Monthly Archives: March 2016

MARCH 16–It Keeps You Running



In Ireland










I have never known Katie, my oldest friend and near-sister, to be a runner, so when she started running more and more last fall, I just sort of quietly observed, impressed, and didn’t really say much. I know sometimes it can feel like a jinx, to talk too much about a new resolution or interest, and how determined you are.  I figured she’d explain it to me at some point.

Gradually she was running more and more. She even ran a 10k on New Year’s Day morning — alone. Her running buddy, a woman in her neighborhood, was sick, but Kate had set her mind to do it, so she went off, driving herself, and did the race and sent me a picture from the end that made my eyes sting.

We have always joked that Katie greets the yearly turnover with the words “It’s a New Year!” — up and awake brightly and sprightly before everyone else, even when we were younger, and everyone was hungover, groaning.  Even then Katie had likely fallen asleep before midnight, reading.  Mentally preparing for what lay ahead, I thought.

We have always been different that way.  Katie loves to plan ahead, down to the very last detail.  She likes to imagine the future the way people like me imagine the past…the little details.  What clothes will we be wearing, what dinners will we cook?  What rugs will adorn our houses 10 years from now? You know, things everyone needs to know NOW.  It’s extreme.  I’m no better — a pathological non-planner, the other extreme. With an illness, sometimes you stop making plans to avoid disappointment.  But when you wake up in the morning and can’t commit to what you’re going to do that day, living in the moment can become paralyzing. Katie and I  make a good team because we can meet somewhere in the middle — I can try to pull her back into enjoying the moment, and she can probe me to figure out, what do I really want for the future?

Katie visited me here in Pittsburgh shortly after that 10k, and so we got to talk about the running thing, finally.  And I learned something that surprised me.  Apparently, she’d always dreaded the New Year…  “It’s a New Year!” was an effort to feel good when she didn’t actually feel good.  She’s finally realized that for her, the new year starts in September.  I think a lot of people can relate to this —I know I can, and it was like a revelation!  Because of school, of course.  August is slow and swampy and then September is crispy, chillier, brighter.  You feel like you want to buy pencils and notebooks and start taking notes! Yes, we’ve been doing it all wrong.  She realized that to start on January 1, to try to pick yourself up from an already low point of holiday exhaustion, partying, e-commerce, was like signing up to lose.  Why not SET a goal for January 1, so that ON January 1 you are achieving something ? Something that you begin in September, when it feels like the right time to do something like buy new sneakers and hit the pavement, or fill out applications, or start saving.

So that’s what she did. And though the 10k was a challenge on Jan 1, it was more like an achievement.  How much better to start 2016 off having already completed a goal, rather than trudging through the first day of your journey towards one.

I loved this point of view.  This mentality flip was right up my alley.  She told it to me while she was giving me a leg massage — my legs ache terribly and she is better than a certified masseuse.  She told me about running and thinking of me and repeating a thought in her head about me to keep her going.  She said she knew it was cheesy, but it made us both cry anyway.  I think there’s nothing more inspiring than seeing someone actively make a change in themselves, quietly and sincerely.  I thought how cool it was that I could inspire her to run, but that little did she know, this running of hers would inspire me.  I have been worried about after transplant — I’ve never been someone who likes to exercise because it requires routine, something I struggle with.  Yet I know that finding a rigorous exercise routine, and sticking to it, will be vital to keeping my new lungs healthy.  I’ve secretly worried that I will hate it so much, how will I ever power through?  Hearing her explain how she finally did, was so so helpful.  It made me feel like if she could do it, I could do it when the time came.

Katie’s next goal is running a half-marathon, in Pittsburgh, for Cystic Fibrosis! It’s in less than 2 months, I am so excited and proud of her, and lucky, really lucky, to have her in my life.  I feel like we are always learning from each other, and this year I am going to cast off my hatred of New Year’s Day, and no matter where I am in September, whether its Pittsburgh or Boston, sharpen a pencil, and set a goal.

Please follow the link below to donate to her fundraising efforts for CF.  A kid born today with Cystic Fibrosis is born into a different world of medicine than I was, and the treatment options becoming available right now are making headlines.  This is a direct result of donations used to fund years of research, so every bit counts.  Thank you!
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MARCH 4 — Floating in a Tin Can


March 4, 2014   Boston

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 tiny med-jet.

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.)


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.