Part Two: The Anger March

March 2013 – Three years after.

The yearly rhythm of grief.

I am angry angry angry angry.

Is this the “Anger Stage”???????

I guess that’s what psychologists would say.

But I don’t want to be predictable, explainable, the same as everyone else.

I am me. I am different. I am unique.

I lost my husband and no one else did. No one else had experienced his love; this love without questions. No other couple enjoyed this trust, this implicit, all encompassing trust.

Between us, there were no patronizing comments disguised as jokes; no trying to catch each other at stereotypical blunders.

This is why I want to shout at every couple I see,

“WHY ARE YOU ALIVE????????????????


I was surprised for a while at the anger I felt in March; the infinite sadness in April.

Then I realized that, three years ago, this was the period in which our family was tried the hardest. This was when we had to watch Bill’s health rushing downhill in an unstoppable slide. It was then that we had to witness his gradual inability to move a hand to his mouth to feed himself.

The loss of his legs

The loss of his arms

The loss of the ability to sit up

It was then that I would sometimes realize, in despair, that I might not be able to do this for much longer, that I was becoming impatient with the constant pressure, the unending demands. I saw to my horror that my love could actually turn and make me treat him not with the infinite patience I would want to treat him with, but with a rash brusqueness. The overarching sense ruling those days was the anxiety over what would come next: the loss of his voice, his inability to breathe well.

One of the most shocking and fearful things was to witness the horror and disbelief in his eyes as every new assault on his dignity manifested itself.

It was the small things he held so dear, which now we were called on to perform for him:

Grooming his beard
Brushing his teeth

And – yes – watching as he, desperately, determinedly, insisted on wiping himself after he used the bathroom. This was the most heart-breaking duty. Not because it was distasteful; it wasn’t. Heart-breaking because of his fierce independence and his impeccable sense of personal cleanliness which had to be preserved.

These are things I don’t like to write about because it brings back to the surface that despicable, desperate time. It may help to explain my mood though, so I will describe what we went through in those last days before his death.

We had never seen fear in his eyes. Fear was not something he ever had to deal with. He was too much of a planner for that. If there was to be the least indication of uncertainty in the future, we simply had to plan.

“If we check out the railway station the night before, we won’t miss the train in the morning.”
“If we double-check the dimensions, we will be able to fit the furniture in the room.”

But now there was fear. Not fear of death though, let me be clear.

From the time he was diagnosed with ALS and realized his slide towards total paralysis was to be faster than anyone had predicted, he wanted to die. He wanted the dignity to decide his own fate, as he had always done.

So this was a fear of the unknown, and thus, the un-plannable.

Life had done the cruelest thing to him: thrown him a curve ball whose trajectory it was impossible to calculate and predict.

In the first three months, he had helped us cope. With infinite courage, delving into his boundless inventiveness, he had seen the disease as a challenge: He built his own wheelchair ramp, fixed a carrying tray on his walker and took to the chairlift with humour, singing songs as he ascended, claiming it went too slowly and that singing made the time pass.

As the disease marched on, seemingly robbing him of every dignity, his mind still shone,but he had to leave most of the acting to us.

So we coped, riding the desperate ride of the doomed, responding to emergencies as they occurred:

Bathroom calls
Learning to operate complicated apparatuses
Futile wheelchair adjustments by artificially jolly technicians
Trips to “mobility” stores where we bought evermore humiliating equipment disguised as life affirming tools.

We’d long since given up listening to the specialists who would cheerfully declare that “You can have a full and wonderful life”, having been deprived of every faculty you hold dear.

“We can feed you through a tube”
“We can mimic your voice on a computer”
“Medical science has made great strides”

Oh yeah?

“Well, then give my husband back his legs, so he can dive off the cliffs again”,
“His hands so he can shape the wood in his workshop into pieces of art”,
“His voice, so he can sing those opera verses full of love and tears”

Not one of those experts showed us that they understood the pain of losing the essence of your being; the essence of being alive.

Only our little family got that part.

So the relief came at night, with the kids.

They stood around me.

They understood.

We called ourselves “Team Death”. We were determined to give him the death he deserved, even if legal constrictions made it difficult to make that happen.

So, there were code words for the nurses who came to the house:

“He deserves to be comfortable”
“He is anxious”
“He can’t sleep”
“He needs more or different tranquilizers”

And here, let me sing the praises of end-of-life nurses:

They are rays of sunshine in a world of black despair.
My anger, therefore, is not directed at the nurses.

It’s not even directed at those unfeeling specialists,

Nor at the uncomprehending neighbours.

At what, then?

Why are you angry? Explain yourself.

But it’s not explainable.

This is anger too large to hold.

This is anger too strong for my heart.

It’s universal; it’s above and beyond.

This anger just is.

Part Three: From Loneliness to Autonomy >>

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