Monthly Archives: April 2017

APRIL 24–Three years ago today.

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.

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She was grateful.

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She had plans.

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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.

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ORGAN DONATIONS ARE DESPERATELY NEEDED

Spread the word, far and wide.

APRIL 20–Speak to Me in Joni

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.

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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:

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You can’t make this stuff up.

Here’s a little more of what Caitlin herself wrote about writing, and inspiration, and music.

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Update

I published this post, got in my car, and this:

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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.

 

APRIL 13–Venturing Out

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.

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Photo, against the found headscarf

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.

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With Laura Harrington & Monique Hamze

 

All the people I mentioned have books out or soon to be out, so here you go:

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Out Now

The Widow of Wall Street, by Randy Susan Meyers

What did the wife know?

 

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Coming in June

The Storied Bars of New York, by Delia Cabe

Cocktails! Stories!

 

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Out now

Off the Leash, by Matthew Gilbert

Pups! Dog park people!

 

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Just launched

What’s Your Creative Type? by Meta Wagner

Take the quiz!

 

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Coming in July

A Catalog of Birds, by Laura Harrington

Compelling family drama published by the incomparable Europa!

 

–Maryanne

 

APRIL 7–Paris Is Always a Good Idea


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:

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Bun Ca = Fish Noodle

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…)

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She would be cackling.

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This was actually in Boston, before we left. xo

–M

APRIL 6–Master of the Suck-It-Up Smile

A courageous ray of light..

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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.

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At Melissa’s wedding ceremony

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:

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Seize the day, my friends

It will be fascinating to see what the future holds. We are still so primitive in so many ways.

–M