Category Archives: ethics

SEPTEMBER 18 — ✨Signs✨

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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.

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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.

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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.

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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.

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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.

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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

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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 every single day, 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, 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:

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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.”

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✨ 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.

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A funny thing is, I have an emoji Caitlin made of herself doing a mic drop. I even used it on this blog once.

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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.

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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.”

That’s what I keep hearing.

 

✨ Notes:

There are 26 mediums listed on the Forever Family Foundation website. There are 17 on the Windbridge site.

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.

I also recommend not using your real name and keeping the reading as blind as possible. That way, you’ll 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 

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11/19/2014 – Subject: All I want for Christmas is this 

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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. 

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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. 

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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!
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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.

 

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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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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.

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The Leo Center, rising

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Future stage for performances

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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.

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Jess on-site with Mungai, her general contractor

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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.

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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.

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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.

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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.

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

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You can’t make this stuff up.

Meow.

 

10 JULY– “She feared that her purpose here on Earth was to teach lessons to others.”

That summer–2014–Caitlin was newly listed for transplant and had settled in to wait. She couldn’t leave Boston because she had only a four-hour window if “the call” came.

Four hours to get herself to Pittsburgh.

So there were no more trips to Andy’s place on the Maine coast. No more Vineyard. Sometimes we went home to Ashland to swim in the pool, but always with packed bags and extra oxygen tanks, ready to scramble and pray that one of the few medical jets available to us would be able to come.

That summer, she especially missed Jess, who had, as long-planned, left a lucrative job in finance to try and make a meaningful life for herself in Kenya.

Kenya is a place that has called to Jess’s soul her whole life. I’ll let her tell the next part:

Jess: “The thousands of miles between us felt more expansive than ever and I was desperate to be in constant communication with her. I started sharing the stories of the kids that I was spending my time with at the Children’s Home that we had started.

Simba was one of them. In Swahili, Simba means lion. Although he had never celebrated a birthday, he was a self-proclaimed ten year old with dewy brown eyes. I connected the two as pen pals and they sent handwritten letters back and forth to one another. They shared an affinity for tiny winged creatures and their correspondence often included an illustration or two.

Recently, I searched through Caitlin’s phone for some photos I just knew had to be on it. 

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Jess: “On June 20th, 2014, Caitlin emailed me: ‘Can’t WAIT for Simba’s letter to arrive. Thinking about him and all your little kids a lot. And you smiling at them. It hurts my heart.'”

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“Jess teld me you like birds.”

The next summer–2015–Jess visited Caitlin in Pittsburgh, where we had relocated, and where she was still waiting. Watching them together, I couldn’t help but muse on the physical contrast between them. Jess was training to do a marathon and literally glowed with health. Then autumn came.

Jess: “We were 31 and 32 when I was diagnosed with breast cancer. She knew more about medicine than most and she researched everything. I sent her all of my labs, my side effects, my questions. She was a well-curated vault of medical knowledge. She would have been an incredible doctor. I sent her screenshot after screenshot when a new drug was added to my regiment or I was deciding to taper off of something. She would talk me through each concern.

We talked about everything but when we were both sick, our conversations took on a new level of depth. We talked about death and about reincarnation; we talked about our purpose and spiritual inferiority.

On the evening of her 33rd birthday, we talked for hours and hours. I had just had another surgery and was tethered to my bed. She feared that her purpose here on this earth was to teach lessons to others. “No. No,” I said because I needed her here with me.

The idea that she was here only to teach other’s things was too much to bear.”

Now it is nearly three years later. Jess has spent the past 33 months coping with cancer, unexpected healing issues (13 surgeries), and the unbearable loss of her closest friend. With her oncology team’s okay, she has gone back to Kenya as often as possible, where she has been in the process of procuring land and builders for a non-profit she has established:  THE LEO PROJECT in honor of Caitlin O’Hara.

Caitlin had planned to do a lot of things post-transplant, like her CF friends who were and are living full lives after their successful surgeries. At the top of her list was visiting Kenya with Jess. Meeting Simba. Instead, she seems to have been right—-that she was here, at least in part, to teach lessons to others. I’ve heard from people around the globe who have been moved and changed by her story, and by her fire & wisdom.

Now, the Kenyan children that Jess loves so much are going to know Caitlin, too. Just in a different way than we all hoped.

PLEASE CLICK RIGHT HERE TO HELP JESS WITH THE LEO PROJECT 

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Caitlin in Ireland on her 30th birthday, always up for adventure. 

“You think all this is important,
but all that really matters is loving people and being kind. —Caitlin O’Hara

 

 

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My ‘random’ tarot pick today.

 

 

26 JUNE ~ For Hurting Hearts Everywhere

A few months ago, Nick ran across a call for artists for an annual juried outdoor art exhibition at a nature preserve in Southborough, MA.

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Hand-carved stone, barbed wire, paint

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 A Message from Nick

These past months, I smiled outwardly whenever family and friends approached or contacted me–-I’m a lucky guy. Inwardly, I felt myself recoil more and more, as the hurt in my heart kept getting deeper and deeper.

Not sure why I entertained doing an art installation in Southborough, up the road from Fay School and St. Mark’s, where Caitlin went to school.

I kept trying to make this a happy installation. At first, I was thinking of something like a happy, smiling heart. But each day, working on this at our shop with my guys, I found myself in my office in tears.

I finally gave in as all the pain of these last 18 months came flooding in. The confusion, the names of friends dealing with their own hurting hearts. The Giblins, Walter, Tony, Jessie B, Kimmie, Jess. The hurt on Maryanne’s face. The loss of Henry.

I finally realized that it is okay to say that my heart is hurting.

As painful as the construction process was, it was worth it that Wednesday at 2pm as I placed the final piece in place––a great relief and opening of my heart, I guess, as I smiled and thought “Caitlin likes this” and I was so looking forward to Maryanne seeing it. As I walked away, two hawks soared above–-Caitlin happy because her dad is.    

–Nick

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Design and construction phase

 

ART ON THE TRAILS will exhibit through September 23rd

The show includes 18 installations spread out over a 15-acre parcel of preserved open space. The installation behind Nick’s is a big black and white cat.    !

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BIG KITTY, Mark Wholey

To visit, refer to this map and parking directions.

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“All that really matters is loving people and being kind.” –Caitlin O’Hara

APRIL 23–Coincidences (?)

There are so many, and they have happened pretty much every day, this past year. Here are a couple of crazy ones.

When I announced, in September, that I would be writing my story in a more contained form, the universe seemed to lead me to Dani Shapiro, the author of many moving pieces of memoir and fiction. In November, I made plans to attend one of her small, women-only writing retreats.

There would be six other women in the group. As I was reading the other writers’ pages, before I left home, I wondered why the name of one woman, Julie Himes, was so familiar. Then I realized she was the author of the book sitting right beside me—-my book club’s pick for December. I emailed her to say hello and to remark upon the coincidence.

She wrote back with some equal amazement. In my pages, I had mentioned Vertex Pharmaceutical’s Kalydeco, the gene-correcting cystic fibrosis drug that might have changed Caitlin’s life, if she’d had access to it before her lung damage occurred. In addition to being a writer, the multi-talented Julie is also a research physician and a medical director at Vertex.

On the last night of that November retreat, Julie and the others were talking with great enthusiasm about Sirenland, an annual writer’s conference that Dani, Dani’s husband Michael Maren, and Hannah Tinti have been running in Positano, Italy for the past dozen years.

Long story short: I ended up attending Sirenland last month.

At Sirenland there are three small workshops, with ten writers in each one. I was part of Dani’s memoir workshop. Before I left home, I received the bound pages containing my group’s ten manuscripts. They were in alphabetical order.

I began to read the manuscripts, one per day. A few days before the conference, I was in London when I reached the end of the manuscript.  W. David Weill. The name seemed familiar. I began to read. And stopped. I started talking to myself. What?? What is this??? Are you kidding me???

I called up to my friend who was traveling with me. You are not going to believe this.

David is a pulmonologist and was the medical director of the lung transplant and adult cystic fibrosis programs at Stanford University for years. His manuscript consisted of the first pages of a memoir he is writing about his complicated relationship with organ transplant.

I also realized why I recognized his name.  I emailed the mother of Mallory Smith, the young woman from LA who also had to be transplanted in Pittsburgh, and who passed so tragically last November. Nick and I had just had dinner with Diane and her husband at their California home. I wrote, Is David Weill the Stanford lung doc friend you mentioned?

Yes, why?

And I told her and she said, Oh my God, Mallory did an edit of his book.

So yes, there was that.

Sirenland was an exceptional experience. And David is an exceptional person and I hope that his memoir will find many fascinated readers. He is now consulting, and working to address, as he puts it on his website, an important deficiency in transplant care: the lack of comprehensive quality information about transplant program performance. From his siteIn the United States, there are hundreds of transplant programs performing thousands of solid organ transplants per year. Based on my own experiencing directing programs and evaluating them for public and private entities, I have seen that the quality of the programs varies considerably. This variability is usually not apparent to patients. The mission: Develop a scientifically reliable way to evaluate transplant program quality by using a variety of metrics that will be proposed and tested by experts in each of the four solid organ transplants (heart, liver, kidney, and lung). In order to achieve this mission, I have set up a non-profit entity called the Coalition for Transplant Program Evaluation (CTPE). 

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Our magical workshop space at Le Sirenuse, Positano

         

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The insanely beautiful view from my room at Le Sirenuse.

As I neared the end of my week in Italy, I thought of all the trips that Caitlin and I had planned for “after transplant.”  The last overseas trip she took was to Ireland for her 30th birthday. She traveled with Andrew and they visited her beloved family in Wexford–her grandmother, aunts, uncles, cousins. It was a complicated trip, as that was the summer she began to catch one virus after another. By Christmas, she was on oxygen full-time and would never travel again.

I decided to take advantage of the fact that I was already “across the pond.” I had a ticket home from London but was able to change my departure date. I asked Nick to join me in England, to see, in honor of Caitlin, some places she longed to visit: Salisbury Cathedral, Stonehenge, Bath. He came and we saw those magnificent sites and he was also able to visit with old, close friends and also some Welsh cousins he had not seen for thirty (!) years.

We ended our week in London at the hotel where I twice stayed with Caitlin, most recently in 2012. I showed Nick around the enchanting public spaces and pointed out areas that held particularly vivid memories, like how one afternoon, in the lobby, I realized that the man sitting beside me on the sofa was Cuba Gooding, Jr and he was really sweet and funny and offered me a cake from his tiered tray, then basically shouted BOO! when I reached for one.

I showed him where Caitlin got into the taxi with her big suitcase full of oxygen and medical equipment that took her to the Chunnel train that brought her to Paris and the apartment where she so bravely spent a few long-dreamed-of weeks alone.

After we unpacked, we went down to the hotel’s spa. Nick went to the men’s changing area and I went to the women’s. We arranged to meet on the thermal floor.

Once inside the women’s area, the sights and spa smells were so immediately familiar. How could six years have passed? Caitlin was almost there, a shimmering memory in robe and slippers. I allowed myself a moment, thinking, The last time I was here, Caitlin was alive and my book was about to come out, and Cuba Gooding, Jr gave me a piece of cake. Life was pretty good.

Then I went down to the thermal floor to look for Nick. It’s kind of dark there and I couldn’t see him, but suddenly he came out of a door, followed by a man. Look who I found! he said, and it was Cuba, wrapping me in a big hug, saying he was so sorry for the loss of Caitlin, and then he was gone, and my head was spinning a bit. Still is.

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In London

 

–Maryanne

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NOVEMBER 16–& the Anniversaries Begin

I know all the dates.

Yesterday a year ago was the last night Caitlin would ever sleep in her own bed. That night, she was so weak she did not have the strength to sit in the bathtub and let me wash her hair. I was so alarmed I emailed her doctor at 10pm.

On the 16th she was admitted to the hospital for the last time.

I wonder now, how many times in her life was she admitted to a hospital? I don’t know that I could even guess.

After I went home for the night, she texted me

Caitlin: Had to get an echo. Feel sick. And tired and can’t breathe. Love you. Hope you get rest.

Text message: 11/17/16 9:14am

Caitlin: My score is 70

Maryanne: Oh my God. Oh wow. What happened?

Caitlin: Dr hayanga came in. Because of my oxygen

Maryanne: What did hayanga say

Caitlin: He was optimistic. Very. He was Iike, we expect to get offers.

Caitlin: Andrew says we HAVE to be hopeful

Maryanne: We ARE hopeful. This is going to happen.

I drove to the hospital that morning with a light, happy heart. It was finally going to happen. The head surgeon came in and said he had been up all night fielding offers for her. None of them were a match, but with so many offers coming in, and with her score so high, a match seemed imminent.

She was on a lot of oxygen but she was stable, and felt much better than she had at home. Finally, finally, finally, after 2 1/2 years, it was going to happen.

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Yesterday, another CF tragedy occurred. Mallory Smith of California, who, like Caitlin, could only be transplanted at UPMC and moved to Pittsburgh to wait, received her transplant in September. Her recovery was hard but she was recovering. She was on the other side. Just a few weeks ago, she celebrated her 25th birthday. Soon after, when the docs removed her last chest tubes, she said, “Today is the happiest day of my life.”

Then a pneumonia took hold in her chest. Without an immune system to help her body fight the infection, she became sicker and sicker. The cepacia bacteria that had damaged her native lungs began to destroy the new lungs as well.

We were all hoping for a miracle of science for Mallory, but she slipped these surly bonds yesterday afternoon, her most beloved people by her side.

She was brilliant and kind and everything wonderful. A few years ago she wrote an essay that contains these words:

My life is a miracle because I should be dead. Your life, even if you’re healthy, is a miracle, because your existence is the result of stars exploding, solar systems forming, our Earth having an environment hospitable to life, and then, finally, millions of highly improbable events accumulating over millions of years to bring you, a capable and conscious bag of stardust, to the here and now.

Acknowledge that miracle. Existing is a rare gift, a privilege. It isn’t a right. Think of all those atoms that never ended up inside a human body.

So pick something, do something, to respect that miracle. Step up to the challenge of making your own meaning out of mere matter. Let the whole, the human, be altruistic, be greater than the sum of the parts, the selfish genes of our genome.

Set an intention and get after it feverishly, frenetically. Give back what we’ve taken by paying it forward, save a life, smile at a stranger, climb a mountain leaving nothing but footprints, inspire a child, take care of your body, bring happiness through laughter, plant a tree, and sometimes, just breathe and exhale a little bit of calming energy to your environment.

Give back in whatever small way you can, any time you can, because we are not small. No one of us can do everything, but all of us can do anything. Do it because we have survived, and that is a miracle. Do it because why wouldn’t you? Do it to justify your life.

I hope Caitlin found you, Mallory.

Full text:

And we are big (spoken word unspoken), by Mallory Smith

View at Medium.com