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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Final drafts

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Lenten Roses. Photo by Anne Cassity.

“None of this was supposed to happen.”  Nina Riggs

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Nina Riggs

Modern Love has long been my favorite weekly read in The New York Times. For the uninitiated, it is a series of essays submitted by readers that focus on all aspects of contemporary relationships. Some of them are funny but most of them crack my heart wide open and a few of them simply gut me.

Such was the case with two essays written by Nina Riggs and Amy Krouse Rosenthal. Nina’s piece appeared in September of last year and Amy’s was published just a few weeks ago. I don’t know if these two writers knew each other – Nina lived in Greensboro, NC and Amy was a longtime resident of Chicago. I do know that their lives are inextricably connected by the most morbid of coincidences.

You see, Amy died on Monday from ovarian cancer – the same day as Nina’s memorial service. Nina died on February 26th, after a two-year Armageddon with breast cancer.

I never met either of these women yet I am haunted by their deaths. Amy was 51 and Nina was 39.

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Amy Krouse Rosenthal

“So many plans instantly went poof.” ~ Amy Krouse Rosenthal

I have reread both of their Modern Love columns several times in the last couple of days and beyond the unfathomable reality of dying at such hideously young ages, I am fixated on how much these two women would have liked each other.

They are both mothers – and I am deliberate in using that tense. My own mother has been gone for almost 15 years now but I am still aware of her mothering. I am still a daughter and I still need to be mothered. No, I can’t take her to brunch on Mother’s Day but I do strongly feel her presence in my life.

I desperately hope that the children Nina and Amy leave behind feel that, too. Nina has two boys – ages 10 and 7. Amy has three children – 20, 22 and 24 years old. I can only quote my wise friend Jennifer once again, “Cancer is an asshole.”

These children still have their fathers – who from the cheap seats appear to be kind and good men who share the blessing of marrying well. They are also well-loved by their wives.

“I have been married to the most extraordinary man for 26 years. I was planning on at least another 26 together.” ~ Amy

Amy’s Modern Love essay was about, of all things, trying to find a new wife for her husband. It was, in essence, one last love letter to her husband written with humor and grace and a blindingly bright love. And it pretty much broke the internet.

Oh, and she finished the essay on Valentine’s Day. It was published 10 days before she died. I bet even Amy would think that plot was overwritten. Real life is like that I guess.

“Within 10 minutes of meeting John at a summer job at 21, I had already mentally signed on for life – although I waited at least a week to tell him that.” ~ Nina

Nina’s essay was about a couch – if a couch was a metaphor for life and family and home. She is desperately searching online for the perfect couch for her family – “An expansive bench that fits all of us. Something that will hold us through everything that lies ahead – the loving, collapsing and nuzzling. The dying, the grieving.”

I don’t know if she ever found her couch but she certainly found her voice – a voice brimming with emotional clarity and lyrical humor as she lived until she died. Her memoir, The Bright Hour, will be published posthumously in June by Simon & Schuster.

I know, I know. If it were a movie you’d say it was too over the top.

I pre-ordered Nina’s book on Amazon the day I learned that she had entered Hospice care. It felt like the only hopeful thing to do.

I’m grateful that Nina and Amy’s words are just a click away for eternity for it is only through their writing that I know them.

And I want more.

This was one of Nina’s final posts on Facebook – a few days before she died:

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.

Her post reads like a great short story to me – or better yet, a prayer for the living.

May it be so.

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Permanent ink

August 26, 2016

I am writing this somewhere over Colorado. The Flight Tracker screen shows that we will arrive at John Wayne Airport in 2 hr. 06 min. I can’t wait to see my sister who will pick me and my wife and my best friend from college up for a long weekend in Newport Beach – her home since January.

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Birthday party of four. (Photos by Addison Ore)

My calendar tells me that in 72 hours I will arrive at 60. I thought I was okay about it. Okay as in not freaked out or depressed but in the days leading up to the Big Six-Oh, I have found myself tearing up easily. Not necessarily sad, just emotionally tender.

I’ve been thinking about my parents a lot, so maybe that has something do with it. My father died at 79 and my mother died at 70. I’m really not being morbid, but I’ve always had it in my head that I, too, would die at 70. It’s probably the writer in me – what a gut wrenching story that would make, right? I think 70 used to seem so very far away but now that it’s on my radar, I am thinking that I really don’t want to write that story.

The absence of my parents has been a strong presence in my life for the past 14 years. It’s a bit like the undertow of the ocean. Sometimes I’m barely aware of it, other times I’m almost pulled under by it.

I suppose it’s rather cliché to ponder one’s own mortality at 60, but that is where I find myself in Seat 12E today. Lately, I’ve been looking at my life like one of those stupid slideshows that Facebook creates (why?) from time to time. I see quick images from my past – my high school graduation, a family vacation in Sandbridge, my first (really dumpy) apartment in Annandale, VA. I see joyous things – the births of my niece and nephew – and hard things – the breakup of my longtime relationship. And I see my failures much more clearly than my triumphs.

I also hear random memories – the sound of people playing touch football outside my apartment window on a brilliant fall Sunday afternoon while I float in and out of a nap resting by my partner. I can hear the distant humming of a small plane in flight. I am probably 23 or so. I can smell that day – burning leaves in the distance. I can taste that day – a honey crisp apple.

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Memories of my moment.

I thought about that day the first time I read The Hours by Michael Cunningham. There is a passage in that brilliant novel that always stands me still. Clarissa, one of the central characters, is preparing for a dinner party in honor of her dearest friend and former lover Richard, who is dying from AIDS. She recalls a day almost 30 year ago when she and Richard were together.

I remember one morning getting up at dawn. There was such a sense of possibility. You know that feeling. And I…I remember thinking to myself: So this is the beginning of happiness, this is where it starts. And of course there will always be more… never occurred to me it wasn’t the beginning. It was happiness. It was the moment, right then.” the-hours-book

That afternoon was my moment.

I’ve been blessed with an abundance of moments since then but that was the crystalline pure singular moment before I knew of death and grief and my own failings.

I just finished watching Everything is Copy in flight, a documentary about the writer and filmmaker Nora Ephron, written and directed by her son, Jacob Bernstein. It reveals a total woman – good, bad and wickedly funny. The title comes from something Ephron’s mother, a Hollywood screenwriter, always said to her kids growing up – “Everything is copy,” – meaning that everything that happens to you is fair game to write about.

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The late great Nora Ephron.

Ironically, the one thing that Ephron, who died in 2012, never wrote about was her illness – a serious blood disease that was diagnosed in 2006 and later developed into leukemia. Many of her closest friends were shocked to learn that she had been sick for so long. Ephron had spent her career writing about her life – her parents, her divorces and even her breasts.

In the documentary, her son reflects on why his mother didn’t share something so essential.

I think at the end of my mom’s life, she believed that not everything is copy – that the things you want to keep are not copy. That the people you love are not copy. That what is copy is the stuff you’ve lost, the stuff you’re willing to give away – the things that have been taken from you. She saw everything as copy as a means of controlling the story. Once she became ill, the way to control the story was to make it not exist. 

I am fascinated that one of the most prolific and successful memoirists of our time was able to conceal such an intimate part of her life until her death. Ephron was oh so very clever, though, and in some ways wrote her own eulogy at the end of her final novel I Remember Nothing, published two years before her death, which included a list of What I Won’t Miss and What I Will Miss.

You can read both lists here but it is the list of things she will miss that made me tear up on my flight. It’s just a short inventory but it is so lyrically beautiful in its simplicity. It includes, of course, her husband and her sons but also butter and Paris. It includes taking a bath and one for the table. And pie.

Her list made me think of my own list. I’m not copying but I’m down with Paris and pie, too. And scrawling my list on my ever handy writing pad was a timely exercise in gratitude.

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Musings from 40,000 feet.

What I Will Miss

Joy

My sister

Rain

Thunderstorms

Kittens

The gloaming

Wine

Looking at the wine list

Pouring my wife another glass of wine

Dolphins

Lightning bugs

Frank Sinatra

Newsprint on my fingers from the Sunday NY Times

Independent films in tiny theaters

Communion

Pens

Pencils

Paper

Postcards

The sound of a foghorn

The sound of good friends laughing at the dinner table

The sound of crunching leaves on a fall walk

College football

Holy Week

Palm trees

Watching my wife cut up vegetables

Pizza

Sushi

Kathy Ausen’s chocolate chip cookies

Speaking bad Italian in Italy

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Postscript: I made it to Newport Beach and I made it to 60. So far, so good. I’ve blown out a lot of candles on a lot of birthday desserts lately and my wish has been consistent. In fact, my wish has become my mantra for this next chapter of my life. It’s short and it’s sweet and I want to keep it in front of me every day along the way. So I gave myself a little birthday present – a tattoo – as a reminder.

Nora Ephron’s mother was right – everything is copy. And I don’t want to miss a moment.

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What could go wrong?

 

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Sparkly wishes, sparkly days.

 

 

 

 

 

 

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.

 

 

 

 

 

It’s in the cards

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My sister has moved 22 times as an adult. And no, she’s not in the armed services, the French Foreign Legion or the witness protection program.

I guess you could say that she’s a rolling stone.

She’s lived in Virginia, North Carolina, Georgia (twice), California, Maryland (twice),  Ohio (twice) and is now back in California.

And she’s been through many acquisitions and purges in her 35 years of moving  but there has been one item that has always made the cut – a box filled with every note, letter and card I’ve ever sent her starting when she went to camp when she was 12.

The box is not organized in any way, shape or form and if you knew my sister at all, you would laugh at the very idea of her organizing such a thing.

I pulled out the box while I was visiting her this week and it was a little like that weeper movie, Somewhere in Time, where Christopher Reeve is swept back in time by looking at an old painting. Years and years documented by Hallmark.

My sister is seven years younger than me and she was only 38 when we lost both of our parents. That’s terribly young to lose your rudders and the loss has certainly informed much of her life since then.

As the older sister I was always somewhat of an authority figure (okay, you can say bossy), even if she rarely took my advice.  When our parents died in 2002, I became sister and mother, a dual role I desperately want to get right.

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This is the essence of my sister.

Rummaging through the box, I have made several observations:

  1. My handwriting over the years has declined from marginally legible to Straight Outta Serial Killer. I wonder if it’s too late for med school.
  2. I pick out the best cards. I knew which ones were from me before even opening them. And many of them made me smile – again.
  3. Almost every note to my sister is a form of a pep talk – only the subject matter is different depending on the decade – boyfriends, jobs and diets, always diets.
  4. Postage has really gone up a lot in 40 years.

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    Those “Forever” stamps are looking like a good investment.

I pulled out a letter from 1981 that I had written my sister – on yellow legal pad paper, my stationary of choice for many years. She was living in Lynchburg, VA with my aunt and uncle and taking general studies courses at the local community college. Her grades in high school were not stellar and she was feeling like a loser while many of her friends were enrolled at various colleges and universities.

I was trying to make her feel good about herself and her future and my letter made me laugh out loud when I got to this part: Don’t look back – the past is nothing but a bunch of Kodak snapshots dumped in a box in the closet.

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Sisters, circa 1974.

How prophetic I was!

I don’t know if my letter helped her but it all worked out well as she went on to study at The University of Virginia and is now managing several breast cancer centers in Southern California.

But it’s the cards that really get to me. Almost all of them have a picture of two young girls on the front and that is the image that has sustained me over the years – the two of us, together – usually laughing and usually up to some shenanigans.

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The inscription on this cards says, “I’m so glad I always have you to lean on.”

It is a rare and precious thing to be deeply known by another human being – especially one that you are related to and my sister knows me in all manner of ways. That’s why she had a case of seltzer water (orange) chilling for me upon my arrival and vases of fresh-cut hydrangeas (my fave) throughout the condo.

And she knows my heart and my pain and she has suffered greatly these past few months since I lost my job – a job that was more like a calling to me. She was 3,000 miles and three time zones away as we weathered this great storm together. And yet, she walked every step of this ordeal with me.

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Some of it was good. Some of it wasn’t. But through thick and thin, they stayed close, and they were sure they always would. And this made the world good again.

That’s why I was so grateful to have the opportunity to share a special dinner with her on my first night here. I sat across from her at the table and looked into her sweet face and told her that in my entire life, I’ve never felt another person be so present to my pain.

She cried. I cried. I think the waiter might have even cried.

We’ve had so much fun together this week and “no fights” as she remarked the other night, which initiated a hilarious “greatest hits” recap of some of our most famous disagreements.

My favorite story is from years ago. I was living in Greensboro at the time and she was in Kensington, MD. We got into a heated argument about, well, who knows, and I got so mad that I threw the phone, the portable phone mind you, against the wall and it shattered into pieces. She called back a minute or two later and my partner answered the phone. My sister said very earnestly, “I think Addison and I got disconnected.”

I’m giggling now thinking about how clueless she was to my rage.

Fortunately, most of our disconnections have been few and far between over the years. Nothing a call or, yes, a card couldn’t repair, but I’ll tell you one thing, we’re going to need a bigger box.

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My sister, my lifeline.