Tag Archives: kalydeco

MARCH 22 — Retablos from Caitlin

I haven’t seen the new movie, “Five Feet Apart,” about two teenagers with CF, but I hear that it  “gets it right” and I’m excited about that. A while ago, I’d said I would start posting more of Caitlin’s own words here. I got too busy writing my book to focus on it, but with CF “in the air,” now seems a good time.

1. Part of a draft for a talk she gave to Vertex Pharaceuticals employees in 2012, about what life was like for her, even when she looked “normal.”

By winter and spring of 2011 I had settled into a pattern of avoidance, which is the first real indicator that quality of life is suffering.  I avoided any situation that would involve me walking any distances, especially with people other than my parents, 1 or 2 close friends, or my boyfriend.  My boyfriend would carry me up stairs or hills when we would go places — he was really the only one I would “go for walks” with, which was still not very fun.  I still drank alcohol and socialized, but only in situations where I could drive or take a cab directly to the place, and leave in the same way.  I would dread being put in a situation where suddenly everyone I was with would want to change venues.  I specifically would not choose plans where the venues of the evening were near each other, because that always meant that we would have to walk. I preferred if they were far away, so there would be an excuse to take a cab, or drive.  Walking on the beach was awful last summer — just a slightly sloping path to the beach — because sand makes walking doubly difficult.  

I remember one moment last March, in particular, that I have thought of often during these past 6 months. I had houseguests— two friends, a couple —staying with me.  We were supposed to meet her friends at a bar and at the last minute those girls changed it to a place that is very literally right down the street from my apartment.  You can see it from my window. My houseguests were from out of town and didn’t know how close it was. It was cold and snowy, so I used that plus the excuse, “It’s close but not THAT close” (it was), and the fact that I was wearing heels, to take a cab.  I mean it was literally 2 blocks on flat terrain.  My two friends couldn’t have been nicer, but even I couldn’t bear to flat-out admit the real reason. It always seemed like, well if i feel THAT sick, why am I  even going out, socializing?  Why am I not in the hospital, or sitting in Pittsburgh waiting for new lungs? It was sooo not that simple.  And once I was somewhere, standing still and talking, I appeared to be completely normal. Even so, we took the cab 2 blocks, and  it was absurd to everyone, how close it was.  They couldn’t have been nicer, but I was embarrassed and so frustrated.  Moments like this happened a lot, but this was the one that stood out. Whereas for years I might get short of breath from an exerting walk, but could just deal with it, I felt like there was no way in the world I could have walked those 2 blocks, even if my life depended on it. 

IMG_2331.JPG

She looks great here, but her lung function was 28%

2. She was a lover of art history who had a real affinity for Frida Kahlo. (I wish she could see the current exhibit in Brooklyn.) This is part of an essay she wrote for a site called Literary Traveler:

In Mexican villages there is a long religious tradition, stretching back to the 18th century, of small, naively painted oils, or “retablo” paintings.  These works were often painted by amateurs, and offered up to God during times of grave, often medical, misfortune; during times of desperation.  Retablo paintings, which were also called Ex-voto paintings (from the Latin ex voto suscepto, meaning “from the vow made”), were fervently prayed to several times a day.  Their purpose was two-fold.  These little symbolic works of art were meant not just as a symbolic offering, given up to the heavens in exchange for saintly aid, but also as a testimonial for future worshipers and sufferers.  The depiction of the victim’s plight was not sugar coated–there was no hiding behind a glowing cherub, no reaching for the chiseled hand of God.  In retablo, tiny figures went up in flames, or lay dying, stretched out on bare bed frames with their insides painted black and green.  The message was clear and raw and poignantly human- ‘this is the terror we are living, so please, please PLEASE–help.’

One modern artist would, in her short life, come to know gritty physical suffering better than most — Frida Kahlo.  Non-religious, highly emotional and unapologetically female, Kahlo was on a trolley at age 18, in the year 1925, when it veered off track, collided with a bus and nearly severed Kahlo in half.  A handlebar from the trolley went straight through her torso; her pelvis was crushed.  Her convalescence following the accident gave way to her first works, painted in bed, often with a mirror propped up next to her, examining the physical burden her young body had become.  Suffering was a constant now, and would always would be.  From this moment forward she would develop artistically and personally to revolutionize Mexican painting, and along her path bring the Christian retablo style straight out into the world it was perhaps always meant to live in — the secular world of the human condition. 

Screen Shot 2019-03-22 at 3.50.44 PM.png

3. On Music

Music – I love lots. I love, like any good Bostonian, good old classic rock, Led Zeppelin, CSNY etc., … Janis, anyone at Woodstock.  But I also am a sucker for the folksy 70’s stuff, singer/songwriter stuff – Carole King, Judy Collins, Simon and Garfunkel, America, Fleetwood Mac (huge favorite) and my all time favorite (me and a zillion other girls..but it’s because she’s so great)…Joni Mitchell.  A lot of times it’s a specific song here and there, and then some artists (like Joni) whom I love everything belonging to. 

I also have a spot in my heart for 80’s music and certain albums that my Mom played — definitely a generation thing — Genesis and Phil Collins, Peter Gabriel, Steely Dan, George Michael, Bruce, the Cars, Dire Straits, the Police.

and then the 90’s. I love R.E.M and Nirvana and Smashing Pumpkins and Counting Crows, and all kinds of songs that remind me of that part of my life. Radiohead, Chili Peppers.

and I love the Grateful Dead. 

and I love soul and Motown, Al Green, jazz and Ella Fitzgerald and Nina Simone.

and Pink Floyd of course.

and David Bowie.

and Queen. Freddie Mercury. My goodness, I love him.

the Velvet Underground

Sublime
Talking Heads
Despite my reservations sometimes about Bono (has maybe become a caricature of himself), I have to say that I Still Haven’t Found What I’m Looking For and Where the Streets Have No Name are 2 songs that I have never ever in all this time of them being overplayed, tired of. 
And within all of these (and more) are certain songs specifically that just are everything for me. For  example I could listen to Gerry Rafferty’s Baker Street on a perfect day out driving and feel so great (corny but true).
I also really enjoy classical – piano mostly, Chopin. But I admittedly know less, and only have about 10-15 songs on my iphone.  I have a hard time remembering the #’s -it goes into a different part of my brain than the brain that can remember every song lyric to every song I know. 
I don’t know what I’d do without music!
Image-1-1.jpeg

Claire Wineland, another CF soul gone too soon

4. A late-night reaction, to me in an email, about some “law of attraction” people she’d read about.

Here is what I see.  The issue here is not that they are ‘wrong’ – I think yes, there is something to the ‘law of attraction.’ Or whatever silly human name they tried to give it. It’s the same thing I feel when I get parking spots. But there is so much more to life than even this end result that these people are preaching. 

What all of this stuff leaves out, laws of attraction and allowance and whatever other crap they are talking about, is the human stuff that is so great and painful and makes life exactly what it seems to be: one giant learning experience. I’m not sure there even is an end to the learning experience, how could there be when we are still human? I am not sure there is any kind of answer we can grasp.  Being sure would negate the whole thing anyway.  We are just here, and we don’t know why.

It reminds me of a funny nagging problem I’ve always had with Buddhism.  Although I respect the peace that Buddhism teaches, and I like that there is a major religion out there that promotes what it does, I’ver always been weirdly conscious of this DILEMMA with reaching Nirvana…in some way escaping all of these things to reach this higher level of clarity where you exist above it all.  Why escape what we are here to experience?  I don’t know enough about Buddhism to really critique it, but I know some.  And it’s funny because part of the entire way that I operate is based on placing myself outside of what is “important” in life, but somehow at the same time, it’s not in line with a Buddhist type of thought, because I am completely enmeshed and in love with the bolts of raw feeling and pain and emotion and hurt and silliness that this life gives you.  I know that I don’t want Nirvana now, or heaven, or whatever other plane it is. I am happy to just know it’s there, and trust that I will like it, when it comes.

What bothers me is that this slight understanding that these wackos have stumbled upon (I think they got it at some point…and then their scary brains took over)….unfortunately their human brains have turned it into something that is the opposite of itself.  It’s a teaching that now breeds the same stuff that they were trying to overcome: disagreement, misunderstanding….everything they probably think they are trying to avoid. 

Just let it be.  And there it is…the idea of letting it be….we don’t have control over what our life sums up to be. 

They say life flashes before your eyes before you die…I think you can make life flash before your eyes, I think it happens everyday and people just don’t notice it enough. 

When I think about my life I picture certain moments, moments that were not burned in my memory or made important because of anything I did.  They exist in my memory for reasons I have no idea about.  And I wouldn’t trade those for all the attraction and allowance and Nirvana in the entire world. 

Daddy always talked about having goals and writing them down.  I don’t think that’s a bad thing, but it was never my thing. I realized that something I did without trying was that I always looked back on each year and could pick out one thing I’d learned.  And I can trace that back to Daddy too, and you.  Being able to self-reflect and change yourself…what a cool quality.  And so neat to see it actually happen, when you can feel yourself change based on what you, and only you, learned.  Best thing I have learned this year is the power of just waiting, sitting back, and not saying anything, and holding your tongue and seeing—NOT only what kind of knowledge will change inside of you, but what you might make other people think about, if they are just given the chance to mull without being told what to think.

Anyway, on that note, I am going to wait until the morning to actually hit send.

love you xo.
—–

And then I tried to go to bed but couldn’t, and this is what I wrote in a notepad document.  Life flashes before your eyes constantly, certain things make up your memory and you dont even realize it. —

POP UPS — Things I think about all the time and don’t even realize.  Pop ups.

  • Willy turning me upside down on the porch, the black thing next to our door.

 

  • 9 east – specific flashes.  Sharing room with anorexic girl.  IV pole when I was younger,  walking through the darker 9 west, 9 north halls. 

 

  • The bookshelves in our living room.

 

  • Made-up image in my mind of you meeting Daddy, it’s very clear.

 

  • White metal chair in the yard. Small kid’s chair ?

 

  • Hospital, 9 east, walking in the garden with the chest tubes, hot air.

 

  • Walking muffin /dogs hot summer, Mashpee Commons.  Afraid of tornados, sleeping in Mashpee, the smell of the house.  VO5 shampoo and conditioner and bath beads.  Smell of the comforters, pull out bed.

 

  • Being in 7/11 with Kenley and Jacqui, hot air.

 

  • Listening to Whiter Shade of Pale with Lindsay DiBiase in a room at Fay.

 

  • Drinking from the cold water bubbler upstairs by Scollay Square.

 

  • Walking into the dining hall at SM wearing tight black skirt and tight pink bebe tank top.

 

  • Coming home from Brooks game and so cold and eating pasta with meatballs and currants.  I coughed up blood on the field at that Brooks game and I was scared.

 

  • Fighting with Mike P at a restaurant on Route 1 while women put up horrible Christmas decorations and we were the only ones there, sick feeling.

 

  • Listening to Touch of Grey over and over again while I walked to the gym freshman year in college, F street corner.

 

  • Walking home on a cold snowy morning, 6am, caring about nothing but the quiet and myself for a moment, turning corner onto F street.

 

  • Walking down the street in Venice with you looking for a drugstore, looking at a turnstyle of postcards of cats, hot air and headiness.

 

  • Turning the corner on 17th street by the Corcoran.

 

  • The feel of my feet against the old tile in the old shower in my bathroom, the dark tile.

 

IMG_0224.jpeg

High school with Alyssa

I’ve felt alive, and sick, and miserable, and happy, and sure, and doubtful many times in my life that maybe I thought would be more meaningful than these simple, plain, silly moments.  But these are the ones that stuck, and make my life.

Of the moments and people that mean something to you I think there is always a time beyond the obvious, beyond the “main event,” that meant more to you than anything else, and it’s usually simple and small and totally random, a snippet you have no control over. 

So you tell me how on earth, (no pun intended) are we supposed to expect to attract and allow, and CONTROL what this life gives us? And why would we want to?

–To follow this blog, click +Follow, down to the right, and enter your email address to be alerted to new posts.

APRIL 23–Coincidences (?)

There are so many, and they have happened pretty much every day, this past year. Here are a couple of crazy ones.

When I announced, in September, that I would be writing my story in a more contained form, the universe seemed to lead me to Dani Shapiro, the author of many moving pieces of memoir and fiction. In November, I made plans to attend one of her small, women-only writing retreats.

There would be six other women in the group. As I was reading the other writers’ pages, before I left home, I wondered why the name of one woman, Julie Himes, was so familiar. Then I realized she was the author of the book sitting right beside me—-my book club’s pick for December. I emailed her to say hello and to remark upon the coincidence.

She wrote back with some equal amazement. In my pages, I had mentioned Vertex Pharmaceutical’s Kalydeco, the gene-correcting cystic fibrosis drug that might have changed Caitlin’s life, if she’d had access to it before her lung damage occurred. In addition to being a writer, the multi-talented Julie is also a research physician and a medical director at Vertex.

On the last night of that November retreat, Julie and the others were talking with great enthusiasm about Sirenland, an annual writer’s conference that Dani, Dani’s husband Michael Maren, and Hannah Tinti have been running in Positano, Italy for the past dozen years.

Long story short: I ended up attending Sirenland last month.

At Sirenland there are three small workshops, with ten writers in each one. I was part of Dani’s memoir workshop. Before I left home, I received the bound pages containing my group’s ten manuscripts. They were in alphabetical order.

I began to read the manuscripts, one per day. A few days before the conference, I was in London when I reached the end of the manuscript.  W. David Weill. The name seemed familiar. I began to read. And stopped. I started talking to myself. What?? What is this??? Are you kidding me???

I called up to my friend who was traveling with me. You are not going to believe this.

David is a pulmonologist and was the medical director of the lung transplant and adult cystic fibrosis programs at Stanford University for years. His manuscript consisted of the first pages of a memoir he is writing about his complicated relationship with organ transplant.

I also realized why I recognized his name.  I emailed the mother of Mallory Smith, the young woman from LA who also had to be transplanted in Pittsburgh, and who passed so tragically last November. Nick and I had just had dinner with Diane and her husband at their California home. I wrote, Is David Weill the Stanford lung doc friend you mentioned?

Yes, why?

And I told her and she said, Oh my God, Mallory did an edit of his book.

So yes, there was that.

Sirenland was an exceptional experience. And David is an exceptional person and I hope that his memoir will find many fascinated readers. He is now consulting, and working to address, as he puts it on his website, an important deficiency in transplant care: the lack of comprehensive quality information about transplant program performance. From his siteIn the United States, there are hundreds of transplant programs performing thousands of solid organ transplants per year. Based on my own experiencing directing programs and evaluating them for public and private entities, I have seen that the quality of the programs varies considerably. This variability is usually not apparent to patients. The mission: Develop a scientifically reliable way to evaluate transplant program quality by using a variety of metrics that will be proposed and tested by experts in each of the four solid organ transplants (heart, liver, kidney, and lung). In order to achieve this mission, I have set up a non-profit entity called the Coalition for Transplant Program Evaluation (CTPE). 

LRG_DSC00524

Our magical workshop space at Le Sirenuse, Positano

         

IMG_1413

The insanely beautiful view from my room at Le Sirenuse.

As I neared the end of my week in Italy, I thought of all the trips that Caitlin and I had planned for “after transplant.”  The last overseas trip she took was to Ireland for her 30th birthday. She traveled with Andrew and they visited her beloved family in Wexford–her grandmother, aunts, uncles, cousins. It was a complicated trip, as that was the summer she began to catch one virus after another. By Christmas, she was on oxygen full-time and would never travel again.

I decided to take advantage of the fact that I was already “across the pond.” I had a ticket home from London but was able to change my departure date. I asked Nick to join me in England, to see, in honor of Caitlin, some places she longed to visit: Salisbury Cathedral, Stonehenge, Bath. He came and we saw those magnificent sites and he was also able to visit with old, close friends and also some Welsh cousins he had not seen for thirty (!) years.

We ended our week in London at the hotel where I twice stayed with Caitlin, most recently in 2012. I showed Nick around the enchanting public spaces and pointed out areas that held particularly vivid memories, like how one afternoon, in the lobby, I realized that the man sitting beside me on the sofa was Cuba Gooding, Jr and he was really sweet and funny and offered me a cake from his tiered tray, then basically shouted BOO! when I reached for one.

I showed him where Caitlin got into the taxi with her big suitcase full of oxygen and medical equipment that took her to the Chunnel train that brought her to Paris and the apartment where she so bravely spent a few long-dreamed-of weeks alone.

After we unpacked, we went down to the hotel’s spa. Nick went to the men’s changing area and I went to the women’s. We arranged to meet on the thermal floor.

Once inside the women’s area, the sights and spa smells were so immediately familiar. How could six years have passed? Caitlin was almost there, a shimmering memory in robe and slippers. I allowed myself a moment, thinking, The last time I was here, Caitlin was alive and my book was about to come out, and Cuba Gooding, Jr gave me a piece of cake. Life was pretty good.

Then I went down to the thermal floor to look for Nick. It’s kind of dark there and I couldn’t see him, but suddenly he came out of a door, followed by a man. Look who I found! he said, and it was Cuba, wrapping me in a big hug, saying he was so sorry for the loss of Caitlin, and then he was gone, and my head was spinning a bit. Still is.

IMG_1617.jpeg

In London

 

–Maryanne

To follow this blog, just click +Follow, down to the right, and enter your email address to be alerted to new posts.

 

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:

Screen Shot 2017-01-24 at 11.50.59 AM.png

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.

Screen Shot 2017-01-24 at 12.38.40 PM.png

Hog Island Oysters at Point Reyes

Screen Shot 2017-01-24 at 12.45.04 PM.png

Screen Shot 2017-01-24 at 12.50.58 PM.png

Screen Shot 2017-01-24 at 1.02.33 PM.png

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.

Screen Shot 2017-01-24 at 12.35.51 PM.png

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.

img_5097

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