“It’s part of why the idea of souls makes sense to me. This place is just like a ropes course for souls. A learning center. It never changes and the collective body of humans can never sustain their progress too too much or else there is not enough to challenge the souls. Imagine all the people living life in peace ✌️ John Lennon – well that wouldn’t really work if you believe we need to be challenged to grow.” —Caitlin O’Hara
Caitlin was actively listed for a lung transplant on April 24, 2014. We were ready, expectant, full of hope.
She kept herself strong and she kept herself busy.
She was grateful.
She had plans.
We never, ever expected that she would have to wait 2 1/2 years. But when she went into the hospital for the last time, with her high score, she was told that offers were coming in. We figured it would happen any moment. We were excited and lighthearted, and on the night of November 20, she asked me to push her chair through the hospital as fast as I could, to music.
In a just world, she would still be with us.
Spread the word, far and wide.
Somebody somewhere recently posted a meme I agree with: Belief + Doubt = Sanity.
That said, I’m just going to relay what happened.
Previously, I’ve talked about the fact that three of us saw a couple of well-regarded mediums and that Caitlin ‘came through’ with details that no one could possibly know.
Here is a small part of the transcribed recording of my session. K is the medium:
K: She keeps also showing me that she’s very music-oriented. She’s saying, “I’m trying to send my mom music but she didn’t always like the same things that I listened to.” But she’s very music-oriented and she’s wanting to bring through speaking to you through music as well. She’s saying, “Just keep paying attention.”
K: Now, going back in time, she makes me feel like you love–I feel like there’s shared undertones of music that she grew up with with you. Did you listen to Joni Mitchell? She keeps saying, “Listen to Joni Mitchell.”
Me: Joni Mitchell??? (I was like, what???)
K: Yeah. Or something of this era, maybe?
Me: She loved Joni Mitchell. Loved her.
K: She’s saying, “Let me speak to you in Joni.” (laughs) “When you put this music on,” that’s what she’s talking about, when you want that experience, it’s like you have these express pathways to her, when you put that music on, you read her stuff, it’s like the sense of feeling her essence come to you, okay. She’s saying, “Mom, it’s more important than any words anyone’s going to say to you.” It’s the essence of her soul just being connected to you.
So that was in February. And we’ve been traveling and I haven’t listed to a whole lot of music. But last week, some of Caitlin’s close, local friends came to dinner here. Instead of my usual Pandora jazz stations that I put on for dinner gatherings, I decided to create a Joni Mitchell station. As I cooked, I noticed that it was playing no Joni, and that the songs it was playing seemed ridiculously message-like. I started jotting down the titles.
Spirit in the Sky, Norman Greenbaum.
Let’s Live for Today, The Grass Roots.
Turn, Turn, Turn, The Byrds (To everything/there is a season).
Stairway to Heaven, Led Zeppelin. (Aside from the obvious, we used to laugh with horror because a volunteer harpist who played in inpatient units at Brigham & Women’s Hospital always played that song!)
Last Dance with Mary Jane, Tom Petty. (This one has special significance because it was a lifelong joke. When her fifth-grade class was graduating from Lower School, they all got up on stage and sang their made-up lyrics, “Last Day in Lower School,” to the Tom Petty tune, and they sang in such a morose and funny way, we parents couldn’t stop laughing.)
The Sound of Silence, Simon & Garfunkle. (see earlier post)
Finally, a Joni song came on, one I didn’t know. At first I thought I wasn’t hearing correctly.
Willy, Joni Mitchell. (Nick’s brother Willie died at age 29, when Caitlin was 5. Caitlin loved him.)
The friends arrived, and someone said, “Hey, this sounds like Caitlin’s music.” I didn’t really pay attention after that, but when we sat down to eat, I mentioned how the music had been a bit spooky. And as I was talking I realized what was playing. I couldn’t believe it. I said, “I can’t believe this.”
You Can’t Always Get What You Want, Rolling Stones.
I ran upstairs and brought down the little notebook I recently found in her bedside table. She had only written on one page, back on January 14, 2014 when she was first on 24/7 oxygen and very sick, obviously ready to be listed for transplant.
She had written, “You can’t always get what you want, and if you try sometimes, you get what you need.”
She went on to tell herself to “Let go. Just be strong. You will not be able to predict the future. Accept that. You are getting what you need.”
But “It is going to be scary and you might die.”
Last Thought for Today, on this 4 Month Anniversary
Yesterday, I went to the mausoleum. I’d only been there once before. I don’t find it comforting, and I don’t feel my kittycat there. I mainly went there to cry, after a particularly good Daoist Yoga class. But while I was doing so, I realized a crazy thing. Kitten is in the space adjacent to someone whose last name is PARIS, and whose first name is BIRDIE.
I texted a few people to tell them. I wrote, Come on !!!
And as I drove out of the cemetery and merged onto the main road, I found myself behind this:
You can’t make this stuff up.
Here’s a little more of what Caitlin herself wrote about writing, and inspiration, and music.
I published this post, got in my car, and this:
Also, I’d almost included a link to this but had taken it out. Now I will put it back in, as a few people called my attention to it. The lounge-y cover of the song that played at the end of BIG LITTLE LIES. Have been listening to it over and over.
On Tuesday, I spent the entire day at Caitlin’s Boston apartment. I emptied the Pittsburgh boxes, decided what to do with the contents, broke down all the cardboard. I made the bedrooms look inviting again. I did laundry there for the first time since last summer, when we briefly escaped Pittsburgh for home and Caitlin got to spend a week there. ‘The best week of the last three years,’ she called it.
As I worked, I realized that Caitlin’s little laundry basket held more than just the two towels I thought were in it. I found one of her favorite head scarfs, the one she wore with such chic grace in the photo below. I also found the “MEOW” sweatshirt I had searched for and thought lost.
These belongings–I truly wonder how much damage I’m doing to my heart when I sob over them, but…what else can you do? Repression seems worse. Better to grieve and cry and stuff the little meowing sweatshirt against my face and tell Caitlin how much I love her?
I think so.
The only problem was, Tuesday had seemed like the right day to stay in the city all day because I had planned to go to the evening book launch of someone I really like– someone Caitlin really liked, too: Randy Susan Meyers.
Randy used to work with battered women, and now she writes the kinds of novels that hopefully make people stop and think. She only started publishing when she was in her 50s, in 2010, and she has an impressive work ethic. On Tuesday, she was launching her 4th(!) book, The Widow of Wall Street, a well-researched and in-depth look at a character based on Ruth Madoff (what did she know??) The launch would be at Brookline Booksmith where she would be in conversation with Matthew Gilbert, television critic at the Boston Globe.
Randy and Caitlin met a few years ago when Caitlin interviewed her for the Literary Traveler website. Caitlin was so taken with her! She enthused about how smart and articulate Randy was, how funny and engaging. The admiration was mutual.
I had planned and really wanted to go to the launch, but now, holding the headscarf and sweatshirt, what had sounded great a month out, suddenly became something I began to dread. I would have to see people. People I like!–but that didn’t matter. All I had the mental energy to do was take those items home and flop on the couch and watch something like Feud.
I know I have permission to do anything I want right now. And I’ve been good about following that wise ‘rule of bereavement.’
But. I also want to be a person in this world. I always tell myself, when I’m reluctant to do something, that later I know I will be happy I did it.
And I thought of Caitlin, and how she would have trudged down the stairs to the Booksmith event area with her oxygen tank.
I thought of how, if all had gone well, she would have accompanied me, free.
I went. But I decided to show up right at 7, so I could slip into the back. Yet out on the street, the first face I saw was that of someone I adore, Delia Cabe, with her friend Meta Wagner.
And it was great, how I felt instantly ‘normal’ and comfortable again.
We went down to the event area, the site of happy events of my own, where people were still standing about, talking. There was another writer friend, Laura Harrington. We had been planning to talk soon and now here she was.
The evening was excellent and uplifting and being there, surrounded by people who love and support what’s best about our culture, was heartening.
I have no real control over how people read what I write, but a consistent theme of mine has always been a preoccupation with the personal and cultural salvation that is art. And venturing out, when I really didn’t want to, reminded me of how true that is.
All the people I mentioned have books out or soon to be out, so here you go:
The Widow of Wall Street, by Randy Susan Meyers
What did the wife know?
Pups! Dog park people!
Take the quiz!
Compelling family drama published by the incomparable Europa!
A couple of comments I received yesterday:
“Thank you for sharing more stories of Caitlin’s amazing life. I think once again of when you told us she tipped generously so that’s what I have been doing whenever I go out to eat. It is fun and I think of Caitlin when I do.”
“It’s funny, I think of her when I tip now, or donate. I’ve always been generous but now I’m over the top. Thank you for that.”
I love that. So much.
I’ve had some occasions, in the past few months, when I’ve gone over the top myself, and each time, I’ve felt like it wasn’t my doing at all, but Caitlin saying, go back and give her some money! Or Make his day!
Everyone’s been asking about Andrew and Jess. After Kenya, Andrew traveled to Vietnam. He’s teaching there for a while, figuring things out. This is a favorite dish of his:
Jess has been traveling a lot, as well. Every 3 weeks she goes home to San Francisco for her treatment, then takes off again.
She’s figuring things out, too.
As are we, though we are home now.
We were in Florida last week. Every time we asked Kitten for a sign, we got one, to the point that we were laughing. Here are a few pics. (I’ll explain the hawks one of these days…)
A courageous ray of light..
Caitlin’s cousin Melissa is a sweet and noble soul, and her write-up for the “Xtreme Hike” (30 miles in one day) that she is training for in honor of Caitlin, to raise $$ for the Cystic Fibrosis Foundation, both breaks my heart and uplifts it at once.
Caitlin was ‘a courageous ray of light,’ she writes, and this photo, from Melissa’s wedding day, reminds me of just how true that was.
The wedding had been planned for months. We were hosting the ceremony at our house, under the beautiful willow tree by our river. Caitlin would be a bridesmaid.
But just before the wedding, Caitlin got sick. She had to start one of her 3-week courses of IV antibiotics. Besides being sick enough to need 3 weeks of IV meds, taking them always knocked her flat. Typically, there was a 1-hour infusion of one heavy-duty antibiotic every 8 hours, plus a 4pm-ish dose of another one—- usually the worst one—- the one that would really make the nausea kick in and make her lie down and say, ‘Suddenly I feel awful!’ As if she was surprised. Even though it happened every day.
‘Suddenly’ had become a joke, a word we used whenever we wanted to indicate we weren’t feeling well during a time when of course we weren’t feeling well.
But this particular June, she worried. She didn’t want to let Melissa down, but she also didn’t know how she would ever make it through the day: the morning preparations that would be taking place in our house, the ceremony itself with all that standing, the 4pm infusion and then the hours of the reception.
But make it through the day she did. And aside from the telltale bandage that always covered her IV lines, she never let on that she felt like anything other than the supportive bridesmaid and loving cousin that she was. Because she didn’t want any attention on herself, and especially didn’t want Melissa to worry about her, or feel bad, in any way, on her wedding day.
Sweet Melissa (yep, named after the Allman Brothers song by my hippie-ish brother Billy, her dad), is grateful for the support she’s received for this hike. She’s psyched to do it, and she’s training hard. It happens in June.
Caitlin had really hoped to participate in these kinds of fundraisers after transplant. She had hoped to do a lot of things. Hike. Run again. Climb stairs.
But let’s not forget that she did get to do a lot of things, like live beyond birth, that a CF kid 50 or 100 or many more years ago would never have been able to do, thanks to all the research that so quickly benefited her after her diagnosis, and which continues to benefit other sweet and wonderful beings.
Life expectancy, in general—-well, here you go:
It will be fascinating to see what the future holds. We are still so primitive in so many ways.
I’ve never been one to say “life’s not fair,” or to be angry about Caitlin’s CF, or about her (not-inevitable) decline and need for a lung transplant. I’ve always tried to be philosophical and optimistic and I truly do believe that tough experiences ‘grow your soul’ and make you a more compassionate human being.
Nick and I are in Florida, at a hotel with an atmosphere that feels more like our beloved Virgin Islands than “Florida.” The hotel plays soft reggae in the background. There are palm trees and thatched buildings and the water here is a Caribbean blue.
Being an only child, Caitlin tagged along on pretty much every trip we ever took–either by herself, or with Katie, or her boyfriend.
So I keep imagining her here–ambling in her slow way across the pool deck. I see her big sunglasses, her long hair, and I keep thinking I was a fool to have had one hundred percent faith that the transplant would happen, and that she would prevail.
I want to go back and cherish every minute even more than I did.
I keep thinking of her first days on ECMO and how the surgeon said, “We’re going to get you transplanted, Caitlin.” And, “I have a good feeling about this weekend.”
He was trying to be positive, and I’m sure he truly believed his own words.
I keep thinking of my own words, written in Cascade, where I describe a feeling that has always haunted me and which haunts me now:
There had been other such days—the long-ago morning her mother took sick, the afternoon the telegram spelled out the fact of her father’s first heart attack. At the ends of those days, Dez had looked back through the blur of hours to the innocent mornings, which started so normally. An egg, a piece of buttered toast, plans for this or that. And if those days had stayed normal, if the flu had passed through her mother’s body, through her brother’s, if her father’s heart had not seized, there would be no marveling at the day’s normalcy, no reeling from being blindsided.
No, normalcy is taken for granted until it’s gone.
So it’s three months today. December 20, a day that started with a doctor’s pronouncement: “She’s stable, but…”
I haven’t been moved to write lately. Thank you to those who have been concerned and checked in. Honestly, at this point, it’s not any easier. It’s harder. Every day I try to unpack at least one box, and every little thing is a reminder.
I’ve also started to go through all the cards. We are so grateful for them, and I have postcards I want to send to everyone. But it will likely take months.
An interesting and comforting thing: three of us have seen very well-regarded mediums and Caitlin has come through… with concrete, distinct details, many of which no one but me could possibly know about….
I am ruminating on all that and will probably write about it at some point.
I will say that in my session, Caitlin conveyed that she would like her writing to be heralded (her word.) So I’m going to continue to post her musings.
Here are some email snippets that she sent to a friend she never got to meet, a young woman who had a successful lung transplant a couple of years ago. Renu has given me permission to share them. I’ll just post a few for now.
ive done a lot of soul searching (cheesy term but true) the past year, and ive read a few things that have been helpful. one thing i re read was emerson’s self-reliance which i only remembered from college and high school, but its cathartic to just read the philosophies that are so aligned with what i feel like i know i can trust fully and have full faith in – that is – myself, my intuition. and also Gilead by marilynne robinson. i am always fascinated by people who are really intelligent and intellectual and yet still very christian – or return to religion after a lifetime of academia (that is not me, but it interests me how those two opposing sides manage to come together). also this book Tolstoy’s a Confession. its really small and he wrote it at the end of his life when he was practically suicidal because he was driven so insane by his inability to have faith, and his in vain attempts to arrive at it logically. i’ve re-read that many times over the years.. (it has a good conclusion)
and what you said about surrendering – i completely agree that 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. so 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).
omg plato’s republic. if i was home i could rustle up my paper on those. i have a weird question for you – since it feels like i went to college SO long ago ….does everyone bring computers to class now? or still notebooks? i feel like a weird old fogey asking that…
haah ok, and btw, you totally echoed what i wish we could do too…go to a museum and wander around and have tea! do you ever get to the MFA? I like it, but I was just thinking about it yesterday because I was reading about the Met and how they redesigned their logo and everyone hates it. And that they are redesigning a lot of it to make it “more accessible to first time visitors”. They did that recently with the MFA, with all the changes, and while I can’t say the changes are bad…I have to say I miss the old MFA….and the article about the Met brought this up too…..that people who used to enjoy getting lost in the old one will miss the new organization. That’s exactly how I felt…I used to love certain areas of the MFA that were totally desolate and quiet….certain asian rooms, off the beaten path, that no one would go to unless they were specifically interested in or knew them. The buddha room, which is still beautiful, but now always so much more crowded because its so easy to find. Last time I went, I found that there were people in every room, there didnt seem to be anymore hidden spots anymore. It made me sad. I remember taking drawing classes there as a kid, and sitting in a quiet room somewhere in the corner…wayy off the main egypt rooms, sketching egyptian carvings on a carpeted floor. Now its bright and accessible. I don’t know that that’s a good thing? Maybe I’m a scrooge.
Anyway, I’d take any museum right now. !! Let’s do that sometime, when I am better.
Patience….its being hammered into me i guess. ha this was the best line — ” it feels like limbo with a stopped clock and you just want to scream and throw things but that might make you tired, so not worth it.” — hahah. i laugh when i see people talking about great outlets for stress – running! just yell! go for a brisk walk! punching bag! dance! im like, well i have no voice and no lungs to propel my body…im not someone who wants to smash anything and then just clean it up….so i’ll just sit here and keep in all inside! hahah. i don’t really feel that sorry for myself, but you know. i remember once when i was younger, maybe about 13, and upset about something (non health related) i took a dish outside and smashed it on the patio. it was like i knew people sometimes smashed dishes when they were mad and i wanted to do it. but it was like i was watching myself do it. i picked a dish i knew no one cared about. and then when i smashed it i remember the deflated feeling of just being like, well, i guess i’ll clean it up now. i guess im just not that angry of a person 🙂 more of a hysterical sobber.
ON TO OTHER THINGS. I hope I didn’t bore you with my novel about what’s been mentally going on in my head. Right and wrong and everything in between. I am reading Primo Levi’s Periodic Table right now, and every night its like a tonic – i only read one chapter – one element. Do you know it? I share a birthday with him, and maybe i know too much about astrology and am unfairly influenced, but i can’t help but feel an incredible kinship to and relation to his writing. I have read his other memoirs of being in auschwitz. they are hard to read yes, but more i feel like a window into a study of humanity that most of us will luckily never see…but should at least read about.
Hi! I’m so glad you wrote. I’ve been wanting to write all weekend but haven’t. And now I’m sitting in my room just hanging out. We are in DC actually. We came here for thanksgiving. Andrew and my mom and I drove from Pittsburgh on Thursday and my dad flew in from Boston. It’s fun! No real reason. We just like DC. I went to GW for two years so I know th city. And my moms new book is taking place here so there was some research she wanted to do. Anyway it’s been nice to do something different from just being relatively alone in Pittsburgh. Staying at the hotel is really relaxing. Room service etc. Today I took it easy enough that when we went out to dinner later I felt really “good” …for me, and we went to this great French bistro. I love classic French food. And I was so hungry for once and had a great time and just felt a few hours of like I was actually having fun and not just trying to be a participant for the sake of making an effort …