Legacy – Self-Reflection and Finding Purpose – Page 3

DECEMBER 20 —

Well, this is a tough day, no question, but I have to mark it with a post.

Last week, I finally made time to visit the medical museum run by Mass General Hospital. I wanted to get a close-up view of the first heart-lung machine, which I’d been seeing through the window whenever I passed by. I wanted a stark reminder that modern medicine is still pretty new, that it is still—compared to the wonder that is the human body itself—quite primitive. I wanted to feel lucky to have had Caitlin for as long as we did.

The heart-lung machine was gone, swapped out to make way for other exhibits. But I found myself transfixed by something suspended and otherworldly: a protein scaffold of a human heart, the possible future of organ transplantation.

Screen Shot 2018-12-14 at 2.33.16 PM.png — Photo by Harald Ott, MD

“This image from the Ott Laboratory for Organ Engineering and Regeneration at MGH shows a human heart in the process of decellularization––the cells are removed, leaving behind a protein scaffold. This experimental process may be an alternative to traditional organ transplantation in the future. By using the donor organ’s scaffold and seeding it with the recipient’s own cells, the new organ could overcome the risk of the recipient’s immune system rejecting a transplant.”

A miracle, a dream. Science offering so much hope and yet deepening the mystery. Yes, the mechanical function of the heart can be reproduced and genetic manipulation is advancing, but what of consciousness, emotion? The seat of the soul? Where is all that? The source of the pain of grief.

Two years. Impossible.

I have not written here since July because I have been obsessively writing the book. My goal was to ‘finish’ by today and I’ve done that. I even had the pages printed and bound last week, so I could edit with fresh eyes. Here it is, sitting on Caitlin’s desk in her apartment. The photograph on my computer is from Christmas Day a few years back.

It will be important for me to get this book of my heart out into the world. I haven’t yet figured out how to describe it––the word memoir is too vague and ineffectual. I need to come up with a descriptive sentence or two that will convey all that I hope the book will deliver to readers.

Yesterday, my friend Diane wrote and said she was finally making a print of her favorite photo of Caitlin. Andrew took it one day in Frick Park in Pittsburgh. Caitlin told me, “We must look insane out there on the trails, the wheelchair bouncing all over the place, but it’s fun.”

Diane: Mare she was such a BAD ASS!!!
I loved that about her.
That’s what the picture depicts for me. All that she was inside.
Strapped to oxygen,
Hiking out in the woods,
resting in a place that in another life
she could have built or resided in,
smiling, living in the moment with grace and humility all the while being a BAD ASS❤️

“I’m baaaad Kitten,” she liked to say, with a bit of a cackle.

I’ve been looking through old texts and the uplifting thing about them is that as I read them, I am ‘in the moment’ again and she feels very present.

11/19/2008
Caitlin: i am try try trying not to listen to Xmas music on the radio
but my persistent Christmas spirit is just bursting!
and i feel like if i keep it locked in any longer i am going to have a mental attack, cover myself in lights, and dance around the streets
thanks for the hat and gloves
Maryanne: hahaha
go ahead and listen
what hat and gloves
Caitlin: the ones you are going to buy me at j crew in about an hour
Maryanne: haha. okay merry christmas
Caitlin: thanks!

12/21/2009
Maryanne: happy balls are here
Caitlin: yes!!
Maryanne: i bought some wasik’s chutney spread and some cheese for christmas
Caitlin: NICE
Caitlin: oh i wish I’d known you went there
Caitlin: this is not good – i am being overly flattered. right now (X) and (Y) are both gchatting me telling me how beautiful i am
Maryanne: hahahha
Maryanne: what would you have liked at wasiks
Caitlin: (X) texted me last night “looking at your fb pics. you are beautiful”
Caitlin: and now he’s going on again
Caitlin: umm, CHEESE
Caitlin: salami
Caitlin: pate pate pate
Maryanne: I can go back.
Maryanne: oh this pup ! is so cute. he’s on my lap looking up at me.
Maryanne: oh i have to go make the cookies……aaaah i wish someone was here to talk to me
Caitlin: i wish i was there talking to you and making cookies
Maryanne: i wish you were home.

These past 24 months have been tough, but Caitlin was tougher and she’s our example. She gets us through. Nick is busy with new projects. Andrew is teaching in Maine. Katie and Alvaro have moved to Spain for a couple of years. Sinead has moved back to Ireland, but continues to practice in London, part-time. Jess continues to raise construction funds for the Leo Project in honor of Caitlin and has raised enough to break ground on the land she purchased in Kenya! Thank you so much to everyone who has donated.🙏🏽

In case you missed Jess’s announcement: “In December of 2016, Caitlin O’Hara died. She was thirty-three years old and my best friend. When I spoke at her funeraI, I promised that I would do something extraordinary. I promised that I would make her proud and I promised to keep her light and her spirit alive. Because of my own health situation, it took time to put everything together but – despite delay – I am proud to introduce The Leo Project in honor of Caitlin E. O’Hara.”

She is in Mexico for Christmas and writes, “Today, I’m going to go from Spanish colonial church to church and light candles for my buddy.”

Nick and I are going to go see Bohemian Rhapsody. ❤️Freddie❤️ These are the days of our lives.

I will end with a letter Caitlin wrote to her friend Renu, someone who had a successful transplant but certainly went through her own hell beforehand. I posted this once before, but such wisdom can always bear repeating. ❤️

“The moments when I have felt most free, most OK with what is happening, and least anxious, have been those moments where I am able to let go and surrender. Interestingly, those moments seem to work in tandem with my faith in myself. I know I can trust myself to get through something, to hold on, and ultimately I can just let go of the rest. I guess since we have no idea where we come from, and where that strength comes from…that true belief in yourself and your intent to be a good person is sort of divine in itself, no more or less divine than believing in something someone else told you to believe in.

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. As humans we somehow know that we should aim to be good, and where does that come from. ? If I can follow the fact that I can trust in the importance of goodness, then I can maybe trust that goodness will come of goodness…. if that makes sense. Kind of like karma points. I have never felt like “why did this happen to me,” as I am sure you haven’t either. It isn’t even because of some virtue that I feel that way, it just has never occurred to me to be “pissed off” about my lot in life, or to think that there was some unjust reasoning behind it. Instead I honestly feel lucky sometimes that I have gotten to feel and experience things that others have to struggle longer and harder to learn.” –Caitlin

Caitlin and her dear buddy Kenley, Christmas 2012

I post occasional Kitten photographs and words on Instagram, and anyone is welcome to follow me there. My name is my own: MaryanneOHara

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DECEMBER 20 — Impossibly, a Year

FEBRUARY 16–Back in the Burgh

On November 16, three months ago today, we took Caitlin to the hospital for the last time.

Now we are finally back in Pittsburgh, packing up our apartment. I’d been sick with dread, anticipating this, but I knew it was necessary to do it personally. My sister and brother-in-law are helping us, and that means everything. Also, our neighbors in this building, and the management team that runs it, are incredibly kind and supportive.

We were grateful for this place. Caitlin was so comfortable here. She was able to easily move between the living room, kitchen, her bath and bedroom.

It was pet-friendly.

It was exactly what she needed, what we all needed.

Over time, the good days here will be what we remember best.

Screen Shot 2017-02-16 at 8.24.33 AM.png — *Adoration from a Pup*

*She got herself some wheels and got back some independence*

*Andrew & Katie running the 2016 Pitt 1/2 marathon for CF and Kitten*

screen-shot-2017-02-16-at-8-36-04-am — *Out at the PPG rink last February*

*Cooking Indian with the wonderful Shreya*

JANUARY 20–‘In the Dark May You See’

January 20. Caitlin’s been gone a month, and many of us are sharing a national day of mourning. My friend, the wonderful writer Jennie Fields, just shared two new poems written by her friend Kory Wells.

These poems really speak to me, and I hope they will speak to you as well.

“In the dark may you see all that you need…”

Click here to read the poems

Screen Shot 2017-01-20 at 9.18.29 AM.png

DECEMBER 24–All is Bright

*“Like the Madonna,” her Irish great-gran would most definitely have said.*

It’s Christmas Eve, a night for faith and hope, no matter what your faith, no matter what you hope for.

Last night, a visiting friend said he was angry, said, “That’s where I struggle with faith. How could any God allow that to happen?”

“No, no, no!” I said. “Please don’t think that. I need to remind people not to think that.”

Caitlin would not have changed the fact of her cystic fibrosis.

Let me underscore that: Caitlin would not have changed the fact of her cystic fibrosis.

Caitlin believed, as do I, that earthly struggles make you a better, stronger, and more loving and compassionate person.

I’m no super-strong saint. I’m missing her terribly. Horribly. Unbearably. I fall down on the floor. I curl up and cry. I walk down to the river and pace the lawn and wonder how I’m going to live the rest of my life. Today was the hardest day of all—denial and shock setting in, remembering that just one week ago we were filled with relief and happiness, knowing she had one more chance at transplant. But at the same time, I know certain things to be true: pain and struggle are terrible but all of the mess contributes to the growth of your soul.

When Caitlin was little, she required that I sing “Silent Night,” no matter the season, to put her to sleep. Even though, to me, it was supposed to be a special, once-a-year Christmas Eve song. My entire life, I’d loved Christmas Eve more than Christmas. I loved it to be silent and quiet and sacred—-dark but with a sky full of stars. Caitlin made me realize, from her earliest years, that all evenings could be sacred.

It was raining today and it’s still cloudy tonight. There are no stars to see, but I know they are there. And although I know Caitlin is there, somewhere, in the form of bright, loving energy, I will just miss her so much. Her face, her voice, her charming, lovely human presence. But I want to remind everyone of her own words, just one month before her passing, on November 20, on this blog:

There is so much suffering in the world … so much. My belief though at least is – the world was not meant to always be fair or fun or easy. The world is teeming with life, and death, and pain, and Donald Trump even haha. We just have to keep living. Step back. We are just tiny beings. There are lobsters living at the bottom of the ocean for over a hundred years. They have just been sitting down there through all of our lives and wars and lives before us. We aren’t that much different from lobsters really if you pull back a little. All part of this teeming painful wonderful world where so much is just luck. But we can choose to be kind, and to keep trying — we have the power.

“There is a crack in everything. That’s how the light gets in. ” Leonard Cohen

—Caitlin, November 20, 2016

And her very last words, texted to me to post on December 3, right before she crashed:

I love my mummy for everything she does – there are no words. Nor for andrew and my dad. They are all so caring. focused their lives directly on me. it is hard to reconcile how that can possibly be ok. But I guess it’s what we do as humans.

Heart and humor, and humility he said will lighten up your heavy load. Joni Mitchell refuge of the roads.

So much outpouring of love and attention makes humility a challenge, but I am so grateful for it. Heart and humor are easier. They feel like the only directions to go right now. Joni Mitchell’s words feel like permission to let go.

I do realize that not everyone who reads this blog is experiencing a big emotional moment in their lives …that sometimes life skates around on top where things are delightful and easy. And I’ve been there and hope to be back, even though I love to cry (with happiness!).
I couldn’t be further from the road right now in Joni’s song with its literal talk about the refuge of anonymity, cold water restrooms and and a photograph of the earth in a highway service station. I am consumed with myself and it’s boring and uncomfortable and embarrassing to have so much attention. And I LIKE attention. At the same time I can’t stop – in order to keep going I have to focus on myself. Self self self. It feels so anti human. It is. I rely on others completely and ultimately, finally will rely on another person to keep me alive.

My thoughts these days aren’t the skate on top kind of normal life thoughts. They’re up and down and trippy and depressive – and we have a lot of laughs. And lots of crying. And weird creative urges. I just want to say thank you for listening to what sometimes must be very emotionally over the top sounding writing. And to reassure you I don’t take myself too seriously. I do take life seriously though, I’ll be honest …. because it’s a seriously wild business.

Thank you for the support – I know I wouldn’t survive at all without it. It’s such an easy thing to say. But truly, i’d be dead by now! I am so very grateful even if I am a bit off the grid lately and I’ve faltered shamefully in my thank you notes – I don’t think I’ll ever get to some of them. But – I’m here, and thank you. And I love everyone very much and love hearing from people even if I am not able to write back.

–Caitlin

DECEMBER 22—Keeping Her Alive

Keeping Kitten Caitlin alive, the way museums do.

Caitlin was, honestly, a bit of an art history genius. She found her calling in an AP Art History class at St. Mark’s School —-looking at slides in the dark, there was nothing better, she always said. At BC, she received the Art History award, and graduated magna cum laude. She would have loved to have gone on to further study in New York or London or Paris, but her health had already started restricting her.

Here she is, immortalized in Pittsburgh, earlier this summer, at the Andy Warhol Museum. I love how she takes off her oxygen at 3:47.

http://warholscreentest.com/v/AWM/Caitlin_s_Screen_Test-63603419257002

DECEMBER 11 — Light Snow, Quiet

Sorry for the lull in updates, but things are pretty quiet in the CTICU today and that’s a good thing. It’s been snowing lightly all morning. Christmas carols are playing in the lobbies. Winter has come, and we always felt she’d be transplanted in winter.

She’s had dressing changes, adjustments to the ECMO, constant monitoring, tinkering, to keep her stable.

Can I just say right now that the ICU director doc, Penny Sappington, is probably the most dedicated doctor I’ve ever known? And we’ve met a lot in Caitlin’s life. When she’s on the floor, which is thankfully almost always, I relax. Sort of.

The nurses, ECMO team, and RTs are phenomenal, too. Caitlin has most often had Erin, who is one of those absolutely perfect nurses. She’s off for a couple of days, but has already texted me to make sure we’re having an okay day.

Just typing that makes my eyes get all weepy.

All this is to say that they are taking really good care of the kitten. The kitten we’ve always known is really a tiger. 🐱🐯 She’s mostly sedated to keep her calm and keep her oxygen saturation up as high as possible, but when she’s aware, she fights, digs her nails into us, tries to shout. Her spirit is so strong.

I play the music she asked me to play for her if she was ever unconscious. And I tell her things—-mainly that her only job now is to stay calm and be strong and trust that we’re taking care of her. I read essays from the new Mary Oliver book. We constantly tell her how much we love her.

So we had almost 3 years to prepare for this, but only last Sunday, when she was clearly deteriorating, did I think to ask for her phone password, and account information for the bills she pays. I’m home for a couple of hours paying my own bills and trying to figure out hers. I opened her computer to this image: a screen shot she’d taken when she was starting to really feel sick but still managed to not look so bad, right beside the kind of lists she was constantly making to keep track of her inventories, etc.

Her life has been hard for a very very long time. Much more than she ever let on. I hope she gets this second chance, and is able, eventually to just relax and live a little.

As I am writing this, our dear friend Reggie sends these happy memory photos of the Christmas she once spent with us.

Nick’s good friends are doing their best to get a lot of awareness out there, not only for Caitlin’s critical need for lungs, but for all the critical need out there. We’re so grateful!

I’ve mentioned before how wonderful everyone here has been. Food is coming from everywhere. Every time I realize I’m starving, a delicious sandwich or salad turns up, delivered by caring friends we have made here. And our 15th floor neighbors, Ralph and Mary—–man, they are like family. Here’s Henry, quite comfortable with his pal Ralph this morning.

And for everyone doing the St. Therese novena, I opened my Twitter account this morning and this was looking at me.

–Maryanne, with Nick and Andrew

NOVEMBER 19–Saturday Afternoon

Last weekend, something happened that made me starkly aware of just how much someone has to lose in order for us to gain.

Our house is on a busy road, on a bad corner. Long ago we erected a large fence along the front. We sound-proofed our walls. We turned the focus of the house toward what was tranquil and pleasant: the yard and gardens, the river and trees.

Late on Saturday afternoon, Andrew was with Caitlin in Boston and I was home. I was on the phone with a friend, talking about our imminent move to Pittsburgh, and telling her how I had heard that someone at UPMC had gotten “the call” that day. As I talked, I wandered into the front of the house. Over the top of the fence that separates us from the busy road, I could see a fire truck. I dismissed it as a false alarm—-they often happen, and in fact, a neighbor’s chimney had been pouring smoke a few hours before.

The next morning, we heard the news. A man had taken our corner too fast. He hit a tree head-on, and died on impact. Our road had been closed for 4 hours, but because of all that insulation we put in years ago, we spent a quiet evening just a few feet away, blithely unaware.

For every lung transplant to happen, someone has to lose his or her life. That is the stark reality of the situation and there is no avoiding it. As I have mentioned previously, Nick’s beloved brother Willie died unexpectedly, years ago. The only positive thing that came out of that tragedy was that seven people got another chance at life. Caitlin has a friend who is seven years post-transplant. Every year, she sets a new goal for herself, to honor her donor. Saturday’s accident was a reminder that we have to try to get through this time with as much gratitude and integrity as possible.

As Caitlin says, “There is no reconciling the trade, of life for life, and no justifying it.”

–Maryanne