“You think all this is important, but all that really matters is loving people and being kind.”
So it’s been a year since Caitlin’s transplant. A fact that’s as hard to believe as her absence.
This post from that day, if the lungs had come a month earlier, before the weeks on ECMO…. … too painful to think about, really.
I’m going to let Caitlin’s words take over, with thanks to Kate S, an old friend of hers who has most recently, graciously, shared her correspondence. The “Caitlin book” that I’m writing has a lot to do with this search for faith.
Emails with Kate
can i ask you something personal? If you don’t want to answer I understand. I have never been that religious but i have always had faith. i hope that makes sense to you. as i get older i struggle more and more with the reality side of my brain and the side that wants to hope and pray for the best, and have faith. i am always so interested in how people like you — really smart people that is — stay so solid in their beliefs and faith. i don’t know, i guess i am just curious about it. then sometimes things happen that make me feel like i am more connected, and that it is possible. i’ve been trying this thing where i “dialogue” with my illness. it was recommended by an astrologer who did my chart, and it is something i kind of do a lot anyway but in a different way. its like visualizing sessions of going through your body and imagining healing. but this takes it a step further with actual talking to your disease. anyway i was lying in bed this morning doing that for like half an hour. andrew was there, he was like half awake, we were just laying around. anyway i never said i was doing that. then when he got up and was walking into the living room he just said casually “i feel like god was in the room this morning.” It was so odd, that is not a normal thing for him to say (obviously). It was just kind of cool.
Email to Nick
So what I always loved about Early Christian art was that it was so …early. Really the beginnings of Christianity , and thinking about what that meant is neat for me. This was years before even the crusades, the first really violent time in the name of “Christ” (well except for Christ himself obviously ). So there was violence of course … In Rome and in the Byzantine empire. But Christianity hadn’t even reached a point yet where people were “fighting in the name of the Catholic Church” etc and things were still more modest.
You can see the change in how Christ is portrayed in the art in these small churches. He’s still a shepherd but he’s wearing roman robes and looks more regal. So it’s the beginnings of it…. But it’s unlikely that these religious people then were implementing awful atrocities on people
I think the area seems beautiful and peaceful. But also something I can’t really place, and don’t necessarily need to figure out. I just would like to go.
There is always going to be bad in the world. I think that is what makes being good so important.
I know all the dates.
Yesterday a year ago was the last night Caitlin would ever sleep in her own bed. That night, she was so weak she did not have the strength to sit in the bathtub and let me wash her hair. I was so alarmed I emailed her doctor at 10pm.
On the 16th she was admitted to the hospital for the last time.
I wonder now, how many times in her life was she admitted to a hospital? I don’t know that I could even guess.
After I went home for the night, she texted me
Caitlin: Had to get an echo. Feel sick. And tired and can’t breathe. Love you. Hope you get rest.
Text message: 11/17/16 9:14am
Caitlin: My score is 70
Maryanne: Oh my God. Oh wow. What happened?
Caitlin: Dr hayanga came in. Because of my oxygen
Maryanne: What did hayanga say
Caitlin: He was optimistic. Very. He was Iike, we expect to get offers.
Caitlin: Andrew says we HAVE to be hopeful
Maryanne: We ARE hopeful. This is going to happen.
I drove to the hospital that morning with a light, happy heart. It was finally going to happen. The head surgeon came in and said he had been up all night fielding offers for her. None of them were a match, but with so many offers coming in, and with her score so high, a match seemed imminent.
She was on a lot of oxygen but she was stable, and felt much better than she had at home. Finally, finally, finally, after 2 1/2 years, it was going to happen.
Yesterday, another CF tragedy occurred. Mallory Smith of California, who, like Caitlin, could only be transplanted at UPMC and moved to Pittsburgh to wait, received her transplant in September. Her recovery was hard but she was recovering. She was on the other side. Just a few weeks ago, she celebrated her 25th birthday. Soon after, when the docs removed her last chest tubes, she said, “Today is the happiest day of my life.”
Then a pneumonia took hold in her chest. Without an immune system to help her body fight the infection, she became sicker and sicker. The cepacia bacteria that had damaged her native lungs began to destroy the new lungs as well.
We were all hoping for a miracle of science for Mallory, but she slipped these surly bonds yesterday afternoon, her most beloved people by her side.
She was brilliant and kind and everything wonderful. A few years ago she wrote an essay that contains these words:
My life is a miracle because I should be dead. Your life, even if you’re healthy, is a miracle, because your existence is the result of stars exploding, solar systems forming, our Earth having an environment hospitable to life, and then, finally, millions of highly improbable events accumulating over millions of years to bring you, a capable and conscious bag of stardust, to the here and now.
Acknowledge that miracle. Existing is a rare gift, a privilege. It isn’t a right. Think of all those atoms that never ended up inside a human body.
So pick something, do something, to respect that miracle. Step up to the challenge of making your own meaning out of mere matter. Let the whole, the human, be altruistic, be greater than the sum of the parts, the selfish genes of our genome.
Set an intention and get after it feverishly, frenetically. Give back what we’ve taken by paying it forward, save a life, smile at a stranger, climb a mountain leaving nothing but footprints, inspire a child, take care of your body, bring happiness through laughter, plant a tree, and sometimes, just breathe and exhale a little bit of calming energy to your environment.
Give back in whatever small way you can, any time you can, because we are not small. No one of us can do everything, but all of us can do anything. Do it because we have survived, and that is a miracle. Do it because why wouldn’t you? Do it to justify your life.
I hope Caitlin found you, Mallory.
From a little notebook of Caitlin’s:
April 27th, 2012
I am grateful for —
My apartment & car
My ability to be able to go out and have fun even though I’m sick.
In July of 2014, 6 months into full time care-giving, I realized that I hadn’t worked on my new novel and that it would be easy to continue to ignore it, indefinitely. So I started carving out a daily chunk of time. I would set my timer to 30 minutes and write, with full focus, for at least that amount of time. At the end of each session, I circled the date in red.
It’s amazing what you can do with 30 focused minutes. I managed 254 pages–a decent draft of a new novel. In 2+ years, I did not miss a day until I finally gave up, in the ICU, on December 11.
Last week, on September 18, which was our 35th wedding anniversary and the 9-month anniversary of Caitlin’s transplant, Nick and I walked around Walden Pond.
When we came home, I started setting the timer again — for 33 minutes, in honor of Caitlin. But instead of working on the novel, for the moment I’m compiling parts of this blog and other words into something that I’m just calling “the Caitlin book” for now.
At this point, it is painful. I started at the beginning of the blog, but now I’m into the December posts, which I had not read since I wrote them. Reliving each shock after shock, the kernel of faith, the hope, the desperation, and then that final joy when she went into the OR on December 18 and received lungs.
It’s still impossible to believe things played out the way they did.
But a week does not pass that I don’t receive a blog comment, an email, or a hand-written note from someone, somewhere, who has been bettered by Caitlin’s story. Here is a recent one (accompanied by heart-shaped rocks for Caitlin’s memorial). It’s a reminder of why I want to create something more permanent than blog posts in the ether.
It will not be a story about anger and illness. It will be the story Caitlin wanted told: about light, love, and fierce positivity; about life and afterlife.
I am still figuring out the form it will take.
I told my wonderful friend Jane, in Pittsburgh, a beautiful writer, that I was doing this, and she responded:
Happiest thing in your letter: you’ll start the Caitlin book! This has to be done. This is going to be so wise, so beautiful, such an honoring of life, of soul, of friends, of motherhood, of grief, of CAITLIN. It is going to be a unique gift to the world. And to many many people who suffer terrible illness and loss, But really a gift for everyone. Mothers! Daughters! People who need Inspiration!
I have printed her words out and hung them over my desk, to keep me going.
I’d like to recognize/document summer, and appreciate the continued kindness and interest in what is going on with us.
They started with Caitlin’s “main” ICU nurse, Erin, who visited us with her husband and three charming little daughters (3 under age 5!) in June. They called me “Miss Maryanne,” and Nick, “Uncle Mike.”
In July, Dr. Penny, the CTICU director who did everything she could to save Caitlin, visited us, too.
Emotional times. But anyone who’s lived inside an ICU knows how intense it gets there. These people became part of our lives.
And next week, four wonderful friends/Pittsburgh neighbors are coming. I guess we will always be tied to Pittsburgh.
MORE PICS FROM CAITLIN’S BIRTHDAY
Turns out Nick took some photos I didn’t know about. I’m usually the one taking pictures, so I’m in some, for once.
People have been continuing to send us beautiful heart-shaped rocks. There was even an anonymous, perfect one in our mailbox. Thank you! There is no time limit. We haven’t even started building the memorial, and will always have room for more. Here are some more pictures.
The Islands and Irma
We are worried about our beloved islands and everyone in Irma’s path. We haven’t made many firm plans yet, but going back to St. John is one of them. Like the Vineyard, Caitlin’s spirit is surely there.
I made a good friend in Pittsburgh, Barry Lavery. He was living with ALS and — talk about an inspiration. He had a wise, expansive spirit. I looked forward to our weekly visits/conversations, and after I left, we would text and I would send him videos of New England beauty and the wildlife. He was a lifelong photographer and photography teacher, a bird lover and hawk expert who volunteered at the wildlife center after he retired from teaching at the Art Institute. He was a lifelong student of philosophy, a Taoist. A man who never lost his sense of humor. I will write about Barry in whatever I end up writing about all this. He was certainly a part of the whole story. He left us during the August eclipse and promised he would seek out Caitlin. It’s a welcome thought.
This was his public Facebook profile pic, so I feel comfortable sharing it. It was obviously taken when he was still well, still volunteering at the wildlife center. The hawk connection is so interesting. I still haven’t written about the hawks, but I will.
This hasn’t happened much, but when it does it’s kind of awkward. We think of Caitlin all the time and talking about her is part of this new life.
I keep thinking we can turn back time. An illogical thought, of course, and one which only lasts for a second, but which comes to me every single day.
Inside my kitchen medicine cabinet, I have always tacked up recipes, poems, cholesterol counts, phone numbers of relatives in Ireland. I noticed this calendar last week. Early in 2014, at the beginning of the transplant nightmare, I had taped it up.
I remember looking at all the days still to come and wondering what they would bring. I wrote, What will happen??? Knowing there would be an answer, impatient for it.
Then, a day later, cleaning out a desk drawer, I came upon an email Caitlin had sent me, again in early 2014. I don’t generally print out emails, but had printed this one, and oddly enough, when I mentioned it to Katie, Caitlin’s closest-to-a-sister (is there an easier word for her??), she said that she, too, had just happened upon the same email, which I had forwarded to her, back then. Another funny coincidence.
Caitlin to me:
This is what has been bothering me most about our argument the other night. We need to make this time as ok and as enjoyable as possible. Who knows what’s going to happen once I get that call. I don’t want to live this time as if “this sucks” or “this time is really crappy and stressful.” I just can’t do it and I don’t think it’s true or smart or good for our hearts. I feel like this is your underlying sentiment despite that your brain tells you to “appreciate what we have.” The truth is is that this could be it. As hard as that is to say, once I get the call I’m going into a hugely risky surgery. There aren’t any guarantees. So this isn’t just a time to get through –it’s a time to try to be happy and make something worthwhile of it.
Everything from the bottom up here is unknown- someone has to die for me to get a transplant, so it doesn’t get any more unknown or unplanned than that. The only option is to go with the flow as best we can and that means basically, assessing everything as it comes, and dealing with things but letting them go just as quickly. That includes like stress and freakouts and fights. There’s no way to avoid them so just deal with them.
This isn’t a sad time we should be waiting for to be over. It will be over soon enough and you could be wishing we were back here. Or we could be glad we never have to go back here. The point is we don’t know, we can’t know, and I don’t want to live like I’m just trying to get through it, when this is still my life.
I love you
Sent from my iPhone
I love you.
It is interesting that while you were writing that, I was making coffee and thinking about how I needed to tell you that I feel shame when you have to talk to me like that. You do a very good job of taking the high road, and restraining yourself from fighting and all that.
You are completely right about all of this. Let’s make today a happy day !
We are into September already. September of this year 2017 that has not had Caitlin alive in it. I look at my calendar from a year ago. September 7, 2016: Kitten admitten.
It was the first of three separate hospital admissions she would have. One each: September, October, November.
During the final admission, with such a high score, we were actually happy, expecting that transplant would be imminent, but she was more scared/somber/nervous than I realized. Of course. I see now, reading through much of her stuff, how much she kept inside. One of the things she sent to me then, and which breaks my heart a little:
I haven’t been writing in the blog all that much. I plan to write this story in a more contained form. I’m still figuring out how.
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.”