Choosing where to be while the Titanic is sinking

There is a beautiful, painful scene in the Titanic that represents the kind of choice a mother made when she knew that she and her kids would die that night. This scene is precisely the choice that we made, faced with a life ending disease, and knowing the end was coming. There was nowhere to hide. There was absolutely no chance of an alternative outcome. Mike was going to die, and that was all there was to it.

In the Titanic scene, there is a beautiful Irish mum who is in her tiny room, far below the deck, with her two little ones. The film flashes between the freezing water rushing into every crevice below. There is no place to hide as the boat fills up from the bottom to the top. The boat tilts. People are screaming in all areas of the enormous vessel. And yet below, this beautiful mum feels the movement of the boat and the chaos around her. In a moment of autonomous rebellion against what faced them, she gently tucks in her kids, knowing it is the last time she will ever protect them in warmth and tenderness. She makes the tenderness last, knowing it will be punctuated in the end by minutes of horrible suffering and terror. Importantly, she makes the choice to extend this intimate chrysalis of maternal comfort. The smell of her beautiful little ones who she has known from moment one. She treasures every detail of her beautiful kids as the boat is sinking. Knowing how they will all die; knowing it will be soon; but not knowing when. She claims boldly that these particular moments will NOT be abandoned to fear. She will surround them with love even as the ship goes down.

That scene came back to me now 8 months after Mike died. It captures the mindset choice when there is nowhere to escape from death. It is coming - the moment we have feared our entire lives is walking towards us, looking us in the eye. The only choice we have is mindset.

This is precisely how it felt to witness Mike’s final months and year. Not knowing when, but wondering how long it would last. Treasuring each tender moment like the miracle that it was, while also breaking in the reality of the weight of becoming face-to-face with the loss. I want to be clear that I was not that peaceful Irish mum. I was oscillating between highly functioning, and completely broken. My brother and I had a front row seat to Mike’s suffering, to Mike’s nobility, to his dedicated hard work to fight for another day; and to his gratitude to have another moment together.

Friends had left because they had to be elsewhere, or chose to drive away. We were dropped into this isolated state, looking desperately around for recognizable faces as we outwardly functioned and inwardly were drowning, with only each other in view.

My friend Maria came to my rescue in January, at great personal cost. My brother flew in that last month of February, thank god. Thank Jeff. The kids were there for all of summers, for winter vacations, and knew that Mike wanted them to pursue their lives, no matter what. They were where he desired them to be, as we all ached desperately to be together, for it to be over, and mostly for it to not be happening at all. We wanted so much for it to not be real, while it was real.

Friends who were close kept showing up because we could not turn them away. Those who turned away left a vacuum that collapsed a chamber of our hearts. Our hearts limped in their absence, and the echo of their absence was felt every moment as the moment countdown continued. Days turned into night. Night turned into day, each leadened moment heavy, while going about reflexive tasks of feeding pumps, meds, comfort, dressing, toileting, love, tears, conversation, with Mike slowing texting his communication.

Sleep was short. He’d pull on the covers with extraordinary effort with the few motor units he had to get my attention in the middle of the night. The movement of the covers could not convey whether he was in distress or if the need was gentle pillow repositioning, yet my response was as if I was on fire.

I leapt from the bed as if I had been electrocuted, flying across the room to wake up while walking and trying to understand in the 8 feet around the bed what I needed to do. There were times I am ashamed that I clearly said, “Jesus Christ!!”; resentful, exhausted, and terrified. In the middle of the night, I was so enraged at ALS that my love for Mike was well hidden behind survival reflexes and desperation. My sleep was shallow and fearful. Rest was fractured for me and impossible for him. The sound of the vent impersonated the respiratory rhythm of life and was the lifesaving, foreshadowing soundtrack to ALS. There were times he woke up so desperately, kicking and gasping for air without the ability to inhale, only the ability to drown in dry air. I’d wake up terrified, and had to be smart and awake immediately to solve what was happening. I was breaking - at times on the ground, slamming my head into the floor or hitting my head with my hand to make my brain wake up. locate some kind of previously unavailable clarity and serve the moment well. Surely if I hit my head hard enough, the reset button would kick in. I would wake up and see clearly and calmly what to do. But it did not. The channel was the same. So Mike was not only struggling, but he witnessed me slamming my forehead into the floor as I slowly broke. The next day, we’d do what needed to be done, recognizing the fracture of sanity in between islands of incredible efficiency. All of this happened while he was experiencing air hunger, desperately wanting to sleep, waiting to get to a moment that was easier. Waiting to get to an island of ease, no matter how short, so he could look around and have a moment of peace. Wanting to say what he needed to say while he could say it to the people he loved.

In his silence, amidst visitors, he heard people tell me what a great job I was doing during functional moments. Hospice didn’t encourage me though, except for his friend who seemed to see our dynamics despite Mike’s slow communication and our times together. Mike knew I was doing my best that I possibly could, and he forgave me daily because it was nothing close to great.

We needed a floatation device in all things. Hospice was a yin and yang.

He/we had 5 different nurses due to 5 different reasons from a broken leg to a ‘just the opener’ to ‘just the fill in’ and more. The Second to Last Hospice Nurse smiled at me as she told me I was doing things wrong. Her conflict avoidance combined with our situation was unbelievably cruel and passively delivered by a woman who couldn’t navigate it. I loathe emotional incongruence, where people smile awkwardly with avoidable dissonance, and limp through something they know they contributed to. In an emergency, it is not the time for weak people who aren’t strong enough to be clear, yet empathetic enough to understand they are witnessing the damage they could have prevented. She wrote, “Be well” on his condolence card to us; her awkwardness waving a red flag of lame incompetence in the moment. The snapshot I have of that situation is a bell that cannot be unrung. I have no gentleness for her yet. Perhaps one day I will, but at 8 months after the moment of Mike’s death, I do not.

I was on the deck of the Titanic, desperate and screaming. She handed me a useless piece of paper to sign when I needed an advocate and a human being with an EQ and a spine.

There is no smooth resolution paragraph here. Some parts of grief hang like the rebar of the seventh floor apartment hallway after a bomb - particles blowing in the black smoke. Fragments of fabric burning and torn; a bed hanging over the broken precipice of the fractured living room upended by explosives; toys under rubble. Unreconciled, wrong, useless, unnecessary damage.

I’m going to let that image remain, because grief is a raw open wound that invades us and is not reconciled.