I've seen Gerardo endure much. From cancer surgery in 2013 to radiation to stent replacements to complications from liver cirrhosis, to strangulated and incarcerated hernias, to internal bleeding, and to debilitating episodes of hepatic encephalopathy. I've also seen how depression and anxiety and fear have become proportional to his physical suffering and grip him tighter and tighter.
In the darkest depths of despair, I hear Gerardo screaming his single-word prayer: "Why?"
It's a prayer that even the most faithful seem to utter. Even though I think he knows that suffering is neither personal nor permanent, and that it's not because of sin, and that it's an arbitrary part of living, he still prays it. And in my darkest moments, I pray it too.
FOMO
On his podcast, BLOCKS, Neil Brennan asks Bert Kreischer why he fears death. Bert gives the best answer I've ever heard. He says he fears it because of FOMO: the fear of missing out. Like what if after his funeral some of his friends decide to go get a drink and shoot the shit, remembering the good times with Bert? Who wouldn't want to be included in that scene? That whiskey on the rocks. That conversation. Those laughs. Those tears. That familiar seat at the bar where the time of day is packed with potential for the next wonderful feeling to arrive.
I feel the same way. It's not that I want life to be infinite so I can live with endless pain and suffering. But damn, I don't want to miss out! Because after my funeral what if my best friends decide to gather ... perhaps at a bar but more likely an art studio where they raise a glass and then make some art, talk about the good old days and then break into poetry readings, dance, and a sing along. God, that sounds fun.
CURATIVE END
I recently accompanied Gerardo to meet with the palliative care group at UC Irvine. The way I understand it, palliative care is about helping with pain management and quality of living so that the patient and caregiver can exist with less suffering. Hospice care is also all about that but the main difference is that hospice care is dispensed when there is no curative end. Palliative care is dispensed when a curative end may or may not exist.
By "curative end" of course they mean a cure for disease. Because there is no cure for the actual end. Everybody ends.
THE SEA IS NEVER FULL
The curative end for Gerardo's disease would be a successful liver transplant. And no matter how many times I explain it to people, I still get folks asking me: "So, where is he on the list?" And I explain that it doesn't work like that. It's not like standing in line at Disneyland waiting our turn to get on the ride. It's an evaluation of how sick his liver is, based on blood work. The sicker the liver, the greater the chance he will be prioritized for a transplant. And how sick the liver is is measured by the MELD index. And because our health care system is built around specializations, consideration isn't given to context ... like hernias or bleeding or encephalopathy or the condition of other organs like the kidneys or heart. It's not that liver specialists don't care about context. But because demand is through the roof and supply barely covers the ground, the liver transplant system has organized itself to simply focus on the liver. And they will help the sickest liver first. Period.
At church recently, the chancel choir sang a powerful song that contained these lyrics (To Love our God by M. Hayes):
Where does the wind come from? Where does it go?
Blowing north then south, how does it know?
The rain flows gently to the sea, yet the sea is never full.
How can these things be?
Yes, I wonder the same.
How? Who? What? When? Where?
And of course, "Why?"
Hear my prayer.
No comments:
Post a Comment