She’s being followed by a moonshadow

“I’m dying.”

That’s what my dear friend Lynn said when she called me on the last Monday in February. She had just returned home from a visit with her oncologist who had given her the shattering news that her already grim prognosis of three to four months to live had abruptly changed to weeks and that she was being released into hospice care. Her doctor was on point – she died exactly three weeks later, two days before her 68th birthday. What happened in those 21 days in between was one of the most transcendent experiences of my life. Lynn took me to the thin place between this life and the next one and I hope I never get over it.

This is the story of how I got there.

Lynn, Joy and Kathy (Lynn’s wife) on our wedding day in May of 2014.

I became friends with Lynn through marriage – she and my wife Joy were best friends for almost 25 years, so, when I got Joy, I also got Lynn – a way better gift than monogrammed towels. She was diagnosed with ovarian cancer in the spring of 2017 and underwent surgery followed by chemotherapy. She lost her hair and felt like shit. The past six years, she was on the fickle rollercoaster of good scans/bad scans and endured several more rounds of chemo. Fuck cancer. But cancer doesn’t get to steal Lynn’s story – I just needed to give you some context.

Lynn’s Facebook post after she got the dire news in January. She always was a straightshooter.

In January, Lynn’s oncologist told her that her tumors were aggressively growing – even while being blasted by chemo – and Lynn had only a few months to live. I picked her up from her appointment that day and she delivered the news to me straight – no chaser. That was Lynn’s style. I felt like I was in a movie – a bad one – as I grasped for something remotely lucid to utter. I’m sure my knuckles were white on the steering wheel when I heard her say, “I’ve started planning my funeral.” I know that my voice cracked when I replied, “Make it a damn good one.” She nodded her head slowly and said, “Yep. I deserve that.” And she got one on par with Queen Elizabeth, but more or that later.

Kathy and Lynn in happier times -ringing the bell after Lynn’s first round of chemo was completed on the day after Christmas in 2017.

We always assumed that Lynn would eventually die from her cancer and it was a faint undercurrent to our time together, but she kept making plans and we were on board for them. In the last year or so, her bad days far outnumbered her good ones and this past Christmas, Joy wondered out loud if it might be Lynn’s last. I didn’t have to say anything as my dear wife read my dark face. But that’s the thing about hope – it’s the last one to leave the party – and we made the most of our holiday time with her. Looking back on it now, fate was kind to us. Lynn and her wife Kathy spent several hours with us on Christmas Eve when their power went out during a wicked cold snap. Lynn sat bundled up in her puffy coat by the fireplace in our living room for three hours – talking, laughing and drinking hot chocolate. Thank you, Duke Energy.

Christmas seemed so far way when Lynn called Joy on a Saturday morning in mid-February and said she needed to go to the ER – her pain had reached an unbearable level. Kathy couldn’t take her because she had been up all night with a stomach virus. Can you say piling on? Joy was with Lynn for several hours until she was admitted. Tests and scans revealed that the gruesome pain was being caused by the tumors obstructing her kidneys. A few days later in the hospital, Lynn and Kathy were faced with a Sophie’s Choice – either die in a few days from kidney failure or have a nephrostomy – a surgical procedure to make an opening from the outside of the body to drain the urine into tubing attached to a bag. The doctors said this procedure would give Lynn a few more months.

I think Lynn had already made peace with dying, but she had some things she wanted to take care of before she checked out, so she opted for the surgery and returned home a few days later with her “pee purses” – her words – in tow. Lynn had a penchant for accessories and we were grateful, as always, for her indomitable sense of humor. She needed that in spades a few days later when her oncologist delivered the death knell – even with the nephrostomy, her time on earth was down to weeks, not months.

That’s when she called me and we boarded the L-Train to Parts Unknown. It was a group tour with our tribe – Lynn, our tour director, Kathy, our friends Lori and Sue, and our other Lynn. One of the many gifts of being gay, at least in my experience, is creating your own family. This unit doesn’t always preclude your biological family, but this is the family that doesn’t vote against you in every election, the family that loves you unconditionally, the family that knows and loves you for who you are – regardless of pronouns. And I know you don’t have to be gay to have this kind of family, but I do think that my people have perfected the concept. After all, we’ve had centuries of practice.

Lynn and me back in the day when we robbed banks together.

Lynn had one sibling, a sister, who we shall refer to as Cruella for simplicity’s sake, and they were estranged for some time before Lynn’s death. But Lynn’s other family, her heart family, was huge – in fact, about 40 folks formed the processional (Lynn’s idea) behind Kathy at her memorial service. I didn’t know all of my other family members, but I do know that we were all damn proud to be in that number.

When Joy finished work on that woeful Monday night, we went to Lynn’s house, not knowing what to expect. And there she was in her recliner in her sunroom looking like she was ready to host book group. She had a beatific look on her face as she announced, “I’ve decided that I want to die on the same day as Jimmy Carter, so we can hold hands and jump together.” We didn’t see that coming (understatement). And that was pretty much every day until she died – one astonishing conversation after another. Oh, and President Carter, she’s waiting for you.

There were joyful surprises along the way, too. Kathy’s niece Dani and her wife Cat flew in from Iowa the very next day to spend time with Lynn and help with 101 things. I had never met them but was immediately smitten when I picked them up at the airport. They are in their late 30’s – lovely, bright and brimming with possibilities. I soon nicknamed them “the kittens” because they were so cute, sweet, and far removed from sickness and death. We all just wanted to pet them. They stayed for ten days with the promise to return for Lynn’s memorial service. And they did.

The Kittens – Cat (yes, her real name) and Dani in front of Lynn’s favorite tree.

Lynn continued to lean into her death, giving us the glorious gift of celebrating her life while she was still with us. And boy, did we. The first Saturday in March, we held a surprise drive-by parade for Lynn. We had originally scheduled it for two weeks later – right before her birthday – but we were keenly aware that time was not on our side. We weren’t sure how many folks would be able to come on such short notice so we were gobsmacked when about 40 enthusiastic friends turned out with festive decorations and signs. There were even leprechauns! It was an unusually warm day for early March and a camp chair at the edge of her yard served as Lynn’s review stand.

No one was going to rain on Lynn Parsley’s parade.

Everyone blew their horns and cheered – Kathy had prepared the neighbors on their cul-de-sac for the shenanigans. Each car stopped when it reached Lynn and everyone got out and hugged her. Most of them cried, but Lynn never did. She held their hands as they stooped down to her level and she looked into their eyes, and said things like, “I’ll see you on the other side.” Later that evening, Kathy told us that Lynn had been reflecting on the day and said, “I’m already in heaven.”

Our tribe has a monthly supper club, only we call it Cabana Night. That was my idea because the first one actually took place in a cabana. It’s the highlight of every month and Lori and Sue host and give everyone an assignment. And there’s always a theme. Always. Sometimes, there are even costumes. We’ve had almost 60 by now and we knew we had to give Lynn a final one. Lori and Sue had been out of town for a week when I informed them that they would be hosting a dinner party on the evening after the parade. I’m just that kind of friend. I broke the news to them on the phone while driving and by the time I got to their house – about a 15-minute drive – Sue had already selected a theme – Campfire Girls – and the e-vites went out within the hour. Never doubt what a few committed lesbians can accomplish on short notice. I think Margaret Mead said that.

We didn’t have s’mores, but we went through three boxes of Girl Scout cookies.

See: Eating your feelings.

Parade day had been a lot for all of us – most especially Lynn. She was feeling nauseous from her pain meds when she arrived for dinner and sat in Kathy’s car for a long time with her eyes closed. None of us dared to say it out loud, but I’m fairly certain we were all thinking the same thing –  what an idyllic way that would be for Lynn to depart this earthly life after such a glorious day. She rallied and made it inside to the couch where she stayed for the duration. We took turns sitting with her during dinner and when it was my shift, she asked me if I would give the eulogy at her memorial service. Gulp. I told her it would be the honor of my life.

My dear wife had been terrified that Lynn was going to ask her to do it because she knew she would never have the composure to get through it. Lynn laughed when Joy confessed her fear and assured her that she would never put her best friend through that. A visibly relieved Joy told Lynn she thought she might ask Jack, her male best friend, and Lynn laughed again and said, “Are you kidding? He cries more than you.” I’ll tell you this – you may not choose Joy or Jack to give your eulogy, but you couldn’t make finer selections for best friends. Lynn knew that and I like to think she knew that I could deliver the eulogy she deserved.

Lynn in her happy place – smack dab in the middle of her tribe.
Photo: Back row – left to right: Lori, Joy, Kathy, Lynn and Sue. Front row – Cat, Dani and our other Lynn. Big head: Me.

She was only able to eat a deviled egg that night, but she smiled a lot. We all did, especially when we toasted her. We had decided prior to dinner that every toast that evening would be the same – Lynn Parsley Forever! And we were ridiculously pleased with ourselves when we added the Wakanda hand signal and crossed our arms over our chests each time we raised our glasses. That toast may be the only one we ever need.

Lynn Parsley Forever!
We gave Lynn the Wonder Woman accessories before her surgery in June of 2017.
I think she liked them.

Kathy and Lynn’s sunroom was busier than a Trailways bus station during Lynn’s last few weeks. She had visitors day and night – friends from third grade, sorority sisters, half of Ardmore – the beautiful neighborhood she lived in for 25 years. Kathy was the traffic cop and would gently try and steer folks out who were staying too long. Only one snag – Kathy is Norwegian, she’s terminally polite and gracious, and bouncer is just not a good fit for her. Keep in mind that Lynn was in great pain – in spite of heavy-duty narcotics – during a lot of this time. She somehow managed in-person goodbyes to her book club, her movie group and her not so small small group which she led for several years. Once again, she left most of them sobbing while she kept smiling.

Lynn selected this photo for her obituary. She was a very witty girl.

There were some lighthearted moments, too. Lynn was a bit of hoarder – not in a nasty way – she just had a lot of stuff and she was determined to give away a lot of it before she died. She was the Imelda Marcos of Skechers shoes – she had over 50 pairs. She liked matching her shoes to her outfit. I mean, who doesn’t? We wore the same size and she was delighted to give me first dibs. One problem – I am married to a minimalist and we live in a small condo with limited closet space. And honestly, I’ve never felt a need for pink shoes. I took a few pairs, but I know I’ll never fill her shoes.

The more smiles change, the more they stay the same. I’d know that sweet one anywhere.

And there was that magical Friday night when the universe conspired to give us one last perfect evening. Lori and Sue had dropped by for a brief visit with Lynn but found her sleeping, so they didn’t stay. Lynn was not at all happy that she had not been awakened to see them. “I’m not dead yet,” she barked to Kathy and the Kittens. Kathy called Lori and Sue – who had just arrived home – and sheepishly asked them to come back. And, of course, they did. Meanwhile, Joy and I had gone out for a bite to eat for the first time in weeks and as we were finishing dinner, we got a text from Lynn, which simply said, “Come over if you want to.” We practically ran to our car. And when we walked into the sunroom, there was Lynn holding court in her recliner – not looking at all like someone who was going to die in 10 days. Her pain was stable and she looked like, well, Lynn. And then she directed Kathy to open a special bottle of prosecco – her favorite – that was in the fridge. The party was on and we felt like a giddy pack of unchaperoned 8th graders.

Time stood still that Friday night – or at least we weren’t aware of it. Lynn didn’t feel sick and we didn’t feel sad. Cancer was just an astrological sign and not a serial killer. We were all kittens that night – playful in the moment – no aches, pains, or worries. It was our Make a Wish dream come true and Lynn’s sunroom was our Disneyworld. I took a photo of Lynn that night that I have looked at almost every day since she died. It reminds me to be present in the moment. We all stayed late that night and when I got home, I texted Lynn and thanked her for showing us that sacred and mysterious space between life and death. She texted back, “It’s been a great ride.” I didn’t want the night to be over, but when I finally drifted off to sleep, I knew I was still smiling.

Some people just know how to live.

We texted a lot during those last few weeks and it will be a very long time before I delete those messages. One of the best nights was “watching” the Oscars with her. My wife usually makes it through the first award and heads to bed, so it was so fun to share snarky comments with Lynn throughout the show. She had some good ones, like “Brendan Fraser looks like a young Rodney Dangerfield” and “Is Tilda Swinton a ghost?” but the one below literally made me laugh out loud.

Milk Duds will forever make me smile.
(Lynn’s texts are in the grey background.)

All of us who have had extensive dental work join Lynn in that prayer.

When Lynn had accomplished most of the things on her to do list – financial and legal matters that would make things easier on Kathy – she decided to have her nephrostomy reversed, knowing that would expedite her death. The tubes coming out of her back were terribly uncomfortable and her pain was getting harder to manage. She was ready. Unfortunately, our healthcare system was not and it took a lot of phone calls and navigation to get the greenlight to proceed. Finally, on Wednesday, March 15th, Lynn had the procedure to remove the tubes. I texted her that morning to tell her I was thinking of her. What she texted back has become a mantra for me in the days since her death.

She made us believe it.

Lynn returned home that morning for the beginning of the end. She had originally planned to enter our local hospice as her death drew near – she didn’t want Kathy to have to live with the memory of her dying in their home. Kathy thought she would be okay either way, but “I think that’s what Lynn would have wanted” was a phrase she spoke softly time and again in those last days – when Lynn was no longer conscious. It was such a sweet affirmation of their commitment to each other.

Her pain was increasing each day as her body was shutting down and under the supervision of her hospice in-home team, she was taking more drugs more frequently. The upside was no pain, the downside was fewer periods of clarity. Joy had arranged for a few days off from her work – thinking she would be giving Kathy a break at hospice during Lynn’s last days. We went to her house on a Thursday evening and could see that her descent was beginning. She had a hard time keeping her eyes open and her speech was weak and slurred. Our conversation was spotty when Joy, her voice cracking, asked Lynn if she could see into the next world. Lynn’s eyes grew wide open as she replied, “Oh, I’ve been seeing into it for a while now.” Joy asked her what it looked like. We both leaned in close to Lynn’s face as she answered, “The path is lit up waves.”

The moonglade as seen from Lynn’s condo balcony. “The path is lit up waves.”

Joy and I needed something stronger than prosecco after that revelation. I loved Lynn’s imagery and it seemed almost poetic for her. Her favorite place on earth was her beach condo in Garden City, SC. Her condo is on the fifth floor of a high rise and features a huge balcony that practically hangs over the ocean. You feel like you are on the deck of a grand cruise ship when you are standing on it. Many times, when we were there with her, we would marvel at the moonglade over the ocean and in the weeks since her death, it has comforted me to think of her on that familiar path.

That was the last conversation we had with Lynn. The next morning, Kathy was having difficulty getting Lynn adjusted in her recliner – Lynn was in a stupor from her medication and unable to help her. Lori and Sue happened to drop by at just the right time and it was starkly apparent that this was not a drill – Kathy needed help. Sue was calling me on her phone when Joy arrived at Lynn’s house. The next four days were like that – we were all on the same page, seamlessly working together with one purpose – keep Lynn as comfortable as possible as she made her exit. We never discussed who would spend the night – we all did – or who would do what – we just did it.

This crew is true blue and we were so grateful for all the friends who dropped off food and hugs.

Our vigil became a sacred sleepover of sorts and took on an almost tribal ritual feel. A hospital bed was delivered and placed in the middle of the sunroom – her favorite room in the house. And Lynn remained in that bed with us surrounding her until she died. Her priest came and administered the Last Rites and we all laid hands on her. And then we waited. And waited. And waited some more. Death wants to make sure you’re paying attention.

Time management is an important skill for caregivers.

At night, we slept in increments of 55 minutes. Lynn could no longer swallow her pain meds, so we had to give them to her by dropper every hour. Kathy was the head nurse and Joy was her assistant. We became as proficient as a NASCAR pit crew. One of us would gently hold her head up and another would massage her throat to help the medicine go down. Kathy would set her phone alarm for an hour and the rest of us – sleeping on assorted couches, would pop up to help when it went off. Funny aside – Lynn was a world class napper and strongly believed that every room should have a couch – just in case she felt the need – the need for sleep. She was right – and we played musical couches each night.

The second night, I slept on the couch in the sunroom next to Lynn’s hospital bed. My head was just a few feet from hers and her deep labored breathing was the only sound in the entire house. It felt like being in the passenger seat when I was a kid – long before car seats – curious about where my dad might be taking me. Only this time Lynn was driving and I wondered what she might be thinking as I stared into the living room where Lori was sleeping. There is something deeply comforting about sleeping under the same roof with people you dearly love. I didn’t really sleep, but I floated in that space with no fear – just an overwhelming peace that wherever Lynn was going, she would be okay.

My view from the passenger seat. Lynn kept steering us out of the dark.

Early Sunday morning, Lynn began the death rattle – that eerie gurgling sound from the back of the throat that usually signals that death is very near. Or not. After a few hours during which we hung on her every breath, she returned to the deep breathing she had been doing the past few days. She wasn’t leaving just yet. The hospice nurse came that morning and encouraged us to talk to Lynn and tell her that it was okay to go. We all smiled knowingly and we told the nurse that Lynn had been telling us it was okay for her to go for weeks. We decided that Lynn was enjoying being the absolute center of our attention too much to leave just yet.

We were all a bit delirious from sleep deprivation, which can only explain why Joy and I sat down on the couch beside Lynn’s bed and decided to start singing hymns. You might be thinking that was a really lovely thing to do, but you’ve never heard my wife and me sing. It’s not pretty. We know how awful we are and we giggled and declared that if our dreadful crooning didn’t take Lynn out, nothing would. Mercifully, we ran out of hymns and everyone joined us in the sunroom and we began playing a two-hour mashup of Lynn’s Top 100 on our phones. Lynn loved music – all types – and we covered every genre – including songs from marching bands – she played the French horn in her high school band. We played everything from 25 or 6 to 4 to Gershwin’s Rhapsody in Blue and wait for it – Midnight at the Oasis. Lynn’s bucket list trip was Morocco – her planned trip in 2020 was scratched by COVID and she deeply regretted never getting there. We really belted out that one for her and at one point – just for a nanosecond, Lynn seemed to bob her head with the music – absolutely true story and I have fairly reliable witnesses.

DJ Joy in da House!

Send your camel to bed…

A hospice nurse – Nurse Cindy, our favorite – came on Monday morning and after taking Lynn’s vitals, told us that Lynn would probably go soon. Or not. Hospice nurses are awesome, but they’re not the betting type. Nurse Cindy told us what a good job we were doing caring for Lynn – and yes, I’m sure she tells everyone that, but it was a lovely lift to our weary souls that morning. Our other Lynn arrived with goodies and fresh energy and Lori and Sue went home to shower and change. When they returned, Joy and I left to do the same. And, of course, that’s when Lynn took her last breaths. Kathy was napping and Sue shouted at Lori to go wake her – STAT. A few minutes later, Lynn was gone. Death is like that – it keeps you waiting and then it makes an Irish exit.

Sunrise from the sunroom on the day Lynn died.

Lori had called me to tell us to hurry back, but we were too late. I was worried that Joy would be heartbroken that she was not with Lynn at the very end. Here’s the thing about my wife – she is the most grownup person I have ever known. I mean it. She is just so annoyingly mature. I told her I was so sorry we didn’t make it back in time and she said, through her tears, “It’s okay. I’m just so glad Lynn is finally out of pain.” See what I mean? Later, after she had spent some time alone with Lynn by her bed – holding her hand and stroking her hair softly – Joy told me that she thought Lynn had died while she was gone to make it easier on her. I love that thought and I want to be like Joy when I grow up.

We all left Kathy with Lynn in the sunroom while we did the things you have to do when someone dies. I called hospice to let them know and they told me that Nurse Cindy would be over shortly. Someone had the idea of cracking open a bottle of prosecco to toast Lynn off. And wouldn’t you know it, just as Sue was popping the cork and Joy was holding the flutes, in walks Nurse Cindy. She seemed a bit startled. I guess not everyone celebrates the end of a loved one’s life so festively. Well, Lynn Parsley wasn’t everyone, and she would have loved every minute of it. Joy even asked Nurse Cindy if she wanted a little sip. That’s my wife – ever gracious. Nurse Cindy politely declined and began all the paperwork she needed to do before the folks from the funeral home arrived. She was so tender with Lynn, even tearing up a few times. When it came time for her to leave, she said she hoped she had such a devoted group around her when it was her time. I think she really meant it. And then we all hugged her – genuine hugs of gratitude. I told her that I hoped I would never see her again – at least not on the job – and she laughed.

Then two very dapper men from the funeral home came to take Lynn away. They, too, were so very sensitive and kind. We followed them to the door and stood at the top of the steps as they prepared to place Lynn’s body in their Dodge van. What the hell? Lynn was a car fanatic – buying a new one every few years. She had a couple of Jags and sports cars and really nice rides over the years. A Dodge van would not have been her style at all, but I guess death has a sense of humor. And then one of the men slid the van door open and we saw that there was another body inside. Joy, who is usually the most reserved in our tribe blurted out cheerfully, “Oh, look! Lynn has a roommate.” I thought I might fall down the steps from laughing so hard and then Kathy sweetly said, “Lynn would love that.” That was our Lynnie – making new friends wherever she went.

We went back into the house, which felt deafeningly quiet and Sue decided to make dinner reservations for us that evening at one of the best restaurants in town. And so, a few hours later, we sat in a very private nook in a very fine restaurant and told story after story about Lynn and toasted her with almost every sip. Someone had tipped off our server to the circumstances of our celebration and he was wonderful. As we were leaving, he said, “I hope you all enjoyed your evening – and the one not here, too.” Even he knew that Lynn was still with us.

Lynn’s memorial service was held ten days later on the last day in March. There were over 300 people in attendance. I don’t even know 300 people. The service was magnificent – just as Lynn had planned it. The music was gorgeous – the prelude included a piano, viola, and trumpet – and a lyric soprano sang. I think I did okay with my eulogy. My sister, who lives in California, happened to be on the east coast for business and was able to attend and I decided to focus on her when I began to speak. I was about three words in when I saw her beautiful face crumble into a full-on ugly cry and that immediately relaxed me. She’s a tower of strength, that one. I kept it short and sweet and a little bit funny and told a few stories about Lynn that I hoped everyone could relate to.

I shared that Lynn and I had recently reminisced about one of our favorite movies – Starman. There’s a wonderful scene in that film where an alien, played by Jeff Bridges, is sharing his observations about humans with a scientist. The alien says, “You are a strange species. Not like any other. Shall I tell you what I find beautiful about you? You are at your very best when things are worst.” That was Lynn Parsley. And when things went from bad to very worst in the last months of her life, Lynn was the one who made us feel better. She never gave up hope and she never stopped teaching.

I ended my eulogy with this excerpt from Mary Oliver’s poem In Backwater Woods:

To live in this world,

you must be able to do three things:

to love what is mortal;

to hold it

against your own bones knowing

your own life depends on it;

and, when the time comes to

let it go,

to let it go.

Lynn knew this and she gently helped us to know it, too. I think of her every day, especially when I run across something clever on social media that makes me laugh and I want to share it with her. I miss laughing with her. And I miss talking about deep things. Not many people like to go there, but Lynn did and we went there often – especially near the end. I read a fascinating article shortly after Lynn’s death (she probably sent it to me) – an excerpt from a book by Mimi Zhu – Be Not Afraid of Love: Lessons on Fear, Intimacy and Connection. Zhu writes that “grief is an ancestor who teaches us to exercise constant and immense gratitude.” She goes on, “To this day, grief has shown me that love does not die at the face of death; it is transformed. When you grieve deeply, you are shown your abounding capacity to love. Love does not die. Love sprouts from the ground we have nourished with our tears.”

That last sentence reads like a prayer to me,

Lynn loved Star Wars and well done sarcasm. I sent this to her in my head.

I had the most amazing dream about Lynn the other night. I was sitting outside at a picnic table with Joy and her on a beautiful day. Lynn was still dead but looked great – not sick at all. She said she had come to tell us that heaven looks like you’re wearing 3-D glasses all the time. How awesome is that? Lynn loved all the Marvel movies, so the heavenly 3-D effect is so on brand for her. She was terribly excited about it all and I kept touching her arm to see what it felt like. Spoiler alert – it felt like an arm. It was such a happy dream that I could hardly wait for it to be morning so I could tell Joy about it.

And now the image I can’t get out of my head, not that I would ever want to, is of Lynn and Jimmy Carter in heaven with their 3-D glasses on – blissfully chewing on Milk Duds – and watching the latest Guardians of the Galaxy movie together. Somehow, Lynn knew it all along – every little thing is going to be all right.

Lynn and Kathy will always have Paris – September 2022.

The back of the bulletin for Lynn’s memorial service. Her idea, of course.
“No Hard Feelings” by the Avett Brothers – what a way to go.

Rest well, dear friend. We’ll see you on the other side.

Postscript: In one of our last conversations together, I told Lynn that I would most certainly write about her death. She smiled and paused for a second before saying, “I’d be disappointed if you didn’t.”

And as of this posting, President Carter is still with us. No hurry, sir, but Lynn has saved you a great seat.

Last words

lightning-bugs-feature-small

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.

nina scooter

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.

modern love

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.

cameratwo

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.”

highlights

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.

peaches

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.

ny times list.jpg

Go Nina! Photo courtesy of Marysue Rucci.

 

 

 

 

 

 

 

 

 

When we shall leave this place

kristel poster

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.

dancing

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.

tree

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. 

bald

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 postcards

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.

collage

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.

facebook

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.

 

kristel in a hat

What’s in a name? Sweet Kristel.

 

 

 

 

 

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 and dogs

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 on boat

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

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 baeball

Regina celebrates a good out.