Last words

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Image by PorterBriggs.com.

That was grief, I say to myself. It makes us dark and a little crazy.”

Nina Riggs, The Bright Hour

I cried when I finished reading The Bright Hour. I suppose a lot of folks will, too. I mean, come on, a beautiful and vibrant mother of two dying from breast cancer at 39 is the stuff Lifetime tear-jerkers are made of. Oh, and no spoiler alert needed here – the full title of Riggs’ book is The Bright Hour: A Memoir of Living and Dying.

Before you even turn over the cover you know how this story ends. That’s not why I cried. I cried because there would be no more beautiful words to read.

Nina Riggs was one hell of a writer.

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Nina smiles.  Photo courtesy of John Duberstein.

I first read her words in a Modern Love column in the New York Times last September. Her piece was entitled When a Couch is More Than a Couch and she stood me still with her words – her luminescent and lyrical words – as she wrote about her obsessive search for the perfect living room couch while propped up in her bed weak from the venom of metastatic breast cancer.

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How a couch became a book. Illustration by Brian Rea.

She writes of being able to let go of a lot of things – like plans – but she cannot figure out how to let go of mothering her two young boys.

“So maybe I don’t try to figure it out. Maybe I just aim to get the couch right: strong bones, high-quality leather, something earthy and animal and real. A surface that knows something of what it was to be alive, that warms to our touch and cools in our absence.”

I read many parts of this piece and her book out loud – just to myself – so that I could hear the words – lovely and melancholy at the same time – like wind chimes in the distance on a breezy summer night. You are soothed but a little unsettled by the storm you sense is coming. You linger in the sound, savoring a moment that has already passed.

It’s funny. I genuinely loathe summer but something about Nina’s writing reminded me of the best parts of it. If you could capture her writing in a photograph – an old school photograph taken with a real camera like my father’s Argus 35 mm, I think the image revealed would be a mason jar filled with fireflies. The darkroom illuminated by her prose.

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Capturing Nina.

One of my favorite passages in The Bright Hour – and there are many – my copy is drenched in yellow highlighting – is the chapter entitled What Death Is. Nina writes about her father taking her youngest son, Benny, on a ride on his motorcycle. She has decidedly mixed emotions about allowing this saying “this is objectively not a prudent idea – or possibly even legal one. It’s something else completely: perilous and fantastic.”

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My copy glows in the dark.

Her father tells her about a time that he could tell Benny was falling asleep on the back of the bike – he could feel his grip slacken around his waist. He gently jostled his grandson and told him that he had to stay awake to hold on. Benny says, “But it sure felt good.”

“I think of this feeling sometimes – and I can imagine that sort of letting go: warm, dangerous, seductive. What if this is what death is: The engine beneath you steady; those that hold you strong; the sun warm?

I think maybe it wouldn’t be so bad to fall into that, to loosen the grip at the waist, let gravity and fate take over – like a thought so good you can’t stop having it.”

Wind chimes…

There’s also a brilliant tiny chapter, Say Please, that will make you never hear that word quite the same way again. She makes a list for her boys about why “please” is so important:

“Because the s in please is the sweetest sound, like steam rising after a summer shower, like a baby whispering in his bed.

Because you are human, and it is your nature to ask for more.

Because want, need – those unlit cul-de-sacs – are too perilous unadorned.”

Those sentences remind me of fresh peaches. Sweet and juicy, their stickiness hard to shake.

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I want a bushel of Nina’s writing.

Nina is never precious with her words and has a wicked good sense of humor, no doubt reflective of her New England roots and I laughed out loud in several places such as her description of a “twentysomething-year-old grief counselor with a handshake like a silk scarf.” You know this handshake. Gross.

Nina’s mother, Jan, died 18 months before her daughter after living with multiple myeloma, a blood cancer, for several years. She is in the shadows of almost every page of The Bright Hour – keeping watch over her daughter’s pilgrimage. Having lost my own mother an unfathomable 15 years ago, I had to remind myself to breathe at some of the passages Nina shares about her mom – like when her mother, after a failed clinical trial, declares that she does not want to do any more treatment.

“My mom: my map, my Sistine Chapel, my Lonely Planet, my beautiful ruin, my volcano.”

It’s hard to imagine how Nina was able to complete her memoir while living and dying and all the noisy in-between. I know she was inspired by the philosopher Michel de Montaigne – she references his writing several times in the book – but maybe she also heard the muse of the Swiss philosopher, Amiel, who advised to “Work while you still have the light.”

The Bright Hour is saturated in light and a reverent clarity that perhaps only limited time can give.

I never met Nina and I’ve felt a little like a cyberstalker since I read that Modern Love piece. I Googled her to find everything she had ever written and started following her on Twitter.

That’s how I knew she had entered Hospice care in late February. Her final tweet sounds like a Patty Griffin ballad – a little sad, a little hopeful. The kind of song that makes you want to have a slow beer with a good friend.

Dispatch from Hospice: they have morphine, open doors, a Cook Out down the road, allow dogs. John’s playing Springsteen. It’s gonna be ok.

Nina died before the sun came up on February 26th and this week, The Bright Hour reached Number 14 on the New York Time’s Best Sellers list and was selected as an Editors’ Choice.

I’m not sure even Nina would have the words for all this surreality but if she did you can bet that they would surely slay me.

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Go Nina! Photo courtesy of Marysue Rucci.

 

 

 

 

 

 

 

 

 

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When we shall leave this place

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May 16, 1961 – January 10, 2016

My longtime veterinarian has a theory about pet’s names that she shared with me years ago. I was in the waiting area of her office with my terrified cat when the next patient, a ginormous St. Bernard, was summoned by the vet tech with a cheerful, “Come on, Tiny.”

I laughed about it with the vet later and she said, “You know, animals have a way of growing into their names and they just seem to fit.” I think she’s right and I think it works that way for some people, too.

It’s certainly the case with my wife Joy and it was most certainly true for my friend, Kristel Sweet Wooten. She was simply one of the sweetest souls I have ever known and she died in January at the shattering age of 54.

I’ve avoided writing about her death until now for several reasons but the most honest one is that it just cut too close to home for me. You see, Kristel and her wife Mary were married a few months before Joy and me in the spring of 2014. Like us, they went to Washington, DC to be legally wed and then held a service at their home church in Raleigh, North Carolina a few weeks later.

We could have never imagined that less than two years later, we would be sitting in that same church, once again shedding tears, only this time not the bouncy happy ones but the heavy very wet ones that burn.

I still see those two days – their wedding day and Kristel’s memorial – together, like two sides of a coin. Heads – a long and happy marriage. Tails – a slow but certain fade to darkness.

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dance on air  Fig. to be very happy; to be euphoric enough as to dance on air. Photo courtesy of Justin Cook Documentary Weddings.

I can picture Mary and Kristel dancing together at the entrance to the sanctuary of their church as guests were arriving on that sunny but brisk afternoon in late March.

It was a little unorthodox for sure, but it was so them. And God, they looked so happy. I’m sure I’ll never hear the term “dancing on air” again without seeing those two on that day.

They made the promises most couples make on their wedding day, not knowing that many of them would soon be tested. Kristel was diagnosed with Stage IV cervical cancer almost exactly a year later.

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Maybe it’s good that we never know what’s next.

Stage IV cancer will pretty much coldcock any conversation to a halt.

They shared the news on Facebook in a very straightforward manner and then Kristel set up an on-line journal that folks could sign up to follow. Here’s where I need to tell you that Kristel was also one of the funniest people I have ever met. She had a very southern accent (think Renee Zellweger in Cold Mountain) which made everything she said even funnier. So I was not surprised when she named her on-line site, “Go to You Glow” – a reference to her first IV treatments to flush out the toxins that were promoting the growth of her cancer.

She went through several crushing rounds of chemotherapy and yet her posts remained upbeat and laced with gratitude, another Kristel trait. She even managed to find the upside to losing her hair in her post on September 2, 2015.

I am getting used to being bald and it feels good to rub my bald head. It’s surprising how good rain feels on my scalp and the sunlight and a cool breeze. 

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Kristel made bald beautiful and fun.

In early September of last year, I made a post about a dear friend from grade school who had just been diagnosed with tongue cancer and was beginning a brutal regimen of chemotherapy and radiation.

Kristel was one of the very first folks I heard from after that post. She private messaged me on Facebook to tell me that I, or my friend, could contact her if she could help in any way. She said, “I won’t play counselor or physician. I could be a confidential friend for what to prepare for. Just an offer, because whoever you love, I love.”

I read her message at my desk that morning and crumbled. I was astonished and humbled by her enormous capacity for empathy in the face of her own mortality.

She went on to tell me the things she wished someone had told her before she began her treatments – like chemo makes you feel like your insides are being stripped out.

And then she did something that I will never forget. She asked me for my friend’s address so that she could send her a hand colored postcard with a word of hope and strength.

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Kristel creating.

I still don’t have the words for this.

I just finished reading When Breath Becomes Air, a devastatingly exquisite memoir by Paul Kalanithi, a neurosurgeon who was diagnosed with Stage IV lung cancer at the age of 36. He died last year before his manuscript was completed and his discerning words have made me think of Kristel a lot. He writes, “I would have to learn to live in a different way, seeing death as an imposing itinerant visitor but knowing that even if I’m dying, until I actually die, I am still living.”

This is how Kristel died – living.

She rode her bike when she could, she went fishing with her family and she started a card “ministry” at her church. And she and Mary went to Oregon last fall for a grand adventure.

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Mary (left) and Kristel, sweethearts and sweet hearts.

She kept living.

I could or would beat myself up or be miserable about the things I can’t do or the mistakes I’ve made or what I can’t control. Instead, I think I’ll pat myself on the back for doing my best to get over the hurdles and for having a decent attitude. I can’t control what life throws at me but I can control my reaction. August 2, 2015 

Her posts became more infrequent and then there was a menacing silence on her site. Finally, Mary posted on January 5th and shared that Kristel was resting comfortably at home and getting hospice care. The end was near and she died peacefully surrounded by family and friends a few days later.

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Mary’s status update on the day of Kristel’s memorial service.

Kristel’s memorial service was as wonderfully unorthodox as her wedding. There were plenty of tears but it was a genuine and joyful celebration of life. Interspersed throughout the service were Kristel’s own words taken from her journal posts, now a liturgy of hope and gratitude.

The service concluded with a wonderful responsive benediction crafted from her entry of June 14th.

Leader: As you go out in the world today, remember to smile.

People: Try to stay out of the heat, be thankful for the air conditioning.

Leader: Say at least 3 nice things to others, say at least 3 nice things to Yourself.

People: Be kind to your partner/spouse.

Leader: Drink lots of water.

People: Hug your children.

Leader: Hug your friends and parents.

People: And be aware of wonder.

Leader: My love to you all. 

We could still hear the refrain of the last hymn, Sweet, Sweet Spirit, as we slowly made our way out of the church:

There’s a sweet, sweet Spirit in this place.

Sweet, indeed.

Epilogue: My friend from grade school had a PET scan last week revealing the acronym all cancer patients pray for – NED – no evidence of disease. I can see Kristel smiling at this news.

 

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What’s in a name? Sweet Kristel.

 

 

 

 

 

Invincible summer

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January was a rough month for me. I lost my job and two dear friends.

While I feel certain I’ll find another job, I know that Kristel and Regina can never be replaced. As my dear veterinarian said to me years ago when I was agonizing over the decision to put down my 19 year old cat, “Death is so final.”

I’ve never forgotten her stark wisdom.

I’ve been writing about my friends for several weeks – in my head – and now it’s time to put the pen to it. I suppose I’ve resisted doing so because it would make their absence on earth truly final for me – permanent ink if you will.

Regina died on New Year’s Day. She had a great sense of humor so I’m sure she would have appreciated that irony.

She was 66 years old.

My wife and I attended a New Year’s Eve dinner the night before her death – a treasured tradition shared with several wonderful women who have known Regina and her wife, Miki, for years. Before we sat down to eat, one of our hosts offered a beautiful prayer for our missing friends. It was a muted evening as celebrations go but very comforting in its intimacy.

We all laughed a lot – that knowing laughter steeped in the history of shared experiences. We wiped away tears, too, softly. I think we all knew that were already sitting Shiva for our friend.

Regina was diagnosed with peritoneal cancer about a year and a half ago. It is a rare form of cancer that started benignly – she couldn’t get comfortable at night in “her” chair when she and Miki were watching television draped in their dogs. She had some nagging discomfort that eventually worsened and led to her diagnosis.

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Miki, left, and Regina and their children.

And then began the barrage of several rounds of chemotherapy. Miki started posting on the website CaringBridge, a personal health journal, soon after Regina’s diagnosis and she was remarkably disciplined about it – writing often and sharing not only clinical updates on Regina’s condition but also her personal reflections along the way.

Regina was a private person and even though she would have never personally posted, she apparently really enjoyed hearing Miki share all of the encouraging comments from friends at the end of those interminable treatment days.

And Miki’s posts were staggeringly beautiful. She is a former journalist and law professor, so I was not at all surprised by the quality of her writing but I was deeply moved by its intimacy, particularly as Regina was dying.

Regina responded well to the brutal regimen and was declared in remission by early last summer. She was always a great athlete and was elated to return to the other two great loves of her life – softball and golf. The girl of summer was in her element.

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Miki and Regina in the Florida Everglades. They were homebodies who traveled the world.

But winter came with no mercy and in early December, an MRI revealed widespread cancer throughout all portions of her brain. She declined rapidly and was transferred from the hospital to hospice.

No one knows for sure, but it seems there is little time left. The most important thing now is her comfort. I’m sorry to bear this news. It has been a very hard day. The worst day, really, ever. 12/20/16 ~ Miki’s journal entry

Miki and Regina were together for over two decades and married in New York a couple of years ago. In an almost lyrical post, Miki revealed that they weren’t really that engaged in the same-sex marriage movement – they had been together for so long that they didn’t think they needed that legal validation. But Regina’s impending death made her realize that it did matter.

It gives me comfort that we are married. It means something. It is big. 12/26/15 

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Miki and Regina on their wedding day. Newlyweds after more than 20 years together.

My wife and I went to visit Regina a few days after Christmas. I’m always astonished by the quiet – the deafeningly reverent silence in the halls of a hospice. We slipped gently into her room and found Miki on her iPad beside Regina’s bed. Regina looked remarkably vibrant and very tan for December. That made me smile.

She did not speak but she raised her slender, weak arm in recognition and smiled. I talked to her a lot – mostly about sports and she would nod her head slightly. I’m not at all a medical person but I am comfortable with the dying. This was a gift to me when my parents both died in 2002. I wasn’t afraid and I wanted to be very present to their final journey.

If you have not sat with death you may not understand this, but I have found that leaning into it can be powerfully life affirming. And I think we owe this to the dying.

We knew that this would be the last time that we saw Regina and we both kissed her on the cheek and told her that we loved her. There was nothing left to say.

There is one final story about Regina I need to convey. During our happy life together, Regina considered it her sacred duty to take care of me. I have had my share (okay more than my share) of serious health problems in my life. Regina always took the most wonderful care of me and, I think really loved doing so. As I sat with her, it was obvious that the end was near. I asked the nurse whether she could tell us anything about the time frames, and she, of course, said she could not but that she believed through her experience and knowledge that people at the very end of their lives seemed to choose their moment to die. I immediately knew what I had to do. I whispered to her, and I held my face against hers for moments and told her everything was okay and that I was going to go home.  Ten minutes after I got home, Beverly (a dear friend) called to say she had died. Though it could be wildly coincidental, I believe that, even in dying, Regina took care of me — she did not want me to see her go. 1/3/16 

Amen…

I thought that I would also write about my friend, Kristel, but it is just too much for one post and I think that spring will be the perfect season to share about her bright and hopeful spirit.

Regina thrived in the long, hot days of summer and as winter wanes, I picture her in her golf visor, tan and happy, and I recall the words of Albert Camus: “In the midst of winter, I found there was, within me, an invincible summer.”

Game on, sweet friend.

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Regina celebrates a good out.