Retreat and Renewal

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This week I had the opportunity to attend “Modern Loss”, a grief and expressive writing retreat at the Kripalu Center in the Berkshires.   For three days, I had the pleasure of connecting with 30-odd women, sisters from all walks of life traveling the same path through grief and loss.

What a privilege to have the time and space to escape into a space of self-care, personal development, and spiritual nourishment.  To talk openly about my experience to a multitude of understanding ears.  To share and open and feel a sense of normalcy in this bizarre and mind-altering world of bereavement.  I am fortunate to have been present in such an experience.

I had a realization recently.

I’ve been in survival mode for 4 years now.

In Spring of 2013, I drove my tin-can Hyundai Accent, loaded with plants and guitars, from Massachusetts to Madison.  Three weeks later, I was pregnant.  Carrying a deeply wanted but slightly unexpected baby in a new city a thousand miles from home.  Byron was born, and I experienced just what motherhood actually takes.  The sleep deprivation, the intensity of love and emotion, the loss of self, the hormonal shifts, the stress.  Then came Claira, and the readjustment to motherhood with a toddler and newborn.   Tim died when Claira was only 10 months old, and I truly went into *survival* mode.  My entire world and identity shifted in moments.  I lost everything.  All of my energy went into the care of my children and my own desperate attempt to stay afloat.

In the past months, I’ve acclimated my little family to our new home, new life, new rhythm and routine.  I’ve started to feel like I can breath again.  Like there is a sliver of time and space that could be reserved for caring for *me*.

So I’m going to follow this opportunity wherever it needs to go.

I’m not going to make this some sort of self-care-weightloss-fitness-super-widow type of blog.  I’m not interested in going in that direction with my writing.  But I would like to share that I am finally, FINALLY, in a space to better care for myself.  And I hope that makes me a better mother.  A better person for the world.  A healthier person.  For my kids, and for me.

For a long time, I was devoid of happiness and hope.  I was a brittle, bitter shell of a woman, filled with smoldering molten lead.  I was a hooked trout flopping helplessly on the shore.  I was a thunderstorm personified.  I was nothing.

I’m whole again, now.  A new person ready to take on this new life.  I want to move forward with intention, passion, and good health.  I have goals and visions for my future.  And I’m finally in the physical and mental space to take that on.  So I’m taking it on.   I’m looking forward to where this new path will take me.

In the words of Jack Byron: “Onwards and onwards.”

 

 

 

 

 

 

On Negotiating An Open Marriage With Your Dead Spouse.

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This one is a post I’ve been wanting to write for some time but have struggled to sit down and fully process.  I need to be open about something that I’m still working to get comfortable with.  Something I haven’t told a lot of people yet.  Something that’s complicated for me on every level.

You guys…

 

I’m…I’m dating.

 

*Hides face in irrational shame*

 

I know.  I KNOW.  I know you are happy for me, thank you.  In my rational brain I understand that this is the next natural step in moving forward as a solo person in the world.  I understand that I am a lovable human deserving of affection and respect.  I understand that I’m an adult woman capable of making my own decisions and creating my own future.  I intellectually know I’m not cheating on Tim.

 

But it’s still kind of weird.

 

I met Tim when I was 21.  A child, really. My brain wasn’t even fully developed at that point.  Which explains a few things. We were engaged when I was 25 and married when I was 26.  Our partnership was natural, organic, loving, respectful.  I grew into adulthood with Tim by my side.  For 12 years I shared his partnership.  People would express their admiration and awe at our love and I would smugly smile and say things like “well, marriage is a lot of work, but he’s worth it!”.  Because I thought I had it all figured out.

lol.

I didn’t really have to worry about dating.  I was set.  Two babies and a permanently pregnant looking gut?  It’s fine, I HAD my man already.  Tim and I loved each other as who we were.  We were ice-cream-on-the-couch-and-Netflix.  We were comfortable-love.

But the thing is, while we had a mutually respectful and monogamous marriage, non-monogamy was never a deal-breaker for us.  If one of us were to stray, we would stay together, or so we would discuss.  Our marriage meant more than the cultural construct of one-person-forever.  We recognized that we humans are subject to crushes and connections beyond the confines of legal union.  Yet, for 12 years, we remained committed only to one-another.

 

So when Tim died, I felt exposed.  Suddenly single against my will.  For the first year, I sat with that, the loneliness. Then summer came and I realized that, damnit…I’m still alive.  I want to feel connection again.  I want to have new men in my life.  Maybe I’ll even find love again.  Who knows?  The Universe is One. Zany. Fucker.

So, in early June, I got back on OKCupid.com, the same website I met Tim on, and I created a new profile.

It’s been a rollercoaster.  It’s not always pretty, this cesspool of desperate, lonely people tragically clawing for human connection (or, in many cases, just anonymous sex).  But there are some really good people out there.  And I’ve connected with a few of them.

I saw a man for a brief time this summer, when the stars aligned for us to come together for a bit.  We hung out.  I’ll let you fill in the gaps there.  It was fun.

I’ve been on a few dates.

I’m exploring what it means to be me, in this time, now.

It’s not easy.  I miss the comfort and ease I had with the Tim.  The routine and familiarity of our rhythms.  I miss cuddling him at night.  I miss our conversations.  I miss him.

But I’m looking forward to what is to come.

I’ve pulled back from online dating for the time being, to focus on myself, my health, building my business, re-establishing my career.

But I’m still open to love and connection.  (DO YOU HEAR THAT UNIVERSE?  I’M STILL OPEN.). Despite the depths of pain I have endured, I’m willing to open myself to new people and experiences.  Maybe one day I’ll meet my next soul-mate.  Maybe not.  I hope to have fun regardless.  Not get hurt too much.  To better know myself through the process.

We’ll see where this wild life leads.

Hopefully not to too much more pain…but who knows.

I’ve lived through worse.

 

 

What used to be “we”.

From the ages of 21-33 I constantly used the word “we”.  We would go on road trips. We would go see a show.  We would be watching a new series.  We would meet up with friends for dinner.  We were the parents of our children.  Together, in this “we”, we were a unit.  I had a Bread and Puppet print of a kitchen table with two bowls and two spoons and “We” printed in bold across the top.  Out unit made me feel strong, empowered, connected, safe.

For several months after Tim died I spoke in “we”s.  It was a hard habit to break after over a decade, the entirety of my adult life, operating as one half of a couple.  Often I might be including my children in that term, but I would find myself talking to new people and expressing myself as a married/coupled woman and not the singleton I have become.  Like when I was trying to flirt with a cute guy…and kept referring to my own life experiences in “we”…and not exactly getting the point I was trying to make across.  Mentally existing in a life that was no longer.

In the past months, I’ve become comfortable with “I”.  I bought a house.  I’m raising my children.  I set up the printer and the smart TV and the wifi speakers.  That would have never previously been a RoseAnna job.  I clean the house and do the cooking and take out the trash.  When a raccoon rips open the garbage bags and scatters the garbage all over the yard, I’m the one with the shovel, holding my breath writhing in disgust.  I make my own damn coffee every morning.  I take care of myself.

And there is power in that.  To be comfortable as an “I”.  To know that I am capable of providing for and raising my children.  Maintaining my home.  Paying my bills.  Caring for myself.

To be able to paint my porch a vibrant berry hue and buy area rugs without having to consult anyone about the matter.  To decorate as I wish.  To watch whatever I want on TV.  To make my own decisions.  To be an independent being.

And there is loneliness in that too.  A deep, endless longing for a connection I will never truly find again.  Because my “we” was with Tim.  And regardless of what directions my life may take, I will never come across another Tim.  I miss the depth of his intellect.  Our conversations.  Our patterns.  Our togetherness.

But I’m learning to appreciate the solitude.

This time to explore my own being independent of anyone else.  This aloneness that leaves me vulnerable, and gives me opportunity to grow in directions I may not have otherwise imagined.  The discomfort that forces me to discover my foundries and push the limits of what I perceive myself to be.

Tonight I was reminded of a song we used to listen to often, in the early years.  It about sums it all up.

It’s different now.  Being an I.  Being an independent being, drifting through time and space.  Being without my person.

But I’m a person.  And I’m still discovering who this person is.  And I’m enjoying this person I’m getting to know.  Because there is power in being just “I”, and I’m going to embrace that power.  Because, what I do know, is that I am powerful.

 

Happiness Reclaimed

 

There was a very long time in this second life that I truly doubted I would ever feel happy again.  Joy was elusive.  Contentment seemed like a dream of an experience I would never live again.  The bitter, broken, burned up remains of my heart and soul sat soaking in a pool of loss and resentment.  I was a shell of myself, empty, my innards piled  on the sidewalk for the whole world to see.  Happiness became something that only others could feels.

My friends…I’m feeling happy again.

There has been an internal shift in these past months.  With the move to my new home.  With the anniversaries behind us.  With the sunlight and garden soil and lake water and long evenings.  I have started to feel whole again.  To feel my strength and resilience as part of my core being.  To feel like this is a life worth living.

It started, at first, with a few moments of light that would peek through the fog.  Then those moments began to stretch and weave themselves into my existence until the days started feeling lighter and softer.  The flashbacks started to taper off, and I could go days, weeks without the tortured memories overtaking my consciousness.  I don’t have them much anymore.  I started to notice that I felt GOOD, and if a random someone asked me how I was, I no longer had to fake a presentable attitude.  My mind feels clearer.  I actually have hope, most of the time, enough of the time.

At some point in the process I read something from someone, that compared picking up the pieces of your life to a mosaic.  Your heart, soul, mind, body shatters into a millions little pieces and you must collect them back up again to survive.  So you have these shards filling your hands, and you begin to lay them down.  There is no way to put to put them back quite the way they were…so you create a mosaic.  And it’s different.  It may not be what you expected or wanted it to be, but it is beautiful and it is complete in it’s own ways.  It’s what is.

So, for me, at this point in the process, I’m good.

I’m figuring it out.

We’re going to be fine.  (And it’s a privilege to be able to say that.)

Summer Solstice

 

Once again, as every year, it has returned.  The longest day.  The light.

It always returns.

Summer Solstice is our annual celebration of the bounty the earth provides us, the light of the sun, the comforting cycles that bring us back to where we need to be.  Reflecting on this day last year, I was in a dark place.  The sunlight and boastful flower blooms were an offensive affront to the dark numbness that had eaten my core.  My overwhelming sadness.  The dark haze that consumed me.  I could not see the light.  I did not want to.

Today brings us back, one year later, and I have changed.  I am in a different time and place.  My sense of self and life and purpose slowly transitioning and emerging.  I can feel the sun now.  It feels good.

The week of the death anniversaries, I got sick.  A horrible head cold that settled deep in my chest and left me lethargic and miserable.  Then came a sudden pain in my shoulder, which migrated to my back, to my hip, to my foot, serving no purpose but a physical manifestation of the hurt I had carried stoically for the past year.  Then it subsided, and I began to emerge a changed person.  In the past weeks, I have felt happiness regularly.  I no longer experience flashbacks, self doubt, tortured thoughts of the trauma I survived.  My ideas for my future are becoming clearer.  I can breath again.

Today, on the Solstice, I drove my kids to the Montshire Museum of Science 1.5 hours away.  We played in the exhibits and stopped for treats at the King Arthur Flour Bakery.  We stopped at my parents on the way home and filled my grandmother’s mixing bowl with berries from my father’s garden.  Tomorrow I will attend a much anticipated music show at my friend’s barn venue.

I’m living my life.  Moving forward with hope and intention.  I don’t feel guilty for feeling good, I just feel good.  There are times of sadness…many.  But not as many as there were.  Because I’m healing and growing and transforming.  I’m capable of joy.  I deserve happiness.

I’m getting there.

 

 

 

Sad Salad for Singles!

 

I had a realization the other day.  I have a large garden that will soon be full of rich, beautiful vegetables, and unfortunately nobody’s going to god damned eat it but ME.

I met Tim when I was 21 years old, and we moved in together a year later, where we lived in a dilapidated two bedroom apartment with Tim’s brother and best friend.  I went directly from dorm dining hall lines to family dinners.  So living on my own, as a single Mama with young kiddos, has been an adjustment in the kitchen.  Despite the pureed kale and flavorful curries I fed my babies, I now have two picky eaters who are hell-bent on surviving off of turkey hot dogs and peanut butter jelly sandwiches…so when it comes to home cooked meals, I’m on my own.

I need to properly fuel this hardworking body.  I deserve that much.  So I’ve developed a method for eating salads perfectly designed for sad single people.  Here your have it:

Sad Salad for Singles

Vegetables

Proteins/Legumes

Maple Mustard Vinaigrette

Go out to your garden.  Pick some lettuce.  Feel the muddy soil beneath your feet and breath in the life-giving aromas of earth and growth and sunlight.  Or just tear open a bag from the store.  Whatever.  You do you.

Get a bunch of veggies.  Carrots, beets, onions, avocado, cucumber, sprouts, whatever you have around.  Finely slice or grate.  I keep a bag of root vegetables in my fridge and just shave off whatever I want with my cheese grater.  Put in half an avocado.  Scratch that, you put in the WHOLE AVOCADO, sweetheart, YOU ARE WORTH IT.  Dump in some olives.  Or not.  Fresh herbs are good too.  This is your salad and I’m not here to tell you what to do.

Add some other stuff.  Like chickpeas.  Or leftover hand-breaded-oven-fried chicken tenders that your four year old turned his nose up over last night even though you birthed him without an epidural and breastfed him for two fucking years of your life.  Cool.  Whatever works for you.

Mix in some salad dressing.  Here’s the recipe:

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Maple Mustard Vinaigrette

3/4 cup decent enough olive oil

1/4 cup Apple Cider Vinegar

2 Tablespoons Maple Syrup

2 Tablespoons Stone ground or Dijon Mustard

1/2 teaspoon garlic powder

Salt and Pepper

Pour in a mason jar.  Shake.  Now you have salad dressing.

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Put all your stuff in a big, fancy salad bowl.  The kind you use to serve salad at dinner parties.  Mix it all up with a fork.  Sit down at your table.  Just bring the bowl and the fork and some water or whatever, that’s all you need.  No need to dirty another dish, honey.  You rest.

Pull out a magazine about mindfulness or yoga or whatever makes you feel better about yourself.

Don’t look at your phone.  Do. Not. Look. At. Your. Phone.  Your phone will not fill the void.

No, you didn’t get any messages.

Dontlookatyourphonedontlookatyourphoneyourphonewillnotfillthevoiddontlookatit.

Eat your salad.

 

You did good, Honeybear.

 

 

 

 

Celebrations

 

June is Wedding Month.  And Tim’s birthday month.  It’s the month that the garden sowed in early May blooms with verdant, tender leaves and tendrils emerging from the soil and spreading into the freedom of space and light.  It’s the month we transition into summer life and celebrate the light of the longest days.  It’s a time of fullness, vitality, warmth.

I had the pleasure of attending a dear friend’s wedding in Provincetown, MA this week.  After 20 year of commitment and love, he and his partner decided to marry in a festive and fancy Tuesday soiree. I had agreed to do the table decor two weeks prior, and drove down on Sunday with an SUV full of 55 potted purple annuals and rolls of burlap.

Monday, June 11th would have been Tim’s 36th birthday.  I woke in the hotel room I shared with a good friend at a reasonable hour, on my own internal clock.  I walked the mile into town and drank a strong latte in a quiet cafe, before the other revelers and vacationers had emerged from their vacation rentals.  I journaled and doodled, listening to music, watching people, feeling Tim’s energy.  I ate a cannabis edible.  Because that’s what Tim would have done.  I walked through town and explored side streets.  I drove with my windows down and music blaring.  To nearby beaches and wandered the shore, picking colorful rocks from the waves and fixing my eyes  on the horizon in quiet meditation.  What Tim would have done.  I treated myself to brunch.  I found quiet places to read.  I bought myself a few trinkets and a small piece of art.  I took the day minute by minute, letting whatever needed to unfold unfold.  I celebrated Tim, his spirit and energy around me, through the things he would have wanted to do had he been by my side.

I felt happy.  Full.  Warm.

At the wedding ceremony the next day, through thoughtful readings on love and fanciful purple suits, I cried.  Because I felt the love in that room.  Of the men marrying.  From the people around them.  I felt what I had felt on my own wedding day, and remembered the years of careful work and commitment we had put into our partnership.  I cried for my own loss.  I cried for the beauty of the moment.  I sat in awe of the loving energy that existed in the room.

Through the 8 course luncheon (with wine pairings.  FULL wine pairings) I conversed and laughed and relished the joy and community of the moment.  We drunkenly promenaded with purple pashminas and heart shapes umbrellas.  We posed for pictures on the water.

That evening, despite my desire to stagger back to my hotel bed, I switched to water and went out with a group of old and new friends.  And for the first time in a very long time, I felt alive.  I felt connected.  And I had a lot of fun.  A. Lot. Of. Fun.  And today, back in the reality of my every day, I feel deep gratitude.  For connection.  For love.  For friendship.  For the ocean.  For joy.

 

Tim would have loved it.

I lived it for him. I lived it for me.

Hopewell House

 

It’s been a difficult time, these weeks, months.  This year.  There has been a lot of pain, hardship, anger, uncertainty.  There was been countless moments that I felt on the brink of collapse, bewildered by this life and how it all came to this.  Angry at the Universe for leaving us here, stranded on the island of grief.  At a loss as to how I could possibly move forward from here.

I found a foothold, though.  In some small capacity, I have found a way toward the future.

I call it Hopewell House.

Tim and I always dreamed of homeownership.  After twelve years, seven apartments, four cities, two cats, two babies, we dreamed of the day that we would find our home.  A house that we would buy, set up, live in, celebrate.  A farmhouse, we dreamed, with a few acres of land.  Tim wanted to be able to see the night sky in it’s glory.  I wanted a real garden to tend.  Something we could fix up together, make our own.  We wanted room for our children to run and roam the outdoors.  A space in the world to call ours.

When Tim died, I immediately started scouring real estate listings.  In my core, I needed to find a place for my children.  A safe space to shelter and raise them amongst the fallout and chaos of death.  We moved in with my parents, a safe and loving triage, but I needed to find my space to re-begin.  In October I started working with my realtor, but I knew finding the right home would take time.  I wanted a vintage home.  Something with character and history, but as a solo parent I needed to be practical about what kind of house I would take on while caring for young children.  So it took time.

In February, the day before I was to take my kids on our first plane ride, just the three of us, my realtor, John, emailed me.  A new listing, he said, he wondered if I had seen it.  It was the first day in months that I was not obsessively looking at Realestate, so I clicked on the link.  It was perfect.

He scheduled a showing for that evening.  I put an offer down that night, driving to his office at 8:30pm to fill out the paperwork my computer refused to process.  The next day, while driving through Tampa, I negotiated the counter offer over bluetooth.  Two months later, we closed.  It’s mine now.

Hopewell House was built in 1915 in a neighborhood developed by the manufacturing factory that once employed the majority of this border village.  It’s on a quiet street where children play and ride their bikes freely.  It has a small lot with a large garden and minimal grass to mow.  It was owned by the same family for over five decades, a widow and her second husband.  It was cared for with love and thoughtfulness.  It was tastefully renovated and modernized in the months before I bought it.  I named it the day I closed on it.  It’s beyond what I ever imagined my home could be.

We are settling in to our new life here.  There are challenges that arise. Raising young children alone is an exhausting and challenging task, but I’m doing it.  The kids love their rooms, their garden, and the wooded area in the adjoining lot.  We have friendly, caring neighbors, large windows with ample sunlight.  There’s a mantle for Tim’s urn, amethyst crystal, and photographs.  Shelves for his journals and books.  A master suit for me to seek refuge in at the end of the day.  There is room for all of us to grow and flourish as time moves on.  There is a future here.

It’s a bittersweet thing, to buy a house on your own.  To unpack the belongings of a soul-mate who is no longer.  To set up a home for three.  But it’s a good thing too.

Onwards.

Starstuff

 

 

On May 23rd, 2017, we removed Tim from life support.

The previous day had been a tough one.  Tim’s family wanted to remove him sooner, to release his soul from his body, as per his parent’s spiritual beliefs.  I wanted Tim’s friends to have the opportunity to come say goodbye in person.  He had been an empty shell for a week already, there was no reason to rush the process.  They asked for a priest to come, which I was fine with.  The priest could not come until late though, almost 7pm, and I refused to remove him from the ventilator that late in the day, knowing how long the process could take.  We had a tough conversation in the waiting room, our home for the past week.  A loud conversation (that’s on me), that made the others in the vicinity scatter awkwardly.  Arguing over death in a public place.  Add that to your bucket list.

I insisted on waiting.  I demanded that everyone go home.  Shower.  Eat.  Rest.  Come back first the the next morning properly dressed and ready to give Tim the presence and energy he deserved in his final hours.  They agreed.

We gathered at 7:30am outside Tim’s hospital room.  Tim’s parents, brother, sister, and myself.  I instructed everyone to go in, one by one, to say our final goodbyes in private.  I kissed his cheeks and forehead and brushed his hair with my fingers.  I laid on his chest and felt his body rise with each mechanical breath.  I told him how much I loved him.  I promised him I would take care of our babies.  Raise them the way we had planned to do together.  I’ve kept my promise.

The hospice team entered the room and we gathered around Tim in a circle.  They removed his intubation tube as we stroked his skin and spoke words of comfort and love.    We told his it was ok to go.  That we would be ok.  He had permission to leave.

And then we waited.

I put on music, Aimee Mann’s “Mental Illness” album to begin with.  We had been listening to that a few days before the heart attack, he had been enjoyed it.  Tim’s grandmother and aunt arrived, and we sat and talked.  Then friends started to arrive, his best friend with her partner and baby had driven through the night.  Friends of mine from college and high school.  Tim’s dear friends from college and grad school.  They came in groups, in waves.  They brought beer and bourbon and cupcakes.  An old friend of mine who lived nearby sent boxes of sandwiches and snacks from Panera.  On Tim’s last day, we had a party.

We sat and stood, the room bustling with energy.  We cried and laughed and shared our stories and memories as Tim’s chest rose and fell in the center.  We drank and ate and had exactly the kind of gathering Tim loved to be a part of.  Intimate, loving, supportive.

In the morning, I swabbed Tim’s mouth with good coffee.  In the afternoon, I swabbed a hoppy IPA.  I rubbed essential oils on his neck and massaged his hands.  I laid amethyst crystals on his chest and tucked Claira’s stuffed bunny under his arm.  We played the music he loved, Bouncing Souls, Bruce Springsteen, Conner Oberst, Bright Eyes.  This was his day.

In the mid-afternoon, the room quieted.  Friends had left, or stepped out for a break.  His parents had gone downstairs to get coffee and respite.  His uncle sat on one side of him, his sister stood at the other, holding his hand.  Bright Eye’s “Cleanse Song” played over the speaker at his ear. I heard a long breath release from Tim’s lungs.  I stood, went to his side, cradled his head in my hands.  One last breath, short, puffed from his mouth.  Then nothing.  I laid my hand on his chest and felt it’s stillness.  Then the hospice nurse appeared from beyond the curtain.  We locked eyes.  She nodded gently.

He was gone.

A cry tumbled out of my belly.  Then the room erupted in sobs.  His friends and parents rushed in and encircled him in love.  A dear friend had missed him by just seconds.  We touched his body, kissed him face and hands, and felt the last of his warmth while it still lingered.

We could have two hours with him.  After that, he needed to be moved.  He was an organ donor, and while his organs were damaged beyond use, his skin, tissue, nerves, arteries, and corneas would provide precious use to hundreds of others.  I asked a college friend of his to pour shots.  He was a bourbon man.  We toasted him.  I played a singing bowl over his body to clear the energy from the room.

I sat to fill out the death paperwork and realized I could no longer read or write.  His aunt wrote in the information for me.  I packed up a box of the belongings, cards, gifts that had accumulated in the past 8 days.  I gave him one last kiss, his cheeks cool now.  I stepped out of his room, down the hall, I thanked the nurses, we filed the paperwork.  My friend, Adam, hailed a cab on 1st Ave, and for the last time, we drove away from Tisch NYU.  From Tim.

__________________________________________________________________

That night, and in the following days, I was held up by the love and support of my friends, chosen family, who supported me in the post-loss haze.  I was driven from Brooklyn to Northampton to Vermont.  I was fed and cared for and loved.  I told 3 year old Byron that his father was dead on the front porch of my parent’s house.  Then had to explain what exactly that meant.  I flew to Madison to pack up our life and drove 1000 miles with Matt in a moving truck, back to Vermont.  In the past year I’ve slowly worked to re-establish my life.  My personhood.  My being.  I’m still working on it.

 

Tim was a person.  He was a good man.  Better than many.  He loved people.  He was an incredible father.  He was altruistic.  He was a loving partner.  He was brilliant.  He loved peanut butter cup ice cream and pizza.  He really annoying about doing the dishes.  He loved football and punk music and Quantum Physics.  He loved bird watching and identifying rocks and minerals without any actual knowledge of what kind of rock it actually was.  He loved riding his bike but rarely did so. He loved sitting at a bar on a quiet afternoon and writing poems and thoughts and doodles. and mathematical equations in his journals.  He loved being around people and staying out late.  He loved Bernie Sanders.  He loved backpacks and hats and graphic tees.  He was all at once an intellectual and an every-man.

He was far more than I could ever try to describe.  But I will spend the rest of my life remembering him and loving him and making sure others do the same.

 

Decisions.

As soon as I walked into the doors of Tisch NYU, I knew that Tim was in good hands.  His nurses greeted me at the entrance of the room before he even arrived.  They hugged me. They called me a hero (I’m not sure I am, but it was nice).  For a little while, they made me feel like everything might be ok.  I told them who I was.   A visibly pregnant one instinctively touched her round belly when I told them the ages of my children.  For the next week, we were all cared for by a compassionate, caring, and highly skilled team of professionals.  Tim received the best care we could have possibly asked for.

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One thing that Tim identified most strongly with was his intellect.  Not in a boastful or arrogant sort of way, but in his passions, his communication, his interests.  Tim was a man who would stay up late watching academics solve complex math equations over YouTube.  He read dense scientific studies for fun.  He was a physicist, a philosopher, a poet.  He expressed himself through complex, rambling writings about the nature of time and space.  Any political conversation could turn into an intense and in-depth debate.  His brain would turn on at 1am, as he sat in bed, keeping me awake with deep philosophical rabbit holes he eagerly explored.  Tim was brilliant.  In the words of a friend, his brain was a “national treasure”.  He was a literal genius.

 

In my own work as a music therapist, I have worked with people throughout the neurological spectrum.  My work with people with profound developmental disabilities, catastrophic brain injuries, late stage Alzheimers, would send me home with questions about the nature of life.  What is life?  What makes a life worth living?  Saving?  Where is the threshold we cross that changes this?  Who can make such a judgement?  How do we make these choices for fellow human beings?  How can we not?

Tim always feared dementia.  He often expressed paranoia around the concussions he sustained as a young football star.  He didn’t want to loose his cognitive functioning.  He didn’t want to become a shell of who he was.  He expressed on several occasions that suicide, physician assisted or otherwise, was what he would want in such a situation.  Decades from now.  When we were to be old together.  If it ever came to that.

So in that week he spent in the in-between, I needed to know about his brain.  I needed to know if the interventions and surgeries, the pain and suffering on his part, were worth it.  I needed to know if Tim was still in there…because I suspected he was not.

But the thing with Grey Matter is that it leaves so much grey area.  Because how damaged must a brain be to deem it unsalvageable?  At what point can we determine that a life is no longer worth saving?  How could we know what the outcome would be?  What if Tim made it…but lost himself, everything that he was, in the process?  What if he came back a deeply damaged, but very much alive, human being?

Would he want to live?  (Would I want to see him live like that?)

 

I thought about these things incessantly.  Because, as his wife, I had to make the choices around these things if he could not.

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Tim’s neurologist, Dr. Aaron Lord (quite the name), was a competent, kind, and highly direct man.  On our first meeting, he asked me about Tim and I’s spiritual beliefs and what we believed happened after death.  I regaled him with our Secular Humanism and wonder with the Universe, thrilled to be able to share our belief system with someone who cared.  He was feeling me out.

I watched him closely when he performed his status checks on Tim.  For any signs of change.  Of progress.  Any indication that Tim could possibly reemerge.  I watched his eyes in the glances he would give his assistant.  I would watch for him the the hallways and jump to attention the moment he came into my presence.  He was the man who would hold the most important pieces of this puzzle.

 

Tim’s body was incredibly sick.  His liver and kidneys were failing.  He was on 24/7 dialysis and his skin was a putrid shade of yellow.  A mechanical implant worked on behalf of half-dead heart muscle, the aftermath of a 100% blockage of his LAD.  (He would have been THRILLED to know he had become part cyborg.)  Even on his best days he was touch-and-go.  So it took him until May 21st to be healthy enough to be unhooked long enough to get an MRI.

I had originally planned to send my parents home with my children that day, to get the kids out of the city, to give me some more space to be with Tim.  We woke up that morning and I changed my mind.  I might need them close after all.  I went to the hospital during the morning rush hour.  It was Sunday, and unlike the previous mornings the train was quiet.  I went to Tim’s room first thing, as usual, to talk to him, give him hugs and kisses, to check in with his staff.  They were confident that he would be able to get the MRI that day, they said.  He would go in as soon as he could.  We would get our results in a few short hours.

So we waited.  I colored in the coloring books friends had sent me.  I paced the halls and walked in circles.  I sat with the family in the same corner of the small waiting room we had claimed as our own.  Friends came to visit.  We waited some more.

Tim was brought back from surgery to re-implant his heart device, and I went into his room to turn his music back on and greet him.  I stood in the corner, overwhelmed, nervous, fumbling with the phone, when the Cardiologist came in.  Dr. Zackarey with his kind, wet eyes, and permanently somber expression.  I broke down when I saw him appear next to me.  He took my arm, and gently asked me to come to the conference room.

We gathered with Tim’s team.  His mother, father, sister, brother, and myself.  Dr. Zackarey and and Dr. Lord.

Dr. Lord opened the conversation immediately, ” We have gathered in the conference room, so I know that you all know this is a difficult conversation.  Tim’s cortex is profoundly damaged.  If he were to live, he would live in a vegetative state.”

A moan rose out of my belly and filled my head with sound.  My entire body went numb. I doubled over in pain.  Tim’s mother started to cry, and I covered my ears to block the noise, her pain being overwhelming to me in that moment.  She asked if anything could be done, the question a mother must ask, and I snapped at her.  Because I was terrified of  the weight of this decision.  The consequences of this decision.  The people I had seen in nursing home beds for decades of their lives.  The human shells of people that had been, before their accidents, their stokes, their heart attacks.

The things that happen to people.

The things Tim never wanted to happen to him.  

 

But the prognosis was clear.  Tim’s beautiful, brilliant brain was gone.

 

And so on May 21st 2017, I made the most difficult decision I hope I ever have to face.

 

I made the choice to allow Tim’s life to end.

 

 

 

His family understood.  They agreed.  Because they knew him too.

So they went into the waiting room to tell the loved ones who had gathered.  And I went to see Tim.

I walked into the room to see a circle of residents surrounding Tim’s bed.  The looked up in surprise, then sympathy.  “Do you have any questions?” the attending asked me gently.

“What are the laws here?  Around death.”  I was flat and cold.

“I’m not sure I understand.  You can remove your husband from life support and we will do everything we can to keep him comfortable in the process.”

“So you can’t just help him die?  I don’t understand why I can put my fucking dog down but I can’t put down my husband.”  A dark, brittle laugh came out of my throat.  Because I was hurting so deeply.  Because the whole situation was so fucked up.  Because I didn’t want Tim to suffer in any way.  I wanted to make everyone as uncomfortable as I was, and I just couldn’t keep it together any longer.  And then I started to sob.  The residents quietly filed past me, expressing their condolences with their eyes.  The attending hugged me close and said “We will do everything we can do to keep him comfortable.”

 

I walked out to the lobby, to the loved ones waiting, and told everyone I was getting the fuck out of the hospital.  We would give Tim a couple days, so people could say goodbye.  (In retrospect, I would have given him longer.  There were so many people who wanted to say goodbye.) and my dear friend, Molly came with me for a walk.

When Tim and I were younger and living in the Boston area, we went to New York regularly, every 8 weeks or so.  One place we loved to visit with friends was a rice pudding shop in SoHo.  So Molly and I stepped out into the brilliant May sunlight, and I decided to get myself some fucking rice pudding.

So we started to walk.  Down the East River, past middle aged men smoking pot on a bench, past bicyclists and runners and dog walkers.  Across a footbridge and past a mother yelling at her toddler.  Past friends playing basketball and couples drinking wine, and couples making out and couples arguing in public.  Past murals and billboards and overflowing trash-cans.  Down St. Mark Place where we had bought a mango wood vase for my mom that smelled like woodsmoke.  Past wig shops and beauty parlors, and around a corner where my mom and best friend Matt were waiting for me.

And we got some rice pudding, and brought it home to Brooklyn.

And I hugged my babies with all the love in my heart.

And I realized that life was just going on.  On the worst day of my life.  The worst decision I could possibly have to make. Life was just going on.  And everyone else out there in the world was having a day too.  And the sun was shining and the weather was nice.  And maybe it was a great day, or maybe it was even worse than mine, but everyone was just out there.  Living their life.  Because that’s all you do until the day you die.  You just live.  All together, billions of us on this little planet in an infinite Universe.  And I realized that, there, on that worst day, Tim’s life was coming to and end.  And my life was coming to an end.  But he was going to die, but I would have to live.

And so, on May 21st, I remind myself that I am still here to live.  I choose that.