Category Archives: Uncategorized

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

MARCH 11 — Our Beloved Henry

Oh, I do not like crying. I do not like that my eyes are raw from the constant salt in them. I also don’t like bearing sad news, but I must share that this week brought some new grief. We lost our beloved Henry to acute renal failure.

Henry had been on a special diet for kidney disease, first spotted last August. But he was doing really well for his age.

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August, 2017

About two weeks ago, he stopped eating anything but the little bits of protein that were allowed in his food. It got to the point, this past week, where I let him eat a little more protein, because he was an old dog and — what else can you do?

Also, this past week, we had a couple of nor’easters here in MA. We never lose power because our house is on the police and fire grid here in town. But 12 hours into no heat or electricity on Thursday, we decided to spend the night in Caitlin’s apartment in Boston.

Once there, Henry started to deteriorate by the hour. I told a friend that the process felt like a gathering snowball. At 2am, I was up for good with him, cleaning him, wrapping him in a soft fleece blanket. I was able to hold him in the crook of my arm, sitting in Caitlin’s “spot” on her sofa, all through the night. And that felt very fitting, and peaceful.

Nick and I both got to hold and comfort him at the end. He knew he was beloved.

He brought so much joy to our life and to Caitlin’s. I’ve spent the last hour going through thousands of photographs and I’m reminded of all the incredibly happy years we’ve had, and that is a good thing.

Here is a photo of the last time Caitlin and Henry were together. She was not yet in the ICU. I had just helped her take a shower, and we’d brought Henry in for a visit.

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November, 2016

It was a happy day.

He adored her.

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In Pittsburgh

Her last post on Instagram, her 333rd, was on Election Day, 2016 — a funny photo of Henry.

And for a bit of her great sense of humor, here is a link to the separate Instagram account she set up for Henry. She knew she was late to the game, regarding funny animal accounts, but she had a lot of fun with it. Click: That Pup Henry

 

Henry O’Hara. February 2, 2004 – March 9, 2018

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

JULY 10 — The Miracle of Video

In the past hour, I’ve heard from a few people who said how nice it was to read Caitlin’s words, to “hear” her.

I’m going to share a few snippets of iPhone video here.  I often think that not long ago, people didn’t even have photographs of loved ones. All they had were drawings (if they were lucky) and memory. These are comforting when I can bear to view them. 

*Click HD in the lower right corner to enable HD quality.

Most of the videos are of Kitten joking around. She had a great sense of humor.

The next one was a year ago, at the Andy Warhol Museum. We both did “Andy’s Screen Test,” where you stare into a camera for 3 minutes. Playback is 4 minutes.

This was the first go. For some reason, Caitlin decided she wanted to go back and do a second one. She let her hair down and then, seemingly presciently, threw off her oxygen and smiled at the very end. We used the entire four minutes to conclude the tribute film

 

Pretending to be an old washer-woman, at our apartment in Pittsburgh. This was the fifth take. She kept laughing.

 

More joking around:

APRIL 20–Speak to Me in Joni

Somebody somewhere recently posted a meme I agree with:  Belief + Doubt = Sanity.

That said, I’m just going to relay what happened.

Previously, I’ve talked about the fact that three of us saw a couple of well-regarded mediums and that Caitlin ‘came through’ with details that no one could possibly know.

Here is a small part of the transcribed recording of my session. K is the medium:

K: She keeps also showing me that she’s very music-oriented. She’s saying, “I’m trying to send my mom music but she didn’t always like the same things that I listened to.” But she’s very music-oriented and she’s wanting to bring through speaking to you through music as well. She’s saying, “Just keep paying attention.”

K: Now, going back in time, she makes me feel like you love–I feel like there’s shared undertones of music that she grew up with with you. Did you listen to Joni Mitchell?    She keeps saying, “Listen to Joni Mitchell.”

Me:  Joni Mitchell??? (I was like, what???)

K: Yeah. Or something of this era, maybe?

Me: She loved Joni Mitchell. Loved her.

K: She’s saying, “Let me speak to you in Joni.” (laughs) “When you put this music on,” that’s what she’s talking about, when you want that experience, it’s like you have these express pathways to her, when you put that music on, you read her stuff, it’s like the sense of feeling her essence come to you, okay. She’s saying, “Mom, it’s more important than any words anyone’s going to say to you.” It’s the essence of her soul just being connected to you.

So that was in February. And we’ve been traveling and I haven’t listed to a whole lot of music. But last week, some of Caitlin’s close, local friends came to dinner here. Instead of my usual Pandora jazz stations that I put on for dinner gatherings, I decided to create a Joni Mitchell station. As I cooked, I noticed that it was playing no Joni, and that the songs it was playing seemed ridiculously message-like. I started jotting down the titles.

Spirit in the Sky, Norman Greenbaum.

Let’s Live for Today, The Grass Roots.

Turn, Turn, Turn, The Byrds (To everything/there is a season).

Stairway to Heaven, Led Zeppelin. (Aside from the obvious, we used to laugh with horror because a volunteer harpist who played in inpatient units at Brigham & Women’s Hospital always played that song!)

Last Dance with Mary Jane, Tom Petty. (This one has special significance because it was a lifelong joke. When her fifth-grade class was graduating from Lower School, they all got up on stage and sang their made-up lyrics, “Last Day in Lower School,” to the Tom Petty tune, and they sang in such a morose and funny way, we parents couldn’t stop laughing.)

The Sound of Silence, Simon & Garfunkle. (see earlier post)

Finally, a Joni song came on, one I didn’t know. At first I thought I wasn’t hearing correctly. 

Willy, Joni Mitchell. (Nick’s brother Willie died at age 29, when Caitlin was 5. Caitlin loved him.)

The friends arrived, and someone said, “Hey, this sounds like Caitlin’s music.” I didn’t really pay attention after that, but when we sat down to eat, I mentioned how the music had been a bit spooky. And as I was talking I realized what was playing. I couldn’t believe it. I said, “I can’t believe this.”

You Can’t Always Get What You Want, Rolling Stones.

I ran upstairs and brought down the little notebook I recently found in her bedside table. She had only written on one page, back on January 14, 2014 when she was first on 24/7 oxygen and very sick, obviously ready to be listed for transplant.

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She had written, “You can’t always get what you want, and if you try sometimes, you get what you need.”

She went on to tell herself to “Let go. Just be strong. You will not be able to predict the future. Accept that. You are getting what you need.”

But “It is going to be scary and you might die.”

Last Thought for Today, on this 4 Month Anniversary

Yesterday, I went to the mausoleum. I’d only been there once before. I don’t find it comforting, and I don’t feel my kittycat there. I mainly went there to cry, after a particularly good Daoist Yoga class. But while I was doing so, I realized a crazy thing. Kitten is in the space adjacent to someone whose last name is PARIS, and whose first name is BIRDIE.

I texted a few people to tell them. I wrote, Come on !!!

And as I drove out of the cemetery and merged onto the main road, I found myself behind this:

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You can’t make this stuff up.

Here’s a little more of what Caitlin herself wrote about writing, and inspiration, and music.

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Update

I published this post, got in my car, and this:

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Also, I’d almost included a link to this but had taken it out. Now I will put it back in, as a few people called my attention to it. The lounge-y cover of the song that played at the end of BIG LITTLE LIES. Have been listening to it over and over.

 

APRIL 13–Venturing Out

On Tuesday, I spent the entire day at Caitlin’s Boston apartment. I emptied the Pittsburgh boxes, decided what to do with the contents, broke down all the cardboard. I made the bedrooms look inviting again. I did laundry there for the first time since last summer, when we briefly escaped Pittsburgh for home and Caitlin got to spend a week there. ‘The best week of the last three years,’ she called it.

As I worked, I realized that Caitlin’s little laundry basket held more than just the two towels I thought were in it. I found one of her favorite head scarfs, the one she wore with such chic grace in the photo below. I also found the “MEOW” sweatshirt I had searched for and thought lost.

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Photo, against the found headscarf

These belongings–I truly wonder how much damage I’m doing to my heart when I sob over them, but…what else can you do? Repression seems worse. Better to grieve and cry and stuff the little meowing sweatshirt against my face and tell Caitlin how much I love her?

I think so.

The only problem was, Tuesday had seemed like the right day to stay in the city all day because I had planned to go to the evening book launch of someone I really like– someone Caitlin really liked, too: Randy Susan Meyers.

Randy used to work with battered women, and now she writes the kinds of novels that hopefully make people stop and think. She only started publishing when she was in her 50s, in 2010, and she has an impressive work ethic. On Tuesday, she was launching her 4th(!) book, The Widow of Wall Street, a well-researched and in-depth look at a character based on Ruth Madoff (what did she know??) The launch would be at Brookline Booksmith where she would be in conversation with Matthew Gilbert, television critic at the Boston Globe.

Randy and Caitlin met a few years ago when Caitlin interviewed her for the Literary Traveler website. Caitlin was so taken with her! She enthused about how smart and articulate Randy was, how funny and engaging. The admiration was mutual.

I had planned and really wanted to go to the launch, but now, holding the headscarf and sweatshirt, what had sounded great a month out, suddenly became something I began to dread. I would have to see people. People I like!–but that didn’t matter. All I had the mental energy to do was take those items home and flop on the couch and watch something like Feud.

I know I have permission to do anything I want right now. And I’ve been good about following that wise ‘rule of bereavement.’

But. I also want to be a person in this world. I always tell myself, when I’m reluctant to do something, that later I know I will be happy I did it.

And I thought of Caitlin, and how she would have trudged down the stairs to the Booksmith event area with her oxygen tank.

I thought of how, if all had gone well, she would have accompanied me, free.

I went. But I decided to show up right at 7, so I could slip into the back. Yet out on the street, the first face I saw was that of someone I adore, Delia Cabe, with her friend Meta Wagner.

And it was great, how I felt instantly ‘normal’ and comfortable again.

We went down to the event area, the site of happy events of my own, where people were still standing about, talking. There was another writer friend, Laura Harrington. We had been planning to talk soon and now here she was.

The evening was excellent and uplifting and being there, surrounded by people who love and support what’s best about our culture, was heartening.

I have no real control over how people read what I write, but a consistent theme of mine has always been a preoccupation with the personal and cultural salvation that is art. And venturing out, when I really didn’t want to, reminded me of how true that is.

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With Laura Harrington & Monique Hamze

 

All the people I mentioned have books out or soon to be out, so here you go:

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Out Now

The Widow of Wall Street, by Randy Susan Meyers

What did the wife know?

 

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Coming in June

The Storied Bars of New York, by Delia Cabe

Cocktails! Stories!

 

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Out now

Off the Leash, by Matthew Gilbert

Pups! Dog park people!

 

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Just launched

What’s Your Creative Type? by Meta Wagner

Take the quiz!

 

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Coming in July

A Catalog of Birds, by Laura Harrington

Compelling family drama published by the incomparable Europa!

 

–Maryanne