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

MARCH 4–Knock knock knockin’

Yesterday I heard Knocking on Heaven’s Door (different versions) 3 times before 10am. That got me thinking about Caitlin, and about Bob Dylan. Here’s a text she wrote, in November, about him winning the Nobel Prize for Literature. Something to read on a frigid Saturday.

The more I think about the Dylan thing the more I

think it is wrong. I think there’s a whole thing where

we’ve got this idea of the arts being lumped in

together. That all forms of creativity fall together

and — I think like Simeon said — create overlapping Venn

diagrams.

But what if they weren’t the overlapping Venn

diagrams that we all kind of just assume they are?

Perception is the question, right? Music is words +

sound ….but it is reminding me of the arguments in

alternative medicine. Cancer feeds on sugar cells.

Cancer dies in alkaline environments. Subtract sugar

cancer dies. Drink alkaline water and cancer dies. It

misses the point that you can’t just add or subtract

things to your body–that the body is designed to

take whatever you give it and do what it’s going to

do to maintain homeostasis. You could say homeostasis

— the equilibrium we feel and enjoy as humans

physiologically — is the same as a FEELING,

generally. Ok? So like — maybe arts aren’t defined

the way we define them at all. Maybe they’re really

entirely separate. The feeling you get from a

painting that moves you is as separate from the

feeling you get from music as a worn out kidney is

from a worn out liver. Sure they’re all organs. But if

your lungs fail your homestasis will be threatened in

a way much different than if your liver fails. How do

we FEEL when we see a painting we love. How does

that compare to when we read a sentence we love.

And to when we listen to a song that makes our

heart swell. I know for me all those feelings are very

different. They feel different, they seem like they’re

coming from different parts of my brain. They aren’t

just all coming from the art department. Or the

creativity “side”.

I guess it kind of goes a step further though

because yes if I clang spoons together and start

yelling that can be called music. But what makes all

of these different forms GOOD. What makes them

provoke a feeling etc etc all the stuff that basically is

needed to win a Nobel prize. It has to be these

things that we feel and really it has nothing to do

with the fact that words were used. It’s like awarding

the best pie award to a cookie because it used sugar.

Also, the point isn’t the ingredients! It’s the result. And

what we get from music isn’t what we get from lit.

And they’re all arguing “well the cookie was too easy

to make” or “the cookie didn’t even taste good”

….but that’s not the point. The point is it’s a cookie.

Which some people were saying.

It just seems obvious now.

Regardless I am still weirdly glad he won?

–Caitlin

JANUARY 7–Signs & signs

Weird to open up my little travel computer, here in CA, for the first time since December 20 and see all the windows containing my last hopeful posts, still open. iMessages is updating my text messages before my eyes, and all the texts of the past few weeks are flashing as if in real time.

So strange.

The other day, an old family friend of Jess’s (thanks, Miah) sent me a link to a medium who talks about animals and birds and signs and such. I listened to part of the podcast before we boarded yesterday. The medium said, “Ask for signs. You will get them. They will surprise you.”

So on the flight to LA, I held Kitten’s bird ring and took photos of all the places she had been unable to visit the past ten years, due to altitude problems—-the Rocky Mountains, the Grand Canyon. I told Caitlin she was with us.

“How about you?” I asked. “Are you with us? How about a sign?”

I didn’t expect anything, I must admit.

A few hours later, as we were preparing to land, there came this sudden howling in front of us. The howling of a cat. Right there, under the seat in front of us. A kitty had been there all along. It seemed so perfect we laughed.

When we got up to leave, I wanted to sneak a picture of the rascal, but it was hunkered down in its case. I tried anyway, and as I did, it sat up and looked right at me.

Sign? I’ll take it.

(Note: WordPress would NOT let me upload that photo, and thus not save this post. For the last half hour I tried everything. Just when I was about to give up, it magically displayed here for me. ha)

We walked around a bit once we got here. Weirdly, a store that I really like, and have bought things from online, happened to be right around the corner. (I’ve never been to CA and had no idea where the store actually was.) We went in and I found myself pawing through the sale rack with an actress and her filmmaker husband –people Caitlin greatly admired. Of course my first instinct was to surreptitiously text her to let her know.

I’ll have to get used to that.

There were some other nice “signs,” though. Quite literal ones.

And this morning, Jess’s mom texted from the Vineyard ferry, as she was on her way to Woods Hole. A gull (like pigeons, a favorite bird of Caitlin’s, she likes how fierce they are), decided to accompany her.

From Santa Monica, peace and love from Caitlin—-

12/19–Verdict: No Real Sign of Trouble

Caitlin came back from her trip to the OR. Her surgeon and his fellow thoroughly searched for anything that could be causing the high lactate levels. The good news was that they did a deep and thorough search and everything looked good. No dead tissue to be seen. The liver is likely the problem, because it is swollen, still recovering from deep trauma and the blood pressure meds it had to process. But it’s working; it is not dead. So it looks like it needs some time to heal from the shock her body’s been through. We have to hold tight. Be patient. Remain positive.

Some good news was that her chest had stopped bleeding. The surgeon was very happy about that. Also, the left leg looks okay, like it’s not the source of the lactate trouble, but they will be keeping a close eye on everything, of course.

Friends, this is going to be a slow and atypical recovery, and we are going to have to learn to live with that—-with uncertainty and worry and relief and more worry and hopefully, a final blast of relief.

Honestly, it all feels like a game of whack-a-mole.

But….. Dr. D’Cunha really made us feel okay tonight. As we’ve learned in Boston, there are so many doctors in a teaching hospital that you learn to be careful who you listen to. One guy said something really stupid over Caitlin today, in front of Nick. (“Might have to amputate that leg.”)

Nick dealt with him.

Dr. D’Cunha, referring to that, said, “Caitlin has two doctors—-me and her (pointing to the wonderful Lara, his right-hand fellow). “We’re the only two you listen to, and when she’s talking, she’s talking for me, okay?”

Okay! Happy to have her in his good, life-saving hands.

I also put a sign above Caitlin’s bed: Positive Talk ONLY Around Caitlin, Please !!!

Thank you, all, for all of your continued prayers and light and love. What a blessed holiday season this has been for us, and, I hope, for all of you.

FEROCIOUS POSITIVITY CONTINUES

–Maryanne, with Nick, Andrew, Jess

PS: In the spirit of the season, I think Caitlin would be really happy if I posted this picture of Henry for a little dramatic relief.

Screen Shot 2016-12-19 at 8.57.13 PM.png — *Henry the darling reindeer*

🎶 🎶 🎶 🎶 🎶 🎶 🎶

DECEMBER 19–Update from the Trenches

Caitlin has new working lungs, but the rest of her is struggling, and she needs all the energetic help she can get, along with everything her incredible doctors are giving her.

1. Her liver is still in tough shape, but the numbers were slightly better this morning.

2. She’s producing a lot of lactate, which generally indicates lack of tissue oxygenation, but they are not sure from where. We need to get that number down, and ensure adequate tissue oxygenation.

3. On ECMO, a patient’s pulses are checked constantly. They’ve lost detection of a pulse in her left leg/foot, which is her non-ECMO leg, but it is too risky to bring her back to the OR to try and figure out what is happening here.

Normally, transplant patients are forced out of bed, even in pain, right away, to get them moving, but that’s impossible right now. We have to take it one hour at a time.

That’s our update. We’re so thankful we are on the other side of this battle, but she’s been dropped right back into the trenches, immobile and very beaten up.

–Maryanne, with Nick, Andrew, Jess

DECEMBER 11–Back to the OR

It’s 11pm on Sunday night, and Caitlin has had to go back to the OR. Clotting is a risk with the ECMO cannulas through which her blood flows. The system is monitored constantly and a couple of hours ago, they discovered a clot. They clamped off part of the tubing to try and extract it, but that didn’t work so she’s had to go back into the OR to replace the cannulas. They are not meant to work forever.

It’s Sunday night and we’re coming into Mercury Retrograde and I’m asking anyone who is awake and reading this to pray for a hitch-free procedure.This kid has been through enough!

–M, with N and A

DECEMBER 9–‘The Sickest Person in the United States’

Caitlin just got out of the OR again, where the head lung transplant surgeon here at UPMC Pittsburgh, Dr. John D’Cunha, inserted a trach. It gets the breathing tube out of her mouth, makes her a lot more comfortable, and helps her oxygen saturation.

He came in to tell us that all had gone well and that she was already in better overall condition because of it. He said, ‘I’ll feel a lot better when this one’s transplanted, though.’

Nick asked, ‘Anything?’

‘No,’ he said. We both felt that awful desperation that is forced to mix with patience. But the doctor went on, ‘But I have a good feeling about this weekend.’

And hope came back.

‘She’s the sickest person in the United States,’ he said. ‘She’s the sickest person who needs a lung transplant in the United States. You can quote me.’

Yesterday was my darkest day. But she pulled through and let me tell you that I can feel the outpouring of love and caring coming at us from everywhere. It’s palpable. While I was helping her relax before the trip to the OR, I put my hand on her chest. The energy coming through was like a magnet.

Thank you.

We are grateful to anyone out there who would consider the gift of a direct donation of life during a time of grief, as Nick’s family did when his brother, at age 29, died suddenly of a brain aneurysm.

Caitlin O’Hara is 5′ 2 with a blood type of O+ and is on life support at UPMC, Pittsburgh.

–Maryanne, with Nick

DECEMBER 7–Second Hearts

Last night, Caitlin was stable but at 4am we woke to the news that her left leg, site of the new arterial cannula, was swollen. They couldn’t detect any pulses in the foot. Her leg would soon be in danger if they didn’t act. At 5am she went back into the OR to receive a fasciotomy–they would make cuts to the fascia on either side of her calf to release the pressure.

It was successful, but two hours later, they weren’t detecting pulses again and they had to do an adjustment. They’ve been checking the leg every 30 minutes. So far, so good.

She’s mostly sedated, but sometimes she swims up and when she does, she gets agitated. It’s clear that she’s alert. She pointed to the breathing tube in her mouth. Then made the writing motion. We gave her the white board and she clearly wrote, Transplanted?

It broke my heart to say no, not yet.

(They tell her what they are doing before each procedure, but of course, with the anesthesia, she forgets.)

She began to write more, faster and faster. It was hard to make out the words, but we saw a couple of angry ones: “mistake, fucked-up.” Her oxygen saturation levels started to go down with her agitation so we had to take the white board away. She’s been asleep since.

Here’s a thing that gave me some chills, though. When they first wheeled her to the OR to do the fasciotomy on her calf, I decorated her ICU area a bit. I hung some Christmas lights above the bed area.

I hung personal photos on the wall.

Jess, above, on the left, is one of Caitlin’s most beloved friends. They share a close, close bond. That “I Love You” card is from her. Inside is the kind of letter you save forever.

Jess recently went through a year of dealing with a complicated case of breast cancer. (www.kenyahandlethis.com) Right now, she is in India, on a long-planned trip. She wasn’t going to go, but Caitlin said, “You got through your cancer, and now you’re free. You can travel. Go!” Jess decided to go but said that she would carry Caitlin with her. She’s been texting me the entire time she is there. She’s been wearing a bindi (red dot) on her third eye, for Caitlin.

When I opened my Whatsapp to send the above photo to Jess, I saw that a couple of hours earlier, Jess had sent me this text.

I did.

—-Maryanne, with Nick