Category Archives: ethics

10 JULY– “She feared that her purpose here on Earth was to teach lessons to others.”

That summer–2014–Caitlin was newly listed for transplant and had settled in to wait. She couldn’t leave Boston because she had only a four-hour window if “the call” came.

Four hours to get herself to Pittsburgh.

So there were no more trips to Andy’s place on the Maine coast. No more Vineyard. Sometimes we went home to Ashland to swim in the pool, but always with packed bags and extra oxygen tanks, ready to scramble and pray that one of the few medical jets available to us would be able to come.

That summer, she especially missed Jess, who had, as long-planned, left a lucrative job in finance to try and make a meaningful life for herself in Kenya.

Kenya is a place that has called to Jess’s soul her whole life. I’ll let her tell the next part:

Jess: “The thousands of miles between us felt more expansive than ever and I was desperate to be in constant communication with her. I started sharing the stories of the kids that I was spending my time with at the Children’s Home that we had started.

Simba was one of them. In Swahili, Simba means lion. Although he had never celebrated a birthday, he was a self-proclaimed ten year old with dewy brown eyes. I connected the two as pen pals and they sent handwritten letters back and forth to one another. They shared an affinity for tiny winged creatures and their correspondence often included an illustration or two.

Recently, I searched through Caitlin’s phone for some photos I just knew had to be on it. 

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Jess: “On June 20th, 2014, Caitlin emailed me: ‘Can’t WAIT for Simba’s letter to arrive. Thinking about him and all your little kids a lot. And you smiling at them. It hurts my heart.'”

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“Jess teld me you like birds.”

The next summer–2015–Jess visited Caitlin in Pittsburgh, where we had relocated, and where she was still waiting. Watching them together, I couldn’t help but muse on the physical contrast between them. Jess was training to do a marathon and literally glowed with health. Then autumn came.

Jess: “We were 31 and 32 when I was diagnosed with breast cancer. She knew more about medicine than most and she researched everything. I sent her all of my labs, my side effects, my questions. She was a well-curated vault of medical knowledge. She would have been an incredible doctor. I sent her screenshot after screenshot when a new drug was added to my regiment or I was deciding to taper off of something. She would talk me through each concern.

We talked about everything but when we were both sick, our conversations took on a new level of depth. We talked about death and about reincarnation; we talked about our purpose and spiritual inferiority.

On the evening of her 33rd birthday, we talked for hours and hours. I had just had another surgery and was tethered to my bed. She feared that her purpose here on this earth was to teach lessons to others. “No. No,” I said because I needed her here with me.

The idea that she was here only to teach other’s things was too much to bear.”

Now it is nearly three years later. Jess has spent the past 33 months coping with cancer, unexpected healing issues (13 surgeries), and the unbearable loss of her closest friend. With her oncology team’s okay, she has gone back to Kenya as often as possible, where she has been in the process of procuring land and builders for a non-profit she has established:  THE LEO PROJECT in honor of Caitlin O’Hara.

Caitlin had planned to do a lot of things post-transplant, like her CF friends who were and are living full lives after their successful surgeries. At the top of her list was visiting Kenya with Jess. Meeting Simba. Instead, she seems to have been right—-that she was here, at least in part, to teach lessons to others. I’ve heard from people around the globe who have been moved and changed by her story, and by her fire & wisdom.

Now, the Kenyan children that Jess loves so much are going to know Caitlin, too. Just in a different way than we all hoped.

PLEASE CLICK RIGHT HERE TO HELP JESS WITH THE LEO PROJECT 

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Caitlin in Ireland on her 30th birthday, always up for adventure. 

“You think all this is important,
but all that really matters is loving people and being kind. —Caitlin O’Hara

 

 

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My ‘random’ tarot pick today.

 

 

26 JUNE ~ For Hurting Hearts Everywhere

A few months ago, Nick ran across a call for artists for an annual juried outdoor art exhibition at a nature preserve in Southborough, MA.

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Hand-carved stone, barbed wire, paint

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 A Message from Nick

These past months, I smiled outwardly whenever family and friends approached or contacted me–-I’m a lucky guy. Inwardly, I felt myself recoil more and more, as the hurt in my heart kept getting deeper and deeper.

Not sure why I entertained doing an art installation in Southborough, up the road from Fay School and St. Mark’s, where Caitlin went to school.

I kept trying to make this a happy installation. At first, I was thinking of something like a happy, smiling heart. But each day, working on this at our shop with my guys, I found myself in my office in tears.

I finally gave in as all the pain of these last 18 months came flooding in. The confusion, the names of friends dealing with their own hurting hearts. The Giblins, Walter, Tony, Jessie B, Kimmie, Jess. The hurt on Maryanne’s face. The loss of Henry.

I finally realized that it is okay to say that my heart is hurting.

As painful as the construction process was, it was worth it that Wednesday at 2pm as I placed the final piece in place––a great relief and opening of my heart, I guess, as I smiled and thought “Caitlin likes this” and I was so looking forward to Maryanne seeing it. As I walked away, two hawks soared above–-Caitlin happy because her dad is.    

–Nick

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Design and construction phase

 

ART ON THE TRAILS will exhibit through September 23rd

The show includes 18 installations spread out over a 15-acre parcel of preserved open space. The installation behind Nick’s is a big black and white cat.    !

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BIG KITTY, Mark Wholey

To visit, refer to this map and parking directions.

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“All that really matters is loving people and being kind.” –Caitlin O’Hara

APRIL 23–Coincidences (?)

There are so many, and they have happened pretty much every day, this past year. Here are a couple of crazy ones.

When I announced, in September, that I would be writing my story in a more contained form, the universe seemed to lead me to Dani Shapiro, the author of many moving pieces of memoir and fiction. In November, I made plans to attend one of her small, women-only writing retreats.

There would be six other women in the group. As I was reading the other writers’ pages, before I left home, I wondered why the name of one woman, Julie Himes, was so familiar. Then I realized she was the author of the book sitting right beside me—-my book club’s pick for December. I emailed her to say hello and to remark upon the coincidence.

She wrote back with some equal amazement. In my pages, I had mentioned Vertex Pharmaceutical’s Kalydeco, the gene-correcting cystic fibrosis drug that might have changed Caitlin’s life, if she’d had access to it before her lung damage occurred. In addition to being a writer, the multi-talented Julie is also a research physician and a medical director at Vertex.

On the last night of that November retreat, Julie and the others were talking with great enthusiasm about Sirenland, an annual writer’s conference that Dani, Dani’s husband Michael Maren, and Hannah Tinti have been running in Positano, Italy for the past dozen years.

Long story short: I ended up attending Sirenland last month.

At Sirenland there are three small workshops, with ten writers in each one. I was part of Dani’s memoir workshop. Before I left home, I received the bound pages containing my group’s ten manuscripts. They were in alphabetical order.

I began to read the manuscripts, one per day. A few days before the conference, I was in London when I reached the end of the manuscript.  W. David Weill. The name seemed familiar. I began to read. And stopped. I started talking to myself. What?? What is this??? Are you kidding me???

I called up to my friend who was traveling with me. You are not going to believe this.

David is a pulmonologist and was the medical director of the lung transplant and adult cystic fibrosis programs at Stanford University for years. His manuscript consisted of the first pages of a memoir he is writing about his complicated relationship with organ transplant.

I also realized why I recognized his name.  I emailed the mother of Mallory Smith, the young woman from LA who also had to be transplanted in Pittsburgh, and who passed so tragically last November. Nick and I had just had dinner with Diane and her husband at their California home. I wrote, Is David Weill the Stanford lung doc friend you mentioned?

Yes, why?

And I told her and she said, Oh my God, Mallory did an edit of his book.

So yes, there was that.

Sirenland was an exceptional experience. And David is an exceptional person and I hope that his memoir will find many fascinated readers. He is now consulting, and working to address, as he puts it on his website, an important deficiency in transplant care: the lack of comprehensive quality information about transplant program performance. From his siteIn the United States, there are hundreds of transplant programs performing thousands of solid organ transplants per year. Based on my own experiencing directing programs and evaluating them for public and private entities, I have seen that the quality of the programs varies considerably. This variability is usually not apparent to patients. The mission: Develop a scientifically reliable way to evaluate transplant program quality by using a variety of metrics that will be proposed and tested by experts in each of the four solid organ transplants (heart, liver, kidney, and lung). In order to achieve this mission, I have set up a non-profit entity called the Coalition for Transplant Program Evaluation (CTPE). 

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Our magical workshop space at Le Sirenuse, Positano

         

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The insanely beautiful view from my room at Le Sirenuse.

As I neared the end of my week in Italy, I thought of all the trips that Caitlin and I had planned for “after transplant.”  The last overseas trip she took was to Ireland for her 30th birthday. She traveled with Andrew and they visited her beloved family in Wexford–her grandmother, aunts, uncles, cousins. It was a complicated trip, as that was the summer she began to catch one virus after another. By Christmas, she was on oxygen full-time and would never travel again.

I decided to take advantage of the fact that I was already “across the pond.” I had a ticket home from London but was able to change my departure date. I asked Nick to join me in England, to see, in honor of Caitlin, some places she longed to visit: Salisbury Cathedral, Stonehenge, Bath. He came and we saw those magnificent sites and he was also able to visit with old, close friends and also some Welsh cousins he had not seen for thirty (!) years.

We ended our week in London at the hotel where I twice stayed with Caitlin, most recently in 2012. I showed Nick around the enchanting public spaces and pointed out areas that held particularly vivid memories, like how one afternoon, in the lobby, I realized that the man sitting beside me on the sofa was Cuba Gooding, Jr and he was really sweet and funny and offered me a cake from his tiered tray, then basically shouted BOO! when I reached for one.

I showed him where Caitlin got into the taxi with her big suitcase full of oxygen and medical equipment that took her to the Chunnel train that brought her to Paris and the apartment where she so bravely spent a few long-dreamed-of weeks alone.

After we unpacked, we went down to the hotel’s spa. Nick went to the men’s changing area and I went to the women’s. We arranged to meet on the thermal floor.

Once inside the women’s area, the sights and spa smells were so immediately familiar. How could six years have passed? Caitlin was almost there, a shimmering memory in robe and slippers. I allowed myself a moment, thinking, The last time I was here, Caitlin was alive and my book was about to come out, and Cuba Gooding, Jr gave me a piece of cake. Life was pretty good.

Then I went down to the thermal floor to look for Nick. It’s kind of dark there and I couldn’t see him, but suddenly he came out of a door, followed by a man. Look who I found! he said, and it was Cuba, wrapping me in a big hug, saying he was so sorry for the loss of Caitlin, and then he was gone, and my head was spinning a bit. Still is.

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In London

 

–Maryanne

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NOVEMBER 16–& the Anniversaries Begin

I know all the dates.

Yesterday a year ago was the last night Caitlin would ever sleep in her own bed. That night, she was so weak she did not have the strength to sit in the bathtub and let me wash her hair. I was so alarmed I emailed her doctor at 10pm.

On the 16th she was admitted to the hospital for the last time.

I wonder now, how many times in her life was she admitted to a hospital? I don’t know that I could even guess.

After I went home for the night, she texted me

Caitlin: Had to get an echo. Feel sick. And tired and can’t breathe. Love you. Hope you get rest.

Text message: 11/17/16 9:14am

Caitlin: My score is 70

Maryanne: Oh my God. Oh wow. What happened?

Caitlin: Dr hayanga came in. Because of my oxygen

Maryanne: What did hayanga say

Caitlin: He was optimistic. Very. He was Iike, we expect to get offers.

Caitlin: Andrew says we HAVE to be hopeful

Maryanne: We ARE hopeful. This is going to happen.

I drove to the hospital that morning with a light, happy heart. It was finally going to happen. The head surgeon came in and said he had been up all night fielding offers for her. None of them were a match, but with so many offers coming in, and with her score so high, a match seemed imminent.

She was on a lot of oxygen but she was stable, and felt much better than she had at home. Finally, finally, finally, after 2 1/2 years, it was going to happen.

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Yesterday, another CF tragedy occurred. Mallory Smith of California, who, like Caitlin, could only be transplanted at UPMC and moved to Pittsburgh to wait, received her transplant in September. Her recovery was hard but she was recovering. She was on the other side. Just a few weeks ago, she celebrated her 25th birthday. Soon after, when the docs removed her last chest tubes, she said, “Today is the happiest day of my life.”

Then a pneumonia took hold in her chest. Without an immune system to help her body fight the infection, she became sicker and sicker. The cepacia bacteria that had damaged her native lungs began to destroy the new lungs as well.

We were all hoping for a miracle of science for Mallory, but she slipped these surly bonds yesterday afternoon, her most beloved people by her side.

She was brilliant and kind and everything wonderful. A few years ago she wrote an essay that contains these words:

My life is a miracle because I should be dead. Your life, even if you’re healthy, is a miracle, because your existence is the result of stars exploding, solar systems forming, our Earth having an environment hospitable to life, and then, finally, millions of highly improbable events accumulating over millions of years to bring you, a capable and conscious bag of stardust, to the here and now.

Acknowledge that miracle. Existing is a rare gift, a privilege. It isn’t a right. Think of all those atoms that never ended up inside a human body.

So pick something, do something, to respect that miracle. Step up to the challenge of making your own meaning out of mere matter. Let the whole, the human, be altruistic, be greater than the sum of the parts, the selfish genes of our genome.

Set an intention and get after it feverishly, frenetically. Give back what we’ve taken by paying it forward, save a life, smile at a stranger, climb a mountain leaving nothing but footprints, inspire a child, take care of your body, bring happiness through laughter, plant a tree, and sometimes, just breathe and exhale a little bit of calming energy to your environment.

Give back in whatever small way you can, any time you can, because we are not small. No one of us can do everything, but all of us can do anything. Do it because we have survived, and that is a miracle. Do it because why wouldn’t you? Do it to justify your life.

I hope Caitlin found you, Mallory.

Full text:

And we are big (spoken word unspoken), by Mallory Smith

View story at Medium.com

 

SEPTEMBER 26 — The Caitlin Book

From a little notebook of Caitlin’s:

April 27th, 2012
I am grateful for —
My parents
My friends
My apartment & car
My dog
My ability to be able to go out and have fun even though I’m sick.

In July of 2014, 6 months into full time care-giving, I realized that I hadn’t worked on my new novel and that it would be easy to continue to ignore it, indefinitely. So I started carving out a daily chunk of time. I would set my timer to 30 minutes and write, with full focus, for at least that amount of time. At the end of each session, I circled the date in red.

It’s amazing what you can do with 30 focused minutes. I managed 254 pages–a decent draft of a new novel. In 2+ years, I did not miss a day until I finally gave up, in the ICU, on December 11.

Last week, on September 18, which was our 35th wedding anniversary and the 9-month anniversary of Caitlin’s transplant, Nick and I walked around Walden Pond.

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Walden Pond, 2017

When we came home, I started setting the timer again — for 33 minutes, in honor of Caitlin.  But instead of working on the novel, for the moment I’m compiling parts of this blog and other words into something that I’m just calling “the Caitlin book” for now.

At this point, it is painful. I started at the beginning of the blog, but now I’m into the December posts, which I had not read since I wrote them. Reliving each shock after shock, the kernel of faith, the hope, the desperation, and then that final joy when she went into the OR on December 18 and received lungs.

It’s still impossible to believe things played out the way they did.

But a week does not pass that I don’t receive a blog comment, an email, or a hand-written note from someone, somewhere, who has been bettered by Caitlin’s story. Here is a recent one (accompanied by heart-shaped rocks for Caitlin’s memorial). It’s a reminder of why I want to create something more permanent than blog posts in the ether.

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It will not be a story about anger and illness. It will be the story Caitlin wanted told: about light, love, and fierce positivity; about life and afterlife.

I am still figuring out the form it will take.

I told my wonderful friend Jane, in Pittsburgh, a beautiful writer, that I was doing this, and she responded:

Happiest thing in your letter: you’ll start the Caitlin book! This has to be done. This is going to be so wise, so beautiful, such an honoring of life, of soul, of friends, of motherhood, of grief, of CAITLIN. It is going to be a unique gift to the world. And to many many people who suffer terrible illness and loss, But really a gift for everyone. Mothers! Daughters! People who need Inspiration!

I have printed her words out and hung them over my desk, to keep me going.

 

–Maryanne

DECEMBER 24–All is Bright

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“Like the Madonna,” her Irish great-gran would most definitely have said.

It’s Christmas Eve, a night for faith and hope, no matter what your faith, no matter what you hope for.

Last night, a visiting friend said he was angry, said, “That’s where I struggle with faith. How could any God allow that to happen?”

“No, no, no!” I said. “Please don’t think that. I need to remind people not to think that.”

Caitlin would not have changed the fact of her cystic fibrosis.

Let me underscore that: Caitlin would not have changed the fact of her cystic fibrosis.

Caitlin believed, as do I, that earthly struggles make you a better, stronger, and more loving and compassionate person.

I’m no super-strong saint. I’m missing her terribly. Horribly. Unbearably. I fall down on the floor. I curl up and cry. I walk down to the river and pace the lawn and wonder how I’m going to live the rest of my life. Today was the hardest day of all—denial and shock setting in, remembering that just one week ago we were filled with relief and happiness, knowing she had one more chance at transplant. But at the same time, I know certain things to be true: pain and struggle are terrible but all of the mess contributes to the growth of your soul.

When Caitlin was little, she required that I sing “Silent Night,” no matter the season, to put her to sleep. Even though, to me, it was supposed to be a special, once-a-year Christmas Eve song. My entire life, I’d loved Christmas Eve more than Christmas. I loved it to be silent and quiet and sacred—-dark but with a sky full of stars. Caitlin made me realize, from her earliest years, that all evenings could be sacred.

It was raining today and it’s still cloudy tonight. There are no stars to see, but I know they are there. And although I know Caitlin is there, somewhere, in the form of bright, loving energy, I will just miss her so much. Her face, her voice, her charming, lovely human presence. But I want to remind everyone of her own words, just one month before her passing, on November 20, on this blog:

There is so much suffering in the world … so much. My belief though at least is – the world was not meant to always be fair or fun or easy.  The world is teeming with life, and death, and pain, and Donald Trump even haha. We just have to keep living. Step back. We are just tiny beings. There are lobsters living at the bottom of the ocean for over a hundred years. They have just been sitting down there through all of our lives and wars and lives before us. We aren’t that much different from lobsters really if you pull back a little. All part of this teeming painful wonderful world where so much is just luck. But we can choose to be kind, and to keep trying — we have the power.

 “There is a crack in everything. That’s how the light gets in. ” Leonard Cohen

 —Caitlin, November 20, 2016

And her very last words, texted to me to post on December 3, right before she crashed:

I love my mummy for everything she does – there are no words. Nor for andrew and my dad. They are all so caring. focused their lives directly on me. it is hard to reconcile how that can possibly be ok. But I guess it’s what we do as humans.

Heart and humor, and humility he said will lighten up your heavy load. Joni Mitchell refuge of the roads.

So much outpouring of love and attention makes humility a challenge, but I am so grateful for it. Heart and humor are easier. They feel like the only directions to go right now.  Joni Mitchell’s words feel like permission to let go.

I do realize that not everyone who reads this blog is experiencing a big emotional moment in their lives …that sometimes life skates around on top where things are delightful and easy. And I’ve been there and hope to be back, even though I love to cry (with happiness!).
I couldn’t be further from the road right now in Joni’s song with its literal talk about the refuge of anonymity, cold water restrooms and and a photograph of the earth in a highway service station. I am consumed with myself and it’s boring and uncomfortable and embarrassing to have so much attention. And I LIKE attention. At the same time I can’t stop – in order to keep going I have to focus on myself. Self self self. It feels so anti human. It is. I rely on others completely and ultimately, finally will rely on another person to keep me alive.

My thoughts these days aren’t the skate on top kind of normal life thoughts. They’re up and down and trippy and depressive – and we have a lot of laughs. And lots of crying. And weird creative urges. I just want to say thank you for listening to what sometimes must be very emotionally over the top sounding writing. And to reassure you I don’t take myself too seriously. I do take life seriously though, I’ll be honest …. because it’s a seriously wild business.

Thank you for the support – I know I wouldn’t survive at all without it. It’s such an easy thing to say. But truly, i’d be dead by now! I am so very grateful even if I am a bit off the grid lately and I’ve faltered shamefully in my thank you notes – I don’t think I’ll ever get to some of them. But – I’m here, and thank you. And I love everyone very much and love hearing from people even if I am not able to write back.

–Caitlin

DECEMBER 23–Remedies for LOVE

We came home yesterday. Our wonderfully kind friend Jimmy C sent his plane for us in Pittsburgh, and Oh my God!—it made for an easy, stress-free transfer, and we couldn’t be more grateful. To just get driven to the airstrip, board the plane, kind pilots, up we go, 50 minutes: home.

Home.

My wonderful sister Kate and her husband Phil were waiting at our house, heat on, food cooking. Over the day, my dear brothers arrived, and friends arrived, and friends have continued to arrive. Jess flew in from San Francisco today and will stay with us until she has to go back for her next treatment. Katie (Caitlin’s almost-sister) came down from New Hampshire. Jacqui, Kenley, Alyssa, Liz—-some of Caitlin’s closest friends are here right now, gathered with other friends and all my family, downstairs, as I write, and it’s wonderful.

We need people around us. Caitlin knew this. We need each other. Being alone is horrible. This past week, anytime I’ve been alone it’s been unbearable, makes me want to jump out of my body. But having people around helps so much. The Jewish custom of sitting shiva is one that I think is so smart, and I’m realizing that what’s happening right now, downstairs, is kind of a combination of sitting shiva and a good old Irish wake. I can’t always interact with all of them, but I’m grateful they are here, and I love hearing the talking/laughing/crying sounds they make.

In Pittsburgh, our condo building didn’t allow live greenery. Caitlin had always wanted a fake white tree with colored lights, so last winter we bought one. This year, we put it up right before she went into the hospital on November 16, and kept it lit as a vigil. We decided to pack it up and bring it home, and I’m so glad we did. From now on, it will be our Christmas tree. Caitlin’s tree.

IMG_4157.JPGWe are grateful that Caitlin’s story is traveling so far and wide. The comments from friends and strangers have heartened us, unbelievably so! To all of you who have written,

“You don’t know me..”

“You haven’t met me, but..”

“I hope you don’t mind ..”

Please please know: we love all of your comments. We love knowing that Caitlin’s short life has made a difference to so many people. It’s the most wonderful thing.

We are also so grateful that the Boston-area media wants to celebrate her life and pass on a) the message of the importance of organ donation, b) the need to change the regional lung allocation system, and c) the need for a new healing garden in Caitlin’s honor, to replace her beloved Prouty Garden. I  spent over an hour on the phone today, talking to the Boston Globe‘s Bryan Marquard, who is going to write a beautiful feature about Caitlin. He then spent another another hour talking with Andrew and Jess.  Bill Shaner and photographer Art Illman of the Metrowest News spent an hour here at our home today, talking with us about the importance of Caitlin’s story. The Boston Herald also wrote a truly lovely piece today, written by Chris Villani. The  photo they chose to use is from this past Mother’s Day and it both breaks my heart and fills it to bursting.   (Herald story)

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This beautifully-lit face! Mother’s Day, 2016

I’m going to keep writing these posts, for as long as I need to. They help me, and I know they are helping the people who loved Caitlin. It’s funny—-I’m a writer but all these years, I  never ever EVER wanted to write about Caitlin’s medical struggles—I felt we had lived them once and once was enough and I didn’t want to dwell inside them. I wanted us all to move on and LIVE. But this is different. These posts are keeping her alive.

We are probably going to have a private service next week, and then a very public memorial and celebration of Caitlin’s life at a later date. I’m not sure where or when—I’m a little wary of planning something during a New England winter. But I will announce it here and we want everyone who wants to come to please come.  (We just can’t do the typical wake and funeral. Standing in a sterile room with a coffin, a receiving line–it doesn’t work for us, and it was something Caitlin would not have wanted, either.)

At one point, Caitlin considered doing a masters in philosophy. She got too sick to really pursue that, but she read deeply, and was only interested in reading good, complicated things. She had no time for crap writing, junk reading, beach reads. No time. I loved that about her, loved that she got so into Virginia Woolf in high school—that she GOT Virginia Woolf at such a young age.

In the hospital, I read aloud to her from Mary Oliver’s new book of essays, Upstream.  We started when she was on the medical floor and fully ‘normal,’ and then continued in the ICU when she was in and out of consciousness. In the ICU, her blood pressure always went up when I read (a good thing on ECMO!) and we joked that she was was liking the Mary Oliver. MO talks about Emerson and Thoreau in some of these essays. They were old soul writers whom Caitlin loved. This little dish was a gift from her, and always sits on my bedside table. Remember the message, friends. It is Thoreau’s message, and it is Caitlin’s message.

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–Maryanne