What human has to go through this twice?
Make no mistake about it
I am pissed-the-fuck-pissed-off-about-this-mother-fucking-mother-fucking/fucking/fucking-fuck-the-fuck-off bullshit
I know anger is not the answer, but right now it is the way…
And God Dammit -
She will not let me get away with it.
I get pissed…
I lash out —
And motherfucker, people meet me there with grace.
I don’t want your fucking grace.
I want a fucking fight.
There isn’t a fight left any more.
No fight will change this suffering.
And mother fucker …
It sucks so fucking bad.
I am so fucking sad.
My heart hurts.
My every fucking cell hurts.
I am so pissed off that I am the only one that sees this.
Why am I the only one who knows what I know?
How are you?, they say.
I’m a fucking mess, I say (facts).
And yet, every single day — I am slinging the truth.
(to the nurse) No, he can’t move that arm. Please don’t touch it. It hurts him.
(to him) Yes, dad. It is entirely possible that your lungs are shutting down due to the ALS. Meeting the terror in his eyes with my own strong gaze. And I will not abandon you during this. No matter what, I say.
(to him) Yes, dad. I will go look at the tricked out mobility mini vans you bought for mom way back when. As soon as I get done slaying these dragons at the hospital so you can go fucking home. Knowing well and good, these mini vans may not ever be a thing.
(to the nurse) Please add 300 mg gabapentin to his regimen to help mitigate the pain of his de-nervation. Why am I the one who knows what he needs when he needs it? Why am I telling the doctors how to do their damn job?
(to the palliative care people) No, he does not want a tracheotomy. Sigh.
(to him) Yes, Mom’s ALS was slow, dad. Yours is coming on at warp speed. No, I do not know why. But I suspect, I really do, that the end is near. And I will tell him, when the time is right.
I am the only one who will speak truthfully to him. He knows this. So when we are alone, we go deep quickly.
Becca, talk to me, he says.
I turn the TV down and brace for the whispered questions.
And all the while, he’s still trying to protect some of his loved ones.
Ok, dad. I will not ask your girlfriend to learn how to administer your meds via the feeding tube. I realize you do not want to burden her. She might enjoy being one of your primary caretakers, dad, I offer.
Dad, you do not need to worry about the cost of them changing you again in the bed. There is no extra cost for bed changings. They are unlimited, I chide him.
My heart feels like it’s constantly in a vice.
The bottom half of my heart feels like someone is squeezing it in a cold grip of iron.
I have no interest in food.
I just want to be more effective.
And yet, I can’t possibly be more effective.
I see how effective I am, in my heart of hearts.
And I see the sacrifices I am making, and they are many.
I spar with nurses and educate doctors on what he needs and when he needs it. I do this well. So well, I surprise myself sometimes.
I rattle off the timeline of where we are and how we got here better than any resident in UTSW can possibly fathom. They stare at me, mouths agape.
And yet, it’s still not enough to reverse the current course of events.
And I am the only one who knows where it’s going and whats next.
I know better than he knows.
My family asks me now, what’s next?
And he’s asked me, he keeps asking me…
Becca, Have the doctors said how long I have?
Becca, How long did your mom have ALS?
He never really paid attention.
It was too painful.
He was only partially there with mother. He bought the finest equipment to care for her and then, when it got scary, he jetted. To the country club he went.
I was fully there.
Trying not to resent him. Staying focused on mom.
So now he needs me.
More than ever.
Only now does he truly value me, it seems.
Compassion is the understanding of suffering.
For I am compassion, and I sit at the fingertip of God, says Spirit on the High.
No other is above me but God, is the teaching.
And God is the living word of Love.
He, my father, is living the lesson, the truth, of compassion right now.
And I hate it for him. I feel his pain. And I love him. And I hate seeing him, feeling him suffering and being powerless to change it.
And yet, I know it is inevitable for all of us.
This is his hell.
On the other side, is bliss.
He deserves it.
The bliss, not the hell.
Dear Lord, Please.
Spare him soon.
When he is ready
And with mercy.
And until then…
By his side, I will be.
And so it is.