“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
I am not the first person to compare time to a river, but from my desk here, the comparison is ever-present, the imagery apt. Drop something into the river and off it goes. It’s never coming back.
It’s six months today. And a Tuesday, just as it was then. Another solstice.
And the great world spins.
Inspirations–4 of Them
When Caitlin was born, she weighed 9.4 lbs and measured 21 inches long. For the first year of her life, until she started developing one pneumonia after another and ‘failed to thrive,’ she was in the 95th percentile for height & weight. And when she was little, I mean really little–1st-2nd grade little– she loved to run. She could run as easily as anyone else and always won the races.
Years later, we would all do 23andMe and see that she and her naturally-athletic father shared a special genetic variant.
I always wondered what if.
As a college freshman in DC, her up-and-down health was at a ‘good’ level and she rediscovered running–doing miles at a time, big loops between the Lincoln Memorial and the Capital. Even after she transferred to Boston College because of declining health, she liked to run when she felt well enough. But by 2004 or so, she needed oxygen to sleep and to fly, and to do pretty much anything that raised her heart rate. (Blood oxygen levels drop with these activities.)
By 2011, she had to move to an apartment with parking and an elevator. She needed to plan trips around what kind of walking or climbing would be involved. But she and Andrew discovered that she could still ‘hike.’ Andrew would carry her up a trail and then she could walk down.
Eventually, she bought one of these things: an adult carry pack. It made her weight easier for Andrew to carry.
The last couple of years, with hope for new lungs a reality, she cautiously let herself hope that she would really run again. And just last fall, she bought herself this book, and had a plan for recovering, post-transplant, by climbing all the featured stairways.
By chance, two of Caitlin’s cousins challenged themselves physically and mentally this past weekend, in honor of Caitlin. In Australia, Janet Jordan faced her lifelong fear of heights and climbed the Sydney Harbour Bridge to raise funds for the pediatric Cystic Fibrosis Unit at the John Hunter Hospital in Newcastle, NSW.
On her page, Janet talks about a dream she had in which Caitlin challenged her to climb the bridge. As the day of the climb approached, nerves set in. On Saturday, she wrote, “Today’s the day I face my fears, and keep my promise.”
Her next update: “I did it!! What started at 4.30 with an hour long safety induction ended at 7.50pm with the greatest feeling in the world. Photos to come.”
Back in western Massachusetts, Caitlin’s cousin Melissa Bavaro Klevans and her husband Sam challenged themselves to a 26-Mile, 1-Day EXTREME Hike.
⬆️ One of those peaks is called Misery Mountain.
The hike started pre-dawn and took them 13 hours to complete. It was tough and toward the end, Melissa’s feet were in such pain she didn’t think she would be able to finish. But she looked at Caitlin’s photograph, took off her boots, and hiked to the end in her socks. She shared her thoughts with me:
“After the hike I was able to process everything that I had gone through on the mountains and it came down to this one little thought. It’s NOTHING compared to what my sweet and beautiful cousin had to go through. Nothing.”
About the breakfast the morning after the hike, she said, “We were able to speak if we wanted to. I hate public speaking, but I needed to say something. I talked about organ donation. I expressed the importance of going online and signing up and that the license sticker was not enough. The great thing about me moving past my fear was that I got through to people. I had at least four people come up to me after and thank me for my speech. They had no idea, as most people don’t. That was powerful.”
While I was in Pittsburgh, I met some incredible people. One of them was Barry Lavery, who went into the hospital for routine surgery three years ago and discovered he had ALS.
Like Caitlin, Barry has faced his fate with grace and humor and tenacity. He and Caitlin had lots more in common: a love of philosophy, a love of birds. Wise, witty senses of humor. But they never got to meet.
He’s now on hospice care and he tells me that when he “hops his perch,” he’s going to seek out Caitlin. “We will drink good Haitian rum, grow wings and feathers and soar…”
Last week Nick and I were out on the river at dusk, and the air was full of the sounds of birds and waterfowl. I sent Barry a little video, to share the moment. He texted a response that ended, “Let the river heal you. Remember the quote from a River runs through it.”
We are 5+ months out now, a time when a lot of grieving people notice that they have been—-unintentionally of course—-left alone with their grief. We are grateful this hasn’t happened, that so many wonderful people continue to reach out to us. Thank you, thank you. It means so much…. because I will be honest—-it is not getting easier. In many ways, it is worse.
We lost Caitlin in winter and because winter lasted forever, time felt elastic, a time in which she still existed, was still somewhat ‘of the present.’ Now, New England has done its thing and jumped from raw/rainy/nasty/cold to suddenly-summer. A new season that emphasizes the finality of her absence. Yet every day we still experience the jolt: it can‘t be true. That jolt that is followed by images of her face, her voice, her presence. The despair of never seeing her again.
Yes, I do get a lot of ‘signs,’ but the human me is still missing the human her. And I know it’s the same for Nick. Philosophical reflection can only give you so much comfort, so early in this sad game. But… writing on the blog helps bring her close. For the past month, I’ve felt I should write something, if only for myself. So here goes.
Caitlin and I were last in London together in 2012, a year that was magical for a ton of reasons. During that visit, on her own, she visited a place she had heard about and loved the moment she stepped inside its walls: the Chelsea Physic Garden, the world’s second oldest apothecary’s medicinal garden.
This past April, Jess and I, as well as my sister Kate, traveled to London, where we spent time with Sinead and with each other. We visited the Chelsea Physic Garden in honor of our buddy.
It was as beautiful as Caitlin had described, and also served to remind me that modern medicine is still quite new, that it is all still—really—so primitive. It also reminded me, once again, that Nick and I were lucky to have our CF child for 33 years, to have lived in the first century where children weren’t expected to die.
Everywhere, there were reminders of the battle Caitlin faced all her life with those diseased lungs.
Of course I brought along the photo.
And found a little hide-away.
It reminded me of a beautiful drive that Caitlin and I made through the Arnold Arboretum, with Henry, right after she was first listed three years ago.
On other days, we saw some art, both official and of the street.
BACK IN MASS
I returned in May to a month I had been kind of dreading. Mother’s Day and my birthday are always back-to-back, and for three decades, waking up to the surprises my daughter had left for me made those days more special than any other holiday. But everyone made it really nice for me.
I can make myself cry thinking about it.
Look at these sweet babies. The hidden one was born a day later. 🙂
Now it’s June, and Facebook keeps serving up “On This Day” memories, like the ones that popped up yesterday to nudge me into writing this post.
That time in 2012, Caitlin said goodbye to me in London to travel to the apartment she had rented in Paris. It had been a dream of hers—-to spend long, solid weeks, living alone, in the city she loved so much.
Her (truly) giant, heavy suitcase contained weeks worth of meds, syringes, neb cups, plus her bulky nebulizer and portable oxygen machine. Such a big suitcase and only the tiniest bundle of clothes and toiletries. In another life, she would have been a backpacking Peace Corps volunteer.
I was worried but full of admiration. And off she went, that June 1st, 2012 morning, in a taxi to the Chunnel train.
JESS & ANDREW
Everyone asks how they are. Here are updates:
Andrew is still in Vietnam, teaching, but says that he is coming home soon. I sent him pictures of these tacos I made with Maine lobster meat, to try and lure him. I hope it worked. He’s been eating things like bugs, and although he finds his Vietnamese diet healthy, he’s missing Maine and his friends and family.
Last weekend, for fun, he played in a big poker competition. As one of the finalists, he won a trip to a Manila casino to continue the competition.
But the Manila casino is the one that was bombed today, Isis claiming responsibility for 37 killed.
Yet another example of how precious ‘it’ all is. Our lives. Our planet. I have joined an activist group that some of my very dear friends are running: Mothers Out Front, a fast-growing organization that is “mobilizing for a livable climate.” Western PA friends, I will be getting in touch, as the group needs a Western PA presence! I went to the annual fundraiser a couple of weeks ago and Gina McCarthy, former head of the EPA, was the most kick-ass, inspiring speaker I’ve heard in a long time.
**OKAY*** Again, you can’t make this stuff up! JUST as I typed that paragraph, I was distracted by a text from Nick. I opened the IM window, which also revealed my Gmail window and what email had just arrived into my inbox? This from Gina McCarthy.
Anyone, anywhere, not just here in MA, not just PA: I urge you to check out Mothers Out Front, and feel empowered by joining with others who speak your language.
Jess is still undergoing her cancer treatments every three weeks. She’s had some complications but they have not stopped her from traveling. Last week she got back from a beautiful boat trip in Croatia with her mom and sister, and today she is headed to Barcelona.
She’s a real-life angel. Trust me.
I’ve been sorting through Caitlin’s things and I will post some of her stuff soon.
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.