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

MARCH 27–I Keep Thinking..

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.

But.

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.

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Norman Island, BVIs

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.

–Maryanne

MARCH 20–Checking In

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.

7/24

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).

2/18

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.

 

2/12

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. 

 

1/6

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.

 

11/30/15

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 …

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Feeling good at the French bistro in DC, 2015

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DC protest, circa 2001. Love that chubby Freshman 15 face!

 

–Maryanne

MARCH 4–Knock knock knockin’

Yesterday I heard Knocking on Heaven’s Door (different versions) 3 times before 10am. That got me thinking about Caitlin, and about Bob Dylan. Here’s a text she wrote, in November, about him winning the Nobel Prize for Literature. Something to read on a frigid Saturday.

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The more I think about the Dylan thing the more I

think it is wrong. I think there’s a whole thing where

we’ve got this idea of the arts being lumped in

together. That all forms of creativity fall together

and — I think like Simeon said — create overlapping Venn

diagrams.

 

But what if they weren’t the overlapping Venn

diagrams that we all kind of just assume they are?

Perception is the question, right?  Music is words +

sound ….but it is reminding me of the arguments in

alternative medicine. Cancer feeds on sugar cells.

Cancer dies in alkaline environments. Subtract sugar

cancer dies. Drink alkaline water and cancer dies. It

misses the point that you can’t just add or subtract

things to your body–that the body is designed to

take whatever you give it and do what it’s going to

do to maintain homeostasis. You could say homeostasis

— the equilibrium we feel and enjoy as humans

physiologically — is the same as a FEELING,

generally. Ok? So like — maybe arts aren’t defined

the way we define them at all. Maybe they’re really

entirely separate. The feeling you get from a

painting that moves you is as separate from the

feeling you get from music as a worn out kidney is

from a worn out liver. Sure they’re all organs. But if

your lungs fail your homestasis will be threatened in

a way much different than if your liver fails. How do

we FEEL when we see a painting we love. How does

that compare to when we read a sentence we love.

And to when we listen to a song that makes our

heart swell. I know for me all those feelings are very

different. They feel different, they seem like they’re

coming from different parts of my brain. They aren’t

just all coming from the art department. Or the

creativity “side”.

 

I guess it kind of goes a step further though

because yes if I clang spoons together and start

yelling that can be called music. But what makes all

of these different forms GOOD. What makes them

provoke a feeling etc etc all the stuff that basically is

needed to win a Nobel prize. It has to be these

things that we feel and really it has nothing to do

with the fact that words were used. It’s like awarding

the best pie award to a cookie because it used sugar.

Also, the point isn’t the ingredients! It’s the result. And

what we get from music isn’t what we get from lit.

 

And they’re all arguing “well the cookie was too easy

to make” or “the cookie didn’t even taste good”

….but that’s not the point. The point is it’s a cookie.

 

Which some people were saying.

It just seems obvious now.

 

Regardless I am still weirdly glad he won?

 

–Caitlin

 

 

 

FEBRUARY 23– Eleven

A powerful pulsing of love in the vein

We are in Arizona. We packed up Pittsburgh, sent all those boxes back to Massachusetts and came to another ‘bigger-than-we-are’ place to regroup.

Pittsburgh was tough. It was also comforting. We were able to see a few of the good friends we made there. Mary and Ralph, our wonderful neighbors in our equally wonderful building, hosted a gathering for us on Friday night. We included some new friends: Diane and Mallory Smith, who, like us, had to relocate to Pittsburgh to wait for a lung transplant for Mallory. They’ve only just arrived. They are from LA, a crazy long way from home. We introduced them to some of our Pittsburgh people.

People have asked, as did Mallory’s mom, Isn’t it hard to be with people who still have a chance? Or who have had successful transplants? Of course. But is it easy to be with them once you overlook your own pain and come to love them and realize that you want only good things for everyone? Yes.

Organ donor awareness must continue, please.  For the brilliant and beautiful Mallory, and for everyone else.

Boarding a Greyhound in Pittsburgh…

On Monday the 20th, at 5:45am, we left in the dark. It was so hard to walk out of our home of the last two years, to take one last look and close the door.

We had arranged for our favorite driver, Jim Stanley, to pick us up. You feel safe with Jim. He is an ex-Marine and an all-around good guy. He drove Nick and all of our visitors back and forth from the airport the past two years.

Jim is also a very talented acoustic guitarist. As we merged onto the on-ramp, he said it was hard for him to talk about hard things, but that he wanted to tell us that our family had inspired him, that witnessing the support of all our friends and family had made a strong impression on him.

He said, ‘Your daughter was teaching herself guitar.’ And told us that after we flew in from Boston picked us up, he had been inspired to do something he’d planned to do for 20 years. His brother, he said, had battled cancer on and off for years, and had lost his struggle at age 41. The two used to play guitar together and Jim had always meant to record a favorite song of theirs.

Well, he’d finally done it. He said, ‘I’d like to play if for you and if you like it, I’ll send it to you.’

The Sound of Silence filled the dark car. A gorgeously complicated acoustic arrangement that was perfect, beautiful. Nick and I clutched hands, and he passed me a tissue, and as we sped along the highway, high in the sky was a waning crescent moon, inverse to the waxing crescent moon that had hung outside the medical jet when we flew to Pittsburgh, 3 years earlier, so full of hope for a speedy and successful transplant.

Our plane departed from gate 33. A few hours later, we landed in Phoenix.

Arizona

In July of last year, I wrote on this blog about coincidences, and about how Caitlin once had something called a soul reading done. The reader had asked Caitlin if anything had happened to her when she was 11?

Age 11 was the time she came very close to dying. After the year of surgeries and complications she endured (she would hate me using that word–she so disliked drama regarding her health), Arizona was our first family trip.

I was struck, back then, by how calming this place was. It still is. We’ve been hiking the desert mountains every morning. It’s so quiet, so still. There are so many birds to remind us of Caitlin. We’ve shouted her name into the canyons and the echoes are pleasing.

Penny sightings

I had never heard of pennies from heaven until about a few years ago, and then only from my sister, the very practical Kate, an RN. But Kate is also rather intuitive, and when she says something in her no-nonsense voice, I tend to listen, even though this particular  phenomenon seemed too far-fetched to make any sense.

But I’m just an earthling, a human. What do I know? And anyway, regardless of how coincidences happen, the way you read coincidences can be helpful with self-reflection. Here are some recent, striking penny stories:

We knew people could have ‘dry runs’–offers of lungs that didn’t work out, but we didn’t really expect it to happen more than once. At one point during the last week that we crisis-waited, I went into the hospital bathroom I used each morning and saw 4 pennies. She’d had 3 dry runs at that point. I hoped those pennies meant she would indeed get a transplant, get one more chance.

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Washroom pennies

She did. She got her transplant on the 4th offer, on December 18th, one of the happiest days of the last three years. But it was all too late for her beat-up body.

On December 20th, as they turned off the ECMO machine, I saw that there was a penny on it.

On December 21, Nick and Andrew and I walked over to the Fairmont to get out of the apartment, to get a quiet lunch, to get out of our heads. The Fairmont is two blocks from our apartment, and to get to it, we had to walk through all the holiday goings-on–the ice rink and gingerbread house display signs, the European Holiday Market stalls in Market Square.

On our way back, as we were walking by the ice rink, an urge came out of nowhere. ‘Let’s go see the gingerbread houses,’ I said. I veered sharply to the right to lead the guys toward the building where they were on display. Near the entrance, I saw a bunch of pennies on the ground. I picked them up, counted them.

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The day-after pennies

There were 11.

I put them in my pocket and walked into the crowded atrium containing the giant displays of gingerbread houses. Standing right in front of me was Kwesi, a young man who had a lung transplant in 2014. I’d only met Kwesi twice before. I knew he lived miles from downtown. I couldn’t believe he was right there in front of my eyes and I almost couldn’t speak. But I did, and I stammered something about Caitlin.. and then we left.

Because I’d had no real interest in seeing the gingerbread houses. I’d seen what I was supposed to see. 11 pennies and a successful transplant recipient.

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11 Mourning Doves

11. 11 has been knocking on our heads. Before coming to Pittsburgh to help us pack, my sister had 3 instances of mourning doves settling in the branches of a tree outside her window, not on the ground the way they normally visit.

Each time, the branches contained 11 mourning doves. Each time, she took a pic.

Back in the old AOL days, I sometimes lurked inside a chatroom full of astrologers. One of them struck me as bright and very good. Once, I emailed her a quick question about Caitlin. She ended up responding at length, gratis.

First, I need to tell you that the prime focus of Caitlin’s chart is her sixth house. For all intents and purposes she has 4 out of 5 of what I call the “god” planets there. The god planets are the planets that represent energy we think of as coming from God, as opposed to those energies we ordinarily think of as “human.” And 3 out of those 4 were, until recently called “malefic”….Pluto, Saturn, Uranus. That is way too much energy for one house, especially one having to do with health.

She then told me that Caitlin was lucky to have survived the year she was 11, that there had been great stress on her from several angles in her chart.

During her wait for transplant, Caitlin’s lung function hovered around 20 percent of normal. Last week, I found a pulmonary function report from the year she was 22, 11 years ago. Her lung function was averaging 35-40 (bad) then, and at one point was as low as 24.  Those were the years when she really declined, when she started needing oxygen at night, and to fly, when she avoided stairs and much of regular life.

She lived with invisible struggles for a very long time.

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PFT report, age 22

It’s crazy, but 30 percent can look like this:

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One tough kitty.

CF. It’s a demon and it’s mostly, until its cruel end, invisible.

So maybe 11 is a reminder that we got 22 ‘extra’ years. That Caitlin lived 33 years with a killer disease during this time of miracles and wonder that we live in.

It does provide some comfort.

 

PS to those in the know:

Across the Universe is playing in my hotel coffeeshop right now, as I get ready to publish this post.

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.

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Some very favorite visitors

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Adoration from a Pup

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Bad ass Kitten

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She got herself some wheels and got back some independence

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

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One of our views from the 15th floor

 

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First Avenue in springtime

 

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Christmas, 2015

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First Steelers game

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Out at the PPG rink last February

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Cooking Indian with the wonderful Shreya

 

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The calm before the packing begins