Salt in my Soul – 9 Lives Notes

AUGUST 1 — Birthday Days ❤️

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.

Also, Nick and I want to thank everyone who came to the event we hosted on July 10 for Mallory Smith’s SALT IN MY SOUL: AN UNFINISHED LIFE.

Screen Shot 2019-07-30 at 6.52.45 PM.png — “Live Happy” Hour, in honor of Mallory Smith

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.

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.

Screen Shot 2019-07-30 at 6.52.56 PM.png — 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.

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. ❤️

“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

MAY 22 — Housekeeping

1.

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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APRIL 16–Salt, Sweat, Pittsburgh

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.

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.

We are so proud of him!!! As of today his run has raised $13,387 for The Leo Project in Honor of Caitlin O’Hara. Construction of Jess’s resource center for kids is coming along right on schedule:

Wonderful and emotional.

It’s been an emotional few days.

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 ♥💛

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MARCH 12–Four ♥ Stories & A Big Loud Meow

Update needed, as Caitlin used to say.

♥ Story 1, JESS:

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

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

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

The Leo Project_FULL.jpg — The Leo Center, rising

The Leo Project_STAGE.jpg — Future stage for performances

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

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

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

Jess on-site with Mungai, her general contractor

Fred the foreman and one of his cheerful workers

♥ Story 2, ANDREW:

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

Love. Steel reserves. We have everything.

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

♥ Story 3, MALLORY & DIANE:

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

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

From the LA Times review:

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

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

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

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

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

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

♥ 4, St. John:

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

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

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

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

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

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

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

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

I mean, super loud.

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

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

You can’t make this stuff up.

Meow.