I am as delighted as I possibly can be to announce that HarperOne will be publishing my memoir, the “Caitlin book,” otherwise known as LITTLE MATCHES, in April of 2021.
I began writing this book a little over two years ago with much encouragement from readers of this blog. Thank you. And thanks to everyone in my daily life, especially Nick, for the constant support and encouragement.
The past few years have not been easy. But with this book, our kitten gets to live a bit longer.
In the coming months, I will be sharing photos, book news, and tidbits of inspiration. To be part of that,
“I always pull back and picture myself in time and in space geographically. It makes me removed enough to ultimately feel that there is not much I can do to change the shifts of the world, but also inspired enough to think – what is my role in this lifetime?”
–Caitlin
Processing…
Success! You're on the list.
Whoops! There was an error and we couldn't process your subscription. Please reload the page and try again.
Over the course of writing my book these past two years, I asked the question that a lot of grieving people ask: “Does consciousness survive death?” It’s a question with no definitive answers, but what has really stood out to me is just how much research has been done by people of science.
One book that impressed me was “Surviving Death,” by investigative journalist Leslie Kean, a book that is dense with in-depth examinations of claims of various phenomena and includes 400 end-notes. Leslie also wrote the New York Times bestseller, “UFOs: Generals, Pilots, and Government Officials Go on the Record.” (Earlier this summer, you might have read that New York Times story about navy pilots and their observations of flying phenomena they could not identify. Leslie was one of the co-authors of the article.)
This past summer, I was working on final revisions of my book. One late night in June, I sent a little prayer into the universe before I closed my eyes. “Caitlin/ guides/ whoever” I said, “if you’re really out there, please send me a sign that I’m on the right path with this book.”
In the morning, I checked my email and this was the first thing I saw.
I didn’t remember signing up to receive notifications from Laura Lynne Jackson, and had never before received one, but I knew who she was–a certified, highly respected medium who is so in-demand that she closed her waiting list once it became years long.
I’d read Laura Lynne’s first book, an autobiography called “The Light Between Us,” and found it to be well-written, intelligent, enlightening, and comforting. Now she had a new book out called “Signs.”
I went down an internet rabbit hole that week, and saw that both Leslie and Laura were going to be part of a panel exploring the science of consciousness and the afterlife at the Omega Institute in upstate NY in September.
The panel piqued my interest. It would include two scientists I’d read about: Julie Beischel, Ph.D, and Mark Boccuzzi–a husband-and-wife team who run The Windbridge Research Center in Tucson.
When I eventually publish my Caitlin book and speak to its many themes, one topic I want to address is the current state of research in the field of after-death studies.
So I registered for the three-day Omega conference, which occurred over this past weekend.
Friday was a gorgeous late summer day and I really didn’t feel like leaving home. I’d recently been to some very disappointing events, and I really hoped this was going to be worth my time. As I drove west on the turnpike, I decided to talk to the universe again. “I really want this panel to be useful,” I said. “I want it to help me be able to spread some of the messages in my book. Spirit guides, Caitlin–if you’re really out there, please be in Rhinebeck with me.”
After a little while, I saw that a ten-wheeler up ahead of me had a big image of a bear on it. As I passed it, I saw that it was a logo for a company called Brown Bear Moving Company, which I’d never heard of.
Huh, I thought. I’d once been told my spirit animal was a brown bear and even though I have no idea if spirit animals really exist, the idea of the bear always felt right. Caitlin had even needle-felted me a little brown bear in 2014, who sits, always, on my desk. I am looking at him as I write. He’s my little mascot.
About an hour later, I pulled into a rest stop out in western Mass. When I came outside, I stopped short. The truck was parked, long-ways, right in front of my eyes.
Okay… Maybe it was a sign, a good one.
When I arrived at Omega, I parked my little car which I call my snazzmobile, and which looked ridiculously snazzy in that rustic environment. I also had an embarrassing amount of luggage for two nights (But it was supposed to rain on Saturday! And my cabin was in the woods and would probably get cold at night! And I am currently taking a class and might have needed my computer and books! And I’d read that their linens left a lot to be desired so I’d hauled my own!)
I checked in and made my way to my little cabin, past smiling, relaxed, natural-looking folk. A young woman with flowers in her hair and around her neck. A man on a porch playing a guitar and singing.
I felt out of place and texted a friend. “I don’t fit in anywhere,” I wrote.
She wrote back: “You don’t have to!”
So simple, but revelatory. I don’t have to fit into any neat slot. I never have.
✨ The Panel
LLJ, Leslie Kean, Dr. Beischel, Mark Boccuzzi
The panel met over three days and was as informative and well-run as I’d hoped it would be. Not one moment dragged. The Windbridge people talked about the challenges of working as scientists in a field that lacks regulation and about their efforts to run lab studies with repeatable results, to publish in peer-reviewed journals. They emphasized that their aim is to “reach the people who would approach through an intellectual door.”
They spoke of the complications of proving theories of consciousness–materialist, brain-focused versus non-local theories. They reviewed evidence for survival of consciousness obtained from remote viewing research. They pointed out that part of the problem of testing, which their experiments must account for, is the existence of psi capabilities (as in perhaps a medium is telepathically obtaining information from a living person or other source as opposed to from a discarnate).
What was clear is that many many people have experienced unexplainable phenomenons. “There is a whole suppressed world out there,” Dr. Beischel pointed out. “People with experiences they feel they can’t talk about.”
Leslie Kean spoke in detail about children with provable memories of former lives (which the University of Virginia has been studying for decades), after-death communication experiences, and mediumship readings.
Julie and Mark described how they developed a protocol to test mediums through a five-fold blind process.
And Laura Lynne Jackson was there. It was clear that since her newest book hit the New York Times bestseller list this summer, a lot of people were there for her. She explained that she rarely does group (gallery) readings, and only does three private readings a week, because for her, doing a reading is like taking the LSAT and running a 5K on the same day. Mark pointed out that she would not be giving any private readings but at the end of the session on Saturday, she would do a gallery reading for one hour, and on Sunday would lead a guided meditation for all.
As far as mediums go, since Caitlin’s passing, in addition to the signs that come to me nearly everysingleday, to the point of comedy, I’ve had a couple of experiences with mediums that were powerful and remarkable (Karissa Eve D. & Sirry Berndsen). I also happen to have someone in my own family, Caitlin’s Irish cousin Sinead, who has clairsentient abilities and has exhibited them since she was a child. I am fortunate to be able to know, for sure, that such people exist, even if I can’t explain it.
I have also come to believe that, like all things human, some mediums are really really good at what they do. Others wish they were so good. And some don’t even try. They cheat. No question, there are frauds out there. There are people on YouTube who will gleefully explain how they have duped people. A recent New York Times article examined a teams of professional skeptics who debunk the fake psychics and mediums they call “grief vampires.”
But to date, two institutions in the United States have laid out protocols for blind-testing people who identify as psychic mediums: Windbridge and an organization called Forever Family Foundation, a non-profit organization “whose aim is to further the understanding of Afterlife Science through research and education while providing support and healing for people in grief.” From the Windbridge site:
Laura Lynne Jackson is one of the few mediums on those lists. In fact, she’s on both lists. She has donated a lot of time to grieving families via the Forever Family Foundation.
My gut sense told me that Caitlin would never come through a group, gallery-style reading, for two reasons. 1) Caitlin was essentially pretty private 2) She would be all about letting someone who might be more in need get one.
Plus there were 80 people there and they all wanted a reading.
But as the weekend progressed, even though I knew it was unlikely that I would get a reading, I increasingly really wanted one. On Saturday it was raining and as I looked out at the leaves, dripping with dismal rain, I thought, Caitlin, you need to come through and validate this book for me. Just this once. After all, I’m grieving as much as anyone.
Saturday, 4pm, arrived. Time for the gallery reading. Laura Lynne began to speak. She is intelligent and very well-spoken, a former longtime high school English teacher who is comfortable and in control in front of a group, emitting an energy that is focused and warm at once.
First she spent about 15 minutes describing how she worked–explaining that she has no control over who comes through and that when she’s pulled in one direction, it’s not a mistake, it’s not meant for someone on the other side of the room. She emphasized that if a person didn’t get a reading, it didn’t mean that his people didn’t love him, or weren’t there. She said we are all capable of communicating on our own, if we are open to it—she was adamant about that, and explained that she would share some techniques to do so the next day.
Finally she began, and did a very good reading for one attendee, which took about 15 minutes. Then she went to the very back of the room and spent another 15 minutes doing another powerful reading. Both were obviously very healing for the people involved.
It was now twenty minutes to the hour’s end and the idea of me getting a reading was now really a long shot.
But I did.
She turned and walked down the center aisle, her arms outstretched, hands clasped, fingers pointing in my direction. She said it was someone’s child, female, she was being shown a crab, that might mean Maryland? I shrugged. It might have been me, it might have been the woman behind me who had also tentatively raised a hand. Then she said, “SpongeBob?” and I started to laugh. SpongeBob was a very big long-time joke between Caitlin and me, ever since we saw Bob l’eponge movie posters all over Paris in 2004.
Laura says she “sees” on screens inside her mind and although she was looking at me, her eyes were focused inward. Then she came around and stood in front of me.
We weren’t allowed to tape the gallery hour, for obvious privacy reasons, but two very kind strangers took notes for me during my reading.What they and others remarked on, later, was how Laura’s manner transformed, and in an astonishing way.
“Did that seem like your daughter?” one woman asked. “Because her whole manner changed!”
“I felt like I saw your daughter, like now I know what she was like, how wonderful she was,” another woman said.
Laura did seem to embody Caitlin. The feisty, funny, “okay, I’m here to take charge” Caitlin. In fact, as Laura relayed information to me, she used the same mannerisms and way of speaking that the other medium, Karissa, uses when “Caitlin comes through.”
✨ ✨ ✨✨ ✨ ✨✨ ✨ ✨✨ ✨ ✨
✨ The Reading
Here are a few of the things Laura Lynne said:
She’s very very intelligent. Very high level. Classy. Impeccable manners. Very high level. And this is not bragging.
She has a deep appreciation for art.
She speaks 3 languages.
There’s someone with her… very old. A family member. An LN name? (I say that Caitlin’s grandmother Ellen, nicknamed Eileen, just passed in August.)
You’re brave. She’s watching you. You are challenging yourself to be open. You’re opening your heart and mind but you’re a critical thinker. You’re analyzing all this–she knows this medium thing is out of your realm.
She would not normally come through in a group like this. And she’s saying she does not need Laura to come through to you. She’s doing Laura a favor by coming through. (Laura laughs.) You can do this yourself yourself, you know. You’re a medium.
This will all be known. You will write about it. You’re here to get her message out.
You have a plan. Something will come from this. Something you’re working on.
You will be interviewed on TV. There’s more to come with this.
She’s interested in poetry, literature.
She has 2 degrees? (She had plans to study for a master’s, I say.)
Well she’s done it on the other side. We all have jobs on the other side.
She’s thanking you for taking care of her. She had an illness. A progression. Does this make sense?
I love you. This is not goodbye. Your soul taught her soul a lesson. (Laura’s eyes well up at this point, and she says she does not usually cry.) She did suffer at the end and you might ask why did she have to suffer? But at the end, she let go of her pain. There was beauty at the end. You taught her a lesson of unconditional love. And that took so much strength.
Okay, she’s saying she’s done now, and there’s someone she wants to thank.. a J name. And again, she is saying I’m lucky she came through.
At this point, Laura sort of strutted toward the podium. “And now she’s doing a mic drop.”
Laura mimicked the mic drop and everyone laughed.
✨ ✨ ✨✨ ✨ ✨✨ ✨ ✨✨ ✨ ✨
A funny thing is, I have an emoji Caitlin made of herself doing a mic drop. I even used it on this blog once.
SO!
That was really good. Felt good. It was now five o’clock and as I walked back to my cabin, talking to another woman, we encountered a groundhog. Right by our cabins. Not even budging when we got close. I started to laugh. “Groundhogs are very significant in our family,” I said. “I’ve never been so close to one. This must be a sign?”
The groundhog stayed right there, at our feet.
Later, I ran into Laura at the bookstore. I didn’t want to be one of those people who crowds her but I did say, in passing, “Thank you again, that was great.”
She said, “Can I give you a hug?” She hugged me and said, “Your daughter’s on a mission. She’s got big energy.”
Certification takes resources that are in short supply, and neither organization is currently testing mediums, so although not being certified does not mean that a medium is not legit, do your research if you book a reading somewhere.
You may be tempted to not use your real name (and I had suggested this in an earlier version of this post), but the good mediums recommend that you do use your real first name–no last name needed–because it can distract them when there’s a nagging sense that this has happened. Sinead has said this same thing–that she just needs a first name.
Also, be sure to use an email address that, while certainly can be non-identifiable, is one you check regularly so they can contact you if there’s a schedule change. That way, you can keep the reading as blind as possible and help to allay your doubts or skepticism.
Also, Skyping and phone calls work as well, and often better, than real life. Laura Lynne says that she prefers to do readings on the phone with her eyes closed.
✨ Old emails from Caitlin:
8/13/2014 – Subject: Definitely worth the money
11/19/2014 – Subject: All I want for Christmas is this
Today, Nick and I are on our way to………Pittsburgh. Yes.
But first, yesterday.
Yesterday, Jess, Nick and I had grandstand viewing passes at the Boston Marathon Finish Line. We cheered the finishers along with a mother and her two adult daughters–BAA volunteers–who fell in love with Jess. When Jess said she wanted to try to run the last mile with Andrew, whose progress we were tracking, they wished her luck.
Andrew in Ashland
A mile from the finish line, Jess somehow managed to talk the policemen into letting her through the security barrier and she burst onto the course as Andrew approached. BAA course pictures show her exuberance, and they were both all smiles as Andrew crossed the finish line.
That was Andrew’s first marathon and he completed it in great time despite a recurring quad problem that hit him around mile 18 and which he needed to pop in and out of med tents to treat.
This past Thursday, Mallory Smith’s mother Diane spoke at Grand Rounds at Brigham and Women’s Hospital. Her slideshow presentation on Mallory’s posthumous memoir, Salt in My Soul, An Unfinished Life, was brilliant and highlighted many of Mallory’s key insights about how medical professionals might improve patient care.
After age 18, Caitlin was always hospitalized at the Brigham. Before she became sick enough to need a transplant, I volunteered once a week there. I know that hospital very well and as I walked into the main lobby, it truly felt like I had JUST BEEN THERE.
Yet 5 years had passed. How? How does time mess with your head so much? It’s been 5 years since Caitlin was actively listed for transplant and that fact makes my head spin.
Life disappeared right in front of our eyes.
I felt quite fragile and so visited the little chapel for a bit, then walked down to the amphitheater for the talk. Nick and Jess had not yet arrived. In came Ahmet Uluer, Caitlin’s beloved and longtime Boston CF doctor. It was hard but good to see him.
Here we all are in the audience. Ahmet is talking to Diane, Nick behind him. Jess. Me.
Diane left Boston for Pittsburgh, for more speaking sessions. She is still there, and tonight our friends Mary and Ralph will host an event for Mallory’s book.
At first we didn’t think we would go. I, especially, wasn’t sure I was ready to be in that place again. But Mary reminded us of all the good that still remains in that city for us. She reminded us that so many people care about us. Jim Stanley, the driver who recorded The Sound of Silence for us, will pick us up.
So. We are off to see what awaits us. And Nick and I will be hosting an event ourselves for Mallory’s book, on July 10, and many of you will be there and this is how life goes on.
♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥
For those who love the little signs ♥💛
Pre-race dinner
–To follow this blog, click +Follow, down to the right, and enter your email address to be alerted to new posts.
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.
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 Center, rising
Future stage for performances
Side view
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.
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.
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.
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.
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.
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
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).
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.
In London
–Maryanne
To follow this blog, just click +Follow, down to the right, and enter your email address to be alerted to new posts.
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.
Caitlin & Andrew, 2013
One of many boats days past.
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.
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
I
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.
II
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
A Ravenna church she longed to see
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.
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.
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.
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.
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:
9 Lives Notes 