Wouldn’t it be great if it did

I finished ” When Breath Becomes Air” not too long ago. The book is memoir by my friend Paul.  Paul was sick- diagnosed with terminal lung cancer at age 36.  He and his wife Lucy were debating whether or not to have a child, knowing that his time with her might be brief. Paul wanted to leave Lucy with a piece of him- a child they had always planned on having.  Lucy worried that having a child would make his death more painful.

“Wouldn’t it be great if it did?” replied Paul.

******

There was a time when I wished none of it had ever happened.  The joy of becoming pregnant followed by shock of learning our baby had Down Syndrome and then the high risk of loss.  The gradual acceptance and even excitement that followed only to have that taken away, when we were learned she would likely die due to birth defects.  The magnitude of grief I felt after she died was overwhelming. I thought I was protecting myself by trying not to bond too much while pregnant with a baby with a life limiting diagnosis. I thought my grief would be manageable because I knew ahead of time.  I felt like there was an expectation (self imposed?) that I shouldn’t be that sad because I knew ahead of time.

When I was in my darkest times, I sometimes wished it never had happened. I would have never felt the pain. I would have just continued to live my life, innocent of such sadness, happily married, practicing midwifery.

But then there would have been no Mabel.

Now that my baby has been gone for over two years, I can see things a bit differently.  Oh yes, it hurt to lose my child- one that I had hoped for, one that I had said “yes” to under difficult circumstances.  But that pain was evidence to the great love I had.  Yes, Lord Tennyson, it is  better to have loved and lost than to have never loved at all.

 

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Good Bye, Paul

My friend Paul died this week. To be honest, I was not very close to Paul. I probably haven’t spoken to him in ten years, but social media has kept me connected in that voyeuristic kind of way and I have followed his story the past couple years. His death has hit me hard for such a long ago friend and it has ripped me open a bit.

I first met Paul, or Pubby, as he was introduced by his long-standing family nickname, at a summer camp I worked at during my college summers. It was an alumni family camp for my university- staffed by current college students. Job positions were competitive- hundreds applied for sixty spots and those accepted were often known for their creativity and outgoing nature. The fun from those summers spilled into the school year as well, as my new group of incredibly bonded friends reunited on campus. It was like Dirty Dancing- but wilder and more fun- skinny-dipping, costumes, secret parties. Once I became “Staph” I joined a community of welcoming, free spirited people to whom I was always bonded, for years to come. I became instant friends with Staph from years past, even if we never worked together, simply because they were part of the community. I think Paul and I overlapped one summer there- he was a few years older- but I do remember he was a bit of a legend, as many of the older Staph were. I even kissed him once at a party, because that’s the kind of place it was- kisses were given out rather freely. I often told friends that little tidbit, because I was just so proud that I once kissed someone like Paul.

When went to midwifery school, I was accepted to a good program in a city in CT, I arrived at the school with my tiny car (one of those new VW Beetles) packed with all my earthly belongings. I came site unseen. I had interviewed over the phone and had only driven through the city on the highway, remembering the reputation it had as being a dangerous place. I left my car parked on the street and walked timidly around the med school campus trying to find the dorm I would be staying in. I was terrified- I didn’t know anyone or anything about the place. I thought my car would be broken into. And as I found the dorm and was walking up the path, I spotted a familiar person sitting on the lawn outside. “Pubby!” I walked excitedly to him and was greeted with a hug. He was in med school there and having lunch with another med school classmate (also former Staph, no less). He was such a warm welcome on my eyes, and my fear of this scary city began to fade- because I knew someone, someone nice and cool and welcoming there. He made my first day ok.

Throughout those years I saw him on and off, mostly in group settings, though I remember having dinner with him and his then girlfriend, now wife, Lucy- and I always still felt that sense of awe for being friends with someone like Paul. I guess I felt like he was out of my league in a way. He never made me feel that way- it’s just that he was so smart and funny and simply just cool. He and Lucy moved away to California for residency and I stayed behind in that fearful city I grew to love. I kept tabs, like everyone does these days- through facebook mostly. That’s how I learned of his illness. He was at the end of his neurosurgery (yes, brain surgery- he was that smart) residency when he was diagnosed with lung cancer. Lung cancer. A non-smoking physician in his mid 30s. What? He was a rarity. He continued to practice and wrote a lot about his unique diagnosis and how it affected his thoughts on the world, on medicine. His words and his story were fascinating, coming at a time when I needed to hear them. I didn’t talk to Paul directly during this time- just occasional messages on his health update blog, but I followed his publications. His wife even reached out to me while I was pregnant and while I was grieving and we corresponded a bit.

When I was pregnant with Mabel, he wrote this piece, which struck me. The uncertainty of prognosis. Here’s someone like Mabel- diagnosed with a rare disease, so unlikely. No real prognosis can be given. He understands that. But look! He’s living, beating the “odds.” Paul’s diagnosis and continued life gave me hope for my baby. And then my baby died; she didn’t beat the odds, but not everyone can. But Paul was doing it. When he and his wife announced their pregnancy after Mabel died, I didn’t cringe in the way I normally did when others announced such things. I actually thought, “good for them.” Maybe a little part of me was envious because I thought Paul would live- but they understood struggle, so it was ok.

I can’t believe he’s dead. He was young and fighting a rare disease. He wrote about his struggles so prolifically, beautifully, thoughtfully- I thought perhaps writing the words themselves could somehow stave off what apparently was inevitable.

My facebook feed is filling up with photos of Paul and his articles. My first instinct is that I want to look away- it is just too sad. But I don’t. Because I know Lucy can’t look away. I couldn’t look away in the early days after Mabel’s death and I envied those who could just go about their normal lives without the heavy burden of loss. They could feel sad on their own time, while I was trapped in a prison of grief- hard enough to simply be there, but worse to be there alone. It reminds me of when people say “I can’t imagine what you’re going through…” The thing is, I can imagine it. I don’t know what she is going through- my husband has never been diagnosed with a terminal illness, never died. But I can imagine it. I can imagine the sorrow and it’s terrifying. I have actually imagined losing my husband- because that’s what the death of a loved one does- it made me worry about losing anyone close to me.

Lucy announced that Paul passed away with their baby daughter resting on his chest.   The imagine… it’s the mirror image of my loss last year. My baby resting on my chest as she ceased to breathe. Paul’s daughter resting on his chest as he ceased to breathe. So beautiful. And so so wrong too. Babies aren’t supposed to die and babies’ dads aren’t supposed to die.

I am so angry at the injustice. This post is about Paul, about Lucy, about their baby. But clearly it is about me too. I wanted to write an unselfish tribute to this man, who touched so many lives both before and after he got sick and I hope some of that came through. He wasn’t supposed to die.

I think of Lucy, and her family of three- though one is now here only in memory and I think of myself and my family of three, though one is now here only in memory. Paul will forever be tied in my mind to Mabel because their stories are so different, but also so similar. Good bye, Paul. I wish you were here.

one of his most recent pieces….

http://stanmed.stanford.edu/2015spring/before-i-go.html

An interview years ago… (scroll down to the “His Girl Lucy” section.  so worth it, I promise)

http://www.thequietquiet.com/archives/doctor_paul.html