FEBRUARY 7–(Turn and face the strange) Changes

Caitlin O'Hara, Cystic Fibrosis, Little Matches

I have a cold and haven’t been able to breathe through my nose the past few days. I’ve been trying not to mind. It’s the least I can do. Being unable to breathe through her nose was just one more thing that Caitlin had to deal with. Her sinuses were blocked–a common CF problem–and after 2 1/2 years of nonstop oxygen blowing into little nostrils, they were irritated as well. She got to the point where she had to sleep half sitting up and tilted to the side, against four vertical pillows, to try and get relief.

Not that she ever slept through the night–she also had to take a beta-blocker every day at 4am. And then 8 hours after that, and 8 hours after that. Her failing lungs had put such a strain on her heart.

As Andrew said in the service, Caitlin climbed a mountain every day. He is planning to climb Mount Kenya this week. He wrote: “The air on Mt Kenya will be so thin. I will struggle to breathe. I’m actually looking forward to it.”

Andrew and Jess at 6389 feet

Every time I wonder whether I should still write these posts, I get another email–often from someone who didn’t even know Caitlin–thanking me for writing them. Even when I write about things like altitude.

Not all that long ago, in 2013, Caitlin and I drove out to Lenox to visit Edith Wharton’s house. As we drove along the turnpike, she began to feel tight, breathless. As we climbed a slight incline, it occurred to her what was wrong. She checked the altitude app she kept on her phone. 1200 feet.

She was still living independently then, and functioning ‘normally,’ but that change in altitude was high enough to hurt.

This past weekend, Nick and I spent two nights in her apartment. We are trying to use it, take comfort in it, and slowly accustom ourselves to this vast change.

One afternoon, we walked home from Back Bay via Charles Street, which I had been avoiding because memories are literally everywhere on that street. After college, Caitlin worked at the Polly Latham Asian Art Gallery there. And the yearly Holiday Stroll, in 2013, was the last time she ever went to an event without wearing oxygen. Two days after that stroll, she was in the hospital. She began to need oxygen 24/7. She knew, although the rest of us refused to believe it for a while, that the oxygen was permanent. The forever-change we had been dreading forever had come, at last.

Jess left me a message yesterday. One of the things she said was something along the lines of, My mom always said the only thing that’s certain is change.

Polly Latham closed her storefront quite a while ago. I think the space has been a few things since, but I somehow knew that something new had opened there. As we approached, Nick was doing a nice job of listening as I tearfully described the vanilla eclairs Caitlin used to love at Cafe Vanille. (That space has changed, too. It’s now Tatte). And how she bought me a favorite shirt for Christmas at Dress (which used to be in a different location). I was outright weepy by the time we got to Polly’s old shop, remembering the  layout: big front window looking into a small display area, then a tiny staircase that led to an upper balcony area where Caitlin used to work and where she would give everyone who came through the door a big, bright smile.

It’s now a handmade jewelry – slash – antique jewelry shop.

Screen Shot 2017-02-06 at 6.08.22 PM.png
Heart, bird, wings.

And like everything these days, it felt like there was a message in this window.*


*More about messages, signs–the wild stuff later. Like Caitlin listening to David Bowie in the sky. Still need to wrap my head around it all.





Author: kittenupdates

I am the author of CASCADE and LITTLE MATCHES: A Memoir of Grief and Light

18 thoughts on “FEBRUARY 7–(Turn and face the strange) Changes”

  1. Reading today’s thoughtful message and simply can’t believe it – the radio is playing David Bowie “Changes.” Messages abound. Thank you for continuing to write and giving us the chance to keep Caitlin near. I hope you feel the love and prayers bounce back.

  2. Definitely signs. What a beautiful post, and marvelous about Mount Kenya.

    You are surrounded by angels and warriors, and you are those, too.

    Keep on. You are loved and prayed for.

  3. Yes we need you to continue to write your beautiful and profound
    words to help us fill the void we feel. Thank you and remember

  4. I always thought you didn’t get colds as some sort of motherly protective thing to keep the germs from Caitlin. I wondered if you’d get them more now.

    It is good to go to all the loaded places as soon as possible and get all of that shock and trauma over with.

    On Sunday Eric and I took the dogs to the park. I saw a crack in the sky with the light coming through, as Leonard Cohen wrote about, and naturally I thought of Caitlin. Then Eric said, “Have you heard from Maryanne?” And I knew he was thinking of her too.

    A young female friend of Eric’s, former intern at his company, came to have lunch with us yesterday. I gave her a big hug and told her I missed her. I see Caitlin in everyone now and try to appreciate the short time I have to spend with people.

    She has affected us all and continues to do so.

  5. As always, I love your writing. I’ve had a cold too and these days I think a lot more about what it means to not be able to breathe. ‘I can’t breathe’ is no longer something I say when I am sick (though I do my fair share of whining).
    I think of you all a lot, and I look forward to your writings, whatever they may contain.

    Signs are everywhere.
    My mom passed away almost 20 years ago (from lung cancer – yes, she was a smoker, yuck…but everyone seemed to smoke back then). She died in June but I always get more sad on her birthday, Feb 1st. This past week I have met several people with a Feb 1st birthday.

    Hope you feel better soon. Keep writing.

  6. As you do so profoundly well ….. you give us comfort. Comfort for all that loss entails. I got a note from a friend recently that had a quote that made me pause. —- “Those who think there is a time limit when grieving ends, have never lost a piece of their heart”…..I have said that it does get different – it just doesn’t go away. Caitlin is in your heart forever. And…. frankly ….. what better place for her to be. Take comfort and know that many are in your corner. Please keep writing. Much love …..L

  7. Well on a light note. I read in your blog about Jess being in Kenya (and I travel to neighboring Tanzania) and I quickly dashed her a FB message telling her that now Andrew will know the love-
    Africa-bug that bit her, her mother, and me. To end the message I tried to do the heart symbol that she told me how to make but it still came out <+3!

    As I passed the window of a shop in town the other day, I saw something that I knew Jess would love and ran in to purchase it. Mind you, I don't know her address in CA but it will find its way to her. Nearby on another post sat a whimsical scarf with bird images all over it. You must write to keep all that is important afloat.

  8. So good to hear you again, Maryanne. That Bowie song has always destroyed me. I love these memories and images you’re painting here. For as long as you want to write about this incredible daughter , you will find me among many grateful readers.

  9. If ever there was truth to be found on a page it is here. As I have said before, I know writing these posts help you, and they keep Caitlin close to you as well as to those who loved her, and those like me, who only knew of her. She IS around in all those beautiful signs. Your journey will bring you many more.

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