#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: 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: Guilt, Guilt, Guilt and the Möbius Strip

Ophelia (M.A. Reilly, 2009)

I. 

"There's something I need to accept," Rob tells me in halting speech a day ago.  Later he will add, "I need to get to the other side."

Outside today the temperature is spring-like. And I too have a yearning to move on.  For the last five months my son, husband and I have been focusing on getting Rob well.  For the last three weeks after receiving the terminal prognosis, I have been seeing to Rob's earthly needs as he drifts between here and somewhere else.  Taking care of him here at home is difficult and I am feeling so worn down from lack of sleep and the exhaustion that also comes with the amount of work it takes to care for him and most everyone who comes to visit while sitting next to him waiting for him to die.

Each day Rob tells me something about dying and in the last 24 hours these messages are very direct. Today, before our son went off to high school Rob told us he plans to die before 2:30 this afternoon--which is the time Devon would be getting out of school. Rob now seems to know that he needs to die to get to the other side but isn't quite sure how to do that. He is lodged mostly in another world.

After Dev is off to school with Jane who spent the last two nights with us (thank God for friends who know how best to help) and Rob's mother who is still asleep upstairs, I try to change Rob and find I just don't have the strength to finish the job. This undoes me and I sit in the big chair next to his bed and cry.

II.

I am writing this because this is what dying at home is like. It is love and it is guilt. It is extremes. It is exhaustion. It is fear. It is terrible. It is grace. It is pain. It is uncertainty and certainty. It's also a great distance from the portrayal of death on the big screen or in fiction--when the camera zooms in to capture the painful, yet oddly beautiful end.  Rather, I have watched Rob come to terms with death and now desire death and not know how to achieve it. And I am wracked with guilt today for wanting my husband to pass on--not just for him which would ease the guilt, but if I'm being  truthful here, also for me. We need to end this misery--a misery that should never have happened, but did. And even as I say the words, I know how I will regret them--how I will regret even a second lost with this man.

"Each day I tell myself I will not look at you, and each day I fail. I can't not look," Rob tells me in a moment of lucidity this morning.

I can't not look too, I think.  Me too.

And that's the truth.  It's like we are caught on some odd Möbius strip. Non-orientable and yet we continue to move.