lung transplant – 9 Lives Notes

December 8 – The Hanged Man

I’m writing tonight from Kenya, where we’ve spent the past two days at The Caitlin O’Hara Community Health Center. It’s the first time we’ve seen it fully operational, filled with the kind of care and community that Caitlin believed in so fiercely. It has been both lovely and emotional—heart-strengthening, really—and there is so much I want to share in the coming weeks about the astounding work that Jess and her team are managing to do here on a shoestring budget. (Just hours ago, I witnessed how the clinic’s medical team and ambulance were able to save a man’s life by transferring him to a surgical hospital.)

Also earlier, while helping prepare some content for The Leo Project’s website, I came across an old email from Caitlin, written in the early days of her decline, before she was listed for transplant. I was reminded anew of how much clarity and insight she had, how she could articulate the contradictions of being sick—of being hopeful and exhausted, old and young, surrendered and determined, all at once.

I know I promised to share more of her writing after publishing Little Matches. I haven’t kept up with that the way I hoped to. So I want to share this piece now, here, because it gave me pause today, because the work happening in Nanyuki is, in so many ways, an extension of the way she thought and felt and lived.

Here is the email:

Sometimes I feel old, like I’m experiencing the struggles of a much older person—phases of illness, thinking about what I want or can’t have or can have out of life, feeling exhausted physically and emotionally. But then I feel so young, too. I just feel like a lot of contrasting ideas and thoughts have been stuffed into ten years.

I can’t remember the last time I had fun. I can remember times I enjoyed myself—definitely—but isn’t that something different? Maybe I associate fun with activity, and with abandon.

Enjoyment can come from hard work, or things that take patience, or things done alone, or from great conversation. I suppose that can be fun, and I’ve had that. But when I think of moments of fun, I think of these flashes of carelessness. I danced at Lindsay Hovanesian’s wedding for like five minutes before I couldn’t do it anymore, and it was so fun—to be able to pretend to do that again. I had forgotten what it felt like. I had a moment of fun on our piggyback-pack ride up that mountain, but I worried near the top, and it was more enjoyable than carefree. Fun, for me, is often tied to activity, and to interaction with people.

I had a lot of fun when I met Andrew because I was lovestruck. That kind of feeling makes you abandon things and not care about the consequences. I can’t do that the same way now—it’s not new enough, and I’m in a different place.

Dirty Dancing is on. It looks so fun.

I think my talk with Ahmet (her doctor) about TX basically came down to this: the struggle is the limbo. This is it, really. The hard part—or one of the hard parts—is the limbo, the long wait and low-level sickness. You can’t just say, “Okay, I don’t care, I want to get a TX.” They won’t let you. It’s not about avoiding this limbo or figuring out how to end it; it’s about living in it.

I hesitate even to say this because (as I often do) but the week I spent in the hospital was the most relaxed I’ve felt all year. Since then, I’ve remembered it with a kind of sick nostalgia. When I felt the lump in my breast earlier, I thought—in a split-second flash—Wouldn’t it be okay to have a curable cancer? Something to allow me to surrender to? It’s like, in that surrender, you get strength… if that makes sense. It sounds so sick, but it’s not. You don’t really want it, but— I don’t want that. But it was one of those flashes that goes through your head.

The other night I did a tarot reading, and I got the Hanged Man. I always get him—him and the Tower. Two powerful cards. I remember doing tarot in my room when I was little and always getting the Hanged Man and being scared. I googled it. It’s an interesting card, full of contrasts. Basically, it holds that same idea: you find strength in surrender, but you must be calculated too. Thoughtful.

May 7 – Email from Caitlin

An old friend sent a newly-discovered email exchange he had with Caitlin during her last spring on this planet, when she was alive like we all are alive, and thinking of the future, like we all think of the future, and considering what to do with her life, post-transplant. Public health? Law? Philosophy? Maybe all 3.

Joe is an attorney who, Caitlin had learned, had majored in philosophy as an undergrad. He is also an extremely lovely soul who had recently lost a son. I have his permission to share.

From: Caitlin Elizabeth O’Hara
Sent: Friday, April 08, 2016 4:27 PM
Subject: Many things

So so nice to hear from you, and such a lovely note. My dad mentions you all the time — he loves you so much. He has always told me you are asking for me, which is very kind. I am so glad to hear from you myself.

Oh my god, that game! You must’ve been freaking out. I couldn’t believe it. The first 3 pointer was WOW enough, more like OH NO….then when Villanova got it on the buzzer, it was like a movie….. to good to be true, but it was true! I do love things like that. Maybe its silly, but they make me believe that unbelievable things can happen…in any part of life, whether its a basketball game…or my own precarious situation 🙂

Thank you for sharing that about Matthew’s gift of life. It is really wonderful to hear that at such an unimaginably difficult time you were able to foresee that someone else could benefit from your loss. It is selfless, heartwarming, and encouraging to hear.

It is a very complicated thing, to think and know that someone else has to die for me to get this opportunity. I have discussed it with some of my friends whom I know that have already had transplants….everybody has a complicated relationship with the idea. At least the people that I know, though, feel an incredible bond of gratitude to those who saved them, everyday. Every single thing that they do, they do with their donor in mind. Two friends of mine learn or participate in a new activity, a new goal, every year in honor of their donor….whether it’s skiing, or running a race. For one woman, even after 9 years it never stops being an emotional ride.

That is as it should be though…we can use all the love and open emotion we can get in the world.

I didn’t know that you were into Philosophy as an undergrad. So was I, and in my 20s I applied to two graduate programs in philosophy in Boston – at BU and at Tufts. I got in, but…ultimately didn’t go. I had also applied previously to art history MA programs, and then didn’t go. Nothing has ever felt like the right thing to spend 80 grand on.

I suppose a lot of my 20s were spent halfheartedly stuck…knowing in the back of my mind that transplant would come, and not feeling like I knew what I was supposed to really DO to start my life until I got through that. I still am not sure what I want to do, exactly, but I have a much more focused idea of what I don’t want. Perhaps more importantly, I don’t feel that paralysis anymore. I’m just ready to begin and enjoy the moment.

So maybe it will be law school. Whatever it is I plan on pursuing a degree when I am back in Boston. I don’t know when that will be. The Prouty Garden played a part in my thinking about it, but so have a few other things. My interest in health care, and also a more general understanding of what I am good at combined with what I find interesting….I think these things take most people a lot longer than college to figure out! At 20, a law degree or an MPH would have seemed like the complete opposite of anything I would ever do. At that point, I didn’t have a sense at all that there was a difference between, say, liking art, and literature, and actually being good at making and enjoying a career of it.

I think a lot of that had to do, too, with being female…being pegged as “artsy” before I could realize I wasn’t. Once I got involved in art..galleries..writing…I realized the career world of those interests is completely antithetical to my interest in directly working with humanity.

I also couldn’t imagine a job that didn’t change a lot, involve direct interaction and impact on people…and afford me some autonomy.

I am planning to wait until I am home and after transplant to apply to a program in MA or maybe Maine (where my boyfriend is from). I would love to hear more about your choice to go to law school. My dad mentioned that you didn’t go right out of school – not until you were in your 30s – so you’d have been like me. The amount of reading — I hear that it’s monumental. And writing. I haven’t really done that kind of reading and writing in my life yet….so I don’t know how I’ll find it. I’d be less intimidated by a PhD program in literature at Harvard than I would be by a JD program, because I am used to reading fiction and writing those kind of critiques.

There is so much I don’t know. I’m just hoping I can use this down time to prepare as best I can for a potential grad degree. I am actually taking a free online course (it’s very easy) on the basics of American Law. There are short lectures, supplemental readings, and terms to learn. It’s very simple but a good thing to get my brain started on thinking about it. Every week is a new area (so far I’ve done Tort law, Contract law, and Property law), and each one I actually really like and want to learn more about, in a nerdy way.

Oh – one other thing – my boyfriend — he originally was planning on going to law school when I met him, then deferred. Now he may not. So he actually put the seed in my brain. I bought him some prep books and then I started reading them a few years ago…..and it’s kind of been nagging at me since. He also loves basketball…by the way. Obsession level. 🙂

So much love, and thank you again for such a thoughtful note.

xx

Caitlin

MARCH 4 — Floating in a Tin Can

I happened to be looking for a particular photo last night, and came across these ones from exactly two years ago. March 4, 2014. Caitlin had been on IV meds for a couple of months, and after a long stay at the Brigham, it was clear it was time to head to UPMC to complete the lung transplant evaluation that had begun, proactively, in 2010 while she was still ‘well.’ The coordination of the transfer, hospital to hospital, had hit one snag after another. A week of snags. Finally, late on the night of the 4th, an ambulance brought us from the Brigham to Hanscom Airfield where we waited for the medical jet that was to bring us to Pittsburgh.

The night was cold. The jet was late, due to an emergency in Florida, and when it arrived, it taxied in so much tinier than I had expected. The crew—2 pilots and a nurse—swiftly got into action. They were cordial but all-business, bundling Caitlin into the rear with oxygen and monitors. After the bright, organized ambulance, the interior of this working jet, cluttered and dark, was a shock. I looked at it and thought, “You can’t get in that thing. You have to get in that thing.”

They stuffed me into a pop-up seat behind the pilot and we took off.

It was close to midnight, long past the time we would normally be asleep. I could see the moon through the cockpit. It was a waxing crescent moon, I remember that. But the rest of the trip is just a sense-memory of our bodies hurtling through darkness, the deafening noise of the engines. We were heading to a new hospital. Caitlin had finally reached the point where she needed a lung transplant. We didn’t know what was going to happen.

I wrote, in the last post on this blog, about my thoughts at that time. “Okay, let’s get this over with so life can get back to normal.” I’m glad I didn’t know I would be writing this post, here at my Pittsburgh desk, two years later, the big event still ahead of us, the details still unknown.

Two years, March to March:

So many days. Each day thinking, Maybe today. Have to be ready.

Caitlin’s been remarkably resilient, but as it gets tougher, physically and mentally, it’s also tough for people to understand exactly what’s going on—-with our situation, with her health. The other day, I posted a photo of her looking pretty darn great, laughing and holding Henry. But that’s the nature of both cystic fibrosis and photography. The looks of things can fool you.

Yesterday, the cabin fever was bad. We had to get out of the apartment, go for a little drive. We drove aimlessly, with no destination, until I noticed that we were close to a place called The Society for Contemporary Craft. I’d been there a couple of times, and pulled in. It’s a space that consists of a rotating art exhibit on one side, and artwork, for sale, on the other.

The exhibit, this time, was called “Mindful: Exploring Mental Health Through Art.”

Inside, the show was all about depression, breakdown, attempts to self-heal. “Mom,” she said, half-serious. “Did you bring me here on purpose?”

I laughed and said of course not. She didn’t really like the exhibit — not her style. But it was something to do.

The exhibit concluded by having you follow a length of string down a hallway to an alcove, where the overhead criss-crossing of string became so closed-in as to be claustrophobic, and where visitors could give voice to their own methods of coping by writing their thoughts on squares of paper and tying them to the resulting spider’s web.

Shall we do it? Of course.

“This is one that goes through my mind a lot,” she said, writing.

(Samuel Beckett.)

UPDATE:

Interesting coincidence we discovered after I published this post:

So last year, we moved from a “temp” apartment to a more home-like condominium here in Pittsburgh. The real estate agent was a lovely woman who told us that her daughter had a heart transplant years ago, was now in her 20s, and an accomplished artist. That seemed like some kind of good sign.

When Caitlin wrote on the slip of paper at the mental health art exhibit, I tied it to the string and tucked it into a tiny print of bananas that happened to be hanging there, which I admired. Turns out the banana art is a reproduction of a screen print by Gianna Paniagua, the very same artist. Wild.

—Maryanne

JULY 16–Kitten Visits Cats

After her transplant, Caitlin will not be able to be around cats anymore. Which is sad because she loves cats so much! Today we drove far out into the country to a wonderful, no-kill humane society where we spent an hour and a half playing with the cats. Mittens, shown here, was the most painful kitty. Abandoned by its owner. HOW anyone does that is beyond me. She was so confused by her cage that we let her out 3 times to play with her. So painful to have to leave her there!! But a wonderful place, doing great work.

–Maryanne

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JULY 14–The Unthinkable Transplant, (Linked essay by Caitlin)

Caitlin & Andrew in 2013 Looking Good/Feeling Bad — In 2013: Looking Good. Feeling Bad

In this column for the Cystic Fibrosis Lifestyle Foundation, Caitlin talks about how the word “transplant” always terrified her.

It terrified me, too.

But that’s for another day. Right now, at 8:47pm on Monday, July 13, as I write this, there’s a rainbow over Pittsburgh, and Caitlin’s on the balcony with it.

Read the entirety of her thoughts here: The Unthinkable Transplant

-Maryanne

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APRIL 24–“The timeless, repetitive waiting.”

Well, today marks one year on the transplant list. On April 24, 2014, Caitlin wrote a blog post about what was ahead. And what was ahead has turned out to be a very long wait.

I was telling a friend that it reminds me of the beautiful show and Pulitzer Prize-winning book, (TALES OF THE) SOUTH PACIFIC. During WWII, a group of servicemen and women in the South Pacific wait to be called to war. The pace is languid, with many beautiful moments. Then, when the waiting period has begun to feel eternal—BAM!—the fighting starts, the planes take off. Everyone goes into action, the languid days over forever.

We’ve had some lovely days that we will probably, in some future time, look back upon with longing. But right now, Caitlin is uncomfortable; everything is a struggle for her. So we are ready, and hoping.

–Maryanne

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APRIL 1–Lots of “Months”

My lighter side loves April Fool’s Day. My literary side loves National Poetry Month. But our beautiful Caitlin has been waiting almost a year for a lung transplant, and what’s most on my mind is that April is also Donor Awareness Month. So click on the photo for a poem that rethinks the way we think about organ donation.

I’ve been a registered donor since age 16–here’s a link to your state’s registry if you’d like to register, too. http://www.organdonor.gov/becomingdonor/stateregistries.html

–Maryanne

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MARCH 15–Winter to Spring

By Stephanie Danforth — Art by Stephanie Danforth

Today marks three months here, but this beautiful painting, which our wonderful friend, Stephanie Danforth, recently painted and sent to Caitlin, reminds us that spring is imminent, and that every day spent waiting means one fewer day to wait.

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–Maryanne

FEBRUARY 24–The Long Winter

“Any news yet?” No, we are still playing the waiting game. Caitlin’s been on the list 10 months today.* April 24-February 24! And it feels longer, because it technically has been longer. A year ago today, February 24, we were getting ready for her to be flown from The Brigham to Pittsburgh, and I wrote in my diary: The trip to Pittsburgh begins.
So much was unknown then, and remains unknown.

The last few weeks were up and down because Caitlin caught a cold after months of stability. The cold passed, but she’s been dealing with the inevitable after-effects. There have been some not-so-great days, but right now, things are okay.

In that vein, here is a report on WHAT IS GOOD:

Puzzles! We are HOOKED on Liberty Puzzles, thanks to our dear friends, the Danforths, who sent us our first. Liberty Puzzles are beautiful, wooden, puzzles laser-cut into fantastical shapes.

Henry! Yesterday Caitlin said, “Aren’t you happy he’s here? It’s like a great TV show that’s always on.”

Pittsburgh! I keep saying it, and it’s true: “Things could be a lot worse.” This is a nice city, with a lot going on. I happened to stumble upon the opening of the above living art installation the other day. And on Sunday, Nick and I went on a “cello” hike, which consisted of a walk around the city that included tours of cultural venues, and ended with a private cello performance at the Capital Grille. After that, we had a glass of wine at a favorite little place. I usually have no problem playing it cool when I see a celeb, and there have been a lot around here because they are filming a movie, but it was hard to contain myself, I must admit, when right across from us, tucked into a corner, was Diane Keaton. She is just one cool cat. She’s one of Caitlin’s absolute favorites, and I wish Caitlin could have seen her.

Friends & Family! It’s been great to have people here. My sister and niece were here, then Diane & Katie and baby Diego. People send notes and Florida grapefruits, and crafts and cookies and flowers, and prayers and overall kindness that we are overwhelmingly grateful for.

–Maryanne

*It’s not uncommon to have to wait so long. Organ donations are not as plentiful as they could be, so please, if you agree that you’d like an organ if you desperately needed one, go on and register with the organ bank, if you haven’t already done so: http://www.organdonor.gov/index.html

JUNE 29 – A Few Clarifications

* The other day, I posted a #ThrowbackThursday photo of Nick and me on St. John. A few people didn’t notice the Hashtag-Throwback part. Nick and I are most definitely not on St. John.

* We can’t venture from our home base in Boston. When Caitlin gets called, we have four hours to get to Pittsburgh. This will involve contacting the list of medical jet services that we have pre-arranged. Since no single service can sit around and guarantee that a jet will be available when we call, we have to hope that one of the services on our list will be able to get to us within the allotted time.

* Once we are in Pittsburgh, if all goes well, we will be there for two to three months. (You can’t go home until you are definitely stable. And then, for the first year, she will go back to Pittsburgh for evaluations every two months.)

* You know how once you get used to something, it starts to feel normal? Well, that’s us. We are not as somber, sad, or serious as people imagine. On the contrary, almost every day has a ridiculous amount of humor in it. One of our latest pastimes is taking videos of the way Henry reacts to the word LUNCH.

* When people who haven’t seen Caitlin lately do see her, they inevitably remark on how great she looks. Now that she’s not acutely ill, she does look a lot like normal Caitlin. That’s the irony of CF, though. Unlike some diseases, the effects are mostly invisible. For more information on CF, check out http://www.cff.org.

* Caitlin has done a few needle felting sculpture projects–quite out of the blue–and she is rather good at creating the most charming little creatures! (Needle felting is the process of sculpting/interlocking wool fibers by stabbing the wool with a barbed needle.)

* Happy July, everybody. Summer! Boston is not a bad place to spend the summer, and it’s not as stifling as St. John in July.

–Maryanne