Category Archives: organ donor

FEBRUARY 7–(Turn and face the strange) Changes

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.”

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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.

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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.

–Maryanne

 

 

 

JANUARY 31–Half-Birthday, Groundhog Pup

I’ve been doing some reading about grief and neural pathways and how grieving morosely can become a chronic habit. I believe that eventually we want to be in the position of celebrating Caitlin’s life as opposed to mourning her death, as a friend said last week. So I’m going to make an effort right now to remember Caitlin’s great sense of humor, in honor of her half-birthday.

Yes, it’s her half-birthday, something I always jokingly ‘celebrated.’ It started when she was little and I used to send cupcakes into school on January 31.

This Thursday, February 2, is also Henry’s 13th birthday. Well that seals the deal, Caitlin said when the breeder told us he was born on Groundhog Day. Groundhog Day was one of our family favorite movies. Henry was meant to be ours.

We could never have imagined that we would end up living our own version of Groundhog Day in the very area where the movie takes place. Two years ago today, Facebook Memories tells me, Caitlin and I drove out to Punxsutawney for the weekend festivities. We laughed the whole time, and bought ourselves a chainsaw-sculpture groundhog.

We continued to laugh. Here’s a Facebook post of mine from just a couple of months ago:

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As for our real little groundhog pup, Caitlin realized she had totally come late to the game with making Henry a famous Instagram dog, but went ahead and made an account for him anyway, about a year ago. For a look at her humor and to remember her with some smiles, here we go:

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PS:

An interesting thing about Groundhog Day, the movie, and why it really is so great, is that the more you watch it, the more you realize that it really is an excellent illustration of the evolution of the human soul.  New York Times article: “Groundhog Almighty.” 

 

 

 

 

 

 

 

 

JANUARY 30–Windows Left Open

I haven’t seen Hamilton yet, but I know the music well and I keep thinking of the lyrics… The world turned upside down 🎶      My God, it’s so upside down right now, but everyone’s protesting, speaking up. It feels good, but if you’re feeling helpless, you can start here: Join the American Civil Liberties Union

Caitlin’s father is an immigrant from Ireland, a guy who came here without a green card, and worked hard and who has been employing dozens of people for thirty years.

I love this photo of Caitlin on a cold night—but just wearing a headscarf is a sign of bravery these days.  I can easily imagine some ignorant bully verbally or physically abusing her because of it.

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Or her having to face this, as she would have in an earlier time.

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I was getting some stuff off her computer today, and I remembered she often kept little text windows open where she would jot down her thoughts. These two were still open, unsaved.

what on earth could i have to say?
how much should we self reflect?
 
wild rice
quinoa
papaya
 
And this.

Redemption song
what kind of a country are we? “I want to be my own nation” – a character in ___ says.  My mind can’t make sense of killing to protect a nation.  It’s not my mind actually.  It’s something else. My soul? My mind can understand it.  We live in a nation and we want the protection and rights it affords us so we have to be willing to fight for that.  People want to harm us….I would want to fight for freedom.  Its not anti fighting.  But as a person, deep down, can you ever really reconcile that?  Or is that all part of being human. Having to live with the reality that your life might mean someone else’s death.  In any scenario. 

 

Uplifting Stuff:

Jess and her wonderful artist mom, Stephanie Danforth, have been going to Kenya for years, where they do a lot of work for kids via the Daraja Academy and the Simama Project. They are there right now, and so is Andrew.  He took this opportunity to expand his world and do some good. Here are some photos from the past couple of days.

From Stephanie:

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Playing sports with the kids.

 

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A little chess.

And Jess sent this earlier: a little rainbow where there has been no rain.

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It turns out that rainbows can be found in the most unlikely of places.

Update:

Right after I posted this, my niece texted me.

So crazy. I just read your post on the blog and had to share this with you. I was driving home from NH yesterday and there was a rainbow in the clouds. It wasn’t and hadn’t rained though. I tried to get a pic, but just couldn’t capture it.  ❤

JANUARY 28– The Answer, from Caitlin

When Caitlin was a small, small person and had frequent hospitalizations and weeks of home courses of IVs and then a long, serious surgery at age 11, my mother would always marvel at her. “She’s so stoic,” she would say.

But it wasn’t like Caitlin didn’t have fears or anxiety. It was just that she pretty much kept all of that to herself.

Once, when she was about 3, I heard her in her bed talking to herself. “Always have to cough, don’t know why.”

And one day I found this little drawing:

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Like the frog in the slowly-boiling water, you get used to dealing with what you have to deal with, and it becomes the norm. I’ve been looking through old journals, and as I read through them, I kind of shudder. We always lived with held breath and a cracking heart. From the year she was 11 and spent months in the hospital, after surgery to remove part of her left lung:

I was just looking out the window and saw her clench her fists, then run up and down the yard. She’s trying to make herself better.

Last week, on Caitlin’s Boston bedside table, which was usually stuffed with toppling-over stacks of books, I was surprised to find only two items: one of Dr. Brian Weiss‘s soul/reincarnation books, and a little health journal she sporadically kept. In 2012, that year that I wrote was so great the other day, she had written:

Waiting on bloodwork and doctor’s call. Stressed. Scared. I don’t know if having another disease is something I can handle. So much time thinking about myself. Feel depleted. So much time just trying to care for myself that I have no energy left to really truly do something outside of me. Wish I could just forget about myself and throw myself into something meaningful but the mundane daily aspects of health keeps me tethered to my stupid problems.

Caitlin had cystic fibrosis, but by the end, she also had severe pulmonary hypertension, CFRD (diabetes), ocular migraines that put her at higher risk for stroke, blocked sinuses, and constant, painful total body aches that required round-the-clock doses of Tylenol. I’m sure I’m forgetting something, but the point is, all of these conditions required care. At her service in December, Andrew pointed out that every single day, Caitlin climbed a mountain. Every day involved so much more effort than any regular person can truly imagine.

This past week has been, for me, the hardest yet, the finality of her absence more fully real. It didn’t help that on Monday, I reached out to an MGH therapist who was supposedly outstanding—knew CF, transplant, ECMO, etc., someone who would understand the trauma of Caitlin’s life and last weeks without a lot of explaining by me. I waited for a reply, for a lifeline. On Tuesday, I received this email:

Thank you for your phone message. Unfortunately, I don’t have availability to see people for weekly therapy in my cystic fibrosis clinic at MGH given the limited time that I am there. Do you need to stay within your insurance network? If so, I can ask around in our department to see whether someone with experience dealing with illness and grief may have time.

We happened to be in Caitlin’s apartment  when I received that email and I was livid and hysterical and couldn’t stop sobbing all night long. All night I thought: in the morning I am going post this callous person’s name on my blog then march down to MGH and accost her, in person!

I obviously needed to unleash some anger.

I sent a restrained reply instead:

I left you a voice mail explaining that my daughter died after being on ECMO.
I am stunned by the lack of empathy in your response.

 

Then I let it go. I have to let a lot of things go. Caitlin would be the first to say so.

She was such wise counsel to so many of us. After my inward rant, in that little black health record, I also found this:

___________________

September 12, 2012

Feel desperately hopeful now that Obama will win. Biden’s speech tonight about his grandmother and courage.

Courage. That word means it all to me.

When I feel myself flailing, grasping, panicking with pain or hurt, I get a notion in my head, always, and remember that there is courage. Courage is the answer. Because courage doesn’t negate the problem, it exists within the problem. And when you realize the answer lies in taking in the problem and living in spite of it, with full awareness of it, you feel a new option and a new sense of hope and life.

JANUARY 24–The Price We Pay

We are home. We decided to fly out of San Francisco on Saturday. It was time; we need to get things done here. I was sorry to miss the marches, but as my good friend Ellen pointed out:

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I wasn’t sure I could go into the Boston apartment, never mind sleep there, but we did, and it was actually somewhat comforting. Also, by chance, my sister and brother-in-law were staying in Boston that night, and it was also comforting to spend time with them.

Random Thought: Barbecued Oysters

I really appreciated the notes from all of you who were grateful for the trip reports. It was  easier to grieve out there, close to that spectacular coastline and those ancient trees. Caitlin felt with us. Now, home, she feels very much absent again. We will work on that.

Our last day, Jess took us up to Point Reyes where we sat at picnic tables in the freezing cold and ate the most delicious barbecued oysters. If you’ve never had barbecued oysters,  you’ve got something to look forward to.

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Hog Island Oysters at Point Reyes

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Beautiful Jess

Random Thought: 2012

Five years ago it was 2012, and 2012 turns out to have been one of the most wonderful years of our lives. Viking was publishing Cascade. Nick and Caitlin and I took a relaxing winter trip that turned out to be one of our best. And that summer, after living alone in Paris for a little bit (a longtime dream), Caitlin met Andrew.

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Caitlin in Coral Gables, 2012

 

Yesterday, I found an old email I sent to my sister:

Caitlin really clicked with that boy. She said they talked instantly and forever, of ‘things’ and that he was very smart and kind. As she was telling me about him, she said “it’s like he was the male version of me,” and then her face went a bit white, and she said, ‘oh my god, that’s what the psychic told me. i would be the female version of this person i was going to meet.’

He felt the same. How lucky they both were.

Also, in 2012, Caitlin had been on a kind of wonder drug for a year. Kalydeco, invented by Vertex Pharmaceuticals, targets the specific genetic CF mutation that Caitlin had. Within hours of taking it for the first time in 2011, she felt better. She gained weight and had fewer lung infections. If Kalydeco had existed before her lung damage happened, it would have been as good as a cure. Although it ultimately came too late for her, she did enjoy a couple of relatively healthy, hospital-free years because of it, and enjoyed talking about her experience to a few groups, including Vertex and the Boston Business Journal. Drugs like this came about because of all the support for the Cystic Fibrosis Foundation, and we all thank you for that support.

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Caitlin interviewed by Boston Business Journal

Random Thought: Hereafter

Yesterday was the first day I spent alone in the house. Nick went back to work and kept himself busy. I managed to take a shower, but mainly I cried all morning. The news was all horrible and the day was gray and reminders of Caitlin were everywhere. There is a mountain of cards here and we are so incredibly grateful for them. I tried to read one or two but couldn’t manage any more, yet.

I finally decided to watch a movie that I love, “Hereafter.”

Hereafter came out in 2010 but didn’t do well, mainly I think because people went to it expecting a disaster movie–it opens with incredible special effects that depict the 2004 Indian Ocean tsunami. But it’s not about special effects! It’s an intelligent, engrossing, and very well-written movie that ruminates on whether there is an afterlife.

Matt Damon plays the part of a reluctant medium very very well.

After watching it again yesterday, I realized that it was written by Peter Morgan, writer of The Queen and The Crown. No wonder it’s so good, I thought.

In Pittsburgh, Caitlin and I loved to watch series-type shows after dinner. Our last show was The Crown, and we finished it right before she went into the hospital in November.

At the time, I looked up some of the actual events that took place in the show, including the Queen’s friendship with “Porchie,” and came upon this statement she made after his death:grief is the price we pay.png

She was, in turn, quoting from Dr Colin Murray Parkes, a hospice pioneer:

“The pain of grief is just as much part of life as the joy of love: it is perhaps the price we pay for love, the cost of commitment. To ignore this fact, or to pretend that it is not so, is to put on emotional blinkers which leave us unprepared for the losses that will inevitably occur in our own lives and unprepared to help others cope with losses in theirs.”

With this quote in mind, I want to point out that we are always going to want to talk about Caitlin, even if our voices crack and our eyes fill up. The pain of our grief was definitely worth the price of our love, and we’ll be paying for the rest of our lives. That’s okay.

With much love for all of you as well,

Maryanne

JANUARY 19–Words from Jess

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Jess wrote a post on her own blog today. It’s beautiful and here it is:

Castro avoided over 600 assassination attempts throughout his life, but even he couldn’t hide from 2016. 

2017 is the year of the Rooster and the year that a person who has never held public office is slated to become the 45th President of the United States of America. It was supposed to be the year that I traveled to Red Square with Caitlin. The year of Harry Potter lungs and silicone implants. The year that we emerged with our matching clamshell scars. But it’s not and it won’t be.

This is my first time writing in months. Usually it helps to express and manifest the inexpressible but, in this case, it wasn’t helping. I have tried to make sense of what happened, to play each and every scenario over in my head. Also, everything that I ever wrote, I always sent to Caitlin with the flagrant subject line “DRAFT” – and she would quickly respond with candid feedback. She was my editor. 

When I returned from India in the middle of December – from the cacophony of Jaipur and the undulating hills of Udaipur – I immediately flew to Pittsburgh. Caitlin had been on life support for a few days while she waited for lungs. I arrived in the city of bridges, home of the Steelers and quickly enmeshed myself into the daily routine. We – Maryanne, Nick, Andrew, & I – took shifts, ensuring that one of us was always by her side in the CTICU. We held her hands, we massaged her feet, and we read Mary Oliver passages aloud – a small act which seemed to perk up her waning blood pressure.

Last week, I had this terrible moment where a dear friend that I met while living in Kenya texted me after returning from several weeks in Cuba. She wrote, “Did Caitlin get her transplant?” I froze. I slowly typed,“Yes, she did” and then added “but she died” after that. So awful. Little things like that keep happening. I don’t want time to move on because I am so afraid of forgetting. The only image in my head is of Caitlin in the ICU and I am having such a hard time remembering anything before then. There is a dichotomy – as Caitlin’s situation has made me less afraid of dying because I know that she is there (wherever there is) paired with this unyielding desire to live, to really live – for her. 

I left Pittsburgh on the morning of December 20th. I had to fly back to San Francisco for chemo but I planned to be in California for just a day or so. I left UPMC – the hospital – and texted the other three, “I’m en route to the airport with Jim but I will see you all in a few days for five little pig Christmas. I’m just a phone call away if you need anything at all. Don’t let leather jacket man steal my chair-bed, keep writing in the chapel book, and keep the sails up…

Later that afternoon, Caitlin died. She was supposed to live. She should have lived. She should have had the chance to use her new, perfect lungs; to see her oxygen saturation at 100%. But she had to wait too long for her transplant, and her body had been through far more than any should endure. 

Below are the promises that I made to her when I spoke at her memorial service:  

  • I promise to do something extraordinary. I promise to make you proud and I promise to keep your light and your spirit alive.
  • I promise to do all that I can to fix the organ donation system
  • I promise to plant a garden that will mean for many what Prouty meant for you
  • I promise to smile at sad looking strangers and to address little pups in your Henry voice 
  • I promise to always be kind
  • I promise to learn more about astrology and its intricacies
  • I promise to trust my intuition; to listen to my own voice and to be in a state of non-resistance
  • I promise to take care of your Mom and Dad and Andrew
  • I promise to order Watermelon Sherbet in July
  • I promise to always say Rabbit Rabbit
  • I promise to do something – once a day – in your honor
  • I promise to advocate for those who are unable to advocate for themselves; to always be aware of the plights of others.
  • I promise to listen to Joni Mitchell and to text you when Losing My Religion just happens to play on the radio
  • I promise to finally see a movie by myself. A good movie. None of that junk.
  • I promise to keep wearing giant pearls and continue adding to our tribal wrist collection
  • I promise to find the magic; the unsung beauty.
  • I promise to attempt to write a Modern Love that tells the story of our friendship; our matching clam shell scars.
  • I promise to have a day where the only words that I speak are “can I have a water and a muffin?”
  • I promise to live; to really live; to stay away from the surface and to go deep; deep where the lobsters go.
  • I promise to keep having faith. Faith that there is beauty in this sometimes tragic life.
  • I promise to never take my lungs for granted. I promise to cherish each and every breath.

And so, 2017 will be the year of Caitlin O’Hara. My ruby slipper, my person, my heart.

 

 –Jess

JANUARY 16–Ropes Course for Souls

Big Sur. I had it in my head that we needed to get here.

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Fairy Ring of Coastal Redwoods

The glorious, big days are somewhat easy here. Night is still night, and nights are hard. At 2am the night before last, after getting a dozen messages from people telling me of signs they were sure they received from Caitlin’s soul, I thought, okay, I’m going to ask for a hard sign. I want a monarch butterfly to fly around me in a complete circle. Tomorrow.

And yesterday we went to Esalen for massages and to experience their famous hot sulphur springs.

Time has been a strange thing. Sitting in the hot water with the sea crashing below, all I could think was, Exactly four weeks ago today, Caitlin was in surgery and we were so relieved and happy. And now I am at Esalen, a place that seemed like Neverland.

Nick loved the energy at Esalen and afterward, went to look at the big farm garden there. I sat in an Adirondack chair overlooking the Pacific and I thought about the end of Mad Men and how I wanted Caitlin to see that I was there and a couple of monarch butterflies began flying all around… not right around my face, the way I’d envisioned, but in big swooping circles that took in much more than me.

A few people have said they enjoy reading Caitlin’s thoughts so here’s something relevant, as we all face the coming week.

From: Caitlin O’Hara <caitlin.ohara@gmail.com>
Date: October 2, 2016 at 10:31:46 PM EDT
To: andrew
Subject: Wow read this

https://www.washingtonpost.com/national/finally-someone-who-thinks-like-me/2016/10/01/c9b6f334-7f68-11e6-9070-5c4905bf40dc_story.html

With my big book, Sarum – that I’ve been reading that traces England from beginning of man to now — to this new book I’m reading – which does a similar thing with the slave trade and is already so so so good and opening up news ways of looking at slavery (for me) I just feel like plus alongside this election, which is challenging everything I took for granted ..::it’s an interesting and weird time to be alive and experiencing. I can’t help but imagine these times in the past that I read about, and then think how the time we live in now will just be something that happened to someone else, in the future….It will be this weird blip in history that is a forgone conclusion because it’s over, it’s sorted out. We learn about bad things that happened and somehow they don’t seem quite as unbelievable because the people in the future have figured out why it happens, and we know the ending.  I hope it doesn’t happen soon, but at some point the US will no longer be around, or it will be much different than it is now. And it won’t seem weird to people reading about it in history books. We will just seem like the dumb idiots of history who elected trump. Like the sheep in Germany who followed hitler. A question on a test somewhere. We parse the decades out and they all seem so different

– when I read Sarum I have a tendency to do a double take when things are different from say 1650 to 1690—when the area in the book has undergone a huge change. But of course in our modern history entire revolutions and wars happen in shorter times. Countries fall. We are all the same and we all have a collective fallibility and vulnerability. It can happen to any country and any place … but we also are all the same in that we never seem to really learn from history or believe WE are the ones making mistakes.

It’s part of why the idea of souls makes sense to me. This place is just like a ropes course for souls. A learning center. It never changes and the collective body of humans can never sustain their progress too too much or else there is not enough to challenge the souls. Imagine all the people living life in peace ✌️ John Lennon – well that wouldn’t really work if you believe we need to be challenged to grow. At least in the human form.

 

 

** The slave trade book was Homegoing, by Yaa Gyasi

Sarum is by Edward Rutherfurd