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

 

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Sunday Synopsis

Why I don’t want my miscarriage to stay a secret- great post that brings miscarriage into the babyloss community.  Miscarriage is a different kind of loss than stillbirth or neonatal loss, but there is still so much grief that can accompany it.

How should an abortion be– WARNING.  I know I have many readers who will not like this article. I post it not to make a huge political statement, but instead I post it because it fits into my latest theme- feeling pressure to grieve the right way.  I also post it because people terminate a pregnancy for many reasons- including medical, because her health is at risk or the baby has a fatal condition.  Babyloss is a taboo subject, as is termination- so there are some similarities there.  They come with complex and nuanced feelings with pressure about how we are supposed to feel.  Many people in the babyloss community might feel complete different/separate from the abortion community and that’s OK and totally reasonable too.  I post only to show that people in different circumstances can also feel the pressure of how to grieve/not grieve appropriately, just like us.

Here are just some of the people living with an extra chromosome and rocking it– I love this.  In some ways it’s a very nice contrast to the article above this.  Yes I am pretty open minded about people’s personal decisions when choosing to continue (or not) a pregnancy- it’s their choice.  And most (up to 92% some sources say) women choose to terminate a pregnancy with a Down Syndrome diagnosis.  Getting the diagnosis means at best a lifetime of caring for a special needs child, likely a host of medical problems, and a disability of unpredictable significance (mild to severe).  At worst it means a miscarriage, a stillbirth or a dead child.  When people make their decision, I just hope they also consider the info in this video.  No one is guaranteed a perfect child and those with trisomy 21 can do so much more than we sometimes imagine.

Speaking of dead moms– I love the ending of this.  “Sometimes speaking of death isn’t necessary, and sometimes sharing it isn’t possible. We do as we do to get through. We eat the black jelly beans.” As Mabel’s birthday approaches, I’m torn between wanting to shout from the rooftop and huddling down, not speaking of her and keeping her memories to myself.  I have just ordinary days like that too.  Speaks to my recent theme- there is no right way to grieve.

How’s-the-baby season

“How’s the baby?”

I was asked twice today. I am now seeing patients for their annuals who saw me this time last year, when I had a baby bump. I dreaded this time. I made the sign for this time. Months ago I couldn’t imagine the pain I would feel as people eagerly asked about the baby.

“She died shortly after birth.”

I can say the words effortlessly now. I don’t get flustered. It’s the awkward silence that follows after the requisite and heartfelt “I’m sorry”s that I don’t know what to do with. I fill it with short sentences like,

“We knew she was sick, but hoped it would have been different.”

“It’s been a difficult year.”

“I’m here, so that’s good.”

I’ve been asked a number of times about the baby, but those comments have been spread out over days or weeks. Two in one morning made me realize I’ve now hit the how’s-the-baby season.

I was just getting to the point where I wondered if I should take down my sign. I sometimes found the comments disrupting to the visit- I never minded them (I always appreciate someone who has something to say about my baby), it sometimes just didn’t flow- I felt like I had forced the info on them with the sign. I’ve had several patients come back in after their visitor or call me later, seeing the sign as they left. I feel like I can answer questions about “the baby’ more easily. I was thinking that this easiness with the question was an indication that I could do without the sign. But today has shown me…not yet. I’ll probably take the sign down either in the new year or at the one year mark, because when else do I take it down? I’m ready and not ready all at once.

“How’s the baby?”

Part of me wants to respond, “She’s dead, thanks!” But I don’t think people would quite get my dark humor there.

How do you react to questions about your baby? Has it gotten easier? Harder?

What am I so afraid of?

What am I so afraid of?

I am spending the week in North Carolina with my extended family. Nearly thirty of us are gathered for what used to be an annual family reunion and now is a more sporadic get together. This was this trip where I was supposed to be introducing my baby to all her relatives. Instead I am here trying to enjoy myself, despite the fact that my baby died, despite the reminder that this trip was supposed to be different, despite the presence of my newborn nephew.

What am I so afraid of?

My sister suggested that holding him might be the first step in getting over reluctance to hold a baby. I had talked to her about my concern about going back to delivering babies and she was trying to be helpful. The idea of holding a baby isn’t so much a phobia, but there is fear involved.

I’m afraid I’ll be taken back to the last moment I held a baby. I had been holding babies sometimes as frequent as daily because they often cross my path at work. When my coworkers had seen me with a baby on my hip as I talked to his mom, they have commented on how natural I looked. My friends have been amazed at how comfortable I was holding their little babies. But the very last baby I held was my own. She was dead.

I’m afraid holding a baby will bring me back to those moments of holding my dead daughter’s body. I’m afraid the weight of a small body in my arms will open up that place I have sewn up in my chest, the spot where I tucked away the hurt I felt relinquishing my baby. If you want to know what sadness is, listen to the sobs of a mother as she hands over her baby’s body to then nurse, never to hold her again. Ever.  I’m afraid those sobs will spill out and I’ll never be able to tuck them back in again.

Perhaps the weight and warmth will remind me of the few hours she was alive and I’ll be taken back to a brief time when I felt hope before it all came crashing down. I don’t like feeling hope these days because inevitably something happens and I fall. The more I had hoped, the further I fell. Going back to that moment of happiness and hope even for a moment will make returning to reality a hard fall.

I’m afraid my breasts will tingle and leak, the way some women who’ve had babies say theirs do when they hear a newborn. I’m afraid they won’t, proof that my baby didn’t live and I’m not a real mother.

I’m afraid of the rush of love I might feel for my nephew if I let myself and by doing that I am somehow betraying my daughter. I am not supposed to be happy around babies. I have so few things that keep me close to Mabel and right now grief is one of them. Letting that go, even for a moment, feels like I’m letting go of her.

Does my heart ache when I see that baby across the room, when I hear him gurgle and cry? Yes, of course. My heart aches for so many reason. I want my daughter. I want to be able to hold him without any emotional baggage. I want the life my sister has with this baby. I want things to be different.

What am I so afraid of?

I’m afraid I’ll be sad.

Come home safely Chris

My husband returns home tomorrow.  It’s been two week since he sat next to me on the couch watching Orange is the New Black.  Two weeks since he fired up the grill for a fajita dinner.  Two weeks since I kissed his sleepy face goodbye as I ran off to bootcamp at some ungodly hour.  My husband had been summoned to Japan to take tours of facilities and sit in hours of meetings for work.  It was been a long two weeks.

For a year and a half of our dating life we lived apart.  When he applied to the competitive two year rotational program at work, knowing he could be placed time zones away from me for eight month periods, I said to him, “Ok.  But I want you know that I’m in this for the long haul.  If you go away, I expect that we’ll still be together when you get back.”  For sixteen months he was in Pennsylvania, commuting back to Connecticut on the weekends to see his girlfriend.  It could have been worse, I know.  It could have been Canada or Puerto Rico or Troy, Alabama, but it still wasn’t Connecticut.  After sixteen months he came back and three months later we were married.    Turns out he was in it for the long haul too.

In the scheme of things two weeks may not seem like much, but this will actually be the longest we’ve ever been apart.  It comes at a tough time too.  I’m still actively grieving, adjusting to my return to a job full of triggers and battling emotional mood swings.  Enough time has passed and I appear to be functioning, so I’m not on people’s radar as much.  The first week, I turned out to be quite busy, which was nice.  The second week, I have had less invites (not none, though), but that turned out to be a good thing.  I was a bit in the doldrums and needed time by myself, something I haven’t felt I needed in a long time.  I guess without my rock, my Chris, I don’t function as well.  The thirteen hour time difference didn’t help- his morning is my night and so we were always catching each other on our way out the door.

Right now he is on a direct flight from Tokyo to New York.  I can’t help but be worried.  In the past few months I’ve developed an acute sense of worry about my husband’s well being.  I have him email me when he gets to work every day, just so that I know he didn’t get in a car accident.  This year I’ve faced what many would call one of the worst possible things- but I know differently; it could be worse.  I could lose even more.  I could lose Chris.  Being struck by tragedy once has made me sensitive to the idea that other tragedies can happen, as unlikely as they might be.  This is a normal process of grief, I know, but normalizing it doesn’t lessen it.  A commercial plane was just shot down mistakenly and almost three hundred people lost their lives.  That news story has amplified my worry about Chris’s travel.  Sixteen hours in the air, with no way to contact me to tell me he’s fine.  I’m holding my breath until he lands.

The day my dog died

We got a dog when I was fourteen.  He was a Scottish Terrier named Trevor.  It took some debate, but we were finally able to come up with a name that the whole family agreed on- an impressive feat for a family of six.  One day my father dropped me off at home on his way out to run an errand and I ran into the house.  I wasn’t greeted at the door as by Trevor as usual, so I called out and started looking around the house for him.  I finally found him up in one of the bedrooms, convulsing on his side.  I picked him up and ran down the stairs, out the front door, trying to signal to my dad across our large front lawn as he drove away.  I ran stumbling, weighted down by the rigid body of my dog, carrying him in one arm while awkwardly trying to wave the other.  My dad didn’t see me and continued on his way.

I brought Trevor inside and lay him on the floor.  I called my friend who I knew had dogs and told her what was happening.  “Something’s wrong with my dog,” I said. “he’s shaking and biting his tongue.”  She didn’t seem to understand and suggested putting a blanket on him because maybe he was cold.  When we got off the phone I found a blanket and covered him.  I tried to dislodge his tongue from his clamped down mouth and in my efforts my finger got caught between his teeth.  A blood blister began to form.  The phone rang and it was my friend’s mother.  My friend had told her what was happening and she said she’d be right over.  When they showed up in their minivan, I walked down our front walk with Trevor in my arms, covered in the blanket.  I carried a wad of tissues with me, but was unable to reach my tear-streaked face while holding my dog.  A few steps before their car, Trevor’s body went slack and I felt a warm wetness spread through the blanket in his final release.  We continued on to the vet and I sat in the waiting room with my friend while her mom took the dog in.  When she returned, she confirmed what I already knew: My dog was dead.

Later that day my dad told us my Nana had died too.

My first experience with death.  It would not be my last.  I would later go on to lose my three other grandparents and my aunt.  I would dissect human cadavers in my college anatomy class.  I would hold stillborn babies.

But the day my dog died was the first time I held a living creature in my arms and feel life slip from of its body.  I thought it would be my only time.

Holding Trevor, I was scared, confused about what was happening.  I was alone, a vulnerable teenager trying to comfort him with a blanket as I witnessed his last moments.

Holding Mabel as we took out her vent, I was well aware what was happening.  Chris at my side, I was surrounded by family, far from alone.  I took off her shoulders the blanket we had chosen for her, so my hand could rest against her bare skin, as much of me touching as much of as possible.  I was a mom with a brave face and sad heart witnessing her child’s last moments.

I have held two living, breathing, loved creatures in my arms as they died.  If I had to do it again, I would.  I would be there with Trevor, so he would be with me, not alone, while he died.  And I would hold my daughter again and again as she took her last breaths.  I would hold my daughter forever as she died.

At Least

The auditorium was silent as the short-haired blond woman walked the few steps to the podium.  The attentive faces of fellow bereaved parents looked towards her.  The back rows were filled with nurses, doctors and midwives, all wanting to show their support, but feeling on the fringe on such intimate moments.  She spoke calmly at first, but as she began telling of her daughter’s victory in her battle of early childhood cancer and her later hijinxs with text messages, her words quickly gained speed.  She was animated as she spoke of how her daughter walked as a toddler when doctors had said it was impossible due to the tumor.  Her voice lowered when she talked of the resurgence of the cancer in her daughter’s early teen years.  She spoke of dropping her daughter off at cancer camp as a teenager, eager to spend time in her happy place.  She was glad her daughter could make some good memories before she came home, when she would tell her that they could do no more.  When she came home from camp, she had to tell her daughter that she was going to die.

It was a night of pediatric remembrance for any bereaved parents of children who died after getting care at the hospital.  When the speaker began talking I wasn’t sure I was going to relate very well to her story; my daughter was a baby when she died, hers was a teenager.  But when she spoke those words about needing to tell her daughter about her own imminent death, tears rolled down my cheeks.

I thought the worst was knowing that your child would die far too soon.  But I think the worst might be knowing that and figuring out how to tell your child such a thing.  I reflected that I was glad that I didn’t have to tell my daughter she was going to die.  It’s funny the things we are grateful for- “I find myself thankful for large and small things, in the way of people who’ve lost two limbs and are glad not to have lost four.” wrote Elizabeth McCracken in An Exact Replica of A Figment of my Imagination.  I am grateful that I didn’t have to tell my child she was going to die, says the mother whose child died.  At least I didn’t have to do that.

At least.

I hate those words.  People try to console me with “at leasts”

At least you got to hold her.  Fifty years ago they just whisked my grandmother’s stillborn baby away.

At least she was born alive and not born sleeping.

At least you’re still young.  You can always have another.

At least you got so many photos of her.

At least you had a vaginal birth.

At least you know you can get pregnant.

These are all things I am grateful for- but putting the at least in front of them minimizes my grief.  There are no “at leasts.”  At least I didn’t have to tell her she would die.  No.  That makes it sound like I should be grateful in some way about my daughter dying.  When people say at least, they are either trying to make me feel better (they can’t) or trying to find some good in this whole situation (there isn’t).  Intention with those words is good.  But what I think people are trying to say is I’m glad.  When people say at least, I feel like I have to defend my grief.  I can’t respond well.  But simply swap out the words at least for I’m glad and suddenly I can say “Me too.”

I’m glad you got to hold her.  Me too.

I’m glad she was born alive.  Me too.

I’m glad you’re still young.  Me too.

I’m glad you got so many photos of her.  Me too.

I’m glad you had a vaginal birth.  Me too.

I’m glad you know you can get pregnant.  Me too.

I am guilty of thinking and saying the at leasts as well.  I’ve done it conversation with other baby loss moms.  I’m catching myself.  I even am guilty of saying to myself.  At least I didn’t have to tell her she would die.  No.  I’m glad I didn’t have to tell her she would die.