#SOL16: What Makes a Life Worth Living?

I was searching for a vocabulary with which to make sense of death, to find a way to begin defining myself and inching forward again. 

Paul Kalanithi, 2016, When Breath Became Air, p. 147.

I.

An important question that emerges alongside the diagnosis and spread of cancer is: What makes a life worth living? Faced with imminent death, the question takes on significant dimensions. Yet, it is a question not limited to the cancer patient only. Family and close friends also struggle to answer this question as well.

What makes a life worth living? What do we most value?  

For late stage cancer patients, like Rob, for whom no cure existed there is a dynamic that emerges as the illness progresses that alters responses to those questions. There is no single consistent answer. Across the last six months of Rob's life we each grappled with this question and I witnessed the enormous struggle he waged as he edged towards death. Facing death when he had fought so hard to live required a courage I had never seen.

There's an appointment I must keep, he told me a week or two before he died. I can't recall what it is.

I'm dying, Mary Ann. I'm dying, he said to me with such acceptance that I just rested my head on his bed and cried.

The combination of the surprising stage 4 lung cancer diagnosis we learned this past September and the immense and constant pain from metastasized spinal lesions and then the spread of cancer across the entire right side of his body shifted our priorities--invited us to look past what we once felt was important, and allowed us to rest our eyes more on the goodness we have sent and wanted to send into this world.

We are what we give. I learned that watching my husband die. So much of what we accumulated in our 28 years together was more burden than beauty by Rob's end.

II.

Now that Rob has died, answering the question, What makes a life worth living? nags at me--demands my attention. Why am I here?  

A life worth living is connected to the quality and quantity of goodness we produce, the brilliance with which we live our lives, and all of this is complicated by the often difficult understanding that conjuring a memory of my past life as a substitute for the new life I must now compose will not work. Such acts dishonor each of us. Wanting a life that cannot be had is not an answer to what makes life worth living for it denies life, and keeps me from embracing the ambiguity of what might be made.

So what am I seeking? What life is worth living?

I want to live well by giving more to others, using the handful of gifts and talents I have to do good acts. I want to be a terrific mom to Devon--to champion him and support his dreams.  I want to be a loving sister to my brothers. I want to love fully.

Mostly though, I want to honor my husband and the love we share by living deliberately. He'd celebrate that.

#SOL16: My Brother's Promise

Jack standing beside Rob (2016)

My older brother, Jack, tells me that 2 months ago Rob talked to him while he was visiting him at the hospital. He asked him to take care of Devon and me after he was gone.

You'll take care of them? I figure you can all live together.

I was surprised to learn of the conversation. But now, I realize how very much this conversation represents these two men. They both love deeply. Later, Jack is beside Rob and I hear the end of a conversation he is having with him.

We'll take care of Mary and Dev. You don't have to worry about that. You can go. Let go, Let God, brother. Jack says this as he clasps Rob's left hand between his, standing alongside the hospital bed a few days before Rob died.

#SOL16: A Broken Toilet

Rob at home, late November, 2015.

We were so hopeful.

Tonight I read one of the notebooks Rob kept right after he was diagnosed through the end of December. In this notebook he chronicled the medications he took and the time of day, his daily vitals, any procedures he had scheduled for the day, fentynal patches and when they needed to be changed, physical problems he was experiencing, where he was physically (at home, hospital), people who were visiting, and every now and then a few notes about things he wanted to remember and things he thought were important. Each entry was dated.

As I read, I noticed that Rob remained hopeful until his capacity to walk was threatened. The breaking point happened early one winter morning when he fell into a toilet, breaking it. It was three days before Christmas and I recalled grabbing him to to break his fall, checking him and then getting him up and back in the transport chair before I wheeled him out of the room. I then turned off the water and made sure he was okay again. I cleaned him up with new clothes and resettled him in the living room. And then I returned to the bathroom to clean the floor. It was just a few minutes after 6 a.m. I can't recall who called the plumber, but I'm guessing it was Rob. By 8:30 a.m. we had a new toilet and the name of a handyman who I then phoned. He came to our house the next morning to install a handicap bar in the bathroom and refused to accept any money because his wife was battling breast cancer and he knew.

And even though I thought I had done a good job of reassuring Rob who was both embarrassed and scared, I read tonight that he was most worried about me. "Mary Ann has to do things she should never have to do. I can't even clean myself up. I tried and almost fell again. I need her help for everything."


What neither of us spoke about was that Rob's capacity to stand and support his weight using his right leg was getting progressively worse.  So worse that in a week he would no longer be able to stand. What we didn't know was that he would never stand again. He would never walk again and this incapacity would return him to the hospital on December 30 for a three week stay in the Intensive Care Unit followed by a week on a post surgery floor, 9 days in rehab and then back to hospital with another staph infection flowing through him.

My husband left home the morning of December 30, 2015 and would not return home for 50 more days. When he finally did come home in mid-February, it would be to die.

We were so hopeful, once.

#SOL16: Confession

Late Day (2016) 

The surgeon always begins a Whipple by inserting a small camera through a tiny incision to look for metastases, as widespread cancer renders the operation useless and causes its cancellation. Standing there, waiting in the OR with a nine-hour surgery stretching out before her, Mari had a whisper of a thought: I’m so tired—please God, let there be mets . There were. The patient was sewn back up, the procedure called off. First came relief, then a gnawing, deepening shame. Mari burst out of the OR, where, needing a confessor, and I became one. --Paul Kalanithi, 2016, p. 66, Where Breath Becomes Air.

I'm reading Paul Kalanithi's stunning memoir, Where Breath Becomes Air--a book he wrote as he was dying from lung cancer. Kalanithi was a neurosurgeon. What strikes me is how human the resident, Mari is portrayed and how angry I am nonetheless at her selfishness for the body on that table could have been my husband's. And I wonder about my outrage. Why is it the Mari's selfishness so infuriates me? Why does this resonate so?

And within a minute I am recalling the tiredness I felt while caring for Rob and I feel a certain paralysis seize me and I can't turn away from a remembrance of a morning a week or so before Rob died. That morning dogs my every step.

I had been up with him for almost 72 hours straight. I was supposed to have been able to sleep finally after hiring an aide who was going to take care of Rob that night. I woke up when the aide came running into the bedroom screaming about blood. I had only been to sleep for about 40 minutes. I ran downstairs and saw that Rob had pulled the catheter from himself and there was blood, his blood on the sheets. I quickly called a hospice nurse who arrived at the house at 3 a.m. to replace it. The next  day the catheter would need to be removed because of blood clotting and it is the next morning that I need most to write about. That morning Rob is lying in the hospital bed in a diaper unable to get up and continually asking me nonetheless to help him walk to a chair as he keeps forgetting that he can no longer stand, let alone walk and I am the one who has to keep crushing him by telling him he cannot do this anymore--he cannot stand up. And into this mess that morning I am sobbing with my head resting on my folded arms atop his bed and Devon is off to school driven by a neighbor I think or a friend and Rob's mother is upstairs still asleep and I whisper to my husband, I need you to die. I can't take this anymore. I'm so damn exhausted.

And my beautiful husband looks at me and just frowns.
It is the saddest frown I have ever seen--a look I recall daily, on the hour, now.

And in that moment, I know I am the worse human on the planet--more monster than wife. Who would further harm a dying man? My words are a betrayal of love. I immediately tell him that I did not mean what I said, that I was just so tired, so exhausted. I feel such hopelessness. Time has ceased to function in ways that are familiar and my capacity to reason is so diminished, but none of this today excuses my awful words or soothes the deep regret I hold.

I want to think Rob forgave me for this, but I truly don't know. Since he died, I have returned to walking. Each day I walk. I do this in memory of my husband who died unable to walk. I do this in the hope of finding some small measure of grace.

#SOL16: You Both Kicked Off Your Shoes

Rob and me -- picture made by Devon

One weekend morning, Rob was driving and I was seated in the front seat next to him and all around us there was abundant sunshine and heat and hope. The windows were down, the roof window cracked open and though I cannot recall where we might have been headed--if in fact there was a destination--I do recall we were singing out loud and laughing especially when we realized that now and then we did not know the actual words we needed to sing.

And perhaps this is what it means to be in love.  To sing with little thought as to the quality of voice--to sing for the shear joy of it, assured in the rightness of the world.

That morning it was Don McLean's "American Pie" we were belting out, taking turns with the verses and joining together to sing the chorus. And when I sang,

Well, I know that you're in love with him 

`cause I saw you dancin' in the gym.

You both kicked off your shoes.

Man, I dig those rhythm and blues. 

We each kicked off our shoes and sang louder.

We were young. We were foolish, barefoot and so very certain in that moment that nothing bad could befall us. Nothing, certainly.
Not then.
We were invincible.

#SOL16: Friendship

Today I phoned Patty.

Our friendship stretches all the way back to when we were 5 years old. I haven't spoken with her in at least two years. We're like that. I live here on the east coast and she lives in Michigan. Time will go by and then one of us picks up the phone and calls the other and we talk for hours as if the space of time that happened in between calls was something we could easily bridge given our shared history.

This time I picked up the phone.  Today is her birthday.

Patty and I at 17. 

I have been dreading calling her as she knew nothing about Rob's illness and death and somehow I felt that having to say he had died out loud to her would make Rob's death feel even more real. I was afraid I wouldn't be able to talk.

I also worried that something bad might have happened to her, her husband or son during these last two years. Before Rob's diagnosis and death, I didn't think catastrophic things happened so quickly. Now, I know they do and can happen to good, good people.

This morning it just felt right to call her and so I did. I didn't reach her so I left a message wishing her a happy birthday and about 30 minutes later she returned a call to me and we talked for the next hour. I told her about Rob and all that had happened in the last few months. I was relieved to know that she and her family are doing well.

I see now that there's a reason we have remained such good friends. It has little to do with time and far more to do with shared intimacies. There are things we know about one another--things we have confided to each other--things that have happened when we were children and teenagers and these confidences we have kept allow us to understand love in fundamental and yet profound ways. After speaking with her, crying about Rob, laughing with her about Rob--stories she remembers--I felt better.

I love her.  Sometimes it is that simple.

#SOL16: A Son and the Word of God

The New Fire Truck 

I.

When I think of the many ways that Rob loved his son, I am reminded of a line from Cormac McCarthy's The Road. At the beginning of the novel, the father is speaking about his son and says, "He knew only that his child was his warrant. He said: If he is not the word of God God never spoke."

The word of God. Yes, that is how complete and full Rob's love for Devon was. But now and again I wonder if Devon will really remember his dad.  He is just 17. Will he be able to still hear the sound of his dad's voice? Will he recall the many car trips? Will he recall watching each episode of Stars Wars with him multiple times save the most recent one that his dad could not see? Will he remember how his dad smelled? How he walked? The sound of his laugh? The way he ran his hands through his loose hair gathering the strands into a pony tale? How he looked you in the eyes so directly when you spoke?

My mom and me

What memories will remain after a year?
Ten years?
Forty years?
What will he most remember about his Dad?

II.

On the bureau in our bedroom is a photograph of my mom and me. I am most likely 12, just a few years younger than Devon is now.  When I look at the photo, I realize that I can't recall much of anything from that time--and certainly nothing related to how I was feeling or the way my mom was. That time is quite lost. I'm astounded by what I can't recall. Viewing the image has me wondering how much of the time Dev spent with his dad will he really remember as the decades march by.

#SOL16: After Pennsylvania

Dreaming of Horses Running (M.A. Reilly, 2009)

Below is a poem Rob wrote for me years ago.  He found it again this past December and gave it to me on our 25th wedding anniversary.  A friend recently said to me, you and Rob had such a love story. And she's right we did.

Here's the poem he wrote. I want to share the work, our love, his poem to me and preserve all of that somehow--here in this digital wonderland.

I love you, Rob. No words of mine can capture that quite right. Your words however... 

After Pennsylvania

(for MaryAnn

Shrouded in the deep serenity

of meditative hills

where the music

of winter winds

covers the silence

& I wait

for the future

is a rose

born

of just this moment

(it unfolds

even as I speak

each petal

wraps

a memory

& falls across faraway days

where 2 horses

nuzzle:

the brown male nibbles gently

at her white ear

the other side of the fence

her careful eyes lidded white

& I remember the look of you

when you showed me

how you sat

on the counter in your kitchen

& stared down the road

prayerful

I would be soon

in your arms

but that fence

kept us apart

or the Sunday

as I practiced Zen

& waited for you

& drifted in my study

only to lose all concentration:

every sound

could be you

there

for me to

nuzzle

& without fence

share

each other, feed

each other, play

What sounds!

Was that me

laughing like that

& you

did I hear you squeal

as you took

food from my mouth

you fed my heart:

I who have always been

on my way

to something else

have followed this path

of fallen rose petals

to a hill

where I see

2 horses

graze together

in an open field

as I stop to catch

my breath

.

#SOL16: Dichotomies

self portrait (M.A. Reilly, 2016)

I.

It's the way he tucks her arm through his with such delicate care that catches my heart and holds my attention.  I notice the older couple, most likely in their late 80s or early 90s, seated opposite me at the local diner.  The couple sits next to one another on the same side of a booth. Opposite them is another gentleman, not quite as old.  The husband stands and he waits for his wife to zip her jacket and then holds a hand out to help her stand, before moving her arm through his. This is practiced love, I think.

Dev at a restaurant, checking out a camera (2015)

Devon and I have come for breakfast on a Saturday morning--a local place that when Rob was alive he frequented most mornings. It's an old haunt and we are all known by our first names.

"We'll see you next week, Michele," the man calls to the waitress. And then he laughs and adds, "if the good Lord makes it so."

I'm quiet until they pass.

"When I thought about the future, I always imagined that your dad and I would be just like that," I say to Devon, using the napkin to carefully wipe away a few tears. "I never doubted that your dad and I would grow old together. Nothing gained by doubting."

One of the interesting things about my son is he knows how to gather silence around him. And so he doesn't rush in to say something.

"You okay?" he asks a minute or two later.
I nod and then say, "I'm not crying because I'm sad." He smiles and I add on, "It's just they are so beautiful. So careful with one another. You know?"

II.

The last 24 hours have been tough on both of us. Yesterday morning I finally got my hair cut, after 8 months and on the way out people expressed condolences and also wished me a happy holiday. On the way home I stopped at a wine shop so I could bring some wine to my cousin as we will be eating Easter dinner with them tomorrow. Easter has never been a big holiday at our house. And though Rob was Jewish, we celebrated Easter with usually just my brothers or sometimes friends. I didn't expect the holiday to matter and find it does. At the wine shop as I am checking out, the cashier told me, "Have a happy Easter." Later I ran into a grocery store and the clerk at the check out said, "Have a great holiday tomorrow."

In the early afternoon, I took Devon for his driver's test only to find out Motor Vehicle was closed. Rob was supposed to take Devon last August after his friends who had visited with us went home. Rob became sick and Devon being who he is told us both to not worry about it.  "I'm not in any hurry," he would say. Rob and I appreciated his patience.

"How about we go to Cheesecake Factory and you can get that burger you like?" I asked him knowing we were just a few miles from the restaurant.
"Sounds good," he said.

After lunch we stopped off to look for a kitchen table and chairs.
"I want to do this with you so you can sit in the chair.  It needs to be comfortable," I explained and I laughed a bit at the look my son gave me. I imagined him thinking, We really need to do this now? He is not a shopper.

Last February, in order to make room for Rob's hospital bed, Devon and I got rid of a round table that had been in our kitchen for the last 14 years. It had seen better days and Rob and I had been looking to replace it last summer but never got it done. Now the room is empty and Devon and I keep hitting our heads on a low hanging light fixture.  We finally settled on a table and four chairs and as we leave the store I turned and said to Dev, "I can't recall buying any furniture for the last couple of decades without Rob. This feels so strange to buy this without him."

III.

Last night a little after 10 p.m. Devon came in and sat on the bed.  This is a signal that he wants to talk.
"What's up?"
"Nothing much," he said and his face held a sadness that tugged at me.
I waited a bit hoping he'd talk but he remained silent. "You okay?" I asked.
"Just a hard day," he told me and was quiet again.
I keep the quiet with him.
"Kept thinking about the restaurant and all the times I went there with dad."
"Yeah, you both loved it there. Your dad was always stealing a French fry or two."
We both laughed a bit thinking of Rob, thinking of us together.
"Good burgers," Dev said.
"Good memories, too."

It was their kind of place, I think. Love is so difficult, so effortless, so tenacious. We are nothing if we are not equally complex and simple.

These dichotomies define grief as well.

For it is both the small imperceptible ordinary happenings and the larger already known events that trip us up--let us know that we have loved so profoundly and lost equally so.

#SOL16: A Nightmare

A room (M.A. Reilly, 2014)

A nightmare wakes me. It's 5 a.m. Good Friday. In the dream which is receding even as I rush to record it my husband is dead and still there are doctors and nurses who won't let him sleep, or rest, or be gone and there alway seems to be some reason for why they need to unsettle him. This time there is a bomb that may detonate.

We need to move him, a disembodied voice tells me with some urgency.

Move him? No, please it will hurt him. I am frantic as I say this and as I look around I can't find Rob.

There seems to be some concern for me, for Devon who I somehow know is sleeping down the hall, sleeping even though emergency vehicles, police, and doctors and EMTs have arrived at the ranch where we are staying.

The ranch? We don't live on a ranch and yet I sense we are out west.

I try to explain to one doctor that he cannot disturb Rob anymore. "Each time you move him, even slightly, he's in agony. He's dead. He's dead. Just stop."

It's your life we're saving, a voice explains. Your life. If we don't move him, we can't get to the bomb.

And it's the anticipation of the loud noise that doesn't quite happen that wakes me from the nightmare into the still dark night where I write these words.

Even now, mostly awake, I am mouthing, He's dead. Let him be. Let him be in peace.

#SOL16: No Language

The Alphabet is No Language (M.A. Reilly, 2014)

It wasn't until we were already in the car, driving around the lake and heading to Devon's high school this morning. We were just about a mile from the house when I first thought of Rob. I can't recall any recent time that I didn't wake in the morning and first think of him. Some mornings I wake in a panic, thinking I need to get downstairs to check on him. Other mornings I wake with the knowledge that he is gone. I'm not sure what to make of this morning. The understanding that I hadn't begun the day thinking of him caused my stomach to clench.

Grieving happens in waves and sinkholes. Each day tears come and go like a wave washing over me. Each day deep, unbearable pain seizes me and sobbing steals my voice. Both happen daily. Every day and most often without warning.

I'm learning to trust the necessity of both and am standing still in these feelings. Now, it isn't so much shock, but rather a profound sadness that grips me. I know no words that can capture even a slim sense of the loss. The alphabet is inadequate. Across each day I come to name and rename with great immediacy what Rob's death means to me. For example, this afternoon I was out walking and I had my phone in my back pocket. When I heard the phone ring, signaling an incoming call I immediately smiled thinking it was Rob. For so many years, afternoon calls were most often him.

The last time Rob phoned was February 12.  He was still in the hospital at that time. I saved the voice mail he left me and I replay it most days.  It is these very ordinary things--theones that typified our days that most catches my heart, causing me to falter a bit. 

#SOL16: All the King's Horses

Crow Flying (M.A. Reilly, 2015)

You cannot find peace by avoiding life. - Michael Cunningham, The Hours 

I've been brave. I have avoided filling my life with stuff to do in order to not feel. Right now that is the bravest thing I've done in a while--save holding Rob's hand while he died. And in honesty that wasn't so much an act of bravery as it was an act of necessity, like breathing. My husband was not going to his death without knowing on a physical level that I was there with him, caring for him through his last breath.

Feeling is frightening in this time when my sense of self is so partial, my confidence a mere fraction of what it once was. Sometimes I think that if I feel too much, I will crack just like a frail Humpty Dumpty in a skirt. And I know on some fundamental level that all the king's horses and all his men will not be up for the job of putting me back together again. That's the dominant fear. If I allow my self to feel with out constraints--I will tumble over some metaphorical cliff, tumble from some high wall and not be able to find a way to reassemble and find my home again. I'll once again be an orphan.

In one book I was reading, Widow to Widow, the author, Genevieve Davis Ginsburg, advises strongly that a plan be made for every day so as to avoid that space of indecision and uncertainty. Ginsburg writes, "Tape this sign to your bathroom mirror where you can’t fail to see it every night: DO NOT GO TO SLEEP WITHOUT A PLAN IN YOUR HEAD FOR THE DAY AHEAD."

I understand the sentiment and have taken solace in the knowledge of a plan for a given day when I have one. In truth I am far more settled than on the days that stretch ahead and are largely undefined. Nonetheless,  I wonder how wise her advice actually is--especially if having a plan becomes a daily matter. What gets surpressed in all that business, certainty? Perhaps it is better to trust e.e. cummings who wrote, "Since feeling is first..."

Tuesdays are difficult, especially as the afternoon wears on. And I wonder how many Tuesday afternoons will need to pass before I forget to mark the day and time as x number of weeks or months or years since Rob's death.

#SOL16: Brussels and Silence

One thing I learned watching my husband die is that the will to live is so very, very strong. Today finds me wondering what is it that allows a person to strap on explosives, walk into a crowded public space, and detonate it--all the while knowing your own death and the death of others are certain. I am thinking about this today in light of the terrorist violence that happened earlier in Brussels and how that contrasts so sharply with the months I watched Rob fight for his life.

 
To chose to live is an act of courage--an act we honor. To kill innocents is no act of martyrdom--it is nothing more than the act of a coward. 

According to The Guardian, "The Brussels government has invited the Belgian population to observe a minute of silence, tomorrow (Wednesday) at 12pm." For those of us living here on the East Coast of the United States that would be 7:00 a.m. EST tomorrow. 

The last gift Rob gave me were some essential oils and a diffuser. He completely surprised me by having them shipped to our home for Valentine's day. They arrived here about the same time Rob came home for hospice care--came home knowing he would die. 

Tomorrow morning a little before 7, I plan to pour some oil into the diffuser, light the tea candle, and sit quietly gathering the silence close and pray for peace and kindness to comfort those whose loved ones were murdered or injured in Brussels. 

#SOL16: A Widow's Guilt

self portrait (feb. 2016)

Let me tell you a secret.
Something you don't know
but something I tell myself.
Often.
Daily.
Now.
Here.
Shh.
I'm Omnipotent.

I should have been able to save Rob,
to save the man I have loved for so long,
to save my teenage son's only father,
but I didn't.
I didn't.
I failed.

I should have known the first hospital
was a grave error,
that the surgeon was a mistake--a careless man
who cannot own his own hand in this.
But I was mute on the matter.

I should have stopped Rob
from returning to that hospital in late September
and taken him somewhere else,
somewhere better, a teaching hospital.
But, I didn't do that and although the death certificate
lists lung cancer as the cause of death,
my husband's death was largely caused
by multiple staph infections,
especially the one that went untended
and kept him from the cancer treatment.

I should have raised my voice more
and said,  No, 
when spinal surgery was put on the table.
I worried quietly that the surgery
would delay cancer treatment
and that Rob would run out of time.
And he did.
He did.

I thought if I kept
everything moving,
everything clean,
everything orderly,
whole foods cooked
and served
and cleaned away,
windows washed,
laundry cleaned and folded,
floors swept,
garbage out by 7:30 a.m.,
son to school and home again,
bills posted and paid
that he would be okay.

I thought if I
was responsive,
available,
attentive,
action-oriented,
relentless,
spirited,
loving,
problem solving,
on the case 24/7
that Rob would live.
But he did not.

I thought if I implored God:
Save him, God. 
Save him and I'll do anything. 
I'll do everything.
Whatever you deem necessary. 
I'll be that burnt offering on a mountain, 
your modern-day Isaac
willing to be the sacrifice
that my sad prayer
would save him,
but it did not.

To be a widow
is to know
such torment.
I failed you.
I lived
and you did not.

#SOL16: The Ways Children Love

As many of you know, Rob and I worked in schools--mostly in Newark, NJ.  For the last four years, I have had the pleasure of working with teachers at the Robert Treat Academy in Newark, NJ.  I love the two schools. At the Jackie Robinson Campus, I have worked with the same group of children since they were first graders. Now they are in fourth grade and they are simply amazing learners--the brightest children I have ever known. I worked with their teacher, Jackie Perguero, when she taught the children in first grade and again this year.  I returned to work this week and the children made me a beautiful and inspiring book.  

Tonight I was feeling a bit down after dinner and noticed the book and took time to read and photograph each page. Below are photographs of the book.  Friends, there is no healing like the healing that happens when children give you a piece of their heart.

Thank you Jackie and children!

#SOL16: Ice Cream and the Widow

(M.A. Reilly, 2014)

The only emperor is the emperor of ice-cream. - Wallace Stevens

I.

It was just a spoonful of ice cream. Häagen-Dazs--coffee--to be precise. I had reached in for ice and stopped short as a rush of anxiety waved over me. For a bit of time, I just stood looking at the container, studying it as if it might reveal some hidden truth.  And then, I was seeing beyond it, recalling it was the last thing I fed Rob three days before he died.

You want food? I asked Rob, so surprised to hear his request and oddly overjoyed. It was midday on Sunday and friends were over. Even though I knew that not eating was a normal part of dying it was so hard for me to honor this.  If you came over next Sunday, one sure thing I would do would be to offer you food and drink. 

I looked at him and noticed that he was nodding his head. I knew he hadn't eaten for more than two weeks and I worried how eating now might make him vomit and then thought about what food he could even swallow. He had a spoonful of ice cream the week before.  

How about some coffee ice cream? I asked knowing it was his favorite. 

Excellent, he told me in a voice that may well have belonged to a British Lord. 

And so I fed him tiny bits of ice cream and he ate just about a large teaspoonful before signaling he was done. 

When Rob came home from the hospital it was mid February. He stopped eating food by the fourth day. He lived another two and a-half weeks.

Simple acts are ladened by memories.

II.

Last night, I closed the freezer door soundly knowing I could not eat, nor could I throw out the pint of ice cream.  For now it just sits there. This is what it is like these days.

To be a widow is to be confounded.

Yet, the difficulty I find in making most decisions is tempered now and then by a stronger need to put my emotional house back in order. I want to decide on this pint but know that tonight this is a battle I will not take on. And so the ice cream remains in its spot in the freezer and I once again am feeling grateful to know somewhat--the limits that test me.

III.

It might surprise you to know that the average widow here in the United States is in her early 50s. I imagined I was much younger than the average and now find that this commonness of age I share with so many others is oddly comforting.

Tonight, as I walk away from the freezer and out of the kitchen shutting the light behind me, I stop for just a bit knowing there are other women, elsewhere, widows just like me, staring into freezers unsure of what next to do. This is a sisterhood born out of death. This is a club no one wants to join, but most will.

Death of the man you loved--the man with whom you marked decades, raised children--this heartache cracks you open while demanding a new birth.  And it is the complexities that cannot be unravelled regardless of effort that humbles me most.

I know so little.

Beauty is born from such vulnerability and love finds expression in that which perplexes us most.

#SOL16: Paused Between Two Worlds

Guardians, Too (M.A. Reilly, 2009)

No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep on swallowing. - C.S. Lewis, A Grief Observed, p. 3.

I.

I expected healing to be a loud a matter--to announce itself.  A trumpet at dawn. A loud crackling, like a fire spreading. Late evening declarations.  But this is not the case.  Healing is more often silent, more of a background to the days that find me floundering, avoiding all things new. 

These floundering days are filled with fear--an expression of grief. The very worse thing I could imagine has happened.  My husband has died. One moment we are planning our lives, saying retirement is a mere decade away and then I am sitting next to him, holding his hand and watching as his breath shortens, as the distance between breaths elongates until he breathes no more. And I recall the overwhelming shock, the loudness of that empty room when his vibrant, beautiful soul left leaving behind a body on a bed. 

But it wasn't only his death that stunned me, left me more hollow than filled.  It was the unrelenting pain, sorrow, dashed hope, and fear that defined his last six months. Yes, we had light times but they were so very rare. Yes, we had hope for Rob was nothing if not a man who believed he would live. Yes we had love for was it not the base definition of us? But each new malady, each botched medical procedure, each unfortunate outcome catapulted us into more and more reacting. 

Less being. 

We were rats in a maze.

II.

My husband died in early March, but he was taken from Devon and me months earlier when staph infections ruled out cancer treatment; when his body no longer strong began to crumple: by the end of December his right leg could not support his weight and became numb from the thigh muscles to the toes and he could no longer stand, let alone walk. He became chair bound and then bed bound. My strong, strong husband could not lift himself out of a chair, a bed.  He suffered through spinal surgery and 9 days of rehab before the last staph infection--the third one in five months--returned him to the emergency room of a hospital.  By the end of January, his mind, his most amazing mind became too clouded from opiates and pain and more opiates and it started to break. He became more there and less here. 

50 consecutive days in hospitals broke him--ended his life well before his last breath. 

III.

What follows in the weeks between Rob's death and now is that my mind seems to be taking the necessary steps to keep me from being harmed so boldly again. Even as the shock has worn, the numbness has faded, I keep a stillness about me that is unhealthy.  

Don't try that. 

Don't go there. 

Don't do that. 

Yet, against all this inactivity is Rob's louder voice, "Don't you dare hide yourself away." He somehow knew, ahead of time, that hiding would be my first response. And yes, I know that such protection keeps me waiting, stalled, suspended if you like between a past life I can no longer access and a new world I must actively make.

I am paused between two worlds.

C.S. Lewis captured this feeling well when he explained that grief feels "...like suspense. Or like waiting; just hanging about waiting for something to happen" (p. 33). 

IV.

I thought I was writing for you. I thought I was writing in order to remember Rob. I thought it mattered if you read and took time to respond. And in some small ways it does.  This bearing witness matters some. But I see now that I have been writing mostly for me, mostly to reinvent my life by rehearsing living--to stand in the fear and be vulnerable, to chance being loved.

It isn't fear, but rather sheer vulnerability; It isn't hope, but rather love--that inches this tired and broken self towards light.

#SOL16: Reinvent

Walking the Dog (M.A. Reilly, Teaneck, NJ, 2013)

I.

What hurts so much after Rob's death is that I still desire the life I had with him. I keep seeking it out. I book a trip and mostly what I think about is how lonely I will be without Rob. I order dinner from a favorite restaurant and when the food I arrives I notice I have ordered an extra dish--Rob's favorite.  I see a new book by Walter Benjamin is being published and I buy it--a book Rob would certainly have wanted.

But Rob is dead.
Our life is not traceable. Nor can it be recovered.

Nonetheless,  I attempt to find trails into the familiar, the tender, the known. I so want to be with the man I have loved for what feels like my whole life and anything less leaves me feeling empty.

What I want most, I cannot have.
I cannot have.
Cannot have.

All around me this knowledge presses and in that compressed space where my very breath is labored, I understand I must reinvent my life.
Reinvent my life.
Stop looking for substitutes and live.


II.

Years ago I was in psychotherapy when the therapist offered a bit of advice--something he did only once in a decade. At the time, I kept repeating a behavior that was not only unhelpful, but also potentially harmful. This had gone on for months and I was feeling frustrated, frightened, lost.

How can I change it? I asked in earnest.

The late day light played in the space between us. He stared for a moment before saying, Lift your foot.

I laughed a bit and then I lifted my right foot off the carpet, paused, and then returned it before looking at him.

He waited, looking somewhat pleased before he said quietly, That's how you do it.

III.

After learning he had but a few weeks to love, Rob held my hand, looked me in the eyes and said, Live brilliantly. Don't you dare hide yourself away. Live brilliantly.

Live. Brilliantly.
How?

Just do it.

#SOL16: Set to Rights

A Light at Night (Reilly, 2012)

I.

I'm sitting in the living room. From the seat I can easily see into the family room. I can see the exact space where Rob had lain for last three weeks of his life. Yes, the hospital bed is gone and with it the hum and drone of the oxygen machine, but the image remains. The family, the friends, the business that defined the last few months are gone too.

Between the two windows, the oversized leather chair has been returned.  Now 18 votive candles line the mantle above the fireplace.  I cleared away the hospital detritus: gloves, diapers, alcohol wipes, discarded wrappers, a pile of folded washcloths, some body lotion. And although the room has been set to rights, nothing feels right. Everything feels wrong.

II.

On Sunday there is the anticipation of snow on what will be the first day of spring and all I can think about is that this will be the first season without Rob and the list of firsts is unyielding. Usually about now, we are thinking about potential summer holidays and making tentative plans. Often, we are planning a brief stay somewhere during the week Dev is off in April.

How about a quick trip to Maine? Rob might ask, and so often that plan is seconded by Devon and before we know it reservations have been made, the car has been loaded and we are off off off.

Friends and neighbors hesitantly ask, How are you doing?

And truly I am so lost that I can't even fathom an appropriate answer and so I just lie.

I'm okay. 
I'm getting there. 
Doing what I must do.

What they can't know is that 'how are you doing' is just the wrong question to ask.  It assumes I am doing, acting, being.  And such action is so far beyond where I sit.

These days, the light hardly penetrates.
It's always cold.
And though I may have set the room to rights, my heart feels dead.

#SOL16: Staggering Medical Costs

Rob at home during Hospice

I.

As many of you know, a little more than a week ago my husband died. He was diagnosed with stage 4 lung cancer on September 8th, 2015.  On January 8, 2016 he underwent a 90-minute surgical procedure on his spine in an effort to reduce spinal cord compression.  The lung cancer had metastasized and he had lesions on his spine. Rob underwent this surgery with the understanding from the oncology team that he had at least 6 more months to live.  Had he less than that amount of time we were told,  the surgery would not have been done.  Four weeks later, the oncologist told us that Rob's illness was now terminal. He died 4 weeks after that on March 8th, 2016.

During the six months I cared for my husband, I set aside all of the correspondence from the insurance company and the medical bills from pathology corporations, ambulance companies, surgeons, doctors, etc.  My first priority was caring for Rob and our teenage son. Now that Rob's care is no longer a need, I started to sort through the pile of bills.  I have been nothing less than amazed and appalled at the staggering amount of money that my insurance company has paid.  We're talking millions.

What caught my eye was an accounting from the insurance company that arrived on Tuesday.  The insurance company indicated that they have paid a little more than $283,000 to the surgeon's practice for his 90 minutes of work on that January morning.  Additionally, I have received a separate bill for another $27,000 for the assistant surgeon's bill from the same practice. Now keep in mind that the insurance company also paid $26,000 to the assistant. The insurance company also has indicated that I am responsible for an additional $18,500 that I will need to pay to the surgeon's practice.

I called the surgeon's practice and went through the bills with the billing office. I am pleased to say that they have decided to forgive all of the debt I would have had to pay. And I am of course thankful for that especially given the remaining pile of bills that still await payment.

I must admit though, I do wonder about the amount of money that was charged for a 90-minute surgery and what the insurance company has said it has already paid.

II.

Rob had spinal surgery on January 8, 2016.

He never was able to stand up, let alone walk again. For two weeks of the three he was home before he died, Rob would wake and say, "Help me up. I want to get out of bed."  I would have the painful task of reminding him that he could no longer walk.  Although he entered the hospital with just his right leg not working, he lost capacity in both legs after the surgery.