MARCH 23 – FOUR MORE TUESDAYS 🕯

Three years ago right now I was in Italy at a literary workshop. I had 25 pages of Little Matches written but I still I had no idea whether it would ever become a book. When I arrived home, I resumed my practice of setting a timer every day and sitting down to write “no matter what.” I aimed for a chapter a week, and sent the pages to my friend, the writer Susan Conley, every Monday. I needed to feel like somebody was expecting those pages, and I’m grateful to Susan and to two other close friends, Jane and Monique, for steadily urging me on.

And now it’s complete! In four short weeks, it will be out in the world.

🕯BE MY GUEST AT THE VIRTUAL LAUNCH CELEBRATION 🕯

All events are currently still virtual. It means I can’t see you in person, but it also means you can see me from the comfort of your own home, and we can be connected no matter where we are.

My first event will be at Brookline Booksmith in Massachusetts. I did quite a few CASCADE events there, and nothing would make me happier than to talk about this book, for the first official time, with loved ones surrounding me and pizza at Otto afterward, but I am also so grateful that the virtual option exists.

I am excited to talk about Caitlin and this book, and how much I hope it will inspire people to love deeply, live purposefully, and seek joy. My conversation partner is going to be an old friend, the absolutely stunning writer and wonderful human, Lily King. Lily and I had a long, outdoor walk this past December and talked about how people, after they are gone, can actually start to feel near again in a wonderful way that you never expected.

I have a small request. I would LOVE it if attending guests would light themselves a little candle 🕯 in honor of Caitlin, their own loved ones, and in honor of themselves. I won’t be able to see you all out there, but if I can imagine your faces shining amidst all that light, I think we can conjure a beautiful, virtual community for one precious hour.

The event is free but you must register to get the Zoom link. Click here: Zoom link for Booksmith

🕯MORE LITTLE MATCHES CONVERSATIONS 🕯

Because I will be doing most of my book talks with conversation partners – wonderful writers who are generously giving me their time – we will not be following any set script. Each talk will be unique and wonderful and I hope new readers will hear about them and attend.

All of my events are/will be listed on my website and we will keep it up-to-date. I will also write another post soon, with updates.

🌀 LEGACY WORKSHOPS 🌀

A head’s up that I’m going to be offering some mini-workshops at some bookstores around the country. Recently, I trained as a certified end-of-life doula at the University of Vermont’s Larner College of Medicine. I knew that the training would a) better prepare me for the hospice volunteering I plan to do when Covid restrictions lift, 2) help me to better speak to the state of end-of-life care in our culture.

My favorite part of the doula training was legacy work – helping people record life interviews. Life interviews offer an opportunity for people to reflect on their lives and shape their stories, regardless of age or current health.

I believe in the idea that everyone has a story that deserves to be preserved, and have written a brief article about life interviews and the opportunities that I missed with my daughter and my mother. It will run in Time Magazine in early April.

So far, we’ve set up three of these free, one-hour workshops with bookstores in California, Washington state, and Florida, but because they are virtual, anyone anywhere can certainly attend. They are/will be listed on my website with registration links. So far it’s Warwick’s in LaJolla, Books and Books in Miami, and Elliot Bay Books in Seattle.

🌀 SIGNS 🌀

I’ve been wanting to write another “signs” post for a long time but I’ve been so busy writing other things, I haven’t had a chance. As always there are constant 33s and hawks in our lives, but some of the instances have been particularly fascinating. Here’s one thing that I’ve been meaning to share since last summer.
As I wrote here, my mom passed in June. Earlier that year, I was helping to take care of her after she had begun to fail. I knew that she had a lifelong fear of death and even though she was clearly not long for this world, she clung to a hope that she would miraculously get better and live another ten years. With my mother and me, if a subject was uncomfortable, it was not discussed, but as I was helping her into bed one night, I mustered up my courage. I said, “I know you’re scared but it’s going to be okay.” And I said what I believed to be most true: “I KNOW there’s more than this. You’ll see! I’m actually envious. You’re going to see Caitlin.”

She did not comment, just looked at me steadily, processing what I’d said.

Two months after her passing, I had a session with Kristin Bredimus, a spiritual consultant with a toolkit full of abilities, whose energy work is so powerful that I stumble off her table like I’ve had a two-hour deep-tissue massage. As Kristin was passing her hands through the air above the left side of my body, I heard her ask something about “mother.” We were both masked and she had a shield on; she had to speak up.

There was mother energy wanting to present itself, she said. “Has your mother passed?”

“She has,” I said. “Very recently.”

“She’s saying, ‘You were right. You were right.’”

“Really?”

“Yes. Did you two have an argument about something?”

We had not, I said. And I told her what I thought it meant.

After the session, I got in my car and began to drive away. A car pulled out of a side street, right in front of me, and right in front of Kristin’s building.

And as I was writing this post, I had to do a search on my phone to find the pic of the license plate. You really can’t make this stuff up.

Oh and this just popped up this morning in “Facebook Memories.” I’ll add it for the pleasure of all who are longing to travel again. Sigh.

DECEMBER 20 — 2020202020202020

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:

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. ❤️

SEPTEMBER 18 — Matches struck in the dark

Update needed, as Caitlin would say.

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?

♥️ Thank you.

Pre-Order Links to Receive Your Copy on Pub Day:

30 JUNE––Arc of a Life, a heart intact

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.

jillian_hyllantree_twisla

This light crossed over today, on her way home to join the ancestors ✨
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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…
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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.
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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.
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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.
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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. .
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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.

✨ Florence Daly Bavaro, 1936-2020 Obituary ✨

2020 — Big World

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 15^th 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.

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

DECEMBER 6 — Tiger, Angel

Thank you so much for the outpouring of caring. Reading all the notes made me teary and grateful for all of the wonderful people in my beautiful daughter’s life. I’ll try to update every day, but sometimes it might be hard.

Things are changing quickly. After a traumatic couple of days, Caitlin was relatively stable in the ICU yesterday. Late last night, I even texted a simple “things are good” to a few people.

But part of Caitlin, I think, believed that she “lost control” over the weekend, and caused herself to end up on ECMO. Yesterday she was trying to do everything she could to control her situation, control her life. She was talkative, questioning, in charge and speaking her mind, and also quite funny.

She’s always been her own advocate, but she pulled no punches. When someone did something wrong: “You should have known. Don’t do it again.” “I usually say please and thank you but I can’t waste the breath.” To the attending ICU doc who was part of the ECMO procedure: “I like you. You’re good.” To the annoying resident who started to examine her: “You just touched your hair, change your glove.” To the nurse last night: “You’re good. I bet you’re a Capricorn.” “I am,” he said. “I bet you’re good with money.” “I would be if I had some.”

But she wasn’t herself, spoke in a flat, blunt, odd way, and that was beginning to alarm me. Still, I reasoned, she had been through a lot. I hoped she would sleep and come back to herself. She did not sleep. Instead, she became increasingly hard to talk to and would not stop talking. She took my new brown notebook and began to write, constantly—- ideas for her care, new plans, instructions for all of us, lists, trying to account for every day, every hour. Her heart went into SVT again, and she had to be shocked again. By 4am, she still hadn’t slept and was no longer making sense. It wasn’t even like she was Caitlin.

Sleep deprivation on top of trauma. What a combination.

We had promised her we would stay close to her the first night, and we did, but by 5:30 am it was clear we were doing more harm than good. Nick went to sleep in the family room, where I’d managed to get about 6 hours “rest” on a chair. I went home and showered. I was almost back to the hospital when Nick said she still hadn’t slept and was still writing as fast as she could in the notebook and that the team thought it best we not see her for a while.

We talked to the attending about the fact that her condition was no longer stable. We talked about options. Shortly thereafter, the attending called us back and said the team had decided to intubate her. That allows her to breathe on a ventilator to rest her body/her lungs. Tomorrow they will put in a trach (which she would have likely gotten after transplant anyway.) The trach lets them have easy access between her body and the ventilator, and access to her airways. She’s having trouble coughing, so this will help. Tomorrow, they are also going to do a bronchoscopy, where they go into the lungs and clean them out. None of this is ideal but it’s now necessary, and it’s common, and it saves her life for now.

A while later, her wonderful nurse called (I need to clone this nurse) and explained that Caitlin was finally resting but told me, with honesty and compassion, about how out-of- control and combative Caitlin had become. I’ll spare the details but basically, the kitten had become a thrashing, panicky tiger. Erin, God love her, said, “Right before sedation, I told her, ‘Caitlin, I don’t care what you say or do. Right now, I’m going to save your life.'”

And that seemed to get through to her.

Now, on the vent, she can be a bit more sedated, and as comfortable as possible… and hopefully her new lungs her surgeons have promised will be inside of her soon.

I want to weep with gratitude for this hospital, the only one in the country that will accept such high-risk transplants, the people other hospitals have rejected because the transplants might fail and mess up their shining success statistics.

The good news? Remember yesterday I wrote about that other family from MA? The young CF woman had also been intubated and on ECMO and had even been on dialysis before transplant. Well, last night I went up to the terrible cafeteria because I was desperate for something to eat and there they were! The mother and daughter, the daughter on her feet, walking around ! 3 1/2 weeks after this same trauma, after transplant. I felt like I was seeing an angel.

–Maryanne

Mostly Companion, written by Caitlin

At some point when I was little, my mom and I started referring to one another as our “mostly companion.” It probably grew out of the time I was having surgery when I was 11, and was in the hospital a lot. We would get overly tired, stressed, and…really silly. We were absurdly often at our funniest when things were worst. I guess that is common for people in trying health situations, and it’s a nice silver lining. The other day, in the hospital while I tried to eat lunch, my mom put on quite a show of impressions and we were laughing so hard. The game was to do one small word, look or movement from a movie…not a whole line. Her imitation of Salieri yelling “MOZART!!!” from Amadeus was the best…she has an incredible man-voice that she harnesses from deep within. Oh my goodness, maybe you had to be there.

I don’t write much on the blog, but today is the day to do it. For those of you who know us well, I am so close to my mom that it sometimes terrifies me. Maybe it terrifies her too. I know how lucky I am to have a mom like her, and parents like mine, and our situation — my situation — has made our link stronger, and sometimes that’s scary. We both know that there will be a time, hopefully, strangely, where I am well again and we live apart like typical adult mother and daughter, and we will look back on this time with nostalgia. Right now we are suspended, and we do puzzles together and watch Mad Men and she gives me leg massages, and everything, good or bad, is heightened. Everything makes me cry these days, good things more often than bad — so there’s a lot of appreciating that goes on. But its also draining, exhausting. Living in the moment is a good adage, but like anything, there can be too much of it.

My mom is doing everything for me, she has uprooted herself. My dad is living alone in MA when he is not here, and I know its hard for him in a way I can’t imagine. Andrew is back and forth as well. Here since December though, non-stop, has been my mom. She cooks, does the laundry, listens to me, sits with me in the ER, in the hospital…she even feeds Henry homemade food that she makes herself. Here in Pittsburgh, where she knew no one, she has made friends and found interesting things to do, always finding something to be enthusiastic about. Even writing this now is making me want to be more like her, and I feel even more thankful just putting it into words.

She has somehow found time to write everyday, and has since July 1st, circling the date in red when she is done — she has remarkable follow-through with things. It has taken me over 2 months to gain 4 pounds, and I WOULD NOT have been able to do it without her. When you get evaluated for transplant, part of the evaluation is making sure you have a good support system, because it is so vital to how well you do. This might seem hard to grasp to a healthy person who thinks that ultimately, you can get through anything on your own if you really have to. I am telling you – haha – you can’t. You need people, and I wouldn’t be here without her.

I am also aware on a day like today how hard it must be for some people, who have to be painfully reminded each May that they don’t, for whatever reason, have that relationship. It reminds me again that everybody has some kind of pain, as well as some kind of good in their life, and that none of this is a contest. As hard as it is being sick and being here, my mostly companion and I are having some laughs. There’s probably a lot of people out there with great lungs, and no mummy. Everybody is just trying.

As it usually is when you love someone so much you can’t put it into words, everything I have written here feels inadequate. But most of you already know what a great mummy she is, I am just here to tell you …that she is even better than that, and that I love her so so so much.

happy mother’s day!

DECEMBER 8–Packing for Pittsburgh

Anyone who knows us knows that GROUNDHOG DAY is a favorite family movie. We know every line, and even Henry is part of the act—he was born on February 2. Caitlin and I were watching the movie a few weeks ago, and fell off our chairs with laughter when we realized that the opening segment (see above) clearly shows the apartment building where we will be living! Who would ever have thought??

We are getting ready to head there soon, to wait out the winter. The early snow and cold temps have made us a bit nervous; it’s best that we settle in before Christmas.

The furniture at our apartment was delivered last week. Everything is pretty much ready! We’re going to make the most of this adventure. Thanks for all the continued prayers, good thoughts, hellos, and help.

–Maryanne