The duality of grief

My heart was pounding before I opened my eyes. I’d been in the middle of a bad dream, but once I was awake, the slapping of water against fiberglass shifted my attention as our boat rocked side to side. This anchorage at Great Guana Cay was rolly because of its proximity to the Atlantic, its shallow sandbanks, and currents pushing through narrow cuts. The turbulence combined with anxiety from the dream put me on alert that someone was trying to board our boat. I listened for footsteps and thought of hatches we may have left unlocked.

It wouldn’t be the first time someone boarded our boat in the middle of the night, though it would be the first time while at anchor. But that’s not what was happening. It was just the motion combined with residual fear from the bad dream. And the dreaded day with its steel-toed boots waiting to kick me in the stomach. I reached for my phone: it was 4:43 a.m. I turned off my 5 a.m. alarm and forced eyelids to open wider, alerting the brain that it was time to sit up.

With 350-square-feet and four people, there isn’t much personal space on this boat. Or alone time. Our seven year old wants to play beginning at 7 a.m. and our 23 year old is ready to socialize as soon as the seven year old goes to bed. A few weeks back, I woke early thinking about a proposal I’d written and then got out of bed to make a few changes before hitting send. Being at the computer in solitude for a couple of hours before others woke felt like discovering a secret. No one talked to me or asked for a snack. I’ve been getting up in the dark intentionally ever since. I’ve been using the time to write and think.

On that particular day I was thinking about the calendar. It was Mother’s Day. I am estranged from my mother; the boy who made me a mom in 2003 is dead. The day also marked the crossing of an invisible chasm. It marked the day that Riley – my 11 ½ year old son – had been dead longer than he was alive. With the help of a pod of compassionate humans, I had thus far endured 4,219 days without him. 

In the same way that I have known that his younger brothers would pass him in age and I know that his seven-year-old sister will one day pass him in age, I knew this day would come. In reality, it was just another day without him. He was dead yesterday and five years ago, and he will still be dead tomorrow and five years from now.

Nonetheless, my body’s grief calculator had felt the day coming. My buttons have been more easily pressed, making me erratic and distant. In my endless calculation of life and death, I have been visualizing things that can be made and unmade: a pencil sketch; a kitchen mess; a bed. I cut my hair with kitchen scissors shortly after Riley died; it grew back. Addition, subtraction. Subtraction, addition. But none of those are like the birthing of a child and then bearing witness to their death.

A child’s death is not the quiet undoing of a life. It is an explosion that leaves an invisible, weighted menace that must be heaved with you wherever you go. It is shouty and bossy and distracting and demanding and unruly. It carries a stick and whacks your knuckles if you fail to follow its ever-changing rules. It uses mind tricks to make it hard to concentrate before it trips you on the stairs. Then it kicks you, and then tells you it loves you. And when the menace has done its job and it’s gotten you to push your loved ones away, you find your child. And sitting with your dead child without distractions feels like air and love and peace.

I loathe the menace and its abusive ways; I appreciate the menace for guiding me back to Riley. For clearing the path, for creating space where I can sit with my boy uninterrupted and roll in the sadness, frustration, envy, disappointment, longing, rage, and blame. Once I punch through those, I find closeness, connection, tenderness, and love. So much love. I can almost feel Riley's hand in mine and the weight of his body in my lap. I can hear him talking about the SF Giants' lineup or humming while doing his homework. I can see snuggling his stuffed penguins and dripping hot sauce onto almost everything. And when I soak up moment, I can almost hear his voice saying, mom I love you, and I imagine pressing my nose into his hair and inhaling before and a smile spreads across my wet face.

This is the duality of grief. On the surface is the visible you that other people see and interact with. The you that people see can smile and talk and who enjoys making bagels and can be upbeat and look forward to running, hiking, or line dancing with friends or family. That you looks like a whole, nearly functioning person who has hard days once in a while, typically around anniversaries and birthdays.

The other you has the ever-present sidekick. It is always needling you, being demanding, rubbing interactions with guilt and longing, making sure that you are fully aware of your child's absence. That your child isn't at and never will be at the dinner table, in college, working at some job, have a significant other, or have children of their own. That they will never call or text or visit. And with its continual reminders of the absences, the menace is trying to stop you from enjoying your other children, your partner, the people who have loved you through all of it. So much energy is expended trying to keep the menace out of sight.

In both versions, you are missing something and feel incomplete and conflicted and guilty and sad. At least that’s what’s happening over here – grief is unique. And on this day, for me, on the other side of this invisible chasm, I’m trying to ignore the menace. I'm trying calculate how to balance how lucky I am with the grief. I have a great life, a great love, a great family. And yet... 

Both are true. The grief makes me feel ungrateful for what I do have. Enjoying what I have or being joyful in the moment makes me feel guilty.

I don’t know how to hold both yet. There isn’t one without the other. They are woven into an elaborate knot. Perhaps the problem is that I have an expectation that I should be able to untangle it. Maybe that’s not how this works. Maybe I need to make peace with the menace. To be okay that there is pain in the joy and love in the pain. To be okay with the menace making space for me to be with Riley (although it would be great if the menace could have less of a negative impact on my family).

After getting texts from my son and a call from my bonus son and breakfast in bed from my daughters (along with a homemade card), my heart felt full and empty, empty and full. Happy, sad. Guilty, angry. Alone, loved. Whole, broken. Broken, whole.

Grief and horizons

As we cross the Gulf Stream at the helm of our sailboat, I’m struck by the line between sky and water. It is a remarkably straight distinction between two worlds. It cuts across the distance in every direction. I hold the sight, concentrating so that eyes and brain come to an agreement to retain this view – it is special. 

Looking into the distance, my thoughts whisper out to it acknowledging that no matter how far we go toward it we will never reach this artificial line in the same way that you can never get to the end of the rainbow.

I swivel my head from left to right and as far as I can see, there is only this line, these shades of blue, this breeze petting my face or causing hair to whip around ears and into my eyes, depending. The uninterrupted line is like something drawn with a ruler in the distance. 

Many of us have seen a version of this – a slice of this separation – standing on a beach looking into the distance. But as we cross toward the Bahamas and the 360-degree view surrounds us for the first time, it feels like an important message from the universe. But I don't know what it is just yet.

Grief began driving us to upend our stationary life in California after Riley died in 2014. Last summer our plan was nearing fruition as we gave away most of our things and filled a tiny storage unit with sentimental items. Being on the water is the culmination of our years of planning, the beginning of our escaping, of running away. All of it promised to reduce grief's weight. 

Then we drove. And drove. And drove. First from California to Florida. Then from Florida to New York City. Then after three months in England, we drove from New York City back to Florida. 

Grief stayed the same.

If anything, being away from Riley's things, his bedroom, his clothes, his toys, his school, and the baseball fields he played on became a new, weighted layer of grief to manage. When we finally moved onto a boat in February, I thought settling into our new home would be the key to finally shifting grief. And at times, being away from the place where Riley died was a relief because I had the illusion of control – thinking I could decide when to let it pummel me. But the sadness continued to course through me without an appointment, just as heavy. 

I had been clinging to the hope that each step would allow grief to soften its jaw... Once we move out of our house. Once we drive across the country. Once we find a boat. Once we move onto our boat. 

But Riley’s absence, his death, his hospitalizations, his surgeries, are still ever-present. At the same time Riley’s smile, his laugh, his floppy hair, his nail-nibbling, his love of penguins – are equally real. The lists hurt my heart in different ways, but they both hurt. 

We've seen dolphins and sea turtles and flying fish and a sting ray glided its body over my toes. We've padded along soft sand and splashed in warm water. Grief continues to clamp its unrelenting jaw around me. Leaving Fort Lauderdale was my last once we. 

That realization has amplified everything. And when the hurt is bigger, like it has been in recent days, I pull away from the people I love who have run away and toward this sailing life with me. I retreat into a shell of unfixable sadness. And my hurt hurts all of us. I become short-tempered, brusque, erratic – a version of myself that I am not proud of. 

I'm hyper-aware of this privileged opportunity to run away. I'm also hyper-aware of how self-indulgent grief can feel. The world is full of tragedy, and yet the clay that shapes my being is my beautiful boy and his death. 

When the sadness is inside, it doesn’t matter how pretty the view is.

I can't help but try to make sense of this realization. Walking along the beach and seeing the storm clouds bubbling toward us, I know that no matter how far ones goes toward it, the horizon is always in the distance, always unreachable. And that line between sky and sea is an illusion. One rises above the other. Yet, the sky is full of water and the water is full of oxygen. They are connected through the water cycle and one will always be a part of the other. Like life and death. 

Riley is my past; he is my present. There are the experiences he had; there are the experiences he will never have. The past is full of possibility; the present is full of memories. Riley is here, Riley is gone. Riley is everywhere. Riley is nowhere. There will never be a Once we that provides a reprieve. Like the horizon, that idea was just an illusion. 

Take your platitudes and leave

There was an article in the NY Times yesterday about what not to say to a grieving person. It said never say, “Everything happens for a reason.” 

And that is good advice because when you say “everything happens for a reason” to a grieving person, they may want to punch you in the face. Because most people are polite, they will not punch you in the face, but don’t be surprised if you are kicked out of their inner circle of safe and trusted friends.

People said this to me shortly after Riley died. They also said this to me after Riley was born and we were told that he would need three heart surgeries to survive (though he ended up having six during his 11 years). Luckily for them, I restrained my fists. But it makes me wonder how this asinine phrase became a popular reply to grief. Please give me an example of when this has been useful. Seriously.

I imagine it comes from religion where we’re meant to put our faith in some greater power who has a master plan. And the only way we can make sense of a child’s death, or a young parent’s death or your house being swept away by a hurricane, or any other tragedy, is that it must serve some higher purpose.

But, honestly, life is random. We are powerless. And if we acknowledged this unspoken contract with the universe, we’d probably stay home more often. Because we get into metal boxes and move at high speeds on highways. We let our kids go to school. We know that people walking around are carrying guns. We know that there are contagious diseases. We live in earthquake zones or in places dubbed "Tornado Alley." We know that there are alligators and bears and bacteria that can overwhelm our immune systems. Every single day we don’t die is pretty astonishing. And getting to live another day is not because some higher power granted me the opportunity to do so because I am good or deserving. It is just luck. I think luck is too terrifying for most people to acknowledge.

So, what do you say when someone you love is faced with unimaginable tragedy? The article recommended: “I am so sorry for your loss. I don’t know how you feel, but I am here to help in any way I can.” Or something like: “I am always just a phone call away. I am here for you.” And, of course, if they are sharing with you how they are doing, validate their feelings. 

The article reminded me that I've been wanting to read Everything Happens for a Reason, and Other Lies I've Loved, by Kate Bowler.

If you are incapable of being there, of sitting with discomfort, of saying something less painful than "Everything happens for a reason," please, just take your platitudes and leave.

Grief and the ADAA

I just had a piece published on the Anxiety and Depression Association of America's website. They have a great library of personal stories that you can filter via disorder (anxiety, panic attacks, bipolar, grief, substance abuse, etc.), and I'm a huge believer in the power of connecting with others through stories. 

Over the years, I have been in individual therapy, and I've spent years in couples therapy. I spent a year in a support group for families who have children with congenital heart defects and three years in a support group for bereaved parents. (Just need to acknowledge how fortunate I am to have health insurance to cover chunks of the costs... access to this stuff should be a right, not a privilege.) And through all of it, I've learned a lot about self-care and supporting others who are struggling. 

It feels good to be reading. It feels good to be running. It feels good to be writing. It feels great to get published. Go forth and read!