Monthly Archives: March 2019

MARCH 22 — Retablos from Caitlin

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. 

IMG_2331.JPG

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. 

Screen Shot 2019-03-22 at 3.50.44 PM.png

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!
Image-1-1.jpeg

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.

 

IMG_0224.jpeg

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?

–To follow this blog, click +Follow, down to the right, and enter your email address to be alerted to new posts.

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

The Leo Project_SIDE.jpg

Side view

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

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

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

30542328_1533778672508051_r.jpeg

d1dc0329-e144-4006-9146-d2ff0ddaf0e3.jpg

Jess on-site with Mungai, her general contractor

1f56e20c-b093-423d-a664-d3b702883bfduntitled-30.jpg

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.love city.jpg

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.

1933530_1831659759698_5194553_o.jpg

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.

IMG_5218

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.

IMG_5261

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

2FullSizeRender-1

You can’t make this stuff up.

Meow.