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.

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.

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.”

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.

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.

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

joy

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.

What could go wrong?

Sparkly wishes, sparkly days.

When we shall leave this place

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.

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.

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.

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.

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.

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 5^th 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.

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 14^th.

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.

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.

This is the essence of my sister.

Rummaging through the box, I have made several observations:

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.
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.
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.
Postage has really gone up a lot in 40 years.
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.

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.

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.

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.

My sister, my lifeline.

The wisdom of beaches

sunset

I’m spending some time with my sister this week in Newport Beach. I booked this trip a day before I was fired in January and I suppose that is fortunate for my sister because otherwise, I may have left my return trip open-ended.

The world just feels so much bigger here – in all manner of ways. I guess the Pacific Ocean has something to do with it. Cue the ocean if you really want some good reflection time.

I find myself thinking less and less of my old life, the one where I was responsible for 17 staff and several hundred clients. I certainly think about many of my beloved colleagues and I’m so grateful that I had a chance to properly mark our time together at a gathering a few weeks ago.

It was a chilly night but we sat outside in a circle around a tall heat lamp in a makeshift cabana. We laughed a lot and we cried a little and we held each other in embraces free of any self-consciousness, the ones where you don’t worry if it’s too long are too tight. It was a remarkably intimate evening and I’m certain that we all savored every minute of it. We know what we shared was special – almost sacred in some ways – and that can never be taken away.

Today, I am more angry than sad. I know that I was treated unfairly and ungraciously. I also know that life is rarely fair and the deaths of two friends in January certainly gave me some sobering perspective on the magnitude of my loss.

I find myself looking forward and while that can be a little scary, it is also terribly exciting. I feel lighter these days, more present.

Yesterday on the beach, metaphors were practically bopping me in the head like a cartoon character.

I get it!

I took a long walk and stopped to watch the waves crashing against the jagged jetty – that’s how I felt for several weeks earlier this year – battered. And later in the day, I saw three children frolicking in the water – the frigid water. They were so impossibly brave – standing there to face the oncoming waves and they squealed with delight as they got smacked back on their heels.

Enough of that.

I want to be brave like them. I want to not be afraid. I want to delight in the unknowing.

I wish this photo had a soundtrack.

Late in the day, my sister and I walked to a perfect perch to view the sunset – the magnificent California sunset. It was brilliant and so quickly vanished. And then there was that exquisite time of every day – the gloaming. The sun is gone but it is not quite yet dark and there is a peace in the air that is almost palpable. My dear friend, Sarah, shared a wonderful song with me by Over the Rhine about this magical time, “Favorite Time of Light.” It goes like this:

It’s our favorite time of light
Just before the day kisses the night
You see the redwing blackbirds fly
The sun’s a big ol’ lazy eye
When they lay me down at last
And this life is finally past
Just remember me this way
And don’t forget to say
It’s our favorite
Our favorite time of light

The gloaming.

I’ve been reading on the beach, too, and yesterday I finished The Great Spring: Writing, Zen, and This Zig-Zag Life by Natalie Goldberg. She has long been one of my favorite authors and I’m fairly certain she wrote this latest book just for me. Of course, that’s what all the truly great writers do – make that connection that the reader so desperately longs for.

Goldberg writes, “The Great Spring includes the Great Failure, the thorough-going reduction to nothing, to loss, disappointment, shame, betrayal. If we can stand sill and attentive in our lives and not run away, even right in the middle of the ruins, we will find fertile ground.”

I’ll be home soon. I have some planting to do.

That’s me, looking forward.

Invincible summer

summer sun

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.

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.

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

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.

Regina celebrates a good out.

Bookends

Two writers. One blog.

death