Sunday, September 27, 2015

So Much Suffering

It's strange when a loved one being in the ICU feels familiar.  

Michael is my older brother.  He has a developmental disability and is the bravest person I know.

Five years ago I remember when Michael was placed in the Intensive Care Unit for bleeding in his esophagus.  Those three letters--ICU--sent a shockwave of terror through me.  The closed, locked doors to the entry to the unit ... the breathing tube and computer monitor carefully reporting my brother's vital signs ...everything about it screamed, "This is serious.  This is high level."

When my Mom told me on Friday Michael was in ICU for the same reason, my reaction was different.  I was far from nonchalant, obviously, but it was more, "I'm glad he's in the best hands."

Michael's health has always been complicated, puzzling, and saddening.  There was many a holiday or birthday celebration throughout my childhood when Michael was in his bedroom sick.  The list of his diagnoses is long: kidney disease, Addison's disease, achalasia...

It's the last one that has been the worst.  Achalasia is a disease of the esophagus.  The muscles stop working, so the esophagus can't push food down into the stomach.  But perhaps more damaging is that achalasia causes the sphincter between the esophagus and stomach to tighten.  

The opening narrows to such a degree that food, drink, and saliva can't pass into the stomach.  Everything sits in the esophagus, irritating and eroding.

Michael's esophagus is very damaged.  It's filled with ulcers and tears.  And sometimes those ulcers and tears begin to bleed, which happened this past week.  The bleeding was rapid, profuse, and almost uncontrollable.  At one point the nurses were running--running--my brother's hospital bed into the OR.

Yesterday Chris and I took the kids to a fall festival at a nearby parish.  Mary and Peter decorated pumpkins, jumped in a bounce house, and tried to score a basket.  

It was a beautiful, sunny, cool autumn morning.  Perfect for picking apples, which was our original plan.  It was supposed to be our annual family outing to Indian Ladder Farms.  Michael was especially looking forward to it.  

But instead he was in the ICU and he almost could have died the day before.

I sat with Chris and the children, eating lunch at the fall festival, and couldn't stop thinking about Michael.  He would have nothing to eat today.  Nothing to drink.  His esophagus is too fragile and the risk of another, potentially deadly, bleed is too high.  

My family has become so accustomed to these high-level emergencies that we cope by keep living, keep moving.  But sometimes the intensity of it hits me: he could have died.  Maybe I should be sobbing or shaking, but instead it's just a deep somberness inside.  

Somberness and profound puzzlement.  Why?  Why Michael?  Why is it that I could drive home, away from the hospital, windows down and music blaring, to enjoy a ham and cheese sandwich and warm cup of tea?  Why is it always Michael?  

So much suffering.  

And yet, he may be the happiest person I know.

He went five months with no food or drink, nothing except tube feeding overnight.  I cannot even fathom it, not for a moment.  No sip of water, no ice cream for dessert on Sunday, no warm bread with butter...  Nothing.  And Michael--not a complaint. No bitterness, no jealousy, no resentment.  Just acceptance.

The surgeon called my parents yesterday and related that, after Michael's breathing tube was removed and he could speak, one of the things Michael asked was, "What's your costume going to be for Halloween?"

I don't know why Michael has been given such a heavy cross.  But I do know that God is giving him the grace to carry it and that God is touching people through Michael's innocent and courageous witness.  

I still say, "Why?"  But maybe I should be saying, "Yes, Lord.  Yes to whatever You want."  

Because that is what Michael is saying.

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