Healthcare Insights – Page 2

MARCH 22 — Retablos from Caitlin

I haven’t seen the new movie, “Five Feet Apart,” about two teenagers with CF, but I hear that it “gets it right” and I’m excited about that. A while ago, I’d said I would start posting more of Caitlin’s own words here. I got too busy writing my book to focus on it, but with CF “in the air,” now seems a good time.

1. Part of a draft for a talk she gave to Vertex Pharaceuticals employees in 2012, about what life was like for her, even when she looked “normal.”

By winter and spring of 2011 I had settled into a pattern of avoidance, which is the first real indicator that quality of life is suffering. I avoided any situation that would involve me walking any distances, especially with people other than my parents, 1 or 2 close friends, or my boyfriend. My boyfriend would carry me up stairs or hills when we would go places — he was really the only one I would “go for walks” with, which was still not very fun. I still drank alcohol and socialized, but only in situations where I could drive or take a cab directly to the place, and leave in the same way. I would dread being put in a situation where suddenly everyone I was with would want to change venues. I specifically would not choose plans where the venues of the evening were near each other, because that always meant that we would have to walk. I preferred if they were far away, so there would be an excuse to take a cab, or drive. Walking on the beach was awful last summer — just a slightly sloping path to the beach — because sand makes walking doubly difficult.

I remember one moment last March, in particular, that I have thought of often during these past 6 months. I had houseguests— two friends, a couple —staying with me. We were supposed to meet her friends at a bar and at the last minute those girls changed it to a place that is very literally right down the street from my apartment. You can see it from my window. My houseguests were from out of town and didn’t know how close it was. It was cold and snowy, so I used that plus the excuse, “It’s close but not THAT close” (it was), and the fact that I was wearing heels, to take a cab. I mean it was literally 2 blocks on flat terrain. My two friends couldn’t have been nicer, but even I couldn’t bear to flat-out admit the real reason. It always seemed like, well if i feel THAT sick, why am I even going out, socializing? Why am I not in the hospital, or sitting in Pittsburgh waiting for new lungs? It was sooo not that simple. And once I was somewhere, standing still and talking, I appeared to be completely normal. Even so, we took the cab 2 blocks, and it was absurd to everyone, how close it was. They couldn’t have been nicer, but I was embarrassed and so frustrated. Moments like this happened a lot, but this was the one that stood out. Whereas for years I might get short of breath from an exerting walk, but could just deal with it, I felt like there was no way in the world I could have walked those 2 blocks, even if my life depended on it.

She looks great here, but her lung function was 28%

2. She was a lover of art history who had a real affinity for Frida Kahlo. (I wish she could see the current exhibit in Brooklyn.) This is part of an essay she wrote for a site called Literary Traveler:

In Mexican villages there is a long religious tradition, stretching back to the 18th century, of small, naively painted oils, or “retablo” paintings. These works were often painted by amateurs, and offered up to God during times of grave, often medical, misfortune; during times of desperation. Retablo paintings, which were also called Ex-voto paintings (from the Latin ex voto suscepto, meaning “from the vow made”), were fervently prayed to several times a day. Their purpose was two-fold. These little symbolic works of art were meant not just as a symbolic offering, given up to the heavens in exchange for saintly aid, but also as a testimonial for future worshipers and sufferers. The depiction of the victim’s plight was not sugar coated–there was no hiding behind a glowing cherub, no reaching for the chiseled hand of God. In retablo, tiny figures went up in flames, or lay dying, stretched out on bare bed frames with their insides painted black and green. The message was clear and raw and poignantly human- ‘this is the terror we are living, so please, please PLEASE–help.’

One modern artist would, in her short life, come to know gritty physical suffering better than most — Frida Kahlo. Non-religious, highly emotional and unapologetically female, Kahlo was on a trolley at age 18, in the year 1925, when it veered off track, collided with a bus and nearly severed Kahlo in half. A handlebar from the trolley went straight through her torso; her pelvis was crushed. Her convalescence following the accident gave way to her first works, painted in bed, often with a mirror propped up next to her, examining the physical burden her young body had become. Suffering was a constant now, and would always would be. From this moment forward she would develop artistically and personally to revolutionize Mexican painting, and along her path bring the Christian retablo style straight out into the world it was perhaps always meant to live in — the secular world of the human condition.

3. On Music

Music – I love lots. I love, like any good Bostonian, good old classic rock, Led Zeppelin, CSNY etc., … Janis, anyone at Woodstock. But I also am a sucker for the folksy 70’s stuff, singer/songwriter stuff – Carole King, Judy Collins, Simon and Garfunkel, America, Fleetwood Mac (huge favorite) and my all time favorite (me and a zillion other girls..but it’s because she’s so great)…Joni Mitchell. A lot of times it’s a specific song here and there, and then some artists (like Joni) whom I love everything belonging to.

I also have a spot in my heart for 80’s music and certain albums that my Mom played — definitely a generation thing — Genesis and Phil Collins, Peter Gabriel, Steely Dan, George Michael, Bruce, the Cars, Dire Straits, the Police.

and then the 90’s. I love R.E.M and Nirvana and Smashing Pumpkins and Counting Crows, and all kinds of songs that remind me of that part of my life. Radiohead, Chili Peppers.

and I love the Grateful Dead.

and I love soul and Motown, Al Green, jazz and Ella Fitzgerald and Nina Simone.

and Pink Floyd of course.

and David Bowie.

and Queen. Freddie Mercury. My goodness, I love him.

the Velvet Underground

Sublime

Talking Heads

Despite my reservations sometimes about Bono (has maybe become a caricature of himself), I have to say that I Still Haven’t Found What I’m Looking For and Where the Streets Have No Name are 2 songs that I have never ever in all this time of them being overplayed, tired of.

And within all of these (and more) are certain songs specifically that just are everything for me. For example I could listen to Gerry Rafferty’s Baker Street on a perfect day out driving and feel so great (corny but true).

I also really enjoy classical – piano mostly, Chopin. But I admittedly know less, and only have about 10-15 songs on my iphone. I have a hard time remembering the #’s -it goes into a different part of my brain than the brain that can remember every song lyric to every song I know.

I don’t know what I’d do without music!

Claire Wineland, another CF soul gone too soon

4. A late-night reaction, to me in an email, about some “law of attraction” people she’d read about.

Here is what I see. The issue here is not that they are ‘wrong’ – I think yes, there is something to the ‘law of attraction.’ Or whatever silly human name they tried to give it. It’s the same thing I feel when I get parking spots. But there is so much more to life than even this end result that these people are preaching.

What all of this stuff leaves out, laws of attraction and allowance and whatever other crap they are talking about, is the human stuff that is so great and painful and makes life exactly what it seems to be: one giant learning experience. I’m not sure there even is an end to the learning experience, how could there be when we are still human? I am not sure there is any kind of answer we can grasp. Being sure would negate the whole thing anyway. We are just here, and we don’t know why.

It reminds me of a funny nagging problem I’ve always had with Buddhism. Although I respect the peace that Buddhism teaches, and I like that there is a major religion out there that promotes what it does, I’ver always been weirdly conscious of this DILEMMA with reaching Nirvana…in some way escaping all of these things to reach this higher level of clarity where you exist above it all. Why escape what we are here to experience? I don’t know enough about Buddhism to really critique it, but I know some. And it’s funny because part of the entire way that I operate is based on placing myself outside of what is “important” in life, but somehow at the same time, it’s not in line with a Buddhist type of thought, because I am completely enmeshed and in love with the bolts of raw feeling and pain and emotion and hurt and silliness that this life gives you. I know that I don’t want Nirvana now, or heaven, or whatever other plane it is. I am happy to just know it’s there, and trust that I will like it, when it comes.

What bothers me is that this slight understanding that these wackos have stumbled upon (I think they got it at some point…and then their scary brains took over)….unfortunately their human brains have turned it into something that is the opposite of itself. It’s a teaching that now breeds the same stuff that they were trying to overcome: disagreement, misunderstanding….everything they probably think they are trying to avoid.

Just let it be. And there it is…the idea of letting it be….we don’t have control over what our life sums up to be.

They say life flashes before your eyes before you die…I think you can make life flash before your eyes, I think it happens everyday and people just don’t notice it enough.

When I think about my life I picture certain moments, moments that were not burned in my memory or made important because of anything I did. They exist in my memory for reasons I have no idea about. And I wouldn’t trade those for all the attraction and allowance and Nirvana in the entire world.

Daddy always talked about having goals and writing them down. I don’t think that’s a bad thing, but it was never my thing. I realized that something I did without trying was that I always looked back on each year and could pick out one thing I’d learned. And I can trace that back to Daddy too, and you. Being able to self-reflect and change yourself…what a cool quality. And so neat to see it actually happen, when you can feel yourself change based on what you, and only you, learned. Best thing I have learned this year is the power of just waiting, sitting back, and not saying anything, and holding your tongue and seeing—NOT only what kind of knowledge will change inside of you, but what you might make other people think about, if they are just given the chance to mull without being told what to think.

Anyway, on that note, I am going to wait until the morning to actually hit send.

love you xo.
—–

And then I tried to go to bed but couldn’t, and this is what I wrote in a notepad document. Life flashes before your eyes constantly, certain things make up your memory and you dont even realize it. —

POP UPS — Things I think about all the time and don’t even realize. Pop ups.

Willy turning me upside down on the porch, the black thing next to our door.

9 east – specific flashes. Sharing room with anorexic girl. IV pole when I was younger, walking through the darker 9 west, 9 north halls.

The bookshelves in our living room.

Made-up image in my mind of you meeting Daddy, it’s very clear.

White metal chair in the yard. Small kid’s chair ?

Hospital, 9 east, walking in the garden with the chest tubes, hot air.

Walking muffin /dogs hot summer, Mashpee Commons. Afraid of tornados, sleeping in Mashpee, the smell of the house. VO5 shampoo and conditioner and bath beads. Smell of the comforters, pull out bed.

Being in 7/11 with Kenley and Jacqui, hot air.

Listening to Whiter Shade of Pale with Lindsay DiBiase in a room at Fay.

Drinking from the cold water bubbler upstairs by Scollay Square.

Walking into the dining hall at SM wearing tight black skirt and tight pink bebe tank top.

Coming home from Brooks game and so cold and eating pasta with meatballs and currants. I coughed up blood on the field at that Brooks game and I was scared.

Fighting with Mike P at a restaurant on Route 1 while women put up horrible Christmas decorations and we were the only ones there, sick feeling.

Listening to Touch of Grey over and over again while I walked to the gym freshman year in college, F street corner.

Walking home on a cold snowy morning, 6am, caring about nothing but the quiet and myself for a moment, turning corner onto F street.

Walking down the street in Venice with you looking for a drugstore, looking at a turnstyle of postcards of cats, hot air and headiness.

Turning the corner on 17th street by the Corcoran.

The feel of my feet against the old tile in the old shower in my bathroom, the dark tile.

I’ve felt alive, and sick, and miserable, and happy, and sure, and doubtful many times in my life that maybe I thought would be more meaningful than these simple, plain, silly moments. But these are the ones that stuck, and make my life.

Of the moments and people that mean something to you I think there is always a time beyond the obvious, beyond the “main event,” that meant more to you than anything else, and it’s usually simple and small and totally random, a snippet you have no control over.

So you tell me how on earth, (no pun intended) are we supposed to expect to attract and allow, and CONTROL what this life gives us? And why would we want to?

–To follow this blog, click +Follow, down to the right, and enter your email address to be alerted to new posts.

MARCH 12–Four ♥ Stories & A Big Loud Meow

Update needed, as Caitlin used to say.

♥ Story 1, JESS:

Nick and I are on St. John. The night before we left, we had dinner with the incredible Jess in Boston. She had been cleared by her oncology team to go to Kenya for two weeks.

Once in Nanyuki, she was able to finally lay eyes on what she has brought into being: The Leo Project in Honor of Caitlin O’Hara.

This resource center for children, which is her promised tribute to Caitlin, is now a reality. Construction began in January and the walls rise daily.

The Leo Project_FULL.jpg — The Leo Center, rising

The Leo Project_STAGE.jpg — Future stage for performances

Last July, when she announced Phase 1 of her project, with a goal of raising $200,000 to buy land and construct the center, I asked, “What happens if you don’t raise all the money?”

She smiled at me in her calm, steady way. “But that won’t happen,” she said.

It didn’t. Phase 1 fundraising is now complete. Construction will be complete by May. Fundraising is now into Phase 2: a $40,000 goal for set-up costs that include a perimeter fence for security, computers, supplies for pilot programs, furniture, a sustainable garden, and initial staff salaries.

Jess on-site with Mungai, her general contractor

Fred the foreman and one of his cheerful workers

♥ Story 2, ANDREW:

Last Friday, Andrew texted me a photo and asked, “Is this still standing?” The photo was of a mini-mart on the other side of the island. At first, I didn’t realize Caitlin was in the picture. Then I picked out her fierce little presence, and realized that it also happened to be International Women’s Day.

Love. Steel reserves. We have everything.

Andrew has never run a marathon but he’s been training all winter. On April 15, he will run the Boston Marathon in honor of Caitlin. John Hancock provided Jess with a number for the Leo Project; Andrew will be their official entrant. Every dollar he raises will go to the Leo Project, but he has to commit to raising $10,000 in exchange for the official number. Please read his story and support him: Andrew’s Boston Marathon for Caitlin & the Leo Project

♥ Story 3, MALLORY & DIANE:

I’ve written before about the incredible Mallory Smith, who followed in Caitlin’s footsteps, relocating to Pittsburgh (from LA) for a lung transplant. Mallory was empathic and bright, a straight-A Stanford grad, avid surfer, passionate writer. She got her transplant in September of 2017 and celebrated her 25th birthday that October. A month after that, she succumbed to a raging infection.

Mallory became another cystic fibrosis tragedy, but today, March 12, we are celebrating her beautiful soul with the publication, by Penguin Random House, of her posthumous memoir, Salt in My Soul, An Unfinished Life. It is on sale everywhere and I urge you to run to your favorite independent bookstore and buy a copy.

From the LA Times review:

The day of Mallory’s memorial, Diane opened up the electronic journal that Mallory had kept secret for 10 years. It was 2,500 pages long. Mallory wanted it edited and published, and she trusted only her mother to read it raw.

“I spent two to three hours a day holed up in my room laughing and crying while I read it,” Diane said. “My husband needed to see a grief counselor after six months, but this was my grieving process.”

Very quickly, Diane, a veteran publicist, understood she had a book on her hands, one that could inspire people facing impossible situations, that could help medical professionals better understand and deal with their patients, and raise money for cystic fibrosis research.

She found an editor and then a publisher, who gave her a healthy six-figure advance, none of which she will keep.

She already has more than 60 talks planned around the country to promote the book — at hospitals, universities, law schools, medical schools, high schools, tech companies and the New York Public Library.

Nick and I will be hosting a celebratory hour for SALT IN MY SOUL on July 11 at Framingham Country Club at 6:30 in the evening, and we will welcome everyone who wishes to attend. Diane will be talking about Mallory, and Jess will be on hand to show us photos from Kenya, as the Smiths are generously donating all book sale proceeds to the Leo Project.

♥ 4, St. John:

So here we are, Nick and I, back on St. John, the place our family loved best. As I’ve previously written, “boat day” was always the highlight of our vacations here. On boat day, we would go out with a captain and visit a few of the British Virgin Islands. We’d enjoy the wind and water, do a little snorkeling. Pop into a couple of the various beach bars for conch fritters and painkillers.

On Sunday, the two of us did boat day with Captain Cleve, a St. John native who is an all-around wonderful person and great captain. In the morning, he texted Nick to say that he’d decided to use the bigger and newer of his two boats for our trip.

We boarded at 8:30, went through customs on Tortola, then headed up to Norman Island, which we hadn’t visited since 2013 with Caitlin and Andrew.

It was beautiful, but as we plowed through the waves, I was wondering if I even wanted to do this anymore. There are memories in all of these islands, and those memories are bittersweet.

I looked at the empty spot beside me, where Caitlin would have been sitting, and wondered, Are you really with us?

At Norman Island, we moored and jumped into the water. At hull level, we noticed Cleve’s lively logo then saw the “33”– a number which has become Caitlin’s “signature” “sign” to us.

Seeing that 33 delighted us. It felt like a little hello from Caitlin and we spent the rest of the afternoon feeling upbeat.

At the end of the trip, back on St. John, we were docked at the fueling station when the peace was suddenly broken by someone’s super loud ringtone playing that old Meow Mix jingle. Meow meow meow meow 🎶 meow meow meow meow 🎶 meow meow meow meow, MEOW meow meow meow..

I mean, super loud.

We whipped our heads around to see where it was coming from. On the boat behind us, the embarrassed captain was laughing apologetically and scrambling to answer/quiet his phone.

Nick said, “Look at the name of the boat.”

You can’t make this stuff up.

Meow.

DECEMBER 20 —

Well, this is a tough day, no question, but I have to mark it with a post.

Last week, I finally made time to visit the medical museum run by Mass General Hospital. I wanted to get a close-up view of the first heart-lung machine, which I’d been seeing through the window whenever I passed by. I wanted a stark reminder that modern medicine is still pretty new, that it is still—compared to the wonder that is the human body itself—quite primitive. I wanted to feel lucky to have had Caitlin for as long as we did.

The heart-lung machine was gone, swapped out to make way for other exhibits. But I found myself transfixed by something suspended and otherworldly: a protein scaffold of a human heart, the possible future of organ transplantation.

Screen Shot 2018-12-14 at 2.33.16 PM.png — Photo by Harald Ott, MD

“This image from the Ott Laboratory for Organ Engineering and Regeneration at MGH shows a human heart in the process of decellularization––the cells are removed, leaving behind a protein scaffold. This experimental process may be an alternative to traditional organ transplantation in the future. By using the donor organ’s scaffold and seeding it with the recipient’s own cells, the new organ could overcome the risk of the recipient’s immune system rejecting a transplant.”

A miracle, a dream. Science offering so much hope and yet deepening the mystery. Yes, the mechanical function of the heart can be reproduced and genetic manipulation is advancing, but what of consciousness, emotion? The seat of the soul? Where is all that? The source of the pain of grief.

Two years. Impossible.

I have not written here since July because I have been obsessively writing the book. My goal was to ‘finish’ by today and I’ve done that. I even had the pages printed and bound last week, so I could edit with fresh eyes. Here it is, sitting on Caitlin’s desk in her apartment. The photograph on my computer is from Christmas Day a few years back.

It will be important for me to get this book of my heart out into the world. I haven’t yet figured out how to describe it––the word memoir is too vague and ineffectual. I need to come up with a descriptive sentence or two that will convey all that I hope the book will deliver to readers.

Yesterday, my friend Diane wrote and said she was finally making a print of her favorite photo of Caitlin. Andrew took it one day in Frick Park in Pittsburgh. Caitlin told me, “We must look insane out there on the trails, the wheelchair bouncing all over the place, but it’s fun.”

Diane: Mare she was such a BAD ASS!!!
I loved that about her.
That’s what the picture depicts for me. All that she was inside.
Strapped to oxygen,
Hiking out in the woods,
resting in a place that in another life
she could have built or resided in,
smiling, living in the moment with grace and humility all the while being a BAD ASS❤️

“I’m baaaad Kitten,” she liked to say, with a bit of a cackle.

I’ve been looking through old texts and the uplifting thing about them is that as I read them, I am ‘in the moment’ again and she feels very present.

11/19/2008
Caitlin: i am try try trying not to listen to Xmas music on the radio
but my persistent Christmas spirit is just bursting!
and i feel like if i keep it locked in any longer i am going to have a mental attack, cover myself in lights, and dance around the streets
thanks for the hat and gloves
Maryanne: hahaha
go ahead and listen
what hat and gloves
Caitlin: the ones you are going to buy me at j crew in about an hour
Maryanne: haha. okay merry christmas
Caitlin: thanks!

12/21/2009
Maryanne: happy balls are here
Caitlin: yes!!
Maryanne: i bought some wasik’s chutney spread and some cheese for christmas
Caitlin: NICE
Caitlin: oh i wish I’d known you went there
Caitlin: this is not good – i am being overly flattered. right now (X) and (Y) are both gchatting me telling me how beautiful i am
Maryanne: hahahha
Maryanne: what would you have liked at wasiks
Caitlin: (X) texted me last night “looking at your fb pics. you are beautiful”
Caitlin: and now he’s going on again
Caitlin: umm, CHEESE
Caitlin: salami
Caitlin: pate pate pate
Maryanne: I can go back.
Maryanne: oh this pup ! is so cute. he’s on my lap looking up at me.
Maryanne: oh i have to go make the cookies……aaaah i wish someone was here to talk to me
Caitlin: i wish i was there talking to you and making cookies
Maryanne: i wish you were home.

These past 24 months have been tough, but Caitlin was tougher and she’s our example. She gets us through. Nick is busy with new projects. Andrew is teaching in Maine. Katie and Alvaro have moved to Spain for a couple of years. Sinead has moved back to Ireland, but continues to practice in London, part-time. Jess continues to raise construction funds for the Leo Project in honor of Caitlin and has raised enough to break ground on the land she purchased in Kenya! Thank you so much to everyone who has donated.🙏🏽

In case you missed Jess’s announcement: “In December of 2016, Caitlin O’Hara died. She was thirty-three years old and my best friend. When I spoke at her funeraI, I promised that I would do something extraordinary. I promised that I would make her proud and I promised to keep her light and her spirit alive. Because of my own health situation, it took time to put everything together but – despite delay – I am proud to introduce The Leo Project in honor of Caitlin E. O’Hara.”

She is in Mexico for Christmas and writes, “Today, I’m going to go from Spanish colonial church to church and light candles for my buddy.”

Nick and I are going to go see Bohemian Rhapsody. ❤️Freddie❤️ These are the days of our lives.

I will end with a letter Caitlin wrote to her friend Renu, someone who had a successful transplant but certainly went through her own hell beforehand. I posted this once before, but such wisdom can always bear repeating. ❤️

“The moments when I have felt most free, most OK with what is happening, and least anxious, have been those moments where I am able to let go and surrender. Interestingly, those moments seem to work in tandem with my faith in myself. I know I can trust myself to get through something, to hold on, and ultimately I can just let go of the rest. I guess since we have no idea where we come from, and where that strength comes from…that true belief in yourself and your intent to be a good person is sort of divine in itself, no more or less divine than believing in something someone else told you to believe in.

I have always believed in goodness and I know a lot of people say that, but it does feel undeniably essential, and I don’t question it. As humans we somehow know that we should aim to be good, and where does that come from. ? If I can follow the fact that I can trust in the importance of goodness, then I can maybe trust that goodness will come of goodness…. if that makes sense. Kind of like karma points. I have never felt like “why did this happen to me,” as I am sure you haven’t either. It isn’t even because of some virtue that I feel that way, it just has never occurred to me to be “pissed off” about my lot in life, or to think that there was some unjust reasoning behind it. Instead I honestly feel lucky sometimes that I have gotten to feel and experience things that others have to struggle longer and harder to learn.” –Caitlin

Caitlin and her dear buddy Kenley, Christmas 2012

I post occasional Kitten photographs and words on Instagram, and anyone is welcome to follow me there. My name is my own: MaryanneOHara

–To follow this blog, click +Follow, down to the right, and enter your email address to be alerted to new posts.

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.

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.'”

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

: 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

11d073fc-2938-4617-8108-d04211ab92a1 — 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.

ART ON THE TRAILS opened last week.

IMG_0797-1 — Hand-carved stone, barbed wire, paint

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

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. !

: BIG KITTY, Mark Wholey

To visit, refer to this map and parking directions.

“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 site: In 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).

LRG_DSC00524 — Our magical workshop space at Le Sirenuse, Positano

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.

–Maryanne

To follow this blog, just click +Follow, down to the right, and enter your email address to be alerted to new posts.

FEBRUARY 8 — St. John Onward

I haven’t been blogging because I am focused on writing “the Caitlin book,” but we are on our family’s beloved island of St. John right now, and it seems a good time to say hello.

In 2014 (4 years ago, how can that be??), we had a big trip to St. John planned. I had rented our favorite villa. It sat on a hilltop looking down over the Caneel Bay resort peninsula. These photos really do not do credit to the view.

Andrew and Katie and Alvaro would be joining us. We had “boat day,” our favorite day of vacation, all booked with our captain, John Brandi.

On Christmas Day, as Katie and I talked in our hyped-up, excited way about the trip plans, I remember reading Caitlin’s face. She knew, as she would later tell me, that things had changed irrevocably for her, that there was no way she was going to be able to go. I remained in desperate denial for a couple of weeks but at one point, I said to Katie, “She’s either going to get better, like she always has, or we are entering a whole new place with this disease.”

A year and a half later, I wrote:

We are still waiting. There is that hope that a year from now everything will be normal again, or better than normal. St. John seems like the paradise it’s always been, even more so now that it is out of reach.

Everyone knows how much we love St. John. The highlight of our trips are always our days on the water, zipping around the BVIs. Over the past decade, we always went with our favorite captain—the vivacious, enthusiastic, safe, and professional Captain John Brandi. John and his wife Sue had long dreamed of retiring to St. John, and when they moved down from Marblehead in 2005, they launched Palm Tree Boat Charters. Canceling “boat day” was without a doubt the most depressing part of canceling our annual trip two winters ago, when Caitlin first got sick. And then late last year, a startling post appeared on our Facebook feeds: a sudden announcement, by John, that “due to health issues,” he was selling his beloved boat.

It turned out that back pain that had been niggling at him all year was actually cancer; the world lost him last week. The outpouring of sorrow on St. John has been both wonderful to see and terribly heartbreaking. Everyone loved him, and of course, everyone’s memories of him are wrapped in their own memories of happy, happy days. As I’ve cried for him, I know I’ve also been crying for myself. Some days are just well and truly over, and there’s nothing to be done about that, except to say “onward,” and make these new days the best they can be.

Godspeed, Captain Brandi.

Last winter, Nick and I could not yet bear the thought of visiting St. John, but this past summer, we decided we would go in January. In early September, I began looking for a small villa for the two of us. I planned that we would spend part of the vacation in a villa and part at Caneel Bay. I’d only begun my research when the hurricane warnings started. Then Irma hit. And a week later, Maria. Two Cat 5 hurricanes that tore through these islands, sucking away every bit of vegetation.

That house I loved? Roof ripped off, the insides destroyed:

A couple of restaurants we’d been visiting since the 1990s? Flattened. Gone. Caneel Bay was closed, with no opening date in sight.

With such a huge recovery effort, there seemed no possibility of us going, so we didn’t plan to. But recently, friends who live here urged us to visit. “We are getting back on our feet. The beaches are still beautiful, restaurants are now open, there are places to stay! We need tourists/visitors/customers!”

So we are here. Our longtime island friends Delbert & Delrise are hosting us in their beautiful 8-unit vacation-rental condominium building on Turner Bay, Seashore Allure. I’m listening to the tranquilizing crash of the ocean as I write this.

Every single meal we’ve eaten has been extraordinarily good. Maybe because the chef/owners are actually cooking every night…. I don’t know. But La Tapa, Extra Virgin, The Longboard, The Terrace, Greengos, Cruz Bay Landing…all are consistently fantastic.

Our friends Ruth and Ron, who own the great little shop St. John Spice are back in business, resilient, like the rest of the locals who love this island. We had dinner with the lovely Karen, who gifted us with a beautiful piece of heart-shaped coral for the mausoleum. Her Treetops B&B sustained very little damage and is welcoming vacationers again.

Every morning, Nick and I have hiked the Lind Point trail into Honeymoon Beach and had it all to ourselves for at least an hour. It’s like being back in the 1990s, when we first started coming here, when Caitlin was little and we fell in love with this place.

Nick has been taking pictures of the beautiful island stonework as he prepares to build the mausoleum come spring. He returned from a walk near the island cemetery one morning, enthusiastic about a beautiful tomb he’d seen. The stone is the classic St. John stone and brick combination, and he pointed out the beautiful blue glass heart.

Being here has been strange, sad, surreal, lovely. It’s weird to see photos of us smiling, when two minutes earlier we were all choked up. But that’s how it goes. It’s also been really good. Just this morning, we talked about how last March, we were at a hotel in Vero Beach, Florida, and it seemed like we were surrounded by happy families with kids and grand-kids, and it was all a reminder of what we no longer had. Here, as in California last month, we are reminded that we are not the only ones who’ve borne hardships, and that honestly does make you feel better… sad to say.

We rather bravely decided to do our own quiet little “boat day,” with Cleve, the sweetest guy and a really good captain. Local Flavor is his boat. We got a water’s edge view of so much of the damage. Gorgeous Caneel Bay looks like a place abandoned after an apocalypse.

Word is it will likely won’t reopen until 2021.

We headed over to Jost van Dyke, where the damage was extensive. Here is a picture from ten years ago, when we had lunch at Foxy’s Taboo with Kitten and Katie and Kate’s parents, two of our oldest and dearest friends.

Foxy’s Taboo, now:

For those who know Jost: Sydney’s harbor is trashed. Disappeared houses in one spot, untouched houses right “next door.” People are living in tents.

On Great Harbor, the sandy Main Street looks so bright, so exposed. Very few trees left standing. The roof and windows of the pretty little church were blown out, but the congregation has erected a tent and set up chairs and a pulpit there.

Vendors are open, selling water and rum punch and painkillers and chicken roti and Johnny Cakes. Original Foxy’s is in good shape. And this survived there:

Foxy is some kind of Trump supporter (yikes/eek/#toomuchrum) and wearing a Trump hat and pin, but he’s still singing.

We ended boat day, as we always have, on White Bay. A photograph of the Soggy Dollar was one of the first photos I saw, post-Irma. STILL STANDING, they had posted.

We knew they were open but weren’t sure what to expect.

It’s rebuilt and a bit roomier for the workers and visitors, and it looks great! They’re planting 100+ palm trees all the way down the beach and into the other harbor.

Jess’s sister Carly’s friend Annie is a manager at the Soggy Dollar. Her parents own the place. After Caitlin’s service, Annie arranged an “organ donor awareness” day there, on New Year’s, 2017. They used a photo of Caitlin and Andrew, taken there in 2013.

While we were there, we suddenly remembered that Annie was probably on the property. Nick went to look for her.

Annie is one lovely person. So warm and kind. We learned that her family lost her beloved brother CJ six years ago.

Her parents live on St. John and we hoped we would run into them, and St. John, being such a small island…well, of course we ran into her dad and other brother a day or so later.

As talk progressed, we realized that the beautiful tomb that Nick had admired and photographed was CJ’s, the blue glass heart one of the favors at his island wedding. Another coincidence, one of many.

RIP, CJ O’Connell and Caitlin O’Hara.

DECEMBER 20 — Impossibly, a Year

DECEMBER 18 — “God was in the room”

So it’s been a year since Caitlin’s transplant. A fact that’s as hard to believe as her absence.

This post from that day, if the lungs had come a month earlier, before the weeks on ECMO…. … too painful to think about, really.

So.

I’m going to let Caitlin’s words take over, with thanks to Kate S, an old friend of hers who has most recently, graciously, shared her correspondence. The “Caitlin book” that I’m writing has a lot to do with this search for faith.

Emails with Kate

can i ask you something personal? If you don’t want to answer I understand. I have never been that religious but i have always had faith. i hope that makes sense to you. as i get older i struggle more and more with the reality side of my brain and the side that wants to hope and pray for the best, and have faith. i am always so interested in how people like you — really smart people that is — stay so solid in their beliefs and faith. i don’t know, i guess i am just curious about it. then sometimes things happen that make me feel like i am more connected, and that it is possible. i’ve been trying this thing where i “dialogue” with my illness. it was recommended by an astrologer who did my chart, and it is something i kind of do a lot anyway but in a different way. its like visualizing sessions of going through your body and imagining healing. but this takes it a step further with actual talking to your disease. anyway i was lying in bed this morning doing that for like half an hour. andrew was there, he was like half awake, we were just laying around. anyway i never said i was doing that. then when he got up and was walking into the living room he just said casually “i feel like god was in the room this morning.” It was so odd, that is not a normal thing for him to say (obviously). It was just kind of cool.

i am pretty open about everything, but religion is one thing where I am both curious and less knowledgeable. There is so much craziness around religion, that I am always compelled by the smart and grounded ones who find their faith in it, like you. And there have certainly been times when I have reached for it (and it is christianity, because that’s what I was raised with, however weakly). When I was 11 I was very sick for a long time, and I had a hospital physical therapist who would come in and do chest pt (a treatment for CF). She would talk about God and Jesus, almost in an awkwardly preachy way…she was southern. But I was so sick and so detached from anything normal that an 11 year old kid thinks about, that I just fell into it. And she encouraged me to pray and so I did, and I prayed a lot all through my teenage years. And I can still remember her talking to me as I stared out the window and I can’t believe that was an 11 year old kid. It was like I stopped being a kid that year.

When I got older I got interested in reincarnation. Stories of children remembering details of lives that they couldn’t possibly have known, the idea that we are here to learn lessons in this life. Figure out what those lessons are, be good people, and evolve our souls. The idea of souls. It was fun to read about, yes, but mostly the ideas of reincarnation resonated with me. I was interested in the fact that most of the religions embraced the idea very early on in their inception (or so I have read), and even though now it is considered maybe “new age-y” it was in fact very “old age-y.”

When I was very sick that time, my mother had an experience of lying on the couch in our living room sobbing, just crying really hard. Thinking, how will this ever be ok. She said she heard a voice say clear as a bell “have faith.” She has told me this story lots of times since then. She says it was so clear she sat up immediately and stopped crying. Yesterday she bought me a card. She picked it based on the quote on the cover by Frances Hodgson Burnett (author of the Secret Garden) “Hang in there. It is astonishing how short a time it can take for very wonderful things to happen.” She came home and opened it to give it to me and inside it said “Have Faith.” She didn’t even know that, …how odd?! And wonderful.

Anyway — things like this, and the moment with andrew, are just examples of many validating moments I have had during whatever my spiritual journey is. They have made me believe that there is something there. Sometimes I am more connected to it, and sometimes I am not. Perhaps that is the drawback of not having a solid religion to keep you connected, to draw from when you feel like you are losing faith. I don’t know. This might all sound insane to you. I don’t want to think of myself as one of those people that everyone seems to be nowadays which is just “i’m spiritual but not religious,” because I think it is more than that. It is more than just liking the idea of something. I think you have to believe in the GOOD of something, solidly, in order to stay the course.

Email to Nick

So what I always loved about Early Christian art was that it was so …early. Really the beginnings of Christianity , and thinking about what that meant is neat for me. This was years before even the crusades, the first really violent time in the name of “Christ” (well except for Christ himself obviously ). So there was violence of course … In Rome and in the Byzantine empire. But Christianity hadn’t even reached a point yet where people were “fighting in the name of the Catholic Church” etc and things were still more modest.

You can see the change in how Christ is portrayed in the art in these small churches. He’s still a shepherd but he’s wearing roman robes and looks more regal. So it’s the beginnings of it…. But it’s unlikely that these religious people then were implementing awful atrocities on people

I think the area seems beautiful and peaceful. But also something I can’t really place, and don’t necessarily need to figure out. I just would like to go.

There is always going to be bad in the world. I think that is what makes being good so important.

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.

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 at Medium.com