Caitlin O’Hara – Page 7

JANUARY 11–Zooming Out w/Caitlin, post-Obama

Here in California, I’ve been waking up way too early—4:30 or so, and now that Nick and I are finally together again, I try to be quiet for his sake. But the sun doesn’t rise till 7, and those dark hours can be terrible. This morning I tried signing onto Facebook, but all the bleak posts about last night’s farewell speech made the day (life) ahead feel particularly despairing.

I was thinking about the fact that Caitlin had had so much meaningful correspondence with others over the past two years. Recorded correspondence. I have little of that, obviously. Our conversations of the past three years–her most contemplative time–were all in real time.

In the dark it’s easy to panic, and that’s what I did. I was seized by this urgent need to scour through her Gmail and find all of her writings until I realized: I can’t just read through her private stuff.

Then, literally then, I got an email from Andrew, a forward of an email from Caitlin this past July where she had linked to an article she admired and talked about her own perspective. With his permission, here it is:

From: Caitlin O’Hara <caitlin.ohara@gmail.com>
Date: July 25, 2016 at 10:20:47 PM EDT
Subject: Zoomed out

This sums up everything I think about the state of the world and life and how I think – only this guy articulately wrote it and has all the facts at his fingertips to back it up. I am only an amateur historian. With all I know cobbled together from years of art history combined with an obsession with organizing time in my head – decades, centuries, eras. The entire thing has always been a visual structure in my head. Some day I will draw it for you. When I picture us now in 2016, I pull back. I always pull back and picture myself in time and in space geographically. It makes me removed enough (like this guy) to ultimately not feel that there is much I can do to change the shifts of the world, but also inspired enough to think – what is my role in this lifetime (whether it’s my only lifetime or one of many, doesn’t matter) to survive this time?

I am fascinated by this kind of thing. By the ebbs and flows of history. By patterns and by people and all of the stuff he talks about. I guess it’s harder for many people to think in that zoomed out way. For me – it was a mechanism I cultivated as a way to deal with being sick … I’d zoom out, see my own smallness, realize it’s all been done before and will be done again, and I could relax, and enjoy my life now. Like why I like graveyards. And reading about the holocaust. I like reading and thinking about the ebbs and flows of human suffering, living, dying, living again…

History Tells Us What May Happen Next

I don’t think it matters if this guy is “right” about brexit or whatever the defining moment will prove to be…or even if this time really will end up being a catastrophic time (ahead of us). I kind of feel it might be. But I think his way of thinking is a good one that I relate to a lot. And wish more people did. But then, we wouldn’t have the same world ….

Love my Andy.

I’m going to renew my Irish passport. In case we have to skip out of here. ❤️✌🏼️

Sent from my iPhone

And here are some random things we sent to each other:

screen-shot-2017-01-11-at-3-17-44-pm — *Moral Bucket List*

screen-shot-2017-01-11-at-3-14-43-pm — *From Patry Francis’s Instagram xo*

JANUARY 4 –Bird and Bindi

I can’t even begin, right now, to sort out all of the almost supernatural occurrences of the past weeks, write them down, pass them on. I know I am meant to sort all of it out, in words that make sense, to ultimately help other people. And I will do that. But right now I’m super tired.

Still, to remind those who care: there is work to be done. As everyone has been informing me, France is now one more “opt-out” country—-meaning you’re an organ donor unless you opt out. We are going to work on fixing as much of the broken transplant system in our own country as we can. I’m grateful to everyone who has volunteered to be part of the army, and we will be in touch.

For now though, Nick and I are going to California. My wonderful brother will be warming the hearth fires here, minding our house, so we don’t have to worry about leaving it untended. Caitlin’s tree will be up through Twelfth Night and beyond.

California is a place Caitlin and I had planned to visit ‘after transplant.’ (How easily that phrase had become part of our everyday conversation; seems sad and naive now, but I’m grateful for our optimism. It kept us going.)

Oddly, neither she nor I have/had ever been to California, so we will take her with us in the only way we can: spiritually. We will drive up the Pacific Coast Highway, stay in Big Sur, and eventually visit Jess in San Francisco. We will see redwoods, and honor the one so foolishly cut down by the arrogant and sorry young souls who make up the current administration of Boston Children’s Hospital.

A few years back, in her beloved Paris, Caitlin bought herself a tiny, bird-shaped ring. It became one of her most treasured possessions. I just couldn’t bear to put it into the

<< coffin, horrid word>>

Instead, I’ve tied it to a necklace of mine. I added a red bindi from the little sticky-pack Jess brought back from India. I put the bindi in between the bird’s wings. I will wear it on our trip and Caitlin will be with us up at Big Sur and in San Francisco with Jess, and with us among the redwoods that stupid humans haven’t yet destroyed.

My niece Emily wrote this to my sister the other day:

Know what’s so strange? A few days after Caitlin passed I heard this poem called ‘the art of losing’ on an NPR podcast and it felt really significant to me so I looked it up and saved it and now I’m sitting here reading the writings in Caitlin’s pamphlet from her service and that poem is in there

Later, my sister wrote:

Today is my first day back at working out. I always put in a podcast to keep me on the treadmill and it turns out the first one in my queue was the one that ends in that poem. ❤

These are the coincidences that are not coincidences.

The only omission in the service program was the title and author of the quite-famous poem–which is actually a form of poem called a villanelle, a form that itself, is very hard to master….

ONE ART

by Elizabeth Bishop

The art of losing isn’t hard to master;

so many things seem filled with the intent

to be lost that their loss is no disaster.

Lose something every day. Accept the fluster

of lost door keys, the hour badly spent.

The art of losing isn’t hard to master.

Then practice losing farther, losing faster:

places, and names, and where it was you meant

to travel. None of these will bring disaster.

I lost my mother’s watch. And look! my last, or

next-to-last, of three loved houses went.

The art of losing isn’t hard to master.

I lost two cities, lovely ones. And, vaster,

some realms I owned, two rivers, a continent.

I miss them, but it wasn’t a disaster.

—Even losing you (the joking voice, a gesture

I love) I shan’t have lied. It’s evident

the art of losing’s not too hard to master

though it may look like (Write it!) like disaster.

–Maryanne

JANUARY 2–Blue Moon

It is a quiet house here tonight. Jess is on her way back to California. Andrew has gone home to Maine. It was a difficult day. We were going to go into the Boston apartment but never did make it out of the house. All I could do was flop from one surface to the next and cry. I mainly lay on the couch in the family room near Caitlin’s tree, TV tuned to a favorite movie, long-ago DVR’d, which Caitlin and I watched half of this past summer when we were home. The Remains of the Day. One of our favorite movies, one of my favorite books.

I let it play on from where we had left it in August, midpoint: all the melancholy of Mr. Stevens’ trip to the west country to try and reclaim all he had lost. The meeting, after 20 years, between Miss Kenton and Mr. Stevens is all about regret and the inability to change the past– ‘Blue Moon’ playing in the 1950s background, all that poignant, post-war sadness.

It reminded me that before Andrew left today, as he packed up his truck, he found a note from Caitlin in his glove compartment, a reminder for all:

JANUARY 2–Caitlin O’Hara Film Tribute

Yesterday’s post was rather long, so I’m going to post the film tribute here by itself, as well.

Film tribute

DECEMBER 30–Caitlin’s Service Program

For those who would like to take part from a distance, we will be holding Caitlin’s service at 2pm today. I’ve attached a PDF of the program that I put together. I’m so grateful to Caitlin’s dear friend Billy Duffey—who must not have slept a wink the past two nights—who formatted it with all of Caitlin’s favorite fonts and produced it so beautifully. He also printed large, gorgeous photos of Caitlin that are gracing the walls of the chapel. Today is Billy’s birthday, yet he gave us such an incredible gift. ❤

The chapel could not be more perfect: a tiny, non-sectarian jewel that looks like a spiritual art gallery. It is utterly, completely Caitlin.

Click here for the PDF: celebrating-caitlin-dec-30-2016-2

DECEMBER 29–Soggy Dollar Boat Days

*Update, 12/30. Kitty and Andrew at the Soggy Dollar.*

Caitlin never complained. Her not-complaining actually became a problem—we who knew her best honestly could not tell how she was feeling, because she always put up a good, rather jolly front. Andrew would say, “Hey, Kitty, should we go to a movie today?” Or I would say, “Want to try and go out today?” And there would be a flicker across her face, usually of pain, and she would say, “Maybe,” or “Oh, no way.”

So we came up with a system. Around late morning, she would rate the day from 1-10 (1-10 being her version of a 1 or a 10, not a normal person’s). If the day was a 5 or 6, then yes, perhaps, we might be able to take the wheelchair out, later, and go to the museum for an hour, or go see a movie.

If the day was a 2 or 3, as it often was, just showering was going to be tough—-there was no chance of an outing.

(No day was ever an 8 or a 9 or a 10, fyi.)

At one point during the last couple of years, she told me how any time she looked at photos of the previous decade, she could remember exactly how she had had felt when any particular picture was taken. In all those photos she looked great, looked like she was having the time of her life, but she would point and say, “I remember that night. I was desperately hoping that everyone would want to take a taxi.” Or, “I wanted to run down that cliff like everyone else and jump and dance around the sand and party on the beach but all I could think was, how will I climb back up?”

I was reminded of this, today, when I was looking for photos for a tribute that’s happening tomorrow.

St. John was/is our place. Our happiest holidays were spent there and the happiest of the happy days were “boat days.” We would board a charter boat, with a captain, at 8am, head over to Tortola to do customs paperwork, then make our way to Norman Island and Cooper Island and maybe Marina Cay, always a stop at Sandy Cay, and always, always, ultimately ending up on Jost van Dyke.

Boat days always ended on Jost, at the Soggy Dollar Bar.

In the early days, when Caitlin’s health was okay and she could keep up, these were her favorite days. Here we are, back in 2004, enjoying boat day. We always took a pal of hers on vacation with us, usually her almost-sister Katie, and also always filled our boat with island friends. Those days were the best. The best of the best. I hope that everyone who reads this post gets to enjoy days like those days were: life suspended, wrapped up in hours of unending moments of sunshine and turquoise and laughter and rum punch.

But: back to the reason I was reminded of Caitlin’s 1-10 system today. I was looking for some boat day pictures. I was doing this because this world we live in is a ridiculously small world. Jess’s sister Carly is friends with the people who own the Soggy Dollar Bar on tiny Jost. Tomorrow they are going to honor Caitlin with an organ donor awareness day. They asked for a photo to make a banner and so I was looking for a good picture.

We all have 10,000 pictures on our phones and another 10,000 lost in the ether of the last decade. I know that I took photos of Caitlin at the Soggy Dollar Bar, but could I find one? No. I did find this:

Taken in 2008 on the eastern side of Jost. We were introducing Katie’s parents, our dear dear friends, to St. John. We were all excited to be there together and boat day was going to be the big event. But soon after our arrival, it was clear that Caitlin had caught a virus, despite her always-vigilant precautions.

The night before boat day, she took me aside and begged me to let her stay home in our rented villa. “I’m happy to just hang out here by myself. I’ll be fine. You guys go and have a good time.”

Caitlin was our life of the party. No one wanted to go on boat day without her. I’m ashamed to admit that I didn’t let her not come. I insisted she suck it up. “We’ll make it comfortable for you, I promise. You’ll be so glad you came. I know you don’t want to miss boat day.”

She gave in and we all got on that boat at 8am. And if you look at pictures from that day, you would think we were all having the time of our lives. The rest of us were. But she later told me that anytime she looked at the day’s pictures she could only remember how horrible she felt.

A week later, our trip had been cut short and she had been admitted to Boston Children’s for what the CF community calls “cleanouts.” Cleanouts are a few weeks of IV antibiotics and chest PT. They stave off the inevitable, give people a boost, and they worked for Caitlin for much of her life. They worked that time in 2008. She “got better” and we went back to St. John a few more times. Her last trip was with us, and Andrew, in 2013.

This is the photo I sent for the Soggy Dollar Bar to use tomorrow. I’m glad I never knew, when I snapped it, that it would be the last one I ever took of her there. Because it was a good day that did not deserve one drop of sadness. A great day. We had snorkeled and lunched and snorkeled some more and swam (swum?) onto Sandy Cay and had just landed at Foxy’s for rum punch and Roti. We were about to get back on John Brandi‘s boat to end boat day, as always, at the Soggy Dollar.

So everyone who will be at the Soggy Dollar tomorrow for New Year’s weekend: Thank you! Honor Caitlin and don’t be sad. Do remember organ donation and how important it is. Spread that awareness. But savor your delicious painkiller, the nutmeg, the coconut milk, the rum and the sunshine. Caitlin will be cheering you on, all the way.

DECEMBER 27–Caitlin’s Services

On Friday afternoon, we will be hosting a private, quiet memorial service for Caitlin in an extremely tiny chapel at the cemetery we have chosen. This will necessarily be a small gathering for our American family and her close friends. At the same time, in Wexford, Ireland, her Irish family will be attending a mass that honors her life.

We will be hosting a much larger memorial service and celebration of Caitlin’s life in 2017, during finer weather, for everyone who loved her and was touched by her life. We would be so grateful if you all would join us then! In the coming months, we will decide on a date and I will be sure to post it here.

Here is another tribute to Caitlin, from the Metrowest Daily News, written by the very compassionate Bill Shaner: Ashland’s Caitlin O’Hara remembered as strong, warm after losing battle with CF

DECEMBER 26–Boston Globe Tribute to Caitlin

Deep thanks to Bryan Marquard and The Boston Globe for writing this beautiful tribute to Caitlin, and publishing it on the front page today: Caitlin O’Hara, who brought compassion to others while she sought a transplant, dies at 33

Caitlin’s death was ultimately caused by her too-long wait. The surgery itself was technically easier than the surgeons had anticipated. That part had gone very well. Her problems were all caused by having been on life support for too long. If she had received those perfect lungs earlier, there would only have been a happy story to tell.

One of the most important lessons that can come out of this tragedy is how vital is the need for organ donor awareness. In lieu of any flowers or gifts to us, please register today to be an organ, tissue, and cornea donor. (The DMV “organ donor” sticker is not enough.) And please help to dispel the wrongheaded myths about donation. Organ allocation is one of the most tightly-regulated and ethical institutions in the country. Register as an organ donor

DECEMBER 24–All is Bright

*“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.

We 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)

Screen Shot 2016-12-23 at 6.19.21 PM.png — *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.

–Maryanne