Monthly Archives: March 2017

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.


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.


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.


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 …


Feeling good at the French bistro in DC, 2015

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



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



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?