I’ll just say this: as bad as 2020 was, for us it was nothing compared to 2016.
I cannot believe it’s four years. Four. How? The knowledge makes my head spin like a small planet, like its moon — time moving inexorably forward forward forward yet tricking you with its revolutions, its constant circling back to the repetition of seasons and traditions. The older you get the more you realize a year is really nothing. So four of them isn’t much.
And yet it is.
Somehow, in these four years, I wrote LITTLE MATCHES and a team of wonderful people turned it into a thing that can exist in the world without me. This book is going to LOOK the beautiful way I envisioned, and I’m so happy to report that it is also going to have exquisite endpapers, a photographic tableau of objects and imagery that I put together and am excited to share. Here’s one heart-shattering, wonderful piece of it:
Photo by Laura Lewis
I feel so lucky.
Also, not lucky at all.
I think many of you, after making it through this year, understand what I mean. When I researched the 1918 pandemic for CASCADE, I realized that humans have to deal with big ones every hundred years or so, and that we were due. I waited for it to arrive, terrified for Caitlin. Turns out, she would have been well-equipped, in many ways, to deal with it. It’s clearly been harder for people who don’t normally have to worry about their health.
To everyone who experienced a truly terrible 2020, I feel your pain and sorrow and I am so so sorry.
NEWS
JESS
The amazing JESS opened The Leo Project resource center in Kenya last January, and almost immediately, COVID required that the project temporarily pivot to meet the immediate needs of the community. They set up hand washing stations, made face masks, distributed emergency food supplies, set up an e-learning portal, and distributed sanitary pads and reproductive health materials.
The Leo Project’s next undertaking is The Caitlin O’Hara Community Health Center, created in response to urgent community need. The clinic will sit adjacent to the Resource Center and will focus on maternal and child care, reproductive health, and mental health services.
Jess has assembled an advisory board compiled of doctors from around the world and is working in partnership with the Ministry of Health in Kenya. Boston-based Build Health International is overseeing plan and design. She has just started her fundraising efforts to bring these critical services to the community. Big donations are always welcome, of course, yet so are the smallest. She now has 501C status and can use a fundraising platform that allows people to make monthly gifts, however small. 100 percent of every donation goes directly to Leo Project programs.
NICK
NICK is healthy and busy. He’s got 11 acres behind his building and spent this past spring and summer having his men begin to build a trail he calls THE FORGIVENESS, LOVE, AND KINDNESS trail. It meanders through the woods, along a babbling brook, for a good five minutes each way He has installed the MY HEART HURTS stones there, as well as some other stone wonders and an entrance that requires you to step up through an arch, and then down onto the path. Magical and it’s far from completed. You can check out the work he does in everyday life, all of it creative, permanent, and beautiful, at oharacompany.com
The Forgiveness, Love, and Kindness Trail
ANDREW
ANDREW is doing really well and we’re going to distance-see him this coming week.
BOOK TRAILER VIDEO
My wonderful brother Michael Bavaro always helps me with the film/drawing side of things. He created a short book trailer video for LITTLE MATCHES which you can watch here:
I miss Caitlin so much. The last few days, my eyes have been a faucet. We’ve rented an apartment in Maine for a week, a place she loved and where she likely would have settled. I keep walking past the bedroom I know she would have chosen and I can almost see her in there, all her stuff strewn about. I can hear my exasperated self saying, “Can’t you please keep this place tidy?” And her response: “Oh, Mom just shut the door.” Makes me laugh and cry at once.
That complicated reality is a reflection of why my memoir has the perfect sub-title. Grief AND Light. I can thank my editor for that one. Life’s not all good but it surely is not bad.
Please pre-order LITTLE MATCHES. Please tell people about it. Please support The Caitlin O’Hara Community Health Center and The Leo Project. My dearest wish is that someone with a big philanthropic heart and pockets will read LM and be inspired to be an ‘angel’ to Jess and the project.
Here’s to light ahead. It’s coming….. Tomorrow is the winter solstice. It’s also the “Great Conjunction” of Saturn and Jupiter, when they will be so close in the sky that they may appear to be a single bright star to some. Look for them an hour after sunset tonight and for the next few days, over the southwest. They last appeared to be this close together to earthlings on July 16, 1623. How wonderful is that, to think about?
I will leave you with these words from Caitlin’s Christmas post of 2015:
PS, Live update: Big flock of birds settling in the tree outside our window here in Portland. And a cardinal just flew right up to a branch near my window. ❤️
Three years ago today, on the 9-month anniversary of her lung transplant, during a walk around Walden Pond, I decided to start writing what I called “the Caitlin book.” I wasn’t even sure what kind of book it would be, or if I could manage to write it, but it seemed a worthy goal, and I had no idea what else to do with myself besides lay down and die.
I wrote ploddingly, like a zombie at first, and then as if in a fever. It took two years. I was fortunate in that it found a very good home, very quickly, last fall, with HarperOne, a visionary and soulful house tucked inside the busy and sometimes spirit-crushing world that is New York publishing.
Today, three years later, I can announce that the book is well into production, with a cover and beautifully designed pages. It is now a book that can exist in this world without me, and there’s a very large measure of relief in that.
People have been asking when they can pre-order and there are two answers: right now and thank you. Pre-orders help books so much, you may have no idea, but it’s the age-old story: the more interest there is in something, the more interest there is in something, and the more popular and supported that something becomes. I do believe that this book is very worthy of support, so thank you for pre-ordering, and sharing this page with others, and gifting it, and talking about it.
The book is about my search for revelation and meaning, for answers to the big life questions: Where is she? Is she? Is there more to life than this life? Does consciousness survive death? Does my existence have any real purpose? Does anyone’s?
I wrote it, but some of it almost feels divinely downloaded. And Caitlin’s old-soul wisdom permeates the entire book, of course.
People ask about the title. LITTLE MATCHES is a riff on a few lines from a favorite book of mine. Those two little words —”little matches”—represent all that the book is to me, and what I hope it will be for others.
Part 3
Chapter III
“What is the meaning of life? That was all — a simple question; one that tended to close in on one with years. The great revelation had never come. The great revelation perhaps never did come. Instead, there were little daily miracles, illuminations, matches struck unexpectedly in the dark; here was one.”
Virginia Woolf, To the lighthouse
When you write a book, you also end up writing a little script whereby you distill its essence so that you can talk about it at events and such. Here’s what I wrote for the preface and what I know I will say over and over and it will always be a truth: I am not the first person to have lost what was most important to me. Humans lose every day, and lose hard: children, beloveds, sacred homelands, freedoms. LITTLE MATCHES is for anyone who loses hard and asks, Now what?
I thought that losing Caitlin taught me all there was to know about love and loss and “you don’t know what you’ve got till it’s gone” but with my mother newly departed from this earth, I’m reminded that life is constantly teaching, and my faulty human self always has more to learn.
The practical side of my nature has often been bewildered by the fact that after someone’s death, the people closest to them seem to develop amnesia regarding who in fact the deceased had been. Before my father died, my mother, who had been divorced from him, always referred to him as “your father.” After death, he became good old “Dad.”
I saw this happen with others. Friends and the parents they’d never really gotten along with. Exes. Although I certainly agreed with recognizing the good in a person, I was perplexed by the all-over coloring in of the negative.
For four months now, we knew our mother could pass at anytime, but it was only during her last days, when she was definitely in transition, that the alchemic something happened inside my own brain. We were finally allowed to visit her in hospice, where she lay uncommunicative, and as I held her hand, I could not see anything but the positive in her, and wondered why on earth I’d ever been bothered by the negative.
Later, I sat at my desk to write her obituary. One’s final day is such a punctuation mark, the arc of the life laid out, with all the good (and the generally understandable reasons for the not-so-good) there in plain sight, forcing us to consider, what really matters in the end?
Some people seem to know what really matters from birth. Caitlin was one. And I have siblings and nieces and nephews who are others.
My niece Jillian summed up “what matters” very well in this Instagram post, and I would like to share it.
This light crossed over today, on her way home to join the ancestors ✨ . In March, as covid came to Maine, we got a few hours notice that the facility she was receiving end of life care at would close to visitors for the foreseeable future. I was the only one who could drop everything and get there that day to be with her. I asked her what she wanted from the outside world. Pink lipstick she said. That sums up her personality exactly; truly a Sagittarius, bucking all social norms, always looking for an adventure… . So I bought pink lipstick and soup from a local deli and spent a few hours with my Nana while I could. I was afraid I might never get to see her again. I tried not to show it. She told me that day that she had never thought she’d die, but she realized now that it was happening. . For the last three months we have only been able to see her through a glass door, talking on speakerphone. Every single time was painful. I kept feeling like she was holding tight, waiting to go. Waiting for covid to pass first. . Then on Wednesday, because she had transitioned, I was able to go see her. After months of seeing that building as an impenetrable fortress, I found myself casually walking through it’s doors. I put on my medical gown, my mask, and went to find my grandmother. . What an honor, unexpected relief and joy to be with her as she died. To massage her wrinkled hands, her shoulders, her arms. I traced her face with my fingers the way she traced mine as a child, something I always loved, something that feels so gentle and loving. .
. Earlier that day I had an ancestral healing session. One of the many exchanges I’m in the midst of for the ancestral healing practitioner training I’m in. In the session my ancestors showed me the way she was being held, surrounded by love, nurtured… They showed me the healing taking place between her and her many years deceased mother. They showed me how well received she would be.
Humans are complex. We have as many faults as we have strengths. But at the core, this is a woman who lived and died with her heart intact. And for the example, I’m truly grateful.
These past months, I’ve been grateful to have siblings who are people of good character. When our mother went on hospice care in April, and with all of us unable to visit, we began lighting candles and texting photos of them to each other every night at 8pm. It became a lovely ritual––the buzz of the phones, the screens full of light. I shall miss it.
On New Year’s Day 10 years ago, I woke up to a text from Caitlin.
She was still living independently and rarely talked about long-term survival, but transplant was looming. Transplant was on her mind, and it showed in that confession of uncertainty tucked inside the bigger message of optimism and love.
She did see that blue moon, in Pittsburgh five years later. I write about it in LITTLE MATCHES:
We watched it on her birthday, from our window high on the 15th floor, and here it is, still existing inside my phone: the full moon shining through a band of bright clouds, the lights of Mount Washington reflecting in the black Monongahela River below. Caitlin stood in front of me and the feeling then was like the feeling now, like I am existing inside multiple dimensions as I recall how I recalled that 2010 text and our first, frightened trip to the city where we had come to find ourselves trapped inside time, waiting.
Blue Moon, 2015
Time. I’ve always had a complicated relationship with it. It’s always hurting my head. I’m the kind of person who constantly thinks, “One week ago, __ happened,” or, “Exactly two years ago on this day, we were ___ ” or “How can it be ___ since _____, when it feels like maybe 3 weeks ago at the most???”
I cannot believe it is 2020. That it was five whole years ago that we had just moved to Pittsburgh and were saying to ourselves, “In five years, this will all be long over…”
I amused myself yesterday by making some illustrations of how muddled and partially erased the last decade feels.
At Christmas that first year in Pittsburgh, I put a small rubber ball, printed with the map of the world, in Caitlin’s stocking.
“After transplant, the world will be yours,” I said.
She dared to hope for the freedom to travel easily, to go to Africa with Jess. Jess is there now, officially opening the doors of THE LEO PROJECT IN HONOR OF CAITLIN O’HARA on January 17th. She’s got a bunch of friends with her, to celebrate her incredible accomplishment. I don’t think her friend Perry Tyler will mind if I share a couple of her stunning photos. I’d ask, but they are all climbing Mt. Kilimanjaro as I write…
The world is so big and beautiful. What do the next ten years hold for you?
For me, with LITTLE MATCHES coming out about a year from now, I almost feel like, “my work here is done.” But I will spend the coming months preparing for publication and planning how I will talk to audiences about the many topics the book speaks to.
I can’t wait.
–Maryanne
“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
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
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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
When I was pregnant and my baby was due mid-summer, I wanted a July baby. July seemed to be a vibrant month: warm, lush, expectant! August seemed so enervating–I associated it with long, bored days of childhood, when all I seemed to do was lie about on stiff, dried-out grass, listening to the drone of insects and distant lawnmowers.
I spent every minute of July 30 in labor and when Caitlin was born an hour after midnight, I sang that old ditty to myself: “30 days hath September, June, July and November,” and thought, “Darn. August 1.”
It wasn’t until well into the afternoon, when a hospital administrator brought in the birth certificate, that I realized we were still inside of July and that I had my song and calendar all wrong.
I was delighted. It was like being given a gift. The gift of an extra day.
Forever after, for me, the days around July 31st swam together and became Caitlin’s birthday days.
This year, I spent much of the 30th organizing bookshelves and found a little gift inside a book from long ago.
❤️
Yesterday, I felt pushed to write a post but I also felt too lethargic and sad and also happy to receive so many messages that made me smile. The birthday memories, at least, are all happy as opposed to that other anniversary which I will dread for the rest of my life.
Today seemed like the best day to do a post. So here I am.
As for updates,
I know I said I finished the book months ago, and I did, but “finished” means I finished writing it, not revising and perfecting, which is quite necessary and something I’ve been doing all spring and summer. I am now getting to the end of the entire process, nearly two years after I made the decision to start.
I’m eager for you all to read it and hope you will find it engaging and uplifting.
Mallory’s mother, Diane Shader Smith, spoke with her trademark quiet intensity and passion about Mallory’s bright, positive spirit, and about her enduring legacy. Diane and her husband Mark say thank you to all who attended.
Maryanne, Diane
We sold out of the 120 books that Dick Haley, our Boston bookseller brought, and could have easily sold more.
Since the event, so many people have reached out to me to say how stunned they are by Mallory’s writing, and by the power of of her hard, beautiful story. It also provides insight, they say, into what life was like for us. I can attest to that..
Jess spoke too, about the progress she’s made with The Leo Project in Honor of Caitlin O’Hara, which the Smiths generously designated as the benefactor of their generosity that night.
Jess Danforth, The Leo Project
Then it was on to the Vineyard…
On July 17, artist Kara Taylor and actress Amy Brenneman hosted a fundraiser for The Leo Project at Kara’s art gallery. It was a night of art and African drums and overwhelming island generosity.
Kara Taylor’s gorgeous island spot
Jess and her Leo Project film
Amy, Kara, Jess and that’s me off to the left.
Jess’s talks are emotional and inspiring. She makes it clear that her project is not just about her, or Caitlin, or even Africa. The Leo Project is more universal than that. It is about love and life and friendship and finding what speaks to your soul and pursuing it. It is about honoring a beloved friend, and about bettering the life of even one person, if you can. The Leo Project is about every participant becoming a more purposeful human.
Thanks to all who honor Caitlin during her birthday days — with kindness, humor, generosity, wisdom, tolerance, empathy. ❤️
Kitten on Nantucket, a few years ago…
“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.” –Caitlin, July 31, 1983
The New York Times just published an article about experimental phage therapy and Mallory Smith’s SALT IN MY SOUL. It is bittersweet, indeed, to know that phage therapy, administered early enough, might have done so much to prevent Mallory and Caitlin and and others from even needing transplants, but other people are already benefiting from the Smith family’s ideas and persistence. In a small world coincidence, the NY Times author is an old grad school colleague of mine. She’s a terrific writer with a new memoir out and it’s quite the story: DUPED: Double Lives, False Identities, and the Con Man I Almost Married.
2.
We are hosting a “Live Happy” book event for SALT IN MY SOUL on Wednesday, July 10 at 6:30 pm, for one hour, in Framingham. Mallory’s mother, Diane Shader Smith, will share some of Mallory’s insights for “living happy” regardless of circumstance. In a generous act, the Smiths will donate the profits from the evening’s book sales to The Leo Project in Honor of Caitlin O’Hara. I’ve attempted to invite everyone I think might want to come, but if I’ve missed you, click on the link and register or message me for details.
3.
Construction of the resource center that will house The Leo Project is nearly done. Roof-raising is happening right this minute. Jess returns to Kenya in a couple of weeks to start work on the interior.
4.
Here are two official Boston Marathon photos of Jess and Andrew, capturing Jess as she bounded into the race to run the last mile and a half with Andrew, and then both of them crossing the Finish Line. Andrew raised $13,492 for the Leo Project. Thank you to all you caring and generous souls who made that happen. ❤
5.
And here’s a cute picture of Caitlin and Henry (and James Joyce) because….why not? 😀
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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
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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.
High school with Alyssa
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?
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9 Lives Notes 