelmed her. They wrote letters, sent texts and emails, called the house, brought food and flowers. More than a few people did this ongoingly. She was stunned and felt undeserving. It had never occurred to her that what she did mattered so deeply. Add to the disorientation of all this love and emotion from others her own indescribable but real sense of guilt around getting cancer. She felt she was burden to me and the family. No matter how many times I told her that I’d willingly chosen to move home and be her primary caregiver, I always felt that there was a barrier to her fully embracing my love and devotion. 

I tried so many ways of telling and showing her how much I cared it’s almost comical. There were obvious ways: discussing with the doctor the reasons for or, more importantly, against a new course of treatment or tracking down information on clinical trials for which she might be a candidate. There were less obvious ways as well: mastering the making of a great cheese souffle because that was one of her favorite comfort foods from yesteryear. (Thanks to cancer, I can now make a fucking fantastic cheese souffle.)  

None of this seemed to make a dent. There lingered a feeling of resistance on her part, an undercurrent of guilt, a blush of shame. What disturbed me most is that I am very sure she only let me see a tiny hint of these feelings. In her darkest hours, I knew the guilt was deep, the shame intense. Heartbreakingly so.

Finally, at a complete loss of what else to do or say, I made up my mind to write a song about how I felt. “Dark is your horizon / Dark is your disease / But I’ll hold you when you’re hurting / when you’re on your hands and knees” is the first verse to “Nothing I Won’t Bear.” The chorus goes on to say another version of what I’d been saying all along:

I know you are weary
I know you are scared
There’s nothing I won’t do for you
There’s nothing I won’t bear

I played the song for Mom soon after I had a chance to record a demo of it with my pals Julian Lage and Scott Colley. When she heard it, the message went all the way through her. With tears in her eyes, she bear-hugged me for such a long time my soul felt squeezed. She printed out the lyrics and listened to it over and over. We never had the conversation about her being a burden again. Going forward, I noticed that she was able to let more outside love in, the love coming from beyond the immediate family and her closest friends. It was as if my song -- or the act of me writing the song -- lowered the volume on her private anguish.

Music gets inside us in ways that words or gestures alone cannot. I ended up writing five more songs in the early days of her disease. When I saw how much easier they made her journey towards understanding herself and her death, I began to get a sense that this music might help other people too.

My "Death/Album notes" doc ... 

SHARING THE JOURNEY WITH YOU
Once a handful of the songs were written and she’d heard them, I started experimenting with playing them live at the few concerts I was able to do while she was sick. (Her care came first for me, before music and before myself even. It was hard to “schedule” anything in my life. Cancer -- merciless, petulant, erratic, exhausting -- keeps its own “schedule.”) At the first few shows, I’d only played one or two “death songs,” as I came to refer to them. It seemed a bit much to play all of them in one set. Could I really go there with strangers? Did I really want to go there with strangers? Who was I to bring up this topic that still so baffled and battered me? 

Something unexpected would happen after a show: people lined up to tell me about their own experience with cancer or a terminal illness. They’d share how hard the caregiving was, or how bravely their dad or sister fought the disease. They’d tell me about a friend who’d just lost their partner or child. They’d tell me about how surviving their own cancer changed their lives. Some would ask my advice. What’s the best way to be there for a friend who’s going through chemo? Should I send flowers? Should I send food? How do I battle the fatigue I feel as the caregiver? How do I deal with the family member who said they’d help with the care but who’s now gone MIA?

House concert w/ Julian. Mom's in the audience listening to songs written about her ... 

It was in these post-show conversations that I realized that my songs worked in the wider world too. They opened up a space for two strangers to talk about the shared experience of living with loss.

As my mom kept living with cancer, I kept writing songs about what she and I were going through.
 

WHAT A SONG IS AND WHAT A SONG DOES
The mission of this music is to change the conversation, or lack thereof, around death.

In caring for my mom, I realized that talking about death is talking about life. It’s the same conversation. Talking to Mom about how she wanted to die always swung around to talking about how she wanted to live.

Discussing her cremation (where she wanted her ashes to go) led us to talking about a hike we had taken in Maine, which led us to how many years she’d been hiking there, which led us to whether we’d be hiking there again in a matter of months. She was fully alive as she was fully dying, imagining her death and the time beyond it.

Daring to look at the darkness and mystery of her death called forth her brightest light. The plans she and I laid for her actual dying days were the robust plans of a living person. She wanted all of us around her, reading, laughing, crying, walking in the woods and fields near the house with the dogs, playing music, drawing, bringing her flowers from her garden. Mom and I talked about what would come next for me, for my dad, for my brothers and their families, for the grandchildren. We talked about what organizations she loved dearly and wanted to support still, what family traditions would continue and how they would feel without her. Sometimes these were hard conversations and other times they were easy and life-affirming. “We are living every minute of your dying day” is a line from a song I wrote for her called “Letting Go.”

My mom’s cancer made me hyper-sensitive to my own mortality. “We’re dying every day” is a phrase I’ve been saying since she got sick. More than a few times the response to this pronouncement of mine is a reflexive shudder and grimace coupled with a directive: “Cheer up” or “You’ll feel better soon” or “Lighten up.”

The thing is, I am cheerful; I feel better now; I am lit up.

Traveling through my mother’s death made me more of all of these things. Contemplating my own death, preparing my own funeral arrangements, writing to the most important people in my world and telling them what they’ve meant to me and how they’ve made me a better human, all these things have made my life more full. I am ready to die and because of that I am ready to live. Sharing these songs -- the making of them, the mission of them -- is but one proof that I too am living every minute of my dying days.

Notes on what I want said, done, played at my funeral ... 

WHO INSPIRED THESE SONGS?
In addition to my mom, as I wrote these songs, I thought so much about:

All the caregivers out there. The unsung heroes doing the daily, largely invisible, and certainly not-recognized-enough work of caring for those who need daily physical, mental, and emotional tending because of cancer or a chronic or terminal illness.

The scores of women who received treatment for ovarian cancer next to my Mom in the chemo suite at Christiana Hospital in Delaware. We’d see them week after week, sometimes month after month. We’d chat, smile, listen, but most of all just be there, suffering through together. From all walks of life, in all stages of treatment, I can still see your faces.

The doctors and nurses who were generous and wholehearted with their knowledge and care.

The souls in all the waiting rooms (I lived several lifetimes in hospital waiting rooms), the men and women I saw coming and going, the administrators helping to get us where we needed to go.

The hospice nurses who were so generous, wise, kind, full of grace and humor, and, most reassuringly of all, no-nonsense care and relief.

The friends who lost their moms before I did. The thing about the experience of losing a mother is: you don’t know until you know. Well, now I know. I’m now a member of the motherless child club. It sucks. I owe all my friends who joined this club before I did the biggest apology for not being a better friend before now.

For death itself. Teacher. Truth-teller. Mysterious friend. I am ready for you when you are ready for me.


LET’S KEEP TALKING
Seeing my mom through from diagnosis to death changed me irrevocably. I am not who I was. I hope never to be finished with this death and life conversation.

I imagine my response to the fundamental conundrum of mortality will change as I get closer to my own, as I witness those I know and don’t know die around me, and as our culture wrestles with death and dying in light of our increased longevity and (at least in the First World) our obsession with the quantified life and personal development.

It is true that the conversation around dying is starting to become part of the public discourse. Books like Christopher Hitchens’s Mortality and Atul Gawande’s Being Mortal are but two examples of this cultural shift.

Other efforts towards an honest conversation about death that come quickly to mind are The Zen Hospice Project and Death Over Dinner.

And yet, I still meet people who do not know what to do or say in the face of death. They don’t know how to show up for their family or friends. They hide behind empty language or say nothing at all, avoiding the topic altogether. If I had a nickel for every person who said “I didn’t know what to say to you when your mom died,” I’d be donating my riches to every hospice within spitting distance.

What makes me sad is that deep down, I know they’re desperate to do the right thing but they don’t know how. They’ve told me as much. It’s as if they need a script, a prompt, or someone to feed them a few lines. An instruction manual for death and loss would be helpful, as has been suggested by many writers and thinkers on this topic.

For me, music has been my way in to almost every experience in life, including ones where I didn’t know what to do or say.

When my mom got sick, I did know what to do, but as I cared for her over the years, I didn’t always know what to say. That part was always so tricky. These songs show me struggling to say something meaningful about a supremely shitty situation. Writing these songs helped me figure out what hurt and what helped. “Death Come Slow” is a perfect example of this. It was the first song I wrote after she got cancer: “Death come slow / death come shy / death don’t you look her in the eye.” The lyrics and music were my way of making sense of an experience that was and still is fundamentally unfathomable.

Here, in the aftermath of Mom’s death, two years of grieving under my belt, I see how this music functions as a kind of handbook for dying. I didn’t set out to write a handbook. I didn’t have time for that. But that’s what these songs are -- a way through death and grief.

My hope is that someone will hear one of these songs and use it to say something they are longing to say. Maybe they’ll send it to someone they know who’s going through treatment for cancer or another equally as life-shattering disease. Perhaps, they’ll send a song to a friend who’s lost a loved one. The song “Bright Nowhere” would do. It’s my attempt at an answer to the question “Where do think you go when you die?” “All you have left is a little light and air / when she takes off for the bright nowhere.” I borrow that phrase “bright nowhere” from a beautiful elegy by Seamus Heaney called “Clearances.”

How do we want to live all the moments of our lives, not just the beginning or middle moments? Sometimes we just need something small -- a word, a phrase, a bit of melody married to a lyric -- to release the catch on our hearts and minds. The rest of the words we’ve been longing to say will come.